That is the way I feel. Ct of the head comes back ok but in the mean time I cant function like I should be able to and I leak from ear nose and eyes. So frustrating.

Hey Kristena,

After being on Diamox for 11 (maybe 10 or 12-bad with dates) years, I grew intolerant of Diamox. I started to have blackouts, I became unable to balance my electrolytes on my own and was frequently in the ER for IV fluids, and finally when I actually fainted the ER Doc suggested I talk to my Neuro-Optho about a med change.

My Neuro Optho put me on Lasix and a Potassium supplement right away. I loved Lasix. So much less harsh on my stomach and system overall...the Potassium supplements could be a little rough, but if taken with food and lots of fluids, not so bad. I wish I had been on Lasix from the start.

Hope that helps,
Lulu

I had severe nausea and digestive problems before I was ever on Diamox. I'm on Odansetron which makes me so sleepy so I don't know what I think about it. It doesn't help the stomach pain (I had that before Diamox also). My usual state is prolific diarrhea, except when I've taken vicodin for more than one day. Then it swings the other way. I've seen a Gastro dr. who says everything is fine. I had a gastric emptying test that said it takes double the time for things to leave my stomach. In the meantime the diarrhea is making my chronic acidosis (caused by the Diamox) worse.

I strongly suspect that either IH is causing my stomach problems, or my stomach problems and IH have the same root cause. Don't know which. The severity goes up and down, just like everything else seems to do.

I've noticed that I have more or less intense Diamox side effects depending on the type of Diamox and the generic manufacturer. I have more side effects from the ER Capsules, but they also work better for me. There was one brand of regular-release tabs that made my lips numb and they felt like giant fish lips. The pharmacy changed suppliers and that fixed that. Regular release tabs usually have fewer side effects for me but they don't work as well either. It's a mystery to me.

Lucky dog CT of face - my PCP was explaining that it's a special, really complicated CT that uses different equations and thicknesses for each bone in the face because they are all different so to get a clear result they have to adjust everything second by second. Not all facilities do them. I think I need one of my RH side.

And yes, you are getting older. Thankfully each of us draws a new breath each morning and adds a new day to our life. The exchange is for a little more wear and tear on the body each day. Hopefully gradually though lately mine has gone in a couple of big jarring jolts. Just speaking for myself today - gee whiz, it's glorious just to breathe.

I think it's time to start seeing some doctors that are going to look at gene mutations in you, has anybody done that yet?
Read here
http://en.m.wikipedia.org/wiki/Spontaneous_cerebrospinal_fluid_leak
How do you know you brains pressure isn't low due to the leak? Lets all help find a new Dr. For her cause she shouldnt be experiencing this.
BTW, did you see where MOMOFPTCGIRL is kicking ptc ass?
http://www.dailystrength.org/people/1433331/journal

Kristena; get a sleep study.
I agree, I like Lasix much better than Diamox or Topamax.
for those of you with gut problems; have you tried going gluten free? there's evidence that gluten disrupts the intestinal barrier. I suspect it might also play a role in disrupting the blood-brain barrier.

Sorry it's taken me a little longer to get back to answer. Lets see if I can and keep it somewhat short ;-)

The leak and pressure - this has me baffled and I'm not sure how this works. I've had 2 lp's in 3 months, the week after the lp I have fluid that comes out of my nose anytime i bend over, or lean too far to the side. The pressures have been elevated, but not astronomical. But during the "leaky" phase I don't have my normal PTC symptoms. After this time it stops until I sleep on my left side and then something leaks out my left ear. The ENT is suspicious of a leak from pressure going up and down compromising one of the facial bones (he gave a much more medical sounding explanation, that's the Kristena version).

Sleep study - I have had one, and they mentioned I have "mild obstructive sleep apnea" but it was "too mild" to recommend treatment. Nice right? Also at the ENT he mentioned something about my nose and being unsure if e was going to be able to scope it next time because of how narrow one side is - any insights anyone?

Thank you all so much for your help and support in all this mess. I am actively looking for a different neuro, especially since this one told me yesterday that its my fault I'm having the new neurological symptoms, so yeah...

Thanks again and sorry it wasn't as short as I was hoping it to be,
Kristena

if your nose is so narrow an ENT can't scope it, it's too narrow for you to breathe properly through. you may need some kind of surgery. at the least, start using breathe right strips or a Nozovent immediately. if a regular sleep lab (meaning not Stanford) actually detected sleep apnea at all, then it is significant. you need to get on BiPAP. go back to the sleep doc and ask him what he thinks the effect of even mild hypoventilation might be on YOUR intracranial pressure, given that you have IIH. I think that ANY sleep apnea in IIH must be treated aggressively. tell him you have a doc friend who thinks that in IIH if sleep apnea is present (well that's not really an IF) that the person should be diagnosed if the AHI is greater than 1, and titrated to an AHI of less than 1, to eliminate ALL nasal flow limitation, (like they would manage a child) because of the significant effect of any degree of hypoventilation on ICP. if it is not impossible for you to get to Stanford, then that is what I'd recommend. there are some good sleep centers in Chicago at U of Chicago and Northwestern that might be a reasonable compromise.