Well, I looked it up and found these: Blurred vision, changes in taste and sensation, constipation, diarrhea, constipation, drowsiness, frequent urination, nausea, vomiting.

It doesn't seem outside the realm of possibility- Diamox seems to effect people in many different ways. I'm so sorry you're feeling this way. :-(

What you describe really sounds like acid reflux to me. Have you tried taking Pepcid to see if it helps? I have had the same pressure feeling in my chest with acid reflux and actually went to the ER thinking it was a heart attack. I also sometimes dry heave until I do bring up a burp. I have noticed that my acid reflux is a lot worse when I'm taking Diamox. I was off all reflux medicines for a couple months while I wasn't taking Diamox. I started taking the Diamox again a few weeks ago and BOOM reflux is back.

I would try some Pepcid. Hope this helps.

I have acid reflux/GERD and the Diamox has aggravated it terribly. Like Ashley I've also been to the ER with the chest pains. It's awful. I've only been on the Diamox for about a month and haven't had any relief yet. I hope someone will reply with some suggestions!

Diamox gives me heart burn and bloating. I also notice that I get really bad stomach aches just before a bad headache.

Are you taking a potassium supplement? I think it makes all of this worse.

at first Diamox gave me heartburn really easy so i just lived off of like rolades and stuff like that and now it's not as bad as long as i don't eat right before i go to lay down for bed.

Diamox definitely causes heart burn. I didn't know this at first and like you I suffered this new and weird sensation I'd never had before...and of course my doctors never warned me about it. But, ironically, after I was first diagnosed and placed on Diamox, the doctors sent me home with a plethra of medications. One of those meds was a prescription for Pepcid AC...and I had no idea why. Finally after months of taking it as prescribed I asked why and I was told that Diamox can cause this side effect and I was given the Pepcid to try and control it. Hmmmmm....Things your doctor never tells you.

MM3

Thanks everyone.

I see military doctors but was sent to a Neurologist for the PTC, and he sent me to a retina specialist. I went back to both recently and was taken off the meds because my retina is back to normal. I was hoping once I was off the meds that these intestinal problems would have gone away. The Neurologist and the base doctors never told me that I would develop these side affects. The only one that has really listened to me when I discussed how bad the medication was affecting me was the retina specialist. He wanted me to take potassium, which I didn't because the military doctor said mine was fine. NO ONE told me that this could have been a side affect. I would have opted for the surgery had I known.

I felt so much better before they found the PTC. I sometimes wish that they didn't find it. My daily headaches were manageable. I guess I am glad that I am not going to lose my eyesight, but my quality of life is so dimished now. I just hope the Nexium that they just gave me last week will help to get rid of this problem.

Oh by the way, I was going to post to everyone individually, but I am new to this type of discussion board. If anyone can tell me how that is done, I would appreciate it. Thanks agan.

Lady:

In so many ways you sound like me. I remember feeling sooooo relieved when I was first diagnosed. After years of being told that I "just had migraines" (if that weren't enough), and knowing I had more going on. After years of being accused of drug seeking or being told that it was all in my mind, I was so relieved to finally have a diagnosis. Like you I thought the diagnosis would bring about a quick and easy cure. Take a pill and waalaaahhh I'm all better.

The biggest disappointment...still....is that the diagnosis just brought about more suffering and misunderstanding. Doctors don't know how to treat us, and instead of admitting as much they tell us there is nothing more they can do. The drugs we take are ancient and not meant to treat IIH so they cause extreme ugly side effects. And, if we are desperate enough to finally submit our bodies for shunt surgery we believe that will be the cure-all....many times we are disappointed to find out that's not the case....and our shunts require many revisions, tweaks and adjustments.

That being said, I promise you that without treatment symptoms worsen to the point that you have no choice but to submit to these ancient and sometimes torturous methods of treatment. Either way....we lose, until something more is done to help us. So...we hope. And, we hold on together, getting through each day thankful for the good days and struggling through the bad. The good news is that your not alone. We are always here if you need us....

Much love,

Khrystine

Thanks Khrystine.
I just got back from the base. They are going to have me take Nexium every twelve hours. If the symptoms do not go away within a week, they will have me schedule an appointment. I also have to do diet modifications--no orange juice, coffee, beans, chocolate, and fried foods. Basically, I am giving up my entire diet (haha).

I was also wondering if anyone else has neck and back spasms. I was wondering if these problems in this area that I have had for years may have contributed to this condition??? Thanks, Shirlee

I've had lower back pain for about 10 years. My paps was found a year ago and I started having mid-back spasms 6 months ago, neck and shoulder pain and spasms 2 months ago. I think the mid-back and neck are related to IH. It seems to fit the timeline. I have a disc that is slighlty bulging in my neck, but my neuro says that it isn't in the right place to cause these symptoms.

My neck spasm also started about 10 years ago. My daily headaches started a year ago. I went to a chiropractor a year ago. He took x-rays and said that I have something wrong with the very top neck bone. He said that when this bone isn't functioning right that my head and neck are squinched up against each other. He also said that that was the reason for my headaches. What he explained made a lot of sense and I am not describing with the right terminology; however, treatment was going to cost $1600, and I couldn't afford that. Everything got worse after that, and I finally ended up at the Neuro. I asked my Neuro if my spasm could have played a part in all of this. He said that it could and if we couldn't manage it, he would look into it. That was the last time anything was discussed. I guess once he did my lumbar puncture, he was going to focus on stablizing me with meds.

my pharmacist informed me that diamox can irritate the gastrointestinal tract. If you are that bloated and the reflux is really bad you should check out nexium, it's a wonder drug but you need a prescription.

Thanks Orchid79.

My doctor has prescribed Nexium. I went back yesterday because one pill a day did not last for an entire 24 hour period, so she upped my dosage to 1 pill every 12 hours. I agree the Nexium works really well for the gas-bloating; however, the acid reflux is still there just not as bad. She said to come back in one week if the reflux is not gone. I HOPE, HOPE, HOPE, this works. I am tired of being afraid to eat.

I had this really bad. I had even considered something being wrong with my esophagus it had gotten so bad. I , too, went to the hospital with chest pains.

I'm happy to say it gets better.

Something that really helped me was ginger. 1 teaspoon of ginger to a glass of water. It taste nasty but it's pretty good for heartburn and Gerd. Also, try sleeping on a couple of pillows so your head is elevated at night. Just until you get this under control.

Good luck.
Betty

Thanks Betty,

I am going to try the ginger. You mean 1 teaspoon of the powdered ginger spice I hope. I was wondering if I could add a tiny bit of sweetner? I have tried the pillows, but I think I am going to try a wedge with just one pillow. I will keep you posted.