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 Anneliese - diagnosed 2010

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anneliese1991
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PostSubject: Anneliese - diagnosed 2010   Sun Oct 03, 2010 9:50 pm

Hello all.
My name is Anneliese, and I am 19 years old.
Well, it has been one heck of a week, let me tell you.
A few weeks ago I went with my husband to get my eyes checked because he wanted to change to contacts. That is where this journey began.
I have had headaches for about a year, but I always blamed them on a spinal tap I had done in October of last year because my doctor thought I had meningitis. (which I didn't)
And for the last few months I've had this issue where, as best as I can describe it, sounds like my eardrum was thumping but I blew it off saying I needed to see a doctor about it but never got around to it.
While the eye doctor checked my eyes, they saw what appeared to be fluid behind my eyes so I made an appointment with an opthamologist. They confirmed this, and sent me up to our local university within a few days.
There they did some tests, told me it was probably IIH, but they had to cancel out some other things first. So that day I had an MRI of my head with contrast and all that jazz, and went back on Wednesday of last week.
On Wednesday they went over my MRI with me, and said there wasn't anything lmajor going on like a tumor. However, my pituitary gland is only a half circle and is flat on top instead of round, probably due to pressure. Also, my veins are barley visible in some places, also probably due to pressure. So they ordered another spinal tap. I was dreading the spinal tap, since my last one was no fun at all. I ended up with spinal migranes, but thank God, this one went better. No issues with this one =]
So they got the fluid they needed to check for infection, and to check my pressure. Came out to be between 34-37, but leveled off at 34. So they drew extra out for some temporary relief, and got it down to 15.
I am also on Diamox now, and not enjoying it one bit lol.
I am having a lot of the side effects from it, but I am surviving. Its just mainly been a trial and error with food.
Sorry to have written a book here but it felt good to get it off my chest =]
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Heidi
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PostSubject: Re: Anneliese - diagnosed 2010   Mon Oct 04, 2010 12:34 am

Hi Anneliese hug, welcome to the group. You seem to have had an awful time of it, and I understand the not liking the lumbar punctures, I'm not a fan of them myself. nuhuh Unfortunately it seems to be the only way to assure a diagnosis of IIH. I know the side effects with Diamox are uncomfortable, and can be hard to tolerate, but hopefully when your body adjusts to it, fingers crossed, the side effects will start to settle down.

Many sufferers do quite well on this medication and it does help all the symptoms, although you can still have headaches from time to time, you may notice them more around your time of the month and/or when the weather is overcast and stormy. So it might be a good idea to keep a diary of the days when you get headaches or any of the other symptoms, and then this will make it easier when you have to see your Neurologist. We do offer helpful suggestions and advice in the Recommendations section in the way of printouts and things, also we have Informational Links for you which may be of some help.

Always feel free to come and have a rant or chat with us, and it doesn't matter how long it is because that's why we are here. I look forward to getting to know you and remember we are here for you when ever you need us, and to answer any of your questions and offer advice. for you


Last edited by Heidi on Wed Oct 13, 2010 8:21 pm; edited 1 time in total
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emily2405
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PostSubject: Re: Anneliese - diagnosed 2010   Wed Oct 13, 2010 6:30 pm

Hi Anneliese just thought i would drop by and say hello and i know how your feeling Smile
i too have just been diagnosed with IIH and also on Diamox and suffering slightly with the side effects
fingers crossed things get better to handle with time
xx
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anneliese1991
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PostSubject: Re: Anneliese - diagnosed 2010   Thu Oct 21, 2010 3:10 am

Side effects are settling down now a bit. Go back next week for a check up.
My only concern is this pain in my right shoulder/arm right now.
I dont know if it has anything to do with all of this, but I dont remember doing anything to it for it to be hurting. ;/
In my experience emily, things have gotten better. not perfect, but better =]
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annie
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PostSubject: Re: Anneliese - diagnosed 2010   Sun Nov 14, 2010 4:00 pm

[b]I was diagnosed in June this year. I wanted to know what are some of the side effects people are having from the Diamox (acetazolamide)? I take 500 mg in a.m. and 500 mg at bedtime. I still have the headaches, but apparently, the MD's know more than I do. Any side effect experiences would be helpful. Thanks!
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anneliese1991
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PostSubject: Re: Anneliese - diagnosed 2010   Sun Nov 14, 2010 6:39 pm

Hi annie.
I'm on the same dosage you are.... do you really take yours at bedtime though?
I was told to take mine no later than 6 so I wouldn't be up all night.
I do still have occasional headaches, and this was brought up by my dr. when I was there a few weeks ago.
He told me I would more than likely still get headaches when the weather is funky (like changing from 75 for 45, or a stormy day) and my time of the month. Actually, pretty much the same thing Heidi posted on here for me =]
I've been on Diamox now for oh...coming around 2 months.
Side effects have been everything from tingling (actually quite painful needle like) in my feet. Also sometimes in my hands, but mainly my feet. I read somewhere on here or somewhere else on the internet that walking barefoot on a cold hard floor like hardwood helped. I tried this, and it does for me.
It also seems like my legs,arms, etc. "go to sleep" easier now.
Soda tastes like crap still. The only soda (hahah i've literally tried EVERYTHING else) i can still taste is Mello Yello. I've also noticed a lot of foods taste "off" to me, where as my husband or friends will say it tastes perfectly fine.
I've also been a bit more tired while on the medication too.
I eat a lot of bananas. I was told the diamox would lower my potassium, and I will notice muscle cramps if i havent had any. Also, when I had my blood drawn for other reasons, they too said my potassium was low and my dr. had to explain this was from my meds.
All in all, I've been getting along pretty well with diamox.
It could be a lot worse, and if it makes my migraines go away, I can live with it for a while.
However the last time I went to the dr they said if i still look as good as i did then in december theyll start getting me off it. YAY!
Hope this helps a little.
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PostSubject: Re: Anneliese - diagnosed 2010   Mon Nov 15, 2010 7:26 pm

Dear Anneliese,

You had been through a typical route of IIH diagnosis. The spinal taps are usually a practice to ascertain that its indeed IIH. However, since you are already on Diamox it means your ails will be quite alleviated. The challenge rests in coping with the effects of the medication plus the IIH symptoms. This condition calls for a strong support system, and we glad that you have joined our group. Feel free to go through the posts and read about the experiences of our members and how they made their respective coping mechanism. Hoping for the best, and whishing for your prolific posting in the forums. Take it from Heidi she got all the experience and coping tricks that will save you tons of pain and sweat. We are all here for mutual support.

We are happy to have you and will be reading more of your posts soon.

Best regards,
Saleh
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