I did not react well to either of those drugs, so I may not be much help. I do know a lot of people do not do well on Topomax. My headaches and pressure got much worse while taking it. I would let the doctor know, they will want you to stick it out for awhile, but if you feel like you are getting worse, let them know asap. The tingling was worse for me with both drugs, and I didn't try them together.

Also, maybe cut back on milk and stick to water and orange juice. OJ has the potassium you need while taking diamox and Milk has added Vitamin A, which is bad for IIH, especially if you are overweight. Vitamin A is stored in fat cells. Too much makes you toxic and increases cranial pressure.
Amy

I'm sorry I don't have anything to contribute to the question, but Amy, your advice about drinking OJ and staying away from milk was really helpful to me! I recently went up on my Diamox to 1,000mg/day and I'm having major dry mouth but trying not to drink *too* much since that can increase pressure, and that's the reason I'm taking Diamox anyhow.

Best of wishes, Kristena! Diamox helps but has not given my "full" relief, and Topamax did not help me and therefore the side effects were not at all worthwhile for me.

Keep us posted about what happens for you!

You are on all three?! Oh, my. That's very tough to manage, for both you and your doctor. I'm sorry you are having to deal with the side effects.

This doesn't happen to everybody b/c everyone is different - I'm on Diamox 3000mg now. I was on Diamox+Lasix but the effect on my blood chemistries was too extreme so they took me off Lasix. The two drugs together put me in metabolic acidosis. My potassium levels were down into the dangerous range and they hadn't been taking regular blood tests to make sure things were okay.

My advice to you is to request that they do blood tests (electrolytes, blood gasses) at least once a month or so until you've been on your steady dose a few months. My problem kicked in after 4 months on my steady dosage, and I landed in the hospital cardiac unit for 3 days. A guess was that it was when my body depleted it's stored-up potassium supply.

Again, everyone is different so this may or may not apply to you.

Personally, I think passing a few kidney stones every month is worse than having my csf pressure increased some. Dehydration can cause kidney stones. Dehydration can also screw up your blood chemistries. Dehydration can also cause headaches. It's all related. Think about drinking adequate amounts of water.

Just being on Diamox makes my kidney to dump salt. I drink a ton (about a gallon a day now) and I'm still dehydrated. Ugh. My doctor put me on a high salt diet and it's getting a little better.

I guess what I'm saying is that everybody is different, and these drugs can wreck havoc on the body. Just make sure your doctor is monitoring you enough to be able to tell when a problem is happening. My internal medicine doctor fills that role, in consultation with my nephrologist, neurologist, and other assorted doctors.

Thanks so much for all advice! I'm telling you this day started with horrible headache, continued with hands and feet feeling as if they were on fire, tunnel vision, and even more that I don't even know how to describe. I told myself all day to just wait and see how the rest of today goes and see about tomorrow...hopefully I'll wake up with a slightly less headache, or not stuttering quite as bad, or maybe even without some of this massive pain I've developed in my back...until then I will drink some more OJ and then some more water....

Thanks for all the kind words and words of wisdom!
Kristena

Kristena,
I am so sorry you are dealing with all this right now. Being on all 3 drugs is brutal. I know for myself I tried them all and none of them worked for me and that is why I resorted to a shunt. So far, I have no regrets bc it is working well for me. It sure beats all those nasty side effects. If you do decide to get a shunt just make sure you get a reputable surgeon to do it. I got tired of the med rollercoaster myself. Gentle hugs coming your way. Keep us posted hun.
Beth