First topic message reminder :

So...hello! I'm new to the forum & still in the diagnosis process. in May after many ophthalmology visits and an MRI I finally saw a neuro-opthomologist who told me that I had papilloedma with visual field defects. I've intermittent severe headaches with whooshing tinnitus he said he was fairly certain I had iih and sent me on to the neurology dept. He also said it wasn't related to sle lupus. Anyway- I just had my first lumbar puncture- it took four attempts, by three different doctors - when they finally got it they said that my opening pressure - which was 18 (and totally blessedly normal)-was inconclusive because of the multiple taps they'd done. Omg. Seriously? Yee-ouch! Has anyone had this happen to them? Or heard that multiple attempts can lower the opening csf reading? It's been a wild year. I feel like a pincushion. To top it off, they lost the referrel for the neuro consult I was supposed to have, so I've just had a lp and no treating doctor yet. Eerk. Such limbo!

I posted this thread on Twitter and so far have had one reply from Steve Campbell in Australia.


If I receive anymore feedback I'll post it.

Hi! Just a little update~ I had my neurology appointment today -I'm in the club now l(lol)  they've started me on diamox for intracranial hypertension. They mentioned that the autoimmune inflammation may be inhibiting the spinal fluid draining and causing increased pressure. Regardless, they said the treatment is the same- diamox. I have a sulfa allergy and the diamox is in the sulfa family... But not everyone with a sulfa allergy has a reaction to the diamox  so they're having me start at 500 mg for a few weeks (to make sure I don't have an allergic reaction) then I'll go up to 1000.  I'm really glad they decided to go ahead and treat me rather than running more tests and observing me. Thanks so much for walking me through all of this - I was more than a little freaked out!

What great news!  A diagnosis with possible cause.  Yay!

I, too, am allergic to sulfa druga but am able to tolerate Diamox with no allergic reactions!  Good they are starting low and slow.  It will give your body a bit more time to get used to the possible side effects. Primary one is tingling in the hands and feet.  Doesn't happen to everyone.  But, just in case.....

I so hope that works for you.  I also am allergic to sulfa and could take Diamox without any allergy symptoms.  it was just that as with 90% of other medications, Diamox caused unacceptable sedation.  it was as bad as the symptom I was trying to treat.  if you already took a dose and could get on the computer, then hopefully you will be fine with it!

Well, I didn't do so good with the Diamox- I wanted it to work but it made me so sick.   I never even got up to the dose I was supposed to take. Aside from the common side effect of tingling in my hands and feet i had horrible fatigue, joint pain, balance issues, muscle cramps, malaise. I looked so bad that one of the directors at my work wanted to drive me home because she was worried about leaving me in the office by myself in case I collapsed. which was really awkward.
 
So, I quit taking it after 5 days. oof. I feel like a wimp but I really did feel a million times better about a day after quitting.

I just emailed my neurologist, maybe there is something else i can do/take?  though i think the diamox is about it, right?

I had the same response to just 125mg of Diamox.
there is Topamax, which I thought was worse.  you might be ok with it?
I take Lasix, which has no side effects for me except the frequent urination of course and I get louder ringing in my ears.  but it didn't really work much for me until after my jaw surgery.  so when my ICP was higher it didn't do much.  the only thing that worked for me was treating my sleep apnea.  but I still had symptoms with BiPAP (CPAP was a NO GO because of the valsalva) and had to have jaw surgery.  now I have milder, more manageable symptoms and the Lasix works.

if you have visual symptoms, you could have ONSF.  but that won't necessarily treat the other symptoms.  or you could have a shunt. 

it's too bad more men don't get this or they would probably have a cure by now, or much better treatments.

No, there are other options..
Lasix/Furosemide
Methazolomide/Neptazane
Topiramate/Topamax

If you go to Medication Mumbles and click on Information and Resources (pill icon), there are links to information regarding each medication in the first entry. There are also other experimental medications mentioned in that section. Depending on your situation, there are also stents, optic nerve sheathing, shunts and other options too.

Let us know if you have any questions.

Yeah that happened to me.
They failed the first try so gave me a day to recover, then did it the next day and said the pressure was normal, but may have been because of the failed LP the day before.
I was still put on medication for it but I'm not sure if they'll want to do one again in the future.

Sorry to hear they failed so many times! Not a nice feeling for the legs is it?

No, there are other options (http://www.ihaveiih.com/f28-information-and-resources). I also couldn't tolerate the Diamox and had the same horrible symptoms. Hopefully you're neurologist will have another suggestion.

Keep us posted, and take care!
Julie