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Karen’s Journal ~ 2013

Saturday, January 12, 2013

“Just keep telling her that you’ll be there with her and you’ll make it through this together.”

[I’m sure that is what she was wanting from me. Sadly, I did not do it enough. ]

Thursday, January 17, 2013

... Doctors often don’t agree with one another. It can be hard to get two to agree. It’s unnerving and very scary to us as patients when doctors do not agree on such an important diagnosis.

Friday, January 18, 2013 at 11:35am EST

Pray for my Mom. She’s being admitted to the Clarion hospital with either the flu or pneumonia. She has advanced pulmonary fibrosis and is 24/7 oxygen dependent. It’s not the pulmonary fibrosis that is ultimately fatal, but pneumonia. I won’t go see her, unless it becomes obvious she will not get out alive… Pray for things. I should not go see her because if I catch a cold, get the flu or whatever, my cerebral spinal fluid pressure will climb ever higher, and I will need an emergency trip to North Carolina. Stress causes instant high CSF pressure spikes, and this one is brutal.

Saturday, January 19, 2013 at 2:59pm EST

… As for my cerebral spinal pressure spikes, or increases, my brain got used to making too much cerebral spinal fluid for 23 years to compensate for the leaks. It will take a LOT of time for the pressure issues to settle, probably a year or so. If I get another leak and have it patched, than that will further increase the time for things to settle. My activities of daily living are restricted until this settles down.

Wednesday, January 23, 2013 at 12:27pm EST

My intracranial pressure is fluctuating a bit causing different symptoms.

Tuesday, January 29, 2013 at 2:52pm EST

I am confused with HP and LP myself. Prior to Dr. Gray putting two holes in my dura to relieve the HP, Diamox helped my headache when upright. My eye issues with rebound HP were blindness. It started with a little spot here and there going black for a second or two, then progressed to complete blindness that lasted about a minute! Dr. Gray put the holes in my dura at this point, and I have not noticed any more vision issues. I still have HP issues and need Diamox, just no eye issues. I think I alternate between HP and LP on the same day. I have a headache all the time, upright and lying down. I wonder how much of that headache comes from inactivity and my muscles weakening? My symptoms originally started with a car accident 23 years ago, but I think that I had undiagnosed HP with no leaks prior to that. I think my dura handled the extra stress from HP, until the car accident added more stress. I have virtually no support system other than my husband, and the board. My family doesn’t believe me. Since I had this problem for 23 years, I did not have the opportunity to make friends.

Wednesday, January 30, 2013 at 11:09am EST

This CSF crap began when I was 20. I did not have blurry vision with HP. I went straight to blindness. I had many other neurological symptoms too. I reached the maximum dose of Diamox and HCTZ, and my pressure/volume kept going higher. I posted in detail about this experience on the private [CSF Leak Facebook] group. I wonder if HP bothers us more because we leaked for so long? Not enough research exists to prove or deny that. Every time I feel a little LP, I wonder am I leaking again. … One of my neighbors, that I do not know very well may have the potential to become a good friend this summer. She has some health issues that prevent her from doing similar things as us, because of that I was not ashamed to tell her how much I need to rest. When we have been together since fall, we did not talk about our health the whole time. No one wants to hear that. We seemed to understand each other. I have a lot of acquaintances, but very few physical friends because telling them how much I need to lie down is embarrassing. I would feel better mentally if I went back to my usual exercise routine at the YMCA but HP is unrelenting if I do more than gentle exercise at home. Prior to seeing Dr. Gray, I forced myself to exercise through the most horrific headache everyday.

Thursday, January 31, 2013 at 11:35am EST

…If I had a child, I too, would feel guilty about not being able to do things other Moms do. … Brain fog Loss of short term memory My ability to follow and participate in verbal communication is diminished [, I also have] systemic issues with tendons (I do not know if this is from the leaks or the anti-biotic, Levaquin®) back, neck, head pain My muscles throughout my body get as hard as a rock and become very painful. I have other symptoms, that I cannot think of right know. I always have a headache and neck pain. At times, I do not think Diamox or HCTZ do anything. Yes, I feel like my brain is swimming in CSF. In the past when I shared with others what I was going through, I was rejected. So, I am very cautious about who I share this with.

Saturday, February 2, 2013 at 10:12am EST

My HP is out of control. I have spoken with Dr. Gray. If I cannot get it under control with 3000mg of Diamox per day, I have to go see her, and she will put another hole in my dura. I have been on 3000mg of Diamox for 48 hours now. I do not feel that it is helping.

Saturday, February 2, 2013 at 5:23pm EST

I hope that I make sense because this HP is out of control… I don’t think Diamox does anything. My pressure/volume is building. The HP headache is becoming worse, and some of the symptoms that I mention below are beginning to come back. I feel like I did in in the early stages of the out of control HP in late November/early December. I had to make an emergency trip to Dr. Gray. Dr. Gray said she would call me again today or tomorrow. If she does not, I will call her Monday. I am going through some old email to remember things about that HP in late November/early December. Despite two different anti-nausea medications, I got so sick that I could not keep food down. The blindness, very loud tinnitus. I lost my sense of smell and taste. I was very dizzy. My face felt like it was on fire. I could not sleep, even sitting up. I couldn’t balance. I feel like I can’t think more with HP than LP. Before Dr. Gray put in holes my opening pressure was 14 1/2. When my pressure/volume was out of control it my opening pressure was 15 3/4. BUT Dr. Gray didn’t go by just the numbers. She explained to me that my pressure was not going up because my dura stretched from the extra CSF. When my dura stretched, it pulled and irritated my cranial nerves, giving me all kinds of symptoms. Dr. Gray said that some people had a dura like mylar, meaning that their dura did not stretch. In these people, pressure would rise. Other people had a dura like latex that would stretch causing an increase in volume, and not necessarily an increase in pressure. Ever since my accident twenty three years ago that caused my CSF leak, I have a hard time following verbal conversations. I did not have a problem with that until that accident.

Dr. Gray has not mentioned a shunt. I saw her three times. Last September, she did patches in my mid-back. I believe she patched the wrong area this time because HP lasted only 24 hours. In October she patched my low back. Apparently, this is where my leaks were because HP has been out of control since. In December, I went back and she put two holes in my dura during two lumbar punctures. My pressure/volume continued to rise after the first one. Because she wanted these holes to continue leaking, she did not do blood patches or require me to lie down after the procedure. My worst symptom with HP is probably the headache.

Saturday, February 2, 2013 at 5:44pm EST

I forgot to add, the first time I saw Dr. Gray, she put several patches in my thoracic area. I was back in LP within a day. The next trip, she patched my lumbar area, and I have HP every day since.

What Is Wrong with My Hip

Saturday, February 2, 2013 at 7:55pm EST

My short term memory is bad. My husband says that I repeat things. [A lot!] You know what, I don’t remember doing it unless he points it out! I don’t know how to determine if a dura is like latex or mylar. I don’t know if Dr. Gray could tell on the CT scan, or my symptoms. Connective tissue disorders have been mentioned in the past, but nothing definitive. I believe the systemic tendonitis that began after Levaquin® was caused by that drug or the infection. Levaquin® saved my life from cellulitis.

[It also ruined her future life! No one discussed the life-long pain and complications from this drug!]

My left ilium [hip] is in an inflare and rotated posteriorly. My right ilium is in an outflare and rotated anteriorly. Unfortunately, I believe this was caused by an injury when I was younger that was never treated. [Fell off the swing when she was four.] These obliquities (spelling) cause muscle imbalances and microtrauma throughout my body.

I have HCTZ but Dr Gray did not want me to take it this weekend. I have pulsating tinnitus when my volume is up like right now. When my pressure/volume is good, I have no tinnitus. When it rises a little, I have a high pitched whistle that keeps getting louder the higher my volume/pressure goes. Then turns into loud pulsating tinnitus.

I will pray for you, too. I am glad to meet you, also. Many times I feel like my seemingly random symptoms must be psychological. Many of the people around me believe that if I say anything. So I say nothing about it. My Mom asked me tonight, “Would you go to Duke for the low pressure headache again, if you knew this was going to happen?” I told her “Yes.” She was insinuating that I made a mistake treating the low pressure headache…

Saturday, February 2, 2013 at 7:58pm EST

I wonder if the holes Dr. Gray put in last time healed, or if my brain is making CSF even faster.

Sunday, February 3, 2013 at 2:10pm EST

The doctor at Duke wants to work me into her schedule for a lumbar puncture to remove CSF and create another hole. She did this same procedure two months ago. I haven’t heard back on a date, but it will be in the near future.

Sunday, February 3, 2013 at 9:21pm EST

My cellulitis was very painful. It spread so fast that I could literally watch it spread! The cut on my leg was 2 and 1/2 inches long and down to the bone. It bled quite a bit. I had to go by ambulance to the ER. They cleaned, stitched it, and gave me a prescription for Keflex. All went well until about two days after I finished Keflex. My leg began hurting, but did not look infected. I went to my PCP. He gave me another prescription for Keflex. All went well again until about two days after I finished Keflex. My leg began hurting again, but did not look infected. I went back to my PCP again. I received a lecture on antibiotic resistance and no prescription for an antibiotic. [Doctors need to learn to *LISTEN*!!] Two days later, I had cellulitis from above my knee down to my ankle. I am not blaming my PCP because I agree that my leg did not look infected. My point is antibiotics being stopped too soon is not always the patient’s fault. That infection left my leg feeling like dead weight. I had to go to PT to relearn to use it properly.

Sunday, February 3, 2013 at 9:33pm EST

I saw a psychologist off and on for years since this began. I had to see her because the doctor at the pain clinic required it. She was downright hurtful. She treated me as if it was strictly anxiety and depression. Our relationship was adversarial. When I told her that I was going to Dr. Gray, she tried every psychological trick to get me to change my mind, when I refused, she ended our relationship. What did she have to be afraid of? Was she afraid that she was wrong, and my headaches had a cause other than depression and anxiety? I don’t like to tell doctors about my anxiety or depression either… they think anxiety and depression is the primary problem. I do not have a good way to handle my family talking about me. It does get to me. They treat me like I made a lifestyle choice to be lazy, seek attention from doctors, etc. For as long as I can remember, we were brought up to hide our physical pain if there were no obvious swelling or bruising. We were ridiculed as being hypochondriacs as kids. When I was 4 years old, I walked around on a broken foot for 4 days without complaining is one example.

Sunday, February 3, 2013 at 9:42pm EST

… I too, wonder why Dr. Schievink doesn’t do pressure checks. Dr. Gray got back to me. She wants to work me into her schedule for a pressure check, remove CSF, and put in a bigger hole. I don’t know when that will be. Probably within the near future.

Monday, February 4, 2013 at 2:13pm EST

…I don’t understand why people are unsupportive when you or I say something about surgery or some other procedure we had. Maybe it makes them feel vulnerable? I don’t know. It’s not like we talk about our health all the time. Sometimes, we want to tell them a little bit about ourselves but we do not want them to tell everyone else what we said! I feel betrayed when I later find out that they told someone what I said without my permission. Anything we type in private messages or in email is saved on computers other than ours and is not really private. Even though we do not show these messages to others, we have no idea if anyone reads these messages at Facebook. I noticed your disappointment with people that love to gossip. I keep to myself partly because of my pain, and partly because I am not the type of person that likes to run around. It gets back to me that the gossipers here gossip about me being ‘weird’ because I keep to myself… True friends will stick with you when you have a chronic illness… My doctor at the pain clinic will still see me. The psychologist at the pain clinic will not see me anymore. The doctor was (ineffectively) treating my headaches, so not seeing him is my choice. I would like to talk with someone about how I feel mentally, BUT it has to be someone that understands chronic CSF leaks. Otherwise, treatment goes down the anxiety and depression route again... I doubt any counselors, or psychologists are knowledgeable about CSF leaks unless someone close to them was treated by Dr. Gray or Dr. Schievink. I have not heard from Dr. Gray. Last night, my neck cracked very loud. I wonder if that changed my CSF flow? My CSF volume is still high, but not as high as it was before the crack. They are talking on the private forum about being overweight and HP. I am not overweight. I am 5’11“. My weight is 170 [pounds] and going down because HP makes it hard to eat. [She was 165 pounds at the time of her death.] … I have to lie down several times every day for an hour or two each time.

Monday, February 4, 2013 at 5:06pm EST

I never had a blind blood patch [up to this point]. The sad thing is, if any doctor for 23 years suspected a CSF leak, a blind blood patch in my low back would have worked. My leaks are around L4 and L5. I found Dr. Gray on my own. She officially diagnosed a CSF leak. My own doctors were dismissive of the idea when I mentioned my orthostatic headaches and CSF leaks. Maybe that intimidated them. They treated me for years with little success. A doctor from a prestigious university finds the problem on the first visit. I had very little headache for the first month after Dr. Gray patched me. Then my HP went nuts.

Monday, February 4, 2013 at 6:26pm EST

I took Levaquin® for a couple months in 2003. Cellulitis was very painful. More painful than the low pressure headache. My leg was an angry bright red and hot. During healing it turned purple. The pain went away when it was still purple. I believe my family thinks that if my low and high pressure were a “real” problem the local doctors would be able to fix it, and I would be as good as new. Since that’s not happening, the problem must be with me. I am lazy, seeking attention, etc.

Tuesday, February 5, 2013 at 2:02pm EST

Seems everyone says it takes 6 months to feel better from surgery. I wonder if it will take longer for long-term leakers? I definitely have HP, out of control HP. Every day it is getting worse. I am scared that I might blow another hole if Dr. Gray, and I cannot get a time set up.

Tuesday, February 5, 2013 at 8:42pm EST

My appointment at Duke is Friday morning. … I am getting a lumbar puncture, CSF removed, and I will not be required to lay flat for the hole from the needle to seal. In fact, we don’t want that hole to seal. We want it to continue to leak.

Tuesday, February 5, 2013 at 8:50pm EST

Dr. Gray put in two holes in December when my pressure/volume went out of control. I had some relief after the first hole. She removed 23 cc but that relief was short lived. Two days later my pressure volume was higher. She removed more fluid. I had some immediate relief both times. It took a few days for most relief because the cranial nerves were irritated.

Wednesday, February 6, 2013 at 12:15pm EST

I thought about your [relative’s] negative comment regarding you traveling to see doctors. Comments like that come from people that have never been sick, or had only common ailments that local doctors could treat. People that make those comments have no idea what we go through every day.

Wednesday, February 6, 2013 at 7:06pm EST

Our chronic illness makes it very problematic to maintain relationships with others. Our illness affects everyone of our relationships. The depression, resentment, anxiety, etc. build. Those around us do not understand how one day we can function almost normally, and the next day we can barely get out of bed. They can never truly understand our pain.

Wednesday, February 6, 2013 at 9:50pm EST

Going to Duke tomorrow. Things are not under control. I see the doctor Friday. Here’s a link for an idea of what I am dealing with:

http://mystory.kpaddock.com/FDA/Increased_Intracranial_Pressure_PubMed_Health_PMH0001797.html

Thursday, February 7, 2013 at 8:32pm EST

…I think the flu raises intracranial pressure. If you do get it, you may need more Diamox. I will let you know how it goes with Dr. Gray. I am kind of scared. She wants to leave this hole in my dura like she did in December when my volume went too high. This doesn’t make me nervous. She wants to use a bigger needle. That makes me nervous. I don’t want a low pressure headache.

Friday, February 8, 2013 at 5:02pm EST

I thought I had HP because my face and scalp hurt. I had no occipital pain like I had with low pressure for 23 years. My headache did not get better lying down. My opening pressure was 11 3/4. The very first time I was here with classic low pressure symptoms my opening pressure was 14 and 1/2. I am confused. She gave me a hole with a 20 gauge needle.

Saturday, February 9, 2013 at 12:39pm EST

I am confused. She put another hole in. She wants to get me off the Diamox. I did not take Diamox prior to the pressure check. I hope this hole doesn’t give me back the LP headache. I am confused. The first time I saw her my opening pressure was 14 and 1/2 and I had the usual LP headache. My opening pressure this time was lower than that, and it felt like the HP headache. Thanks for keeping me in your prayers. I have cysts.

[I do not recall her ever telling me this, nor can I find her telling anyone where they are?]

I do not know how many. If I had a magic wand, I would wave it and make both of us better!

Saturday, February 9, 2013 at 4:48pm EST

I feel slightly better today. The pressure issue is so confusing. How can my pressure be less than it was when I had typical LP symptoms? Dr. Gray think that this has to do with my pressure verses volume and stretchy dura. … I lose hope, too. It’s really hard to bounce back sometimes when I feel isolated physically from others. Thanks for praying for me. I pray for you, too. I always like it when we get less snow than they called for. A non-invasive way to check our ICP would be wonderful!

[NASA is working on this. Alas, too late for Karen. I’ll post details on Karen’s website.]

Sunday, February 10, 2013 at 1:50pm EST

I feel worse today than I did before I came to Duke this time. I am still in Durham. It’s hard to stay upright for any length of time. The pain is all over my head. It eases but does not go away lying down. I have to question whether I needed the extra hole she put in my dura. I would not be surprised if she wanted me to continue to wean off the Diamox to see how I feel, then if I still have problems to come back for patches. How can I go home and face the naysayers when this trip has, in fact, made me much worse? I am terribly upset!

Sunday, February 10, 2013 at 6:51pm EST

All I know is that my head hurts real bad. The tinnitus is loud and my eyes hurt. My pressure was 11 and 3/4, the lowest it has ever been. She put an additional hole in my dura and has me very slowly weaning off Diamox. This feels like low pressure because I am better lying down. … Not just with her, but sometimes I feel like I am a complainer. No, she did not mention a shunt. In hindsight, I think I was taking too much Diamox and my pressure/volume went too low, but my symptoms felt like high pressure. I am a member of one of the IH boards, but haven’t visited it for a week or two.

Sunday, February 10, 2013 at 10:36pm EST

… When I made the comment about feeling like a complainer, I meant it in the context of talking with doctors, and not so much in our conversations. … I feel hopeless now. The head pain, eye pain and tinnitus are horrendous! I feel like my face is going to implode on itself. I don’t think that I will be able to get to sleep without crying myself to sleep. The pain was much worse yesterday, then Saturday. Thanks for praying for me. I do the same for you. Hugs to you. Karen

Monday, February 11, 2013 at 9:58am EST

I heard from Dr. Gray. She wants us to stay a few more days. She put a 20 gauge hole in my dura on Friday to let leak. That hole in combination with Diamox made my CSF pressure go WAY TO LOW. Horrible headache, tinnitus, eye problems, etc. Right now she wants me to stop Diamox. My husband brings his work with him on these trips, but I still worry about his job…

Monday, February 11, 2013 at 10:18am EST

You’re coming to Duke this week. I am in Durham this week, too. Where are you staying? I am at the Comfort Inn. If we both feel up to it, we could go out to dinner or something. Friday, Dr Gray put a 20 gauge hole in my dura on Friday to let leak. That hole in combination with Diamox made my CSF pressure go WAY TO LOW. Horrible headache, tinnitus, eye problems, etc. Right now she wants me to stop Diamox.

Monday, February 11, 2013 at 10:53am EST

I am not sure if I will see her again. She wanted me to stay in town for a few days after stopping Diamox so I don’t know what will happen.

Monday, February 11, 2013 at 11:01am EST

She thought it was High volume, even though my pressure 11 and 3/4 was less than my original opening pressure when I first saw here. My pressure then was 14.5. I feel like crap. The head pain, eye pain and tinnitus are horrendous and unbearable! I feel like my face is going to implode on itself. My eyes became light sensitive yesterday. I cried myself to sleep last night from the pain. The pain was much worse yesterday, then Saturday. I told Dr. Gray everything above. She thinks maybe Diamox and the hole she put in Friday put me in low pressure. I am so confused.

Monday, February 11, 2013 at 11:11am EST

I thought that I had HP, but I think I was wrong. I am so confused. I feel so much worse now than I did before Friday.

Monday, February 11, 2013 at 11:24am EST

Yes, I talked with her today. She wants me to stop the Diamox. The nerves in my face have been irritated for the past few weeks. She thinks that I have a high volume problem because when she went to add fluid I complained about my face. I did not complain about my face when she removed fluid. I think those nerves are so irritated from low pressure that they fired random signals and that is why adding fluid hurt. I did not feel like my face was imploding until after I saw her Friday. Maybe stopping Diamox cold turkey like she wants me to will work.

[Later, Karen thought this was a bad thing to do.]

Monday, February 11, 2013 at 11:33am EST

I can be up for short periods of time. I could be up for longer periods of time before Friday.

Monday, February 11, 2013 at 3:00pm EST

I don’t know what to do. I can’t function like this at home, yet I have to because I have no support network other than my husband. She wants me to stay in town for a few days, so (I hope) she’ll do something (like maybe put a blood patch on the hole Jeff [Jeffrey Taylor, Dr Gray’s Physician Assistant] made in my dura) if I do not improve.

Monday, February 11, 2013 at 3:51pm EST

I am deeply upset about this. I think the original patches are NOT leaking. … She said she wants me to get better and not make multiple trips. If stopping Diamox is not enough, I don’t know what to do.

Monday, February 11, 2013 at 4:01pm EST

I was taking 3000mg of Diamox. I have been on 1500 since Friday. I can’t tell a difference, I HURT. I don’t know what she’ll do (if anything at all) if stopping Diamox is not enough, and this makes me anxious.

Monday, February 11, 2013 at 4:25pm EST

I have been thinking about you, but instead of her calling mine HP, she says it is high volume. I am going to send her a message later today mentioning the possibility of my facial nerves being so irritated from low pressure that they fired random signals and that is why adding fluid hurt.

Monday, February 11, 2013 at 4:30pm EST

My scalp, sides of my head forehead, all around my eyes, both cheeks and the skin between my nose and mouth all hurt. No, she did not patch me after she did the OP.

Monday, February 11, 2013 at 4:47pm EST

I feel like my face is going to implode since … Friday.

Monday, February 11, 2013 at 4:49pm EST

[Do your eyes ever hurt too? Feel like they are scratchy?] Yes, my eyes do that. This symptom started a few weeks ago about the time I increased Diamox.

Monday, February 11, 2013 at 4:52pm EST

I don’t think I am leaking from the original sites BUT I am not sure either.

Tuesday, February 12, 2013 at 9:08am EST

If I am still here, how would I get in touch with you? Dr. Gray said, she would patch me, if I need it after getting off Diamox. In December, I had HP not controlled by the medication, confirmed by Dr. Gray She had to create a hole in December.

Tuesday, February 12, 2013 at 9:49am EST

I have not been up much to tell how I will feel. I ate breakfast downstairs, and brushed my teeth with a slight headache. That is an improvement over yesterday.

Tuesday, February 12, 2013 at 11:42am EST

Just walking around the mall for a little exercise is a stress reliever.

[Karen rarely did this, even though I often suggested we go do it.]

I hope that, Dr Gray patches just enough this time to control your HP without blowing more holes. You have been though so much with all the failed patches and surgery.

I never realized how bad HP can get until December when 3000mg of Diamox and 100mg of HCTZ did not control mine. I did not know that chronic leakers have a lot of shunt malfunctions. [Another ‘leaker’] talks about her shunt on the forum. Maybe shunts fail from over working?

I feel slightly better than I did yesterday. We’ll see if stopping Diamox is enough. I have not been up for very long today, either. Walking more than 15-20 minutes is painful for me because I had bilateral tendonitis in peroneal and posterior tibialis anterior tendons for a couple years. Over a period of four years, I had 19 physical therapy prescriptions for tendonitis in multiple locations throughout my body. I believe the anti-biotic Levaquin® is responsible for this. The PT diagnosed tendonitis every time. Tendonitis is not an overuse syndrome for me.

My uncorrectable (without major surgery) pelvic inflare/outflare, posterior and anterior rotations do not help.

Since I found my current massage therapist who is trained in the John Barnes Myofasicial Release technique last year, I have not needed more PT. I look forward to meeting you.

Tuesday, February 12, 2013 at 2:50pm EST

I have been up for almost 3 hours and my headache is mild to moderate. I will probably lie down in a little bit. We’ll see if two 20 gauge holes (the one from December and the recent one) control high pressure without medication and keep me out of low pressure. If not, I will get a blood patch. … I would like a doctor closer to home to treat this, also. Before I came to Duke, the local doctors looked at me like I had 3 eyes when I would describe these symptoms. I was dismissed as being anxious and depressed. Anybody would be anxious and depressed if they felt like we do.

Tuesday, February 12, 2013 at 6:50pm EST

On Friday, the doctor put another hole in my dura (the sac that surrounds your brain and spinal cord) to let cerebral spinal fluid leak. That hole and my pressure reducing medication made my intracranial pressure go way too low, with horrendous pain and neurological issues.

Right now we are waiting until the pressure reducing medication is out of my system to see if I will need blood patches. We need to find a balance among the intentional holes she put in my dura, minimizing high and low pressure symptoms, and taking minimal medication for high pressure.

Tuesday, February 12, 2013 at 7:11pm EST

My head feels awful now when I am upright. It feels like a second half of the day headache. I had tendonitis in dozens of tendons. Most of the time, I had it in multiple sites and in multiple stages of healing, simultaneously.

Tuesday, February 12, 2013 at 10:13pm EST

WOW...This condition causes a roller coaster of emotions. When you leak after you were fixed, of course you feel more down, depressed, and discouraged. I know. The people around you don’t understand, and in most cases don’t care. Well, I care. I wish that I had the right words to say now, but I do not. Have you called … Keep me updated. I will pray about this. I do not know how many cysts I have. Diverticulti is mentioned in my records, so I must have some … any chance menopausal hormones may be involved? I am in perimenopause and get bad headaches from that. I have those headaches when I am upright and lying down. My perimenopause headache overlays my leaking headache. You can imagine how painful having two headaches at the same time is. Today, my headache is a second half of the day headache. Maybe more Diamox will be out of my system tomorrow. If not, I will need another blood patch.

Wednesday, February 13, 2013 at 11:27am EST

Thanks for asking how I am doing. I am still in NC. My face is burning again, and the headache is bad.

Wednesday, February 13, 2013 at 12:00pm EST

I thought that I felt better yesterday. Today, I don’t think so. Dr. Gray said she would patch me, if necessary.

Wednesday, February 13, 2013 at 5:34pm EST

I do not take hormones. I never tried any. Let me know how it goes with the therapist. I live in a rural area so my choices for therapists and everything else is limited. You might be on to something with regards to secondary Addison’s disease and no longer needing steroids. Like you said, reduce steroids under the care of a doctor. You don’t want another adrenal crisis. I have no idea what my cortisol levels are. How do you find someone to advocate for you with your health? Unless, I am really sick, I think I do a good job advocating for myself.

Wednesday, February 13, 2013 at 5:47pm EST

Dr. Gray is going to check my pressure tomorrow.

Wednesday, February 13, 2013 at 5:49pm EST

TODAY: The more I have been upright, the more my head, face and behind my eyes hurt. A few minutes ago, I lied down and the headache improved, but has not gone totally away. YESTERDAY: I had a mild-to-moderate headache this morning that progressively got worse later in the day. My eyes became a bit light sensitive later in the day. Lying down relieved the headache.

Wednesday, February 13, 2013 at 5:56pm EST

I hear ya about the symptoms changing. Mine do by the hour, and sometimes by the minute.

Thursday, February 14, 2013 at 8:26am EST

I have to have another lumbar puncture today. My intracranial pressure goes up and down. I thought I could tell the difference between high and low, but I was wrong last week. The symptoms can be exactly the same.

[Karen was taking a *lot* of Diamox to lower her pressure because she thought it was too high, when it was too low!]

Thursday, February 14, 2013 at 12:27pm EST

I see Dr. Gray at 4pm today for a pressure check. We may go home this weekend so Bob can physically be at work. He can and does bring his work with him, but his employer likes him to be physically present, too.

Thursday, February 14, 2013 at 1:07pm EST

The day after patches, I mostly stay in bed. I take things slowly for a while. We are on the 3rd floor at the Comfort Inn.

I am frustrated that I have not been able to exercise at home at our YMCA. Pressure issues have prevented me from doing that for a few months. I don’t know for sure what day we will go home.

Thursday, February 14, 2013 at 2:10pm EST

I see Dr. Gray at 4pm. The brain dead/brain fog feeling, what causes it? Diamox? HCTZ? CSF pressure changes? Permanent brain injuries from leaking? A combination of these things? I thought that I could tell the difference between high and low pressure. I was wrong. I worry about leaking again. Who doesn’t? I know that I am leaking now, but that’s because of the second hole. I will let you know how it goes after I see her. I can’t wait till we are well, either.

Thursday, February 14, 2013 at 8:36pm EST

We just got back after my lumbar puncture. My CSF pressure was 16 1/4. She added 5cc of Elliot’s B and I felt better. She patched the hole from last week.

Thursday, February 14, 2013 at 8:49pm EST

I am very confused with the pressure issues. My high and low pressure symptoms do not correspond with the number. My pressure numbers have varied between a low of 11 and 1/2 and 20. I have what feels like very slight HP, but I don’t know. I was sure that I had HP last Friday when it was low.

Thursday, February 14, 2013 at 9:00pm EST

Frustration, anger, anxiety, depression, sadness, confusion, fear of the unknown, and many other feelings accompany a pressure change. The fear of leaking again is very real. Others do not understand why we feel this way. … We just got back after my lumbar puncture. My CSF pressure was 16 1/4. She added 5cc of Elliot’s B and I felt better. She patched the hole from last week.

Friday, February 15, 2013 at 11:00am EST

We will probably go home tomorrow because of Bob’s work. They are wanting him. Because the drive is so long, 10 hours with no traffic, we have to leave very early.

Friday, February 15, 2013 at 1:05pm EST

My face hurts a little today. I do not have the all over headache. … We may go home tomorrow.

Friday, February 15, 2013 at 10:19pm EST

I have a little HP. I am really stiff, but that’s because I have not been moving much. It’s not that I want to go home, Bob’s employer wants him back, or else we would stay until Sunday.

Saturday, February 16, 2013 at 8:06pm EST

My hubby’s boss told him Friday that they wanted him to work Sunday, which is why we had to come home today.

[Sadly, I put my job before Karen, and she paid the ultimate price, when the Vishay ‘TFDU4301 drop in replacement for the TFDU4300’ failed, see: Does ‘Drop in replacement’ strike fear into your Soul? It should... [Resume anyone? I will never put anything before family again!]

Saturday, February 16, 2013 at 9:19pm EST

We came home today. I can tell my intracranial pressure is up. I have to minimize all bending, twisting and lifting until the patch heals. The higher intracranial pressure puts extra stress on it, which is why I have more restrictions again.

Sunday, February 17, 2013 at 7:30am EST

There is no quick fix. In my trips, I met several others with the same conditions. We arranged to meet over FB. We are all patients there for this.

Sunday, February 17, 2013 at 10:58am EST

If people knew what those of us with chronic spinal headaches/spinal fluid leaks, and the resulting rebound intracranial hypertension when doctors repaired those leaks go through on a daily basis, we would get more support and help from others. When this condition becomes more well known, this will become a reality. If it wasn’t for our parents and my husband’s job, I’d love to live in the Durham/Raleigh North Carolina area. I hate to come home each trip.

[A dream lost: Karen wanted to move to Durham or LA so she could meet more people and make physical contact with friends, not just on the computer.]

Sunday, February 17, 2013 at 12:18pm EST

I feel about the same as I did yesterday. I thought I had HP because my head pain was in front of my ears, so I took 3000 mg of Diamox. Apparently, LP and HP symptoms were exactly the same. I don’t think I was leaking. I think I took too much Diamox. Jeff put a hole in my dura on Friday with a 20 gauge needle. That is what she patched on Thursday. We live in a very rural area. More rural than Durham. I have to drive anywhere I go, and do things by myself since I do not have close physical friends. Well, I have one, but she has breast cancer that has metastizised. I do like to exercise at the YMCA, but have been unable to since my blood patches in October. Exercise is a good stress reliever. I have been leaking for 23 years, which is why I have not had the opportunity to make many physical friendships.

Sunday, February 17, 2013 at 3:30pm EST

I made good memories this time in NC. I met in person several others with my condition. I met all of them on FB several months ago.

Wednesday, February 20, 2013 at 9:57am EST

I don’t know if I am feeling high or low pressure. They feel this same. I feel like I did when I went to see Dr. Gray. My pressure was 11 1/4 when she checked it. Even if I was leaking again, it would be higher than that, because I am taking only 25mg of Topomax twice a day and no Diamox, yet I feel exactly the same. I don’t get it. Dr. Gray told me not to take Diamox. My Mom is in the hospital right now. She went yesterday with dehydration and fever.

Thursday, February 21, 2013 at 11:44am EST

Sometimes, I don’t know what to do, or what is affecting me. I worry about my pressure being too high or too low, my perimenopause hormones, the side effects of starting topamax last week, and my Mom. So many things. I don’t know what causes what symptom. Talking on here is the only outlet that I have. My body is so stiff and painful from not not doing regular exercise for a few months. I have underlying issues (that I do not think, but I cannot prove) are not related to leaking that cause this this. My Mom is doing about the same as she was yesterday.

Thursday, February 21, 2013 at 8:05pm EST

I don’t know for sure if I am having symptoms from Topamax. I have a rash on both feet that does not hurt or itch. I don’t know if that is from the drug or something at the hotel.

[If it was the hotel, I did not get it.]

Thursday, February 21, 2013 at 10:34pm EST

Tonight, I feel like I have HP. I had a massage tonight. Dr. Gray okayed me to for those. My massage therapist has a masters degree and two bachelors degrees all in health related fields and many certificates related to massage. She worked on the problem areas in my pelvis, my right shoulder, and both wrists. My right shoulder has been stiffening up. Probably because I am afraid to exercise it too much. My left wrist started to hurt a few days ago, and I don’t know why. I will get back to exercising. I love to exercise. It is hard, (mentally) for me not to exercise. I never know when my period is going to start. For the past 6 months, my cycles have ranged from 23 to 50 days long. I noticed that a week or two before my period begins my headache gets much worse. For 24-36 hours during my period, I saturate a ultra tampon every hour. It’s impossible to leave the house. Before my gynecologist will treat that, she wants me to have an ultrasound which requires that I drink 32 ounces of water to fill my bladder. I do not want this test because I believe that will put too much pressure on my dura. Fibromyalgia has been mentioned, but I don’t believe it. I believe all my other pains are caused by my pelvic obliquities. My Mom must have misunderstood the doctor. She is feeling better. They sent her home today. If she had a blood infection, they would have kept her longer. When she first told me she had a blood infection, I repeated it back to her a couple of times, to be sure I had it right, I am not sure where the misunderstanding occurred. I think of you throughout the day. Not many people know what we go through with this illness, especially after 20+ years!

Saturday, February 23, 2013 at 1:40pm EST

I hurt today. My head pain is there, but not too bad. It’s the rest of my body that hurts, especially my shoulders. I know if I did exercise other than gentle stretching, I could work this out, but I am afraid of blowing the patch. … I had a headache everyday for 23 years.

Saturday, February 23, 2013 at 1:55pm EST

I hurt today. My head pain is there, but not too bad. It’s the rest of my body that hurts, especially my shoulders.

Saturday, February 23, 2013 at 2:08pm EST

After my successful patch in October, I could tell the difference between HP and LP. LP was pain in the back of my head, and HP was pain in front of my ears. I went back this time because I was sure Diamox was not controlling my HP, because it did not in December. This time, I was taking 3000mg of Diamox when she checked my pressure, and it was 11 and 1/2. I told you she thought that was HP but a few days later patched the hole. I stopped Diamox on Sunday when we were in NC. On Thursday, when she patched the hole, my pressure was up to 16 1/4. This pressure is higher than it was when I saw her in December for actual HP symptoms with occipital nerve swelling. I have no occipital nerve issues now. I did not have a headache in the back of my head with my pressure at 11 and 1/2. My headache was all in the front of my head. When I saw her the first time in September, my headache was in the back of my head. I had typical LP symptoms. My pressure was 14 1/2, higher than it was this last time. These numbers seem so meaningless.

[Are they meaningless? Are there other things at work that we do not yet know to look for?]

Saturday, February 23, 2013 at 2:23pm EST

In my own case, the number is certainly subjective. Most of the research into this condition has been done within the past decade. I am doing very gentle exercises at home. The further out that I get from being patched, the more exercise that I will do. I know regular exercise in moderation helps most conditions. I was sure this time that I had HP…Now I can’t tell the difference between HP and LP!

Saturday, February 23, 2013 at 3:10pm EST

I would like to know why the symptoms changed to. Physical therapy may it easier to do lifting and bending. It all depends on what causes the soreness. PT can help atrophied muscles. PT won’t help pressure issues. You may have a combination of atrophied muscles and pressure issues. It would be great to find a PT that understood CSF leaks but I doubt many, if any, exist.

[Create yourself a a new market and become one of these PT’s! One of Karen’s friends here in PA is doing this.]

Saturday, February 23, 2013 at 3:33pm EST

In hindsight, my symptoms of HP and LP changed when Dr. Gray put the hole in my dura in December. She had to do that, because I was losing my vision from the HP. Apparently, that changed the dynamics, somehow?? I hope this last patch holds over the hole the second hole Jeff created on this last trip. I wish that I had a way to tell if the patch was holding.

Saturday, February 23, 2013 at 3:54pm EST

I had a thought. My HP and LP symptoms changed when Dr. Gray put a hole in my dura in December.

Saturday, February 23, 2013 at 6:26pm EST

My shoulders hurt like this before I went to NC. My pressures down there this time were 11 1/2 and 16 1/2. I could be wrong, but if my shoulder pain was related to leaking, I would have noticed a difference with one of those pressures? I did not.

Saturday, February 23, 2013 at 9:43pm EST

My head hurts, but not very bad today. My headache can change by the hour. My shoulders are becoming very tight and painful, especially my right one. My whole body is getting very tight. I have a tendency to get tight because of the obiquities in my pelvis, but I have not been able to stretch as much as I need to for that. My left wrist has been hurting a lot, and I don’t know why.

Saturday, February 23, 2013 at 9:52pm EST

My head hurts everyday, but not very bad today. My headache can change by the hour. I have the same thought many times, that is, I wish I could be around someone that understood so I would not have to put on my happy face for them! No explanation, just a mutual understanding. It would be so nice to live closer. Like I said on FB today, I don’t want attention, I want understanding. My shoulders are becoming very tight and painful, especially my right one. My whole body is getting very tight. I have a tendency to get tight because of the obiquities in my pelvis, but I have not been able to stretch as much as I need to for that. My left wrist has been hurting a lot, and I don’t know why.

Saturday, February 23, 2013 at 9:54pm EST

Our issues make it difficult if not impossible to have genuine friendships with normal people. My short term memory is awful, especially with verbal conversations.

Saturday, February 23, 2013 at 9:57pm EST

When I left she thought LP may be my problem because I had a fairly severe headache in the back of my head when my pressure was 16 1/2. That’s why she patched the hole that Jeff put in the week before. Physical therapy can help with tight back muscles. My problem is I have the underlying issue with my pelvis that cannot be corrected which predisposes me to tight painful muscles. [Issue from when she was four.]

Saturday, February 23, 2013 at 9:59pm EST

My self confidence has been negatively affected from 23 years of leaking.

Sunday, February 24, 2013 at 2:07pm EST

I know the feeling of being accused of attention seeking, lazy, a mental case, and so on. I feel sad, depressed, and this increases my feelings of isolation. Sometimes you can tell when a person asks you if they are serious by their voice inflection and body language. [Things which she studied.]

I hear the “maybe you need to get out more”. … When they ask questions about my health, I am very vague and censor myself because anything that I say can and will be used against me.

My pelvic pain is not from my female issues. It is from lax ligaments holding the pelvic bones together. The compensations extend the whole way up and down the kinetic chain.

[A new technique called ‘Prolotherapy’ can treat weakened ligament, or tendons. Many cases of back pain are not due to ‘discs’ rather the week ligaments that are not holding the discs in place.]

Sunday, February 24, 2013 at 2:09pm EST

I have not had too many physical diagnoses through my journey. I got blown off as having somatom disorder, major depression, and chronic fatigue syndrome.

Sunday, February 24, 2013 at 2:12pm EST

I cannot say for sure if you are still leaking. I can say that, when Dr. Gray put the hole in my dura in December my symptoms of high and low pressure became the same. Strengthening your core with the help of a physical therapist may improve some of your symptoms. Some of your symptoms may come from deconditioning. Those symptoms a good physical therapist can help.

Sunday, February 24, 2013 at 2:54pm EST

We are not getting much snow. We get a bit every week. You would probably think we get are getting a lot, but we don’t. When we were in NC in December one of the Valet drivers thought we drove through nails. He did not realize those were studs in our tires for driving through snow and ice. [He had never seen these and asked me about them.]

Sunday, February 24, 2013 at 4:50pm EST

Other things sometimes hear, “Forget about your headache and get on with your life”, and “Get up and do something, you’ll feel better.”

Monday, February 25, 2013 at 2:52pm EST

I don’t know if I am in HP or LP. I can’t tell if this patch is blown. I wish I could. I increased the Topamax this morning as I was supposed to. The rash on my feet has remained the same since I came home from NC. If it gets worse now, I will know it is the Topamax causing it. The rash doesn’t bother me. It’s not ichy or anything. I sssooo wish we could sort out LP and HP. It would make things so much easier to deal with.

Monday, February 25, 2013 at 6:04pm EST

I have not had any other adverse reaction to Topamax. I spend all day here every week day alone. It gets lonely. I suppose that is better than being around people that don’t get it. I can drive, and have a vehicle. ICP issues prevent me from going many places. I know what you mean about driving when you shouldn’t. Sometimes you have no choice but to drive somewhere regardless of how you feel. I have to do that, occasionally.

Tuesday, February 26, 2013 at 11:13am EST

My headache isn’t too bad. My shoulders, especially my right one is not calming down. This has not happened before. Myofascial release helps.

I never had PT my shoulder in the past, but had PT for my neck, back, elbow, and headache. Many of the exercises are the same. I began to do those exercises as HP allows. Tendonitis is starting in my left wrist.

I will do everything within my power to avoid going to PT. Going to PT with HP will not end well. I am getting another massage tonight.

Tuesday, February 26, 2013 at 5:11pm EST

I will make it back to exercise, eventually. Anything that increases spinal fluid pressure like grocery shopping (lifting the grocery bags), running the vacuum cleaner, etc are still no no’s for me.

[No one truly understood how much Karen exercised and how much she missed it!]

Wednesday, February 27, 2013 at 8:05pm EST

I am having a low pressure headache so if you do not hear anything from me for a day or two, that is why. I hope that I did not blow the patch.

Wednesday, February 27, 2013 at 9:14pm EST

I started taking Topamax when I was at Duke. I did a little research on it. The half life is 19-23 hours. I increased the dose from 25mg twice a day to 50 twice a day on Sunday evening. I pray that my low pressure symptoms today are because the drug is too strong for me.

Thursday, February 28, 2013 at 11:10am EST

I am lying in bed with the Netbook. I researched Topamax a little more. The half life is 21 hours with good kidney function, which I have. Steady state is reached after 4 to 5 days in patients with normal renal function. I began the higher dose on Sunday night, so my steady state may have been reached on Wednesday, and the dose was too high. This is what I hope happened, and not that I sprang a leak. I did not take it last night or this morning. My head is slightly better than it was last night. How are you feeling? I wish I had local people that understood. Not because we would talk about this all the time, (we would not) but they would understand if I had brain fog or needed to cancel at the last minute, etc.

Friday, March 1, 2013 at 1:52pm EST

We won’t be moving as long as our parents are alive. But, yes, Bob and I love it down there. I’m being treated in North Carolina for intracranial hypotension, or too low of spinal fluid pressure.

The world of modern neurology, which is what cerebral spinal fluid issues fall under, is relatively new compared to other areas of medicine.

Cancer cures and treatments were being fervently worked on many, many decades ago because it affects so many and there was a race on to find treatments, and cures.

[More people are employed in the search for treatments (not cures) than actually have cancer.]

Most of the research on Cerebral Spinal fluid issues has been done with past decade. Recently, they discovered that Cerebral Spinal Fluid can be a major influence in dementia, so the pace of Cerebral Spinal fluid research will pick up. [Read: here and here.]

Cerebral Spinal fluid problems will become more widely known as this research is done.

I don’t think that anyone even realizes the severity of the pain and limitations of intracranial hypotension, or any illness for that matter, until they have experience it so they really can’t comprehend the pain that we go through.

Saturday, March 2, 2013 at 3:20pm EST

I think that one of the patches in my dura has blown, putting me back in the low pressure state with the horrendous headache that is there all the time. It’s not just the headache. Your brain does not like the swings in pressure changes.

Saturday, March 2, 2013 at 9:47pm EST

I don’t think the leak that I sprung causing intracranial hypotension is as big as before.

Saturday, March 2, 2013 at 9:53pm EST

Bob asked me, why don’t you have her do another myelogram to find and seal up all your leaks. I doubt she would do another myelogram. She would not, nor would I want her to seal up every leak because the rebound high intracranial pressure would be horrendous.

Sunday, March 3, 2013 at 10:18am EST

I have a LP headache. I stopped the Topamax, and the headache is still there, just not as bad. I think that I blew the patch.

March 3, 2013 at 3:17pm EST

I had undiagnosed leaks before I became fit. I was never fat even then. In the year 2000, I joined the YMCA. I used the pool. I took chair yoga. That class is more geared toward senior citzens. I am 43. I am trying to do some exercises at home at the moment.

Sunday, March 3, 2013 at 3:21pm EST

I have multiple issues that cause headaches, CSF leaks, the issues that I previously described about my pelvis that throw off my whole kinetic chain, and my period. Yep, my period started a couple days ago. Usually, there is some degree of overlap among the headaches. I think that I can distinguish which is which. Dr. Gray wants me to cut Topamax down to 25mg once a day at night. I think that I might be leaking still. If I do go somewhere, people I know see me out and think that I am doing well because I look so good…

[From a friend after Karen’s death, it is relevant to what Karen just said: “Bob, I just read about Karen in the newspaper. I am so sorry for your loss, I had no idea she had been that sick! The last time I saw you guys in Walmart she looked better than I remember her in a long time, she did not look like she was in as much pain.

“I am sure she is in a better place now, without pain. She was always such a nice person, and she was lucky to have you to take such good care of her, and do all you could to help her relive her pain.”

Please see:  “You don’t look sick!”  —The Spoon Theory, by Christine Miserandino.]

Monday, March 4, 2013 at 4:06pm EST

Does your neck usually hurt? My neck always does. It has every day for as long as I have had headaches.

Tuesday, March 5, 2013 at 9:06am EST

I read your message on the forum about when to give up trying to fix your leaks. … You also said that Dr. Grant no longer wanted to shunt you because leakers have too many problems with shunts. … As for me, I think I have a small leak. My shoulders only somewhat calmed down.

The problem is my kinetic chain is off because of my pelvis and I have not been able to do those exercises for months. I am slowly starting to exercise again, despite the pain.

Wednesday, March 6, 2013 at 1:37pm EST

I feel like I have a slow leak. My head is not too bad for the first few hours after I get up, but then it gets worse. My shoulders have been giving me trouble, too. I have been feeling more depressed than usual. I am alone all day, every day.

[I really wish Karen would have told me how much she was bothered by my absence. I would have taken a different job that had more allowance for working at home often.]

Wednesday, March 6, 2013 at 1:40pm EST

I take 25mg of Topamax once a day in the evening.

Wednesday, March 6, 2013 at 9:46pm EST

I always have some degree of depression. My depression is worse when my headache is worse. I get so depressed spending so much time alone but who wants to spend time with someone that has to moderate their activities according to how they feel when how I feel can change every hour? I cry. I get out of the house as much as can to fight isolation. I try to use distraction to keep myself busy. Sometimes that works, sometimes it doesn’t.

[Learning anything she could learn. I really miss that. ]

Thursday, March 7, 2013 at 3:21pm EST

… I have tons of out of pocket medical expenses myself. Some websites that help me find money in our budget to redirect toward medical bills are  http://www.stretcher.com and http://www.savingadvice.com.

[Karen’s passion was to be frugal.]

Friday, March 8, 2013 at 3:59pm EST

I think leaks are probably not all that rare. They are misdiagnosed as chronic daily headache, transformed migraines, etc. Does Diamox give me a frontal headache? That is a very good question. When I went to see Dr. Gray a few weeks ago was on 3000mg of Diamox. I was sure my pressure was high because all the pain was in front of my ears. In actuality, I was in LP. The doctors around here don’t like to prescribe Ativan, Xanax, or drugs like that. Sometimes I think it would be nice to have them through the rough times realizing that we can become physically dependent on those drugs. I know what you mean about not liking to take all the drugs. Do you go to church? I have not went for years. [Hurt too much to sit and not move.] I have my usual level of depression today. It never goes away. It is always there to one degree or another.

Saturday, March 9, 2013

I dont think that anyone even realizes the extent of our illness until they have experienced it so they really cant comprehend the pain that we go through I know that I would never want them to go through this so I am okay with them being ignorant and not as supportive as I would like them to be than make them go through this and actually be capable of understanding I dont know if that really makes sense but I think it does!?!

• http://legacyconnect.ning.com/inspire/suicide-survivors
  

• www.selfgrowth.com/articles/The_Practicalities_of_Coping_with_A_Suicide.html
  

• http://muslaw.blogspot.com/2013/01/pennsylvania-real-estate-seller.html
  

• http://abcnews.go.com/Business/homebuyer-appeals-pa-supreme-court-homes-bloody-past/story?id=18317135
  

[I do not know why she wrote those links in this message? Was she thinking ahead to me selling the house someday? This is typical of Karen’s thought process, detailed and methodical.]

Sunday, March 10, 2013 at 10:51am EDT

I always feel kind of low. The degree varies. I take Amitrypiline (spelling) for depression. I don’t remember if I tried Celexa. I know that I tried several. I feel lethargic. Usually, I can make myself do things, but with the patches, I don’t know if I should. My husband is home several evenings during the week (not all because he goes to his Mom’s house, too, and the weekends.) [Actually going to Mom’s on the weekend was rather rare?] I have not tried Ativan. My ICP goes higher when I stress. Right now I think that I have a slow leak. … If I lost my dog, I would be out in my pj’s at any time of the night looking for him. We love our pets

Monday, March 11, 2013 at 9:06am EDT

I have one dog. I used to have two, but one died a couple years ago of chronic kidney failure. I could change my mind, but right now I am hesitant to get another one when something happens to Garth. I have felt this way since I began developing chronic tendon issues a few years ago. He is an older mixed breed.

Tuesday, March 12, 2013 at 11:23am EDT

Dr. Gray had me completely stop Topamax. I hope this helps, cause this feels like I blew a patch and am in LP.

Wednesday, March 13, 2013 at 1:19pm EDT

My head feels like a low pressure headache. I talked with the doctor on Monday. I will wait a few more days to make sure the medication is completely out of my system before contacting her again.

[This is why I did not want her taking Diamox later.]

Friday, March 15, 2013 at 7:07pm EDT

I don’t think that I feel fluctuations in the weather. I am always depressed, but when my head feels like this, as it has the past several days, I am even more depressed and crying. My pain will go away within about an hour of lying down. In the morning, before I get up I don’t hurt until I move. The head pain and neck pain will start when I move my arms or legs. That I don’t get because I am horizontal. Is it HP or LP because when I am up, the pain is mostly in the back of my head where it was before I was patched. Diamox and Topamax do not make a difference.

Friday, March 15, 2013 at 7:10pm EDT

I had another massage yesterday. When I was lying face down, she was working on my hips, and that increased my headache. It was the same pain that I have in the morning when I moved before I get out of bed.

Friday, March 15, 2013 at 7:17pm EDT

For all 23 years, my headache went away within a minute or two of lying down. Moving while lying down did not cause head or neck pain. That changed since the patches so I am confused.

Saturday, March 16, 2013 at 5:55pm EDT

I would love to lay down and chat or watch TV with you. Not having anyone around me that understands makes it all but impossible to make friends. You can move to Northwestern PA. When I first developed symptoms, I was still living with my parents. They thought that since the medical tests were all normal that I was making this up. So I could not look for answers. I began looking for answers just after we were married. I never came up with much until I began looking for orthostatic headaches last summer. I didn’t think that HP made me any more anxious than I usually am. Sometimes I get so anxious, almost like I am having a panic attack but this happened before I was patched, too.

Saturday, March 16, 2013 at 9:37pm EDT

I would have tried Diamox even if you hadn’t mentioned it. That is the only way to know whether it is high or low pressure. I theorize that the patches she did in October are holding, and the patch she did over the hole last month blew. I say that because when I went down to NC last month, at my first lumbar puncture, my pressure was 11 and 1/2 while I was on 3000mg of Diamox without the extra hole. At the second lumbar puncture with no Diamox and the extra hole, my pressure was 16 and 1/2 which felt low. She patched the second hole. I rested at the hotel the following day. We came home the next day. I could not rest like I was able to in October. Since that hole and patch would have been the weak area, I believe that it blew. Am I making sense? I love my family, too. If they had a sudden change of behavior, I would find it suspicious, like they wanted something. The change of behavior would have to be long-term, before I fully trusted them. I try to analyze my own behavior in situations with questions like, “What did I do to contribute to the other person doing or saying that?” I feel what sours my relationships are things that I have no control over, like our leaks, and in my case, my issues with verbal conversations and my very stiff posture from my pelvic obliquities. I walk differently than most people, and I feel judged because of that. I read Dale Carnegie’s, “How to Win Friends and Influence People.” I incorporate those people skills as best as I can with my limitations. I’d love to have deep meaningful relationships with people. I am the kind of person that likes to talk about things, usually more so in writing because of my own personal issues. I feel like I am in LP.

Monday, March 18, 2013 at 9:15am EDT

I am pretty sure that I sprang another leak from my symptoms. Pretend that your dura (the covering of your spinal cord and brain) is a water filled balloon that was patched because it was leaking. You would not want to bend or twist the balloon until the patch had set. That’s the same thing that happens with your dura after a patch. Rebound high pressure is another added stress to the patch. [Can someone make a drawing/picture of this?]

Monday, March 18, 2013 at 1:00pm EDT

I am sure that this illness is hard on families, especially those that live with us. Some days, I have no problem believing in myself and that this illness is real. Most days, I struggle with believing that as true.

Tuesday, March 19, 2013 at 6:11pm EDT

I found this on a website. [Which one??] It says it so accurately. Lastly, I want to point out that I DO UNDERSTAND why people don’t want to believe the claims of those of us who live with Chronic Pain (though such unbelief has caused me more suffering even than the terrible pain of my disease).

I actually believe it is a natural protective mechanism - I’ve experienced it myself. You look at someone whose life has gone to hell in a hand-basket, who has lost everything they cherished, whose life NEVER gets any better, only worse, and you NEED to believe that they had a hand in bringing this on themselves, or in perpetuating it, or you need to believe they are exaggerating, maybe even making it up. Because if all of that misery can befall a totally innocent person.… well, it would stand to reason then that …. that it could happen to ME!

THAT is the thought that is intolerable. THAT is a possibility that most people cannot admit, that they cannot allow to be true, for it would shatter the illusion that life is predictable, that one can count on being rewarded for one’s labors and one’s vigilance.

For those whose lives are comfortable, who have been richly blessed, that illusion probably is what keeps them going, gets them out of bed in the morning.

I have to admit, it was lovely while it lasted.

Wednesday, March 20, 2013 at 10:14am EDT

I hope that the waiting list to see Dr. Gray next month is not so long that I have to wait until May for an appointment. I eat salt. I am not sure about drinking salt water. I am curious, do you know how ice packs at the site of leaks work? I have some Tramodol. Interesting that it increases ICP. I will have to try that later today. … I haven’t had my eyes feel like they were going to pop out of my head since she put the hole in my dura in December. I needed that hole because my ICP was making me go blind among other symptoms. When my pressure was high, I took 50mg of HZTC in the morning and another 50 at night.

Friday, March 22, 2013 at 2:04pm EDT

Your story with CSF leaks, disability … your neurologist is just heart breaking! I can’t imagine what you are going through.

I too, wish that certain doctors and the decision makers and the insurance company decision makers would suffer a CSF leak for a month.

Maybe they would have compassion after that!

I don’t mind listening to your rants, I ‘get it’.

Disability insurance that you get through work is harder to fight denials because of the Employee Retirement and Income Security Act

[ERISA. They always fight you to pay any claim].

Without an attorney the chances of overturning the denial are practically zero. The financial saga has no end in sight with mounting medical bills and being unable to work.

Lost income from not being able to work, medical bills, disability insurance company wanting their money back, loosing friends, and losing our independence, no one chooses this life, yet many ‘normal’ people treat us like this is our lifestyle choice.

Most ‘healthy’ people do not believe our stories.

Friday, March 22, 2013 at 4:03pm EDT

Insurance company doctors are not ‘independent’ when they examine a claimant. Their loyalty lies with their employer…

Saturday, March 23, 2013 at 6:44am EDT

I will reply more later, but found this article on positive thinking and chronic illness.

http://www.psychologytoday.com/blog/21st-century-aging/201212/keeping-positive-outlook-when-dealing-chronic-illness

Thursday, March 28, 2013 at 4:44pm EDT

I went to the Y this week. I missed you. How are things with you?

I go back to North Carolina next week because I blew one or more or the patches she did that prevent spinal fluid from leaking. I can tell from my intracranial hypotension symptoms. I was like this prior to going to the Y this week.

After I come back from North Carolina, it will be many months again before I back to the Y. I cannot remember if I told you why I had the restrictions of no bending, twisting or lifting after the patches.

Pretend your dura (the cover of your brain and spinal cord) is a water filled balloon that you patched because it leaked. You would not bend or twist a balloon until the patch had time to set. That’s the same thing with your dura.

The restrictions on bending, lifting, and basically anything that gets your heart rate up put extra stress on the patches. Activities like vacuuming, laundry, unloading or loading the bottom rack of the dishwasher, etc make you bend or lift. The restrictions stay in place for long as I have rebound high pressure, which can be up to a year after the LAST successful patching.

Rebound high pressure is another added stress to the patch which is why the restrictions stay in place for so long.

Thursday, March 28, 2013 at 5:52pm EDT

Aww, I am saddened that you have been sick. I too, hope that you can make it back to all your classes next month.

Not bending is easier said than done. That includes normal activities of daily living. Vacuuming, laundry, loading and unloading the dishwasher, grocery shopping, and many more.

Friday, March 29, 2013 at 5:40pm EDT

I have an appointment for April 2 to see Dr. Gray again.

Tendonitis is flaring up on top of my left foot. I know the names of the involved tendons, but can’t think of them off hand. The custom Richie Braces do nothing for tendonitis in this location.

Saturday, March 30, 2013 at 9:30pm EDT

I am getting patched again by Dr. Gray on April 2nd.

Saturday, March 30, 2013 at 9:32pm EDT

[When do you think you started leaking?] About 10 days after the last patch.

Saturday, March 30, 2013 at 9:39pm EDT

Last September didn’t work. I was back into LP within 24-48 hours. She patched the wrong area that time, my thoracic spine.

October she patched my lower back. Boy did I get HP. I maxed out on Diamox and HTCZ and was still going blind among other symptoms. In December, she put in a hole. That helped HP but I still needed Diamox. In February, I thought that I had HP again, she put in another hole. Big mistake.

[Karen was sure she had high pressure and kept taking more Diamox when she actually had low pressure.]

My face felt like it was imploding that night. A few days later, she patched that hole. I felt like I began leaking 10 days later. My unproven theory is that the new patch in February would have been weaker than the patches from October, so maybe that is the only patch that blew. In February, she patched only the hole she put in a few days earlier.

Saturday, March 30, 2013 at 9:50pm EDT

I have a long-standing problem with depression. It’s not your typical depression. I feel better, mentally if I am up and about moving around or exercising. The depression is still there, just not so bad. After getting patched, I have to rest, not moving depresses me. I know to keep the long-range in mind, but I still get depressed. I think it may be because I have no local support other than my husband. I don’t have local friends either, so I sit at home alone after patches. No one around here believes me…

Sunday, March 31, 2013 at 11:40am EDT

… you get more sunshine to help with your depression, than we do here. I do not think sunshine has an effect on my depression. … I can rest and exercise as much as I want without someone thinking that I make myself sick for attention, or some other bizarre idea. … Pets give us unconditional love. I have a dog. I love my dog dearly. I will be heartbroken when he dies. He is an older mixed breed brown dog, named Garth. You can see him in some of my pictures here in FB. The Australian Shepards are no longer with me. They passed away. …

I’d love to get another dog when Garth dies, but I am not sure if I will. The extra house cleaning a dog requires is getting to be too much. Other than my husband, I have no support from anyone. After a blood patch when I have to restrict bending, lifting and twisting, I cannot describe how hard life is without help! I feel guilty that my husband comes home and does things after working a 12 hour day.

Monday, April 1, 2013 at 8:08pm EDT

As for coming to NC? I blew one or more of the patches. I know that because I am back in low intracranial pressure. That’s not too unexpected. I have been sick for 23 years, that too will make recovery take longer. She proved that this is what caused the low pressure headache and other symptoms. I cannot remember if I told you why I had the restrictions of no bending, twisting or lifting after the patches. Pretend your dura (the cover of your brain and spinal cord) is a water filled balloon that you patched because it leaked. You would not bend or twist a balloon until the patch had time to set. That’s the same thing with your dura. The restrictions on bending, lifting, and basically anything that gets your heart rate up put extra stress on the patches. Activities like vacuuming, laundry, unload or load the bottom rack of the dishwasher, etc make you bend or lift. The restrictions stay in place for long as I have rebound high pressure, which can be up to a year after the LAST successful patching. Rebound high pressure is another added stress to the patch which is why the restrictions stay in place for so long.

Tuesday, April 2, 2013 at 1:27pm EDT

The doctor checked my pressure with a lumbar puncture. My intracranial pressure was too low, which confirmed my symptoms. She added artificial cerebral spinal fluid. The increased pressure relieved the symptoms immediately. She did one glue and blood patch in the area that is most likely leaking. If low pressure symptoms come back the rest of the week, she will do another lumbar puncture and patch more places that are leaking. She doesn’t want to patch too many places at one time because the rebound high pressure will be uncontrollable.

Tuesday, April 2, 2013 at 3:03pm EDT

My pressure was 13 and 3/4. My pressure the very first time I was here was 14 1/2. She added 10cc of Elliot B. The increased pressure relieved the symptoms immediately. She did one glue and blood patch where I had the hole and subsequent blood patch in February. If low pressure symptoms come back the rest of the week, she will do another lumbar puncture and patch more places. She doesn’t want to patch too many places at one time because the rebound high pressure will be uncontrollable.

Friday, April 5, 2013 at 3:01pm EDT

On Tuesday, my pressure was 13 and 3/4. My pressure the very first time I was here was 14 1/2. She added 10cc of artificial CSF and my headache instantly went away. She did one glue and blood patch where she put the 20 gauge hole and subsequent blood patch in February. The LP headache came back, so she did more blood and glue patches today. She did not check my pressure. How are things with you?

Friday, April 5, 2013 at 3:41pm EDT

It doesn’t seem to ever end. I have been dealing with this for 23 years.

Friday, April 5, 2013 at 3:47pm EDT

How am I able to function? I push myself. I try to ignore it. I make myself exercise. Mentally, I love to exercise. We will stick around until at least Monday. That way, we will know whether I need to see her again on Monday.

Friday, April 5, 2013 at 4:13pm EDT

As for exercise, I found that too much or too little make me worse. I still have a lot of pain when I exercise, but that is the lesser of the evils. Thanks for keeping me in your prayers.

Saturday, April 6, 2013 at 1:42pm EDT

The doctor patched my dura (the covering of your brain and spinal cord) in more places yesterday. So far, that helps my low intracranial pressure symptoms, as it has in the past until I spring new leaks. Too high intracranial pressure symptoms take a few days to kick in, so they have not begun. It’s possible that I have an inherent weakness in my dura, that is responsible for chronic leaks. If you ever had myelogram and got up too soon, you know how severe and disabling a low intracranial headache is. Too low of intracranial pressure (intracranial hypotension), and too high of intracranial pressure (intracranial hypertension) have different, but equally debilitating symptoms.

[Sometimes the Hypo and Hyper symptoms are hard to tell apart.]

Saturday, April 6, 2013 at 3:58pm EDT

I am sending this to you because CSF leaks (that I keep coming to Duke for) cause pseudo-chiari with the same symptoms as chiari. Chiari is not always benign.

Sunday, April 7, 2013 at 9:05am EDT

Dr. Gray used glue this time. During the previous trips, she used blood. I have a headache today. My period began a couple days ago. I am not sure if this is a leaking headache, or a hormonal headache. My period causes headaches too. I took Zomig a little bit ago. That usually works for my hormonal headache and does nothing for my leaking headache. It takes a few hours to work. I should know in a few hours what kind of headache this is.

Sunday, April 7, 2013 at 4:10pm EDT

I am still in NC. She did one blood and glue patch Tuesday. She added artificial cerebral spinal fluid. The extra fluid takes away the pain instantly, like magic. She did not patch all the leak sites because we are trying to lessen the rebound high CSF pressure. By Thursday, I was back to the low pressure CSF state. Friday, she patched a few more places. Saturday, I was better. Today, things are not so great. My period started on Thursday, so I am not sure what symptoms come from my everyday problem, verses my hormones. If I feel that I need it, she will try patching more holes in my dura. The dura is the water tight covering of your brain and spinal cord that holds the cerebral spinal fluid. I think that I am going to trade in my dura for a new one.

Monday, April 8, 2013 at 9:32am EDT

Dr. Gray did one blood and glue patch and added Elliot B last Tuesday. LP came back by Thursday. Friday she did more patches, but did not do an lumbar puncture. Saturday, I had no headache. Yesterday it came back. Diamox makes it worse.

Monday, April 8, 2013 at 5:39pm EDT

My sister told me that someone she works with is having Chiari surgery at the end of the month. I tried to educate her that Chiari might be this persons problem BUT CSF leaks cause a pseudo-chiari. In this case the imaging studies will show chiari but unless the radiologist reading the films and/or doctor believe in CSF leaks, chiari surgery many not help this person. She didn’t seem convinced. Oh well, at least I tried.

Tuesday, April 9, 2013 at 8:07pm EDT

My pressure today was 10. That is the lowest it has ever been. I knew my pressure was either too high or too low from my symptoms. Last Friday she did patching, but no lumbar puncture so she did not measure my pressure or add Elliot B. I had a headache after the procedure Friday. On Saturday, my headache was gone. Saturday evening I had one sneeze. Sunday the headache was back. She added Elliot B today, so that currently helps with the headache. She patched areas today she did not patch last week, and re-did the patches she did last week. I asked her if the glue from last week might make it make it harder for the glue to stick. She said that may happen. She said the sneeze could have blown some patches. I did not ask her, but another possibility could be a cyst that did not show up on my myelogram burst.

Tuesday, April 9, 2013 at 9:00pm EDT

I saw the doctor again today here at Duke because my symptoms increased. I talk about my headache the most because spinal headaches are horrendous pain wise, but that is not the only symptom. My pressure today the lowest it has ever been. She patched areas today that she did not patch last week, and re-did the patches she did last week. I asked her if the glue from last week might make it make it harder for the glue today to stick. She said that may happen. She said the one sneeze I had on Saturday night could have blown some patches. Sneezes are known to cause leaks if your dura is weak. I did not ask her, but another possibility is a cyst on my dura that did not show up on my initial myelogram burst. That’s what recently happened to someone with my problem on Facebook. If my symptoms come back within a day or two, I will pursue the burst cyst idea with her. I have cysts on my dura. Burst cysts usually require surgery that is not done at Duke. The type of surgery that is best done in Los Angeles, CA. She gave me 8 patches. I had more needles in my spine because each patch required 2-3 injections of lidocaine in 2 or three places. I did it without sedation because the pain from the headaches is not nearly as bad as the pain from all those needles.

Tuesday, April 9, 2013 at 9:24pm EDT

Yes, my hubby works from here. Thank you for praying for me everyday. I do the same for you. The daily headaches have been this severe for over 23 years. This is why I don’t have close friends… That pain affects every part of my life, and daily functioning. I don’t talk about it too much with others because they believe that I make it up for attention, am a complainer, it’s mental, or I am lazy. The research into this condition has just taken off within the last decade so it is not well known and does not get the same respect as conditions that have been around for decades. The doctor can add artificial cerebral spinal fluid, and my headache instantly goes away, like magic for about 24 hours. That’s how long it takes for the fluid to leak out.

Wednesday, April 10, 2013 at 7:52am EDT

I saw Dr. Gray yesterday. My pressure today was 10. That is the lowest it has ever been. I knew my pressure was either too high or too low from my symptoms. Last Friday she did patching, but no lumbar puncture so she did not measure my pressure or add Elliot B. I had a headache after the procedure Friday. On Saturday, my headache was gone. Saturday evening I had one sneeze. Sunday the headache was back. She added Elliot B today, so that currently helps with the headache. She patched areas today she did not patch last week, and re-did the patches she did last week. I asked her if the glue from last week might make it make it harder for the glue to stick. She said that may happen. She said the sneeze could have blown some patches. I did not ask her, but another possibility could be a cyst that did not show up on my myelogram burst.

Wednesday, April 10, 2013 at 11:43am EDT

I assume it was my single sneeze that popped a leak because I was feeling better until that happened.

Wednesday, April 10, 2013 at 11:44am EDT

For me, lack of movement is just as bad as too much movement. Both cause pain.

Wednesday, April 10, 2013 at 11:46am EDT

For now, we plan to stay in NC until Friday morning, unless I start leaking again.

Wednesday, April 10, 2013 at 4:39pm EDT

… I have been lying down the whole time since she patched me. So I cannot say that I feel much different. No HP, so far. I am scared that when I blew the patches Saturday, that perhaps the glue tore a bigger hole my dura when the patch blew. The glue she put in yesterday may have covered the hole, but when that glue is gone, I might leak again because the hole is so big.

Wednesday, April 10, 2013 at 5:09pm EDT

I have been lying down the whole time since she patched me. So I cannot say that I feel much different. No HP, so far. I am scared that when I blew the patches Saturday, that perhaps the glue tore a bigger hole my dura when the patch blew. The glue she put in yesterday may have covered the hole, but when that glue is gone, I might leak again because the hole is so big. She did not say any of this, but it is my fear.

Thursday, April 11, 2013 at 11:52am EDT

We will come home tomorrow. I spoke with Dr. Gray. She wants to rule out POTS with a cardiologist at home. I do not believe that I have POTS. I believe that I have a leak that is not on my myelogram she did last fall. The hallmark symptom of POTS is an increase in heart rate from the supine to upright position of more than 30 beats per minute or to a heart rate greater than 120 beats per minute within 12 minutes of head-up tilt. Exercise intolerance is common. She is not convinced that it is hard for me not to exercise. I can go from lying down to immediately exerting myself without feeling faint, with POTS that would be impossible. … Yes, it is heart breaking to read the boards…

Thursday, April 11, 2013 at 12:44pm EDT

My massage therapist agrees that I do not have POTS. She sees me get up off her table and roll over. She has a masters and two bachelors degrees all in health related fields so she knows what she is talking about.

Thursday, April 11, 2013 at 1:06pm EDT

My headache is starting to come back. Dr Gray is not convinced that it is hard for me NOT to exercise.

[Karen *LOVED* to exercise, she did it almost to the exclusion of everything else, until she could not do it and not blow patches.]

I can go from lying down to immediately exerting myself without feeling faint, with POTS that would be impossible. I do not believe that I have POTS. I believe that I have a leak that is not on my myelogram she did last fall. I don’t know what to look for in a cardiologist.

[POTS tests were never done.]

Thursday, April 11, 2013 at 1:14pm EDT

Most, if not all, doctors in my area have a several month waiting list. I know that I do not have POTS. I want to get tested as quickly as possible, so we can get back to finding the leak. I believe that I need a new myelogram.

Thursday, April 11, 2013 at 2:07pm EDT

I am frustrated. I KNOW that I do not have POTS. My internet research says a tilt table test is the standard for diagnosing POTS. Putting weight on my ankles 30-45 minutes for the test will flare up my tendonitis.

Thursday, April 11, 2013 at 5:13pm EDT

Who ordered your POTS testing? My headache instantaneously went away when she added Elliot B…

Thursday, April 11, 2013 at 9:17pm EDT

Both my opening pressures this trip were less than my opening pressure the first time I saw her. Apparently I am not leaking like I was the first time… I feel trapped between damaging my ankles further, and getting tested for POTS. I KNOW this is a leak. Elliot B relieved my headache for a day both times she gave it to me this trip. I am frustrated and trapped.

[POTS testing required that she damage her ankles due to her tendonitis issues.]

Thursday, April 11, 2013 at 10:43pm EDT

… I am not resistant to getting tested for POTS. I am resistant to getting any test that pushes my ankle tendons further than their limit.

… My headache is back just as bad now as it ever was. It came back a day or two after each patching this trip. This is why I believe that I have new leaks not on the myelogram from September. I just don’t know what to do.

Saturday, April 13, 2013 at 1:36pm EDT

I am ‘chronicheadache’ on http://www.csfleaks.org. I rarely post there because it is searchable by Google.

[Sadly, http://www.csfleaks.org shutdown in early 2016, lots of good information was lost. It has been replaced with: http://www.inspire.com/groups/spinal-csf-leak-foundation.]

Saturday, April 13, 2013 at 9:39pm EDT

My hubby called Dr. Gray today. She is not sure, but she thinks it’s possible that some of the fibrin got into my CSF and irritated the lining of my brain. She said that happened to one other patient. She called in a medro dose pack prescription. That’s where you take a bunch of steriods in the beginning and taper down over 6 days. Couldn’t she see that on the CT as they injected? I am not convinced that that is the problem, but we will see.

Sunday, April 14, 2013 at 7:25pm EDT

Both doctors have successes and failures. I wish there was not such a divide on the group between doctors. I won’t participate in those threads. We are all in this to get better and provide support, regardless of what doctor we chose.

Tuesday, April 16, 2013 at 3:01pm EDT

My head feels like it is imploding with horrendous pain. My eyes get funny. Bending over makes me feel like I am going to fall over. My head feels the best if lie down with it being the lowest part of my body. I am not taking Diamox. … Diamox makes me worse. Both times she added Elliot B this month, I had complete headache relief for about a day.

Tuesday, April 16, 2013 at 3:10pm EDT

I hear your indecision when it comes to going to L.A. What to do? I wish there was an easy answer. It’s hard to spend all that money and not get any answers, or get worse. I am working on getting my stuff together for Dr. S. I thought that I had the Duke myelogram, but it looks like I have only the CT needle placement disks.

[We did have them. Duke seems to label the disks strangely. Make sure you always request a copy of your imaging and all of your reports. Also keep written notes, if you can, as things sometimes don’t make the records. I’ll be putting Karen’s images on her website so people can study them and hopefully learn something, not sure what?]

Thursday, April 18, 2013 at 9:44pm EDT

Nothing new with Mom today. I feel awful. I can feel my brain resting on the nerves to my eyes. My face and scalp burn. My head is imploding. I am nauseated, and many more symptoms. My Mom has underlying advanced pulmonary fibrosis which is terminal. It’s not the pulmonary fibrosis that kills her, but the complication of pneumonia. Every time she gets pneumonia, we think of that. Thanks for telling me that I should not be upset with myself for not being there. I feel so guilty over not being there … Since coming back from Duke, I have crying spells everyday. My pressure is very low because I am having eye issues, ear issues, and the headache or my head feels like it is imploding with horrendous pain. Bending over makes me feel like I am going to fall. I don’t feel like this when my pressure is slightly low. When it is slightly low I have a very bad headache in the back of my head near my neck. Right now the pain is all over my head. The pain is horrific. It affects everything, more so than before. I have no way to stop the pain. I don’t know how to manage myself. I have no where to go for the eye issues, ear issues, and the headache or my head feels like it is imploding with horrendous pain. Bending over makes me feel like I am going to fall. … I think she agrees to the large volume blood patch because I am not going away. I can’t. I am too sick. I have crying episodes everyday since coming home because the pain is SO bad! Enough about me.

Thursday, April 18, 2013 at 9:51pm EDT

I am doing terrible. I don’t have much upright time. If I try to stay up very long, I would collapse. Until, I lied down for several hours, my vision would be awful, and I would be dizzy, and the nausea would increase. My head feels like it is imploding. Each time Dr. Gray added Elliot B this last trip these symptoms went away for about a day. Each time she measured my opening pressure this month, it was less than it was the first time that I saw her last fall. … I know my pressure is just as, if not lower than it was. Diamox makes me much worse. The pain is horrific. It affects everything, more so than before. I have no way to stop the pain. I don’t know how to manage myself.

Friday, April 19, 2013 6:21am EDT

From: Karen Paddock

To: Dr Gray

Subject: horrific pain

Headache and other symptoms are horrific. I find it difficult to accept that 3, 250mg Diamox taken 2 days prior to my pressure check on April 9 lowered my pressure more than 3000mg taken daily did when I had a pressure check in February, unless I am currently leaking. My pressure on the 9th, was lower than my pressure last fall when I first saw you.

Thanks,

Karen

From: Dr Gray

To: Karen Paddock

Sent: Fri, 19 Apr 2013 14:25:41 -0000 (UTC)

Subject: RE: horrific pain

12:30 Tues ..I put you on…

Friday, April 19, 2013 at 8:10am EDT

We have such important decisions to make, and don’t know what right decision is. No guarantees that anything will help. We are scared. I am thinking about going to Dr. S. too. Some of his patients with crappy duras go back multiple times because they keep springing new leaks. … My headache and other symptoms are horrific. My head feels like it is imploding. The pain is horrendous. My eyes are very light sensitive. Every time I move my head, I am dizzy and my eyes go funny, and my brain feel like it is hitting the inside of my skull. My vision is blurry. I find it difficult to accept that 3, 250mg Diamox taken 2 days prior to my pressure check on April 9 lowered my pressure more than 3000mg taken daily did when I had a pressure check in February, unless I am currently leaking. …

Friday, April 19, 2013 at 9:48pm EDT

I am home, but leaving again Monday. Each time the doctor at Duke added artificial cerebral spinal fluid earlier this month, the symptoms in the next paragraph went away for about a day. Each time she measured my opening pressure, it was less than it was the first time that I saw her last fall. She patched everything that looked suspicious from my September myelogram with over 3 rounds of patching earlier this month. She didn’t patch everything all at once because the rebound too high intracranial pressure gets too bad.

Well, no high pressure developed as it should have. I went right back to low pressure and the associated symptoms. I have many symptoms of too LOW of intracranial pressure. I am home, but leaving again Monday. My head feels like it is imploding with horrendous pain. My eyes get funny. Bending over makes me feel like I am going to fall over. Blurry vision, ear issues, and other symptoms.

Friday, April 19, 2013 at 9:54pm EDT

Because my symptoms are so horrendous, Dr. Gray is working me in on Tuesday. I am still considering Cedars.

Friday, April 19, 2013 at 10:12pm EDT

I am not sure what I would have done if I couldn’t have gotten back to Duke. Like you, I daily tolerate pain that would make others pass out…we have no choice. But after this last trip, the pain got so much worse. Pain meds don’t help.

Saturday, April 20, 2013 at 7:37pm EDT

I have about reached my limit with the intensity of pain that I can tolerate.

Earlier this month, she did three rounds of patching in my spine. The largest round was 8 patches. Each patch consists of 4-5 injections (3-4 injections of a numbing agent, and 1 blood and glue patch.

I go through the procedures without sedation because the pain from that many needles in my spine is not as bad as the pain that I feel daily.

So when I complain of pain as I have recently, it is really bad.

My head feels like it is imploding with horrendous pain. My eyes get funny. Bending over makes me feel like I am going to fall over. Blurry vision, ear issues, and other symptoms. These symptoms are an every day thing now.

The doctor did a couple lumbar punctures earlier this month. Both opening pressures were lower than the first time I saw her last fall. Both times, artificial cerebral spine fluid infusions temporarily relieved symptoms for about a day.

The low opening pressures and artificial CSF infusions are evidence that I have continued leaks.

Sunday, April 21, 2013 at 9:59am EDT

The thing with an abdominal binder is if worn too long, your core muscles will become weaker.

Sunday, April 21, 2013 at 7:20pm EDT

I am going to Durham tomorrow. My pain is bad. The abdominal binder helps, but does not relieve it. Another reason that I feel down regularly is lack of socializing with others. I don’t mean on Facebook but in person. I have only one physical friend. It seems like when I talk with others, that I am the one to initiate contact. They don’t. Maybe I say or do things that they interpret in a way I do not intend? I wish I knew. I read the Dale Carnegie book, “How to Win Friends and Influence People.” My condition limits what I can do to get out and socialize. It’s lonely. I know you understand. I don’t get help from others while recovering from patches, either. Oh well, I don’t have to return the favor when they don’t do anything to help.

Tuesday, April 23, 2013 at 7:58pm EDT

… the doctor did a pressure check. My pressure was 10.5. The first time I saw her it was 14.5. … She did a new myelogram. She wasn’t talking to me but I heard her make a comment that she saw something on this myelogram that she did not see on the older one. The PA did 9 patches. I may go back later this week. I am supposed to rest in bed for 5 days. When I am home, I can’t rest like that because I don’t have support.

Wednesday, April 24, 2013 at 8:57am EDT

… The pressure check confirmed [I was leaking]. My pressure was 10 1/2. The first time I saw her it was 14 1/2. She did a new myelogram. She wasn’t talking to me but I heard her make a comment that she saw something on this myelogram that she did not see on the older one. Jeff did 9 patches. Dr. Gray told us not to leave town in case I need to come back. … I am supposed to rest in bed for 5 days.

Wednesday, April 24, 2013 at 9:51am EDT

When I heard her say that she saw something she had not seen on previous myelograms, I did not say it but thought to myself I knew that I was leaking because I know my body.

Wednesday, April 24, 2013 at 3:10pm EDT

Developing spontaneous leaks since last September concerns me. I usually don’t complain about the pain being so bad, but it was horrendous. In addition to the pain, my eyes were light sensitive, I was dizzy, nauseated, and my brain felt like it was hitting the inside of my head. I’ll know more tomorrow and the next day how I feel, since she pumped up me up with Elliot B. My back hurts a lot from the patches, but I expect that. Bob has not called a chiropractor. He said his back currently doesn’t hurt as bad as it did.

Wednesday, April 24, 2013 at 9:51pm EDT

My intracranial pressure was one of the lowest readings ever yesterday…objective evidence of more leaking.

She did a new myelogram, and found new leaks. My last myelogram was September. She told us not to leave town for a few days I need to come back. Developing new spontaneous leaks since September concerns me.

I usually don’t complain about the pain being so bad, but it was horrendous.

In addition to the pain, my eyes were light sensitive, I was dizzy, nauseated, and my brain felt like it was hitting the inside of my head.

I’ll know more tomorrow and the next day how I feel, since she pumped up me up with artificial cerebral spinal fluid. My back hurts a lot from the patches, but I expect that.

Friday, April 26, 2013 at 11:32pm EDT

I am back in LP…It’s not as bad as it was before I saw Dr. Gray this time. Dr. Gray is going to do more patching on Tuesday. Oh well, at least my pressure check on Tuesday and new myelogram substantiated my recent complaints. I had no trauma since my last myelogram [In September], but I have new spontaneous leaks.

[I’m not sure sneezing counts as spontaneous?]

Saturday, April 27, 2013 at 11:58am EDT

Listening to Mom talk about her death, and what she wants is very hard. I do not to discourage her from talking about it. I don’t tell her that it’s not that bad. I don’t want her to feel that I minimize her feelings. She talks about how no one knows how much she suffers. These conversations would be difficult if I was healthy. Things are all the more harder, when I have the same emotions with my own long-standing illness.

Saturday, April 27, 2013 at 12:37pm EDT

I feel like giving up. Dr. Gray has not found the right area to patch. Things keep happening with Mom. Life is depressing. The illness is not well known, so we get no respect from others. I have a hard time dealing with that, especially now when I am *expected* to do things. I don’t talk about my problem all the time because no one wants to hear that. Chronic CSF leaks just get to be too much for me. You said it better than I could when you said life circumstances which we can’t take care of business because of our limitations are really hard.

Saturday, April 27, 2013 at 1:42pm EDT

I am in LP, but I don’t think that it is as bad as before. Dr. Gray is going to do more patching on Tuesday. I don’t think that I am blowing them. I think she just didn’t find the right location. My pressure check on Tuesday and new myelogram substantiated my recent complaints. I had no trauma since my last myelogram, but I have new spontaneous leaks. …

Saturday, April 27, 2013 at 1:56pm EDT

Making the decision what to do treatment wise is difficult. I, like you, sometimes procrastinate thinking if I wait the problem will go away on its own. If this next round of patching doesn’t work, I will contact Dr. S. If I went to L. A., it would be nice if I found someone on the forum to share a hotel room. Rooms usually hold 3-4 people so my hubby and I could share with someone. They seemed surprised when my pressure came back low. … I’ll see what the difference is when the myelogram results are on my Duke Healthview online account.

Saturday, April 27, 2013 at 1:57pm EDT

You are SO right when you say that we know our own body and have to be our own advocate!

[YES! Study and learn all you can so that you are an informed patient.]

Saturday, April 27, 2013 at 2:44pm EDT

The doctor is going to patch more areas Tuesday. If she can’t get this under control soon, I am going to see a doctor in Los Angeles, CA. He is doing research, too.

Sunday, April 28, 2013 at 4:02pm EDT

Thanks for praying hard for me about Tuesday.

This will be the 5th time this month that I am patched. I began seeing Dr. Gray in September. She patched me in October and I went into HP.

HP stopped me in my tracks from doing anything. LP does too, but in a different way.

LP and HP requires me to rest between activities. Both affect my ability to do activities of daily living. I try to keep myself in shape physically, but it’s not easy. My husband is my only support…

Sunday, April 28, 2013 at 4:07pm EDT

I don’t know about doing a whole dura transplant, but the Dr. in LA specializes in replacing sections of dura.

Monday, April 29, 2013 at 6:13pm EDT

I am back in LP. My head is imploding, dizziness, the pain is out of this world. I hope that Dr. Gray does not give up on me. I am worried. I see her tomorrow at 1pm.

Tuesday, April 30, 2013 at 2:43pm EDT

I saw Dr. Gray today. She did nine patches. She injected a combined total of 30cc of blood and glue into my epidural space to prop up my pressure. My back pain is pretty bad at the moment, but my head feels great. I took pain medication a little bit ago for my back. She didn’t think that I was leaking. She mentioned Dr. Schievink’s dural reduction surgery.

Tuesday, April 30, 2013 at 5:10pm EDT

… We’ll see what these new patches do before deciding what to do next. In December when I was here for HP, she said that I had a stretchy dura. Tuesday my pressure 10 and 1/2 was lower than my pressure in February. In February, I was taking 3000mg Diamox and my pressure was 11 1/2. I am very scared. My headaches now are worse than they were when I began seeing her last Fall. Last September my pressure was 14 1/2. Did the few months that I had HP stretch my dura. I want to baby the patches that I got today, but I don’t know how to do that with Mom. The stress of my Mom’s latest episode didn’t cause my headaches to get worse. They were worse before that.

[Karen’s mother is very ill, and still is, down to 87 pounds. Karen was always worried that her mother would die when we were out of town for Karen’s treatments. This added a lot to Karen’s stress level. Worries that, in the end, were wasted because her mother is still here and Karen is not. Shows how pointless it is to worry about the future!!]

Tuesday, April 30, 2013 at 5:14pm EDT

I was on no Diamox for my pressure of 10 and 1/2 Tuesday. Unlike February when I was on 3000mg of Diamox and my pressure was 11 and 1/2.

Tuesday, April 30, 2013 at 5:21pm EDT

I do not have HP now. Thanks for asking about my Mom. She is doing the same as yesterday. We will probably go home on Thursday or Friday. Bob is with me. He brings his work with him.

Tuesday, April 30, 2013 at 8:37pm EDT

She thinks that my dura stretches like latex, whereas other people have a dura like mylar that does not stretch. Someone can have a stretchy dura, be unable to make enough CSF to fill it, NOT be leaking, and have a low pressure headache when upright. When said person is lying down, they would have no headache, but when they are upright all the CSF would flow out of their head and into their spine. Giving the person a low pressure headache even though they are not leaking. Back in December when I had a problem with high pressure causing blindness and other weird symptoms she told me that I had a volume problem rather than a pressure problem. My brain had no problem filling my stretchy dura then. My pressure was 20 in December. My pressure was 10.5 this trip. How come my body now has trouble filling my stretchy dura, if I am not leaking. I don’t get it. I am very scared!

[Sometime around this time frame Karen told me that “I thought I’d be healthy by now and on the way to being healed so we’d have a life.”]

Tuesday, April 30, 2013 at 9:28pm EDT

I have a high pain tolerance and usually push through, but not with this pain. I took pain medicine. I don’t know what she saw different. I didn’t ask because I wanted the new myelogram… I’ll wait until the record is online and read it. It is confusing that my pressure is lower now without Diamox. That’s why I think that I was leaking.

[Understand that what Karen could tolerate for pain would leave most of the population of the world as withering, screaming, bawling balls of flesh flopping around on the floor. ]

Tuesday, April 30, 2013 at 10:10pm EDT

Dr. Gray didn’t do a large volume patch, like she said she would. She did targeted patching. A student did 9 patches. The total volume of blood and glue was 30cc. This total volume would be like adding 30cc of Elliot B. I didn’t ask, but I assume she could see my stretchy dura on the myelogram. I think Dr. S’s new procedure where he inserts a catheter to put pressure on the dura sounds less invasive than dura reduction surgery. I remember reading on the forum that Dr. S discussed it with them. She didn’t do an OP this time, but know it was low. I was fine without getting another hole poked in my dura. I plan to lay flat all day tomorrow. We might go home on Thursday. I’ll recline the seat, although it doesn’t lie flat.

Wednesday, May 1, 2013 at 9:31am EDT

I am definitely in HP now. I want to take a little Diamox, but Bob said no until I talk with her. I sent her an email this morning, and just left a phone message because it’s getting worse.

[I did not want her taking it because of how she could not tell them apart in February, and taking it could have complicated any testing Dr. Gray might want to do. In the past, we had to wait days for the Diamox to get out of her system, see above. In the end, I was wrong and Dr. Gray told her to take Diamox.]

Wednesday, May 1, 2013 at 9:44am EDT

I ate this morning, but I am starting to feel like throwing up. HP makes me fill like throwing up. LP does not. When I pack my medication, Bob grumbles that I take so much.

[Poorly arranged in several plastic bags. I like things to be organized so they can be found in an emergency.]

I remind him that I take only three medications. I bring the rest because she may prescribe them again. Why pay for another prescription when I already have it.

Wednesday, May 1, 2013 at 10:10am EDT

When I had a misdiagnosis of rheumatoid arthritis, I took 5mg of prednisone daily for 5-6 years. It made me gain weight.

[Steroids thin skin and other connective tissues when used chronically. Did this contribute to Karen’s “Crappy Dura”?]

Wednesday, May 1, 2013 at 11:54am EDT

She just replied to my email and said to try Diamox. I know this is HP because LP never made me nauseous in the past, but HP does. I had to take Zofran earlier today. Every other time this month she patched me, I felt good for about 24-48 hours than went back to LP, a second reason that I believe this is HP.

Wednesday, May 1, 2013 at 2:27pm EDT

… I feel that they are both doctors researching this condition and want to help patients. I feel terrible, and just threw up. I sent Dr. Gray a message. She is probably sick of hearing from me.

Wednesday, May 1, 2013 at 3:42pm EDT

Zofran did not help. I have another anti-nausea medication here that starts with a p, but haven’t tried it. It didn’t work in the past either. I took a 250 Diamox almost an hour ago and don’t feel much different. I am tempted to do what I did before, take one 250 every hour until I feel better, but she did not say to do that.

Wednesday, May 1, 2013 at 5:17pm EDT

The last time that I had HP, I felt better up for an hour or two, then I felt worse. Propping myself up on pillows helped. Not so this time, which I don’t understand. This time, I feel bad upright and lying flat. So far, I’ve thrown up twice. I am trying to be real careful throwing up to keep from blowing a patch. I would try a cold wash cloth, but housekeeping took our towels this morning, and hasn’t brought them back. I don’t know any pressure points. Are pressure points in the same place for everyone? I appreciate your helpful suggestions. If you have any more, let me know. I should have only taken Diamox twice, but since it came right back up both times, I’ve taken it a total of 4 times.

Wednesday, May 1, 2013 at 7:54pm EDT

HP is out of control. I’ve kept almost nothing down. I even threw up Diamox a couple times and had to take it again. Zofran is not all that helpful. I talked with Dr. Gray. She said that I can take Diamox every 3-4 hours. I am not sure that is enough. Last fall it took 5-6 weeks after patching for HP to get out of control. Not so this time. HP is out of control the next day.

Wednesday, May 1, 2013 at 8:49pm EDT

Rebound high pressure blew out my previous patches in either February or March. Those patches held since September. The patches blew out after 5 months of being sealed. So all the activity restrictions are in place again… The last time, I tried all three medications that reduce pressure. My brain makes so much spinal fluid that wasn’t enough. I started one of the medications today at a pretty high dose, but I am still vomiting, among other symptoms, from the pressure. High pressure has it’s own symptoms, including a different, but just as severe headache, eyesight changes, and others. Living with a spinal headache for nearly 24 years certainly changes my perspective.

Thursday, May 2, 2013 at 11:02am EDT

The covering of my brain and spinal cord that is supposed to be water proof to hold the fluid is poor quality. Not sure anything can really be done about that.

Thursday, May 2, 2013 at 4:49pm EDT

It’s the feelings of isolation from not being able to exercise as much as I like that get me down. My back is very stiff and I walk a little different, I think that that turns off a lot of people. My stiff spine/neck makes it appear like I am being very direct and serious when I talk, even if I am not. I know what you mean about convincing yourself that people will be better off without you. Anything below my pressure being 16, I have a LP headache, but when my pressure gets down to an 11 or less, the pain does not go away upright or lying down, and my vision becomes affected. This last trip to Dr. Gray, my pressure was 10, I don’t know what I will do if that happens again. I rarely have sinus problems. If I do, it’s a head cold. I have allergies, but they have never given me a headache.

Thursday, May 2, 2013 at 6:36pm EDT

I have slight HP. It’s HP because putting on my binder makes it worse. Dr. Gray said that the extreme HP may have went away because my body absorbed the liquid part of the blood. I think that might be part of it, but not all of it. If that was all of it, I would have gotten extreme HP immediately after her procedure, and not 6-18 hours later. I think the extreme HP went away because I blew a patch in my sleep.

Thursday, May 2, 2013 at 6:39pm EDT

We are going home tomorrow.

Thursday, May 2, 2013 at 6:51pm EDT

I am thinking about going to LA. If this doesn’t work, that’s the next step. She injected a total of 30 cc of blood and glue into my epidural space. Even if I am leaking, that much volume would displace CSF in my dura and raise my pressure. I think glue stays in there about a month. I plan to have all my stuff ready for Dr. S before then. If we went to LA at the same time, we could share a room. Hotel rooms hold 3-4 people, so our hubbies and us could share a hotel room to lower costs. Prices in LA are insanely expensive.

[Actually, we found them to not be as bad as we expected, other than the $4.59 gas prices. I walked a lot and Karen took taxi.]

Thursday, May 2, 2013 at 8:47pm EDT

I have slight HP. It’s HP because putting on my binder makes it worse. Dr. Gray said that my VERY HP may have went away because my body absorbed the liquid part of the blood. I think that might be part of it, but not all of it. If that was all of it, I would have gotten very HP immediately, and not 6-18 hours after the procedure.

Thursday, May 2, 2013 at 9:11pm EDT

Depression and anxiety is what I was diagnosed with for all these years... You’re not going crazy.

Thursday, May 2, 2013 at 9:16pm EDT

It’s not the healthiest thing to do, but I’ve learned to put on a happy face to fool people. Now it took me about 15 years to learn that. My hubby did not go into the procedure room with me.

[I don’t like needles. There are also sterilization issues.]

Friday, May 3, 2013 at 6:36pm EDT

It’s not in my head, because the fluid drained out. We came home today. The low pressure symptoms have all returned. I know the testing at Duke will not show certain problems with the dura (covering that holds in the spinal fluid). I am thinking that I have something like that. I am not sure, but Los Angeles may be next.

Friday, May 3, 2013 at 6:43pm EDT

I came home today. The low pressure symptoms have all returned. I just don’t know what to do anymore. I saw Dr. Gray 5 times this month alone. My OP’s were lower than they had ever been. I am SO DEPRESSED! Something is wrong with me.

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