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 Sasha- diagnosed Feb 2013

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smug
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PostSubject: Sasha- diagnosed Feb 2013   Tue Feb 19, 2013 9:07 am

hi everyone. it's so nice to find a group of ppl with the same thing the drs say i have. my story doesn't really sound like any of the ones i've read so far tho. i'm 36 and have 3 kids..in may of 2010 i had a migraine headache (my first ever) that had me off my feet for about 3 days and then i was fine and didn't think any more of it. in december of 2011 and jan of 2012 i was having severe headaches almost every day..however i also wasn't sleeping...i went to see a dr and he said he thought i was depressed and the headaches were most likely caused by the insomnia. he did a full blood work up and found nothing unordinary except my vitamin d and that was basically the end of it. the headaches eased and i didn't really think that much more of them. in january of this year (2013) my glasses broke so i made an appointment to have my eyes tested for new ones and the optician noticed that my optic nerves didn't look right and sent me to the hospital to see an eye specialist. the next day the eye specialist did all sorts of tests and determined that my optic nerves were indeed swollen and referred me to the neurologist...they kept asking me if i had headaches and i said no i get headaches like anyone else but nothing out of the ordinary...until i was discussing with a friend and the first thing she said when i told her about the referral to the neurologist was maybe this is why you always have headaches. my 13 year old son also said to me "but mum you're always saying you have a headache" and over the next 2 weeks while i waited to have my ct scan and lumbar puncture i actually took note and found that i did indeed have 3 or 4 mild headaches each day but they weren't bad and so most likely just forgot about them as soon as they were gone. my opening pressure on my lumbar puncture was 47 and afterwards they told me they thought it was likely that i have this condition. they kept me in overnight on pain meds hoping i could get an mri before i went home the next day. for the first week i had very very severe headaches and was put on tramadol for pain which had me sleeping about 17 hours a day... and i'm also on diamox to help keep my pressure down. i'm now off the pain medication but i get the pins and needles in my feet i can't drink any soda and i drink water all day. i have to force myself to eat and on top of all that i still have mild headaches and when i lay down and close my eyes they ache, so i seem to be back where i started only it's forcing me to lose weight. i'm booked in for my mri in mid march and am on a waiting list for a neurology clinic. am i hoping for too much to think this might all just go away? i do wonder whether the severe headaches i wrote off as migraines before were actually this condition but i guess i'll never know...and other than those i haven't really had any of the normal symptoms they described to me..i don't hear whooshing noises (although i do hear ringing sometimes) i don't get double vision, don't get black spots in my vision or fireflies, and i don't even get the debilitating headaches...if it wasn't for needing new glasses i wouldn't even have known anything was wrong...sometimes ignorance really is bliss i think Neutral
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PostSubject: Re: Sasha- diagnosed Feb 2013   Tue Feb 19, 2013 4:48 pm

Hi, Sasha,

Welcome to the forum. I am glad you found this place, even though I hate that you had reason to have to look Very Happy You will find a lot of support here and find that you are not alone, no matter how different you think your symptoms are. IIH affects each of us differently, but we all share the same anxiety that comes with a disease that doesn't have a "cure."

Just as a matter of intro, my symptoms are mostly visual and associated with my eyes. My opening pressure on my initial LP was listed as 32-36. Like you, my headaches are mild, but my eyes are sore almost all the time and are hard to move. I would say that all of us who are on Diamox are familiar with the pins and needles and crappy soft drink taste, as well
Really, all you need for a diagnosis is a clean MRI/bloodwork/CT/etc with a high opening pressure; and you get to join the club. As for how long the condition lasts, it is hard to say. Everyone is different. Symptom management and eye sight preservation are the main goals. Yes, it can simply "go away;" but it can also come back. Just be positive, proactive with your doctors, ask questions, keep a log of symptoms/foods/etc, and try to live your life as normally as you can. Just know that you have empathy and support on this forum, and do not be afraid to ask questions or just vent!

Mark
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PostSubject: Re: Sasha- diagnosed Feb 2013   Tue Feb 19, 2013 5:12 pm

Hello Sasha, and Welcome

One of the most common things about IIH is that it appears that no two people have the exact same symptoms. We all have things just a bit different. Mark was very accurate in his description of IIH. There are very simple, basic symptoms which qualify one as having IIH. You don't need any certain number of them, just the basics. You are indeed fortunate to not have the extreme headaches, or, you may be like me, and have a very high threshold for pain and what is "mild" to us may be "nasty" to others :roll:

Do have a good look around the site. There is lots of great ideas here and many supportive members to help you along your journey. There is no "cure" for IIH, but it can go into remission. That's the goal. We'll do what we can you to help you get there.
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PostSubject: Re: Sasha- diagnosed Feb 2013   Tue Feb 19, 2013 7:09 pm

A very warm welcome to the group forums Sasha. hug I can only agree with Julie and Mark. As to the pins and needles, not being able to drink soda and the lack of appetite, they are the common side effects with Diamox I'm afraid. Some of us can tolerate them, some of us can't, and there are some who find that the side effects disappear over time. The Diamox can also cause tinnitus which is a ringing in your ear/s.
A cold cloth on your eyes, forehead and the back of your neck can help soothe eye and headache pain, so give that a try and see if it helps. As MArk said keep logs of your symptoms and even medication side effects. They wont just be a help to you but also to your doctor when you have to see him, because you can then give him clear and accurate information about your progress.
We are all here to support you and help you through your life with IIH, and to also listen to you whether it be on your progress, any problems or just to have a good vent of how you feel, or when you're annoyed.
I look forward to getting to know you and to seeing your progress and hopefully to see you reach remission.
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PostSubject: Re: Sasha- diagnosed Feb 2013   Wed Feb 20, 2013 6:49 pm

I agree w/ all the information and advice you've been given..just wanted to take a minute to welcome you and introduce myself. Let us know if you have any questions or concerns..we'll do our best to help you through it!

Take care,
Julie
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PostSubject: Re: Sasha- diagnosed Feb 2013   Wed Feb 20, 2013 11:21 pm

thanks everyone =) it's nice to be here! i've been looking around your forums and there is so much information here! i think the most daunting thing is knowing how long some of you have suffered with it but then i've read the success stories too so there is always hope! and i seem to have it a lot easier than a lot of others and that helps to keep things in perspective. i'm feeling like this diamox is the medication that just keeps on giving right now...i am actually regularly sleeping around 4-5 hours a night the last few nights which for me is very good...except for when i'm ill and taking medicine i rarely have slept more than 2 or 3 hours a night for the last 3 years or so...and i was hardcore addicted to coke and pepsi as well and now i drink mostly water all day...sometimes an iced tea or chocolate milk if i need some flavor. on the downside i've still got the pins and needles for a couple hours every time i take my pills, i've got cloudy vision in the morning and the pain in my eyes when i first lay down and close them, i'm usually one who loves the heat and sunshine but it seems like the sun is too hot and bright as bright can be these days...and for the last few days it seems like i have been cooking up a nice rash. i thought at first it was a heat rash as i live in australia and we had a really warm start to our week (even tho i don't remember ever having had a heat rash before i tend to hope for coincidences) they are like little pimples but i don't have them everywhere...they started on the insides of my elbows of all places and i have them on the top parts of my arms and legs...and i think i may have a few on my scalp. i'm not sure if this is a side effect of the diamox so i'm off to the dr in a little while to find out whether i'm just being paranoid or if i need to stop taking it...
anyways that turned into a bit of a rant there but i really just wanted to pop in and thank you all for making me feel so welcome
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Sasha- diagnosed Feb 2013

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