Hello,

I was diagnosed with IIH a few months ago, I am on Diamox, 2000 Mgs. a day. I also have nerve pain in my face so I take the gapepentin for that which is very helpful for some of my face pain. I STILL feel like my left eye is going to pop out of my head, my doctor keeps trying me on migraine meds..... not one has helped, I am getting frustrated. While I am paying for and failing with these meds i am in pain EVERY day.

I have to have another LP next week... I am nervous that I will have to have a shunt placed since this diamox is not helping too much.

Has anyone has any success with migraine medications specifically triptians?

I know I am rambling, and it seems that having a headache comes with the territory... I just wonder if this has helped anyone of you guys?

I have tried Triptans and I have to say they disagreed with me horribly. I know everyone is different and my mother in law swears by them for migraine. My GP said that for most migraine sufferers they are a wonder drug but they made me really really ill.

It can't hurt to try if the doc is happy for you to have them I guess. I think I was probably just an unusual case. Hope they provide you with some relief. It gets to the stage where any even a bit of respite from the pain would be better than nothing.

Good luck

It appears that there are doctors out there who think that by trying every migraine med out there is the way to treat our headaches. Once they see that they do not help, the doc will agree that it is indeed IIH and NOT Migraine and treat accordingly. The lp should indicate an abnormal pressure reading. Hopefully the doc will draw off plenty of spinal fluid, which should give you immediate relief, proving that it is that sort of treatment that is required (lowering your ICP). Getting a shunt can be very, very helpful. Do not be afraid of having to go down that road if it comes to it. The main thing is to get you feeling better.

Wylee do yiu think that even on diamox the LP should be abnormal?
I am soo frustrated the pain is making me sick to my stomach and I'm tired of having absolutely nothing to help. Gp puts me off on the neurologist ... she gives me migraine meds. I've probably tried thirty..aregg. they act like this stuff is cheap.....

Pennyroyal... thanks for the advice ;) they don't settle great with me either

Desiree, the way the Diamox works is to cut back the amount of spinal fluid being produced. I always was told to stop taking the Diamox a few days before the lp so there would be a more accurate reading. Then, just as soon as I got out of the radiology room and into recovery, I took my Diamox again. I found that having the doc really drain off lots of fluid (I think she would do about 10 to 15 cc's) and then hit it hard with the Diamox gave me a longer lasting period of relief. If you ask the doc what your closing pressure is (as well as the opening pressure), you can be certain that fluid was drawn off. My opening pressures were always between 22 and 24 cms of water, and the closing was usually around 15 to 18. I did not get relief from just the Diamox alone. We tried that and it just didn't help. I found that I could tell when we were in a better zone because my eyesight would improve as the CSF was drawn off. It was amazing. I would watch the CT Scan monitor, and my vision would go from blurry to crystal clear. If it is headaches that you get all the time, see if they might draw off fluid until the headache stops, or if the tinnitus stops, etc. I think you get the idea.

Many docs seem to think that we have an unlimited cash flow. I went through diuretics for months trying so many different ones, until my docs were able to convince my neurosurgeon to do a lumbar drain test to see if I would qualify for a shunt. We knew I felt better after each lp, so it was a no brainer. We tried the meds, that route didn't work. Spent way too much money on all those useless meds. So, he relented, we did the test, I again felt better, so he agreed to do the shunt surgery. Although we still haven't found the ideal combo of shunt valve adjustment and meds, I am a whole bunch better than I was pre shunt.

You may have to be assertive with your docs. Tell them you obviously do not have migraines so quit trying the migraine meds. How about really exploring the idea that it may be IIH!!

Hope this helps.