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 Deb - diagnosed March 2012

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PostSubject: Deb - diagnosed March 2012   Sat Apr 28, 2012 6:13 pm

hi everyone. I have felt so alone with this awful illness that everyone else seemed to think was in my head, that it is a relief to find other people who understand. to finally have a name to put on the terrible fatigue. I am grateful that I have not had visual problems: I have IIHWOP. all I've had is some ocular migraine. but at the same time, if I had had papilledema, perhaps a doctor would have realized over 10 years ago what is wrong with me. It all started with Graves disease and so of course they thought it was Graves ophthalmopathy causing my proptosis and perhaps it was. but I had eye pain way beyond the point that the Graves eye disease had "burned out". and I always got better with steroids. Then my problems with chemical sensitivity started slowly increasing, to the point where the olfactory hypersensitivity became so extreme that I had to stop working and I am now on disability. So when I had more and more episodes of fatigue and migraine I thought it was the MCS. My mother has been ill most of her life with a similar fatiguing illness, so it became clear I was crashing into the family illness that we never understood. My great aunt Emma had it too. My mother and I have been treated with disdain and labeled as depressed or Somatoform disorder more times than I could count. I have very high anxiety every time I go to the doctor, especially a new doctor, as I never know how they are going to treat me. and so you get pushed to see alternative health practitioners and go down a road where no one would consider doing a spinal tap on you. I have to wonder how many people out there with MCS, CFS, Fibromyalgia, actually have IIHWOP and no one has considered the diagnosis. even if they did, people view a spinal tap as so invasive, they might refuse to have it done. maybe the only thing rare about this illness is the fact that entertaining the diagnosis and doing the spinal tap is the rare event! I feel fortunate in that I discovered about a year and a half ago that I have obstructive sleep apnea. treating the OSA made me feel so much better! but I continued to have problems, and it seemed that I had to be perfect in my OSA control or I would feel terrible. just a bit of mouth leak on the CPAP mask and I was down for the day. this is not the way other people experience their OSA and there seemed to be so many neurological things going on, which I of course thought was all triggered by the OSA. After my 5th visit to my neurologist, he finally mentioned, sort of as an "oh by the way, did you know" that OSA can raise intracranial pressure. this was a major "aha" moment for me, as being a doc myself I instantly saw the connection between ICP and my symptoms. I had to push to get the spinal tap done. finally, a positive test! finally, some legitimization for my pain and suffering! I knew that treating my OSA made a difference, so I had the spinal tap done with and without treating the OSA. without treating the OSA, the ICP was higher and my CSF flow velocity on the MRI more than doubled. I have been studying OSA for a year and a half, obsessively, so I can tell you all that it is way more common than anyone realizes and it may be a factor in the IIH illness of everyone on this forum. with what I know, if anyone here is having problems controlling your ICP, get a sleep study and if it's positive start treating the OSA to see if you improve. if it's negative, go to Stanford because most sleep labs cannot detect mild sleep apnea and that is all it takes to make one of us with IIH sicker. I have not tolerated the medication; both Diamox and Topamax make me more sedated than IIH makes me feel, so what's the point? I don't want a shunt and I'm not losing my vision, so it doesn't seem indicated. so all I can do is treat the OSA. The other factor for me is that I have anticardiolipin antibody. for a diagnosis of antiphospholipid syndrome, a hypercoagulation disorder that can cause strokes and heart attacks and DVTs, you need the antibody and an event. I haven't had an event. my mother has been diagnosed with APS, as she had a heart attack. but I found a paper which says that if you have IIH and the antibody, this should be diagnostic for APS. and a theory that the IIH is caused by microthrombus in the arachnoid granulations. which suggests that anticoagulation may treat my IIH. I am still working through that possibility. the interesting thing is that there is evidence that OSA may cause anticardiolipin antibody and CPAP may make the antibody titer go down. I am grateful that I found the OSA first because I might not have figured out how much treating it helped if I had found the IIH first. I would have been begging for a shunt or might have decided to end it all. I am sure all of you know how miserable this illness is and how it can make you wish you had cancer instead. at least then you might have a ticket out of your misery, and people would understand why you felt so bad, instead of criticizing you for being an unhappy person and telling you you need to learn how to handle your stress level, etc. And just the process of arguing with people about it makes you worse because any crying or yelling is a Valsalva which makes the ICP go up. after an upset with someone, usually based on them criticizing my behavior which was caused by me feeling so bad which they couldn't see and so they don't accept it exists, I can be rendered unable to walk. I am realizing now that this problem is why I get lightheaded when I sing. why I started getting migraines when I climbed a mountain. The two things in my life which speak most deeply to my spirit are singing, and mountain climbing, and I am only just now starting to fully realize the fact that these are lost to me. My life has become about nothing more than just understanding this illness so thoroughly that I can somehow prevent it from happening to my children, so that they will not suffer as I have. I throw myself into intellectual pursuits because actually feeling my feelings is a bad thing. Anyway, I am grateful to have finally figured out what is really going on, and to have found a group of people who understand. the isolation of this illness is one of the worst parts of it. I look forward to learning more and more through interaction with all of you. thank you for being here.
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PostSubject: Re: Deb - diagnosed March 2012   Sat Apr 28, 2012 6:53 pm

Hello Deb hug and a very warm welcome to the group I am so pleased you found your way to us. You have been on an incredible rollercoaster of events and health issues, and I have the utmost respect and admiration for the strength and determination you so clearly have. You seem to have an understanding of what is going on, although you don't have the all the answers you need, which is sadly so common. I can see why you feel caught in a limbo type situation with regards to your treatment, and I do hope that this wont be for long so that you can hopefully move onto a better quality of life.

Please don't give up hope that you will be able to sing and climb mountains again, and that this phase of your life is merely a glitch that hopefully can be resolved. Has your doctor tried you on Lasix (Furosemide)? This is another medication that is also used for IIH. Here is the link to our topic on Medication usually prescribed for IIH It could be that your Neurologist hasn't found the one you are the most suited to yet, and I'm sure our other members will be able to share their experiences of the medications with you, so at least you know it isn't just you who have these kind of problems with them.

There are so many extraneous things that c ontribute to making IIH headaches worse or aggravate them such as the weather, menstruation, stress and exertion. This is why we encourage you to keep a diary or log so that you can identify the patterns of these things and be able to cope with them better, and hopefully to overcome them. Unfortunately it will always be down to trial and error, and time but it is all about adapting our daily lives in order to regain some quality and independence.

You are not alone Deb hug, and we are always here for you no matter what!

Heidi
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PostSubject: Re: Deb - diagnosed March 2012   Sat Apr 28, 2012 7:05 pm

:hello: Deb and Welcome to the group!

Wow you've been through so much and have so many illnesses! I'm glad that you have found out whats going on but sorry it IIH. hug

I'm glad you have your OSA under control and that is helping with IIH.

Diamox and Topamax can be so awful and it does sometimes feel as worse as IIH hug Try and ask your Neurologist about taking something else or check out our medication section on tips on which you can suggest to your doctor. http://www.ihaveiih.com/f6-iih-and-medication

hug IIH can make you feel so isolated but you are never alone with us, we are here when ever you need us xxx :flower:

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PostSubject: Re: Deb - diagnosed March 2012   Sun Apr 29, 2012 1:45 am

Thank you so much to both of you for your words of encouragement. I will consider trying Lasix. I have been in the alternative medical side of things for many years and the thought of taking something that makes me waste magnesium is kind of horrifying to me. almost as much as taking a sulfonilamide like Topamax or Diamox, which are folate antagonists. I have so many methylation mutations that antagonizing my folate will probably kill me faster than anything. yes, I am convinced that something about the menstrual cycle makes this worse, as over the last 5-6 months it has become apparent that cycle day 2 is pretty bad. I was actually able to abort the cycle day 2 phenomenon this month because I had an LP 3 days before, and it didn't happen. so I know that has to do with ICP. so.....do people get better after menopause? my mother didn't. she got worse.
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PostSubject: Re: Deb - diagnosed March 2012   Sun Apr 29, 2012 5:18 pm

I agree with you the menstrual cycle does seem to make it worse, and many of us find that during that time we feel worse. It could be that because of the raised pressure we are more sensitive to Menstrual Migraines.
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PostSubject: Re: Deb - diagnosed March 2012   Sun Apr 29, 2012 5:49 pm

that is a good point. you may be right.
I also meant to say that I do keep a diary daily, and it has helped me tremendously to sort things out with all my complicated issues. invaluable. I can go back and analyze my data like a scientific experiment and say this helped that and that didn't help this, etc. the diary is the only way I figured out the cycle day 2 phemonenon.
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