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illinoismom93

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PostSubject: hello there!   Fri Aug 21, 2015 12:42 am

Just wanted to introduce myself because I am new to this forum. My name is Hannah, I am 21, a wife, and a mom. I live in the United States. Here is my IIH story.

I had the mirena IUD in for 2 years after my daugher was born, and had it removed in march because I started to have really bad headaches. A few days after I had it removed I had the worst eye pain ever. It felt like something was behind my eyes kicking them out of my eye sockets. The headaches continued, I felt dizzy and light headed. When I bent down it literally felt like my head was going to explode. I saw a really great eye dr for the eye pain who first mentioned pseudotumor (he even went as far as to say that he believes the horomone in the IUD I had caused it). He said he really didn't see any optic nerve swelling (but maybe possibly a little optic nerve swelling on the nasal quadrent)(I believe thats what he said) and referred to me a neurologist because of my symptoms. After a clean MRI and CT scan I had a lumbar puncture which had an opening pressure of 23(still not very high) but he said it was slightly elevated. I was put on 500mg of Diamox a day which did absolutely nothing which was increased to 1000mg a day which I am still currently on. The headaches arent so bad anymore, but I feel like i am really feeilng the side effects of the Diamox. I am so dizzy and lightheaded all the time, not to forget how exhausted I am. I wasn't so sure it was pseudotumor in the beginning but my neurologist said he is very postive it is IIh because of my symptoms. I still have headaches( they are mainly in my sinus area) and my forehead. At first i was conviced it was a sinus infection due to where the pain was but the mri and ct scan was clear for a sinus inefection.


Its been a long road and I feel like I cant see the end in sight. during all of this I had to have gallbladder surgery, quit my job from how many days i was missing due to all of this pain, and i've just stopped enjoying the things I once used to. I'm also being tested for sleep apnea in october becasue my neuro said I still shouldn't be this tired from the diamox, that my body should have adjusted to the higher dose by now. who knows. The dizziness, light headedness, and tireness just continue to get worse. Im just ready for this to all be over!!
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medmisfit
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PostSubject: Re: hello there!   Fri Aug 21, 2015 3:22 pm

Hi Hannah, welcome to the group! I am sorry to say that your experience seems fairly typical. They usually confirm IIH diagnosis by your response to the spinal tap. If your pressure is high, then symptoms usually get better for awhile once fluid is removed.

Btw, everyone's "normal" pressure is different. You will find some members have shunts set at 9, while others are at 20. IIH has some similar traits, but really affects everyone differently. Treatments also affect us all differently. Some do experience horrible effects from the Diamox, but there are other medication options available like Lasix/Furosemide, Methazolomide/Neptazane, and Topiramate/Topamax. Some members can't tolerate medications at all, so look into stents, optic nerve sheathing, and shunt options, too.

Finding the appropriate diagnosis and treatment can be a long, tedious process. I'm sorry you've lost so much, but hang in there! You can live a semi-normal life with IIH and some adjustments, so I hope they find the right combination soon!! Look over the site and let us know if you have any questions or there's anything we can do to help.

Take care,
Julie
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Wylee
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PostSubject: Re: hello there!   Sun Aug 23, 2015 1:07 am

Hello Hannah.  A warm big welcome to the forum.

I have read numerous advertisements for law firms who handle  IIH due to Marena IUD's cases.  Seems that is not an uncommon outcome.  And sleep apnea can contribute also.  I would recommend keeping a journal/notebook where you can record dates, drs names, meds tried, tests and results as well as good days and bad days and possible triggers.  Having IIH tends to be a bit of a mystery to solve.  Determing what is a comfortable intracranial pressure is a clue.  My opening pressures tend to be like yours.  22-24.  My brain prefers a much lower pressure, like 10-12.  Big difference,  

Have a good look around the site.  Feell free to ask questions, visit just to say hi and give an update, have a venting session (we understand the need for that.
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Sophiasmom
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PostSubject: Re: hello there!   Mon Sep 07, 2015 10:00 pm

hi Hannah;
my pressure was 23 also.  my IIH was mostly being caused by my sleep apnea, and I went into remission after jaw surgery for that and my pressure dropped to 14.  so definitely get the sleep apnea evaluated.  I also could not tolerate Diamox, it was too sedating, so I was grateful I found another solution that also did not involve a shunt.  I found Lasix more effective and it did not make me feel funny.  my story is on the successes page.  you actually must have a very good neurologist because most would blow off a pressure of 23 and try to tell you that you have migraines and give you Botox injections.  I hope that you find a better solution soon!
Deb
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illinoismom93

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PostSubject: Re: hello there!   Sun Sep 13, 2015 4:01 pm

Thank you for the warm welcome everyone! Its so nice to hear positive stories and advice from people who really understand. I will for sure start a diary of everything(thats a really good idea) and hopefully I will start to see a pattern of what could possibly be my triggers of the bad days and I will for sure start writing down everything the doctors say. My sleep study appointment it set for October 6th, so not too much longer! I really do have a wonderful Neuro. I was originally referred to a different neuro who told me I for sure do not have IIH (he determined this in the first 3 minutes talking to me) and told me I needed to calm down. I left that appointment in tears. I asked for a referral to a different neuro and got an amazing one. Listens to me and really feels like he is there to help. (I feel very lucky). 


My husband and I are thinking about trying to have another baby soon, but I'm note even sure where to begin with that considering im on diamox and I've heard thats not allowed in the first trimester. I have an appt with my  neuro for that this coming Wednesday. 


Thank you guys again for the warm welcome and advice! I truly appreciate it.
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medmisfit
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PostSubject: Re: hello there!   Mon Sep 14, 2015 6:54 pm

I'm glad you found a supportive neurologist..that will help a lot! Here's an article on Diamox and Pregnancy that may interest you and help you prepare questions for your upcoming appointment.. http://ihrfoundation.org/hypertension/more_info/ih-registry-acetazolamide-use-pregnancy-study/ . The Intracranial Hypertension Resource Foundation is a great resource and they've helped many members with difficult or unique situations.

Good luck with that and the sleep study! And please keep us posted ..
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SyrahSux
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PostSubject: Re: hello there!   Thu Sep 17, 2015 12:40 pm

I've been on Implanon for a few years, now I'm thinking what if it has something to do with it?
But anywho, I'm happy they are helping you, from what I hear it is hard to get proper help for this sort of thing.

Trigger wise I've found too much caffeine and sugar will trigger my headaches, it took a while to figure out though. Maybe keep a log of the food/things you do and what symptoms you have and see if theres a correlation?
I know some people have a sensitivity to smells too.

Nice to meet you and best of luck!
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Sophiasmom
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PostSubject: Re: hello there!   Sat Sep 19, 2015 5:54 am

oh yeah.  chemical exposures, perfumes and other chemical smells are my biggest trigger left after I had my jaw surgery.  a chemical exposure is almost the only thing that will make my ICP go up anymore, and I proved this was happening on a spinal tap.

I've asked several IIH friends to take the qeesi test which is a measure of environmental intolerance.  every person who's taken it is very positive.  I believe that MCS (multiple chemical sensitivity) is a variant of IIH.
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