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PostSubject: Introduction   Fri Mar 08, 2013 5:24 pm

Good Afternoon all I have been poorly on and off for six months with no idea what was wrong I was eventually refereed to ophthalmology and had various tests for my blurred vision and head aches and flashes of lights and at times loss of vision they told me I had optic drussen but sent me for an MRI
2 weeks later I returned convinced I had a brain tumor the head aches were getting worse and my vision was unbearable I had now stopped driving.

They advised me the MRI was clear but I still had swelling on the optic disc commonly called PAP of the eyes so refereed me to the medical team same day, I had to wait for ages but eventually I was told they wanted to do a Lumbar Puncture to which i was terrified the opening pressure was 33 which i was told was fairly high they took it down to 25 they then said i had IIH and they started me on ACETAZOLAMIDE I am on 1500mg a day now I have seen my consultant last week and she has ordered more tests i have to have an MRV and an EMG and visit ophthalmology again in two weeks i have been really poorly since this all began and was hoping the meds would have made a difference.
I had the most terrible head ache last week which lasted for three days and ended up in A and E only to be told they cant do anything and gave me oral morphine for the pain and suggested steriods but never gave me any i tried to say my pressure was up but they didn't listen
I was hoping for some answers or advice I still have a sensation that a head ache is there just waiting to pop up
my eyes still feel like some one is pulling on them
i cant eat and have no appetite at all in fact i have lost nearly a stone in 2 weeks
i have a constant ringing in my ears
i am unsteady on my feet and can just loose my balance with no warning
why does the head ache subside does the presure subside where does it go why does the head ache disapear
Numbness in hands feet and face feels like chill blains ...... think its due to the meds
What is a MRV
what is EMG
I am FED UP I have been of work now for six weeks and there seems to be no light at the end of the tunnel

PLEASE PLEASE can anyone give me any advice

sorry to have moaned on
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PostSubject: Re: Introduction   Fri Mar 08, 2013 7:39 pm

Hello Pearce, and welcome2

Your story does sound very similar to many of us here at IIH. Seems you were diagnosed much faster than lots of folks, so that is a good sign.

Acetazolemide, also called Diamox, does have some disturbing side effects. Tingling of hands and feet is one of the most annoying. It will eventually go away, but that can take a long time to happen. If you can put up with the side effects, Diamox is the first line of defense for treating IIH. Try to stick with it. Staying hydrated does help.

Do be careful because of the dizziness/balance. That should improve as your pressure gets under control. Speaking of which, unfortunately, it is common to get a "low" pressure headache after having a spinal tap (lp), especially if you were not able to lay flat immediately after the procedure.

The ringing in the ears is called tinnitus. If it is a whoosing sound that "beats" it is called pulsatile tinnitus. That may be a harder one to get rid of, but your brain can learn to ignore it. Using a sound machine at night can make sleeping easier.

Do have a good look around the site. There are lots of good info here, and because we are worldwide there should be someone around at all hours to help you. Just know that you are not alone. We're here for you.
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PostSubject: Re: Introduction   Fri Mar 08, 2013 9:02 pm

I have to agree with the above reply from Linda. It's not surprising you have so many questions and we will do our best to answer them, so please always feel free to ask about anything you are unsure of. Each of our sections have information and resources that hopefully you will find helpful, if the answer isn't there we will get the information for you.

We encourage you to keep a symptom log, as this will help not only you, but your doctors as well to have an accurate account of your progress. You can find one in our Useful Printouts under Recommendations for you. There are also helpful booklets.

We are all here for you, even when you need to let off steam and rant.

Heidi xx
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PostSubject: Re: Introduction   Sat Mar 09, 2013 4:07 am

OK I am glad they put you on Diamox, that wasn't in your other post in the partners section. but I just noticed they only dropped your ICP to 25? that is insane. on both of my taps, I was 22 and 23, and I had symptoms! I got better after my taps. I know my pressure has been higher as I had felt much worse at times. but I wouldn't expect your symptoms to be gone at an ICP of 25. they should have brought your pressure down to at least 17-18.
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PostSubject: Re: Introduction   Wed May 29, 2013 7:36 pm

my pressures on my 4 lp's were 28,26,26,26. im surprised they only brought your pressure down to 25 as i was told anything over 20 is really dangerous.mine were brought down to between 12-15 on all 4 of mine and i felt alot better after them but within 10 days they were back up.

hope you get some answers, im still looking for some too.

emma x
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