I really wish I had an answer for you.
Sometimes I feel like my Lasix isn't doing anything either and I take 80mgs a day...I think how the heck can anything be swollen on such a high dose of a diuretic?
Anyway I truly hope you feel better...I know from previous posts that you haven't had the best of luck with your doc/office staff, but mightyou consider calling your doc if you are in severe discomfort?
Sending positive thoughts your way
Lucy

I'm even newer to all of this than you, so I don't have any answers, but I did want to say I'm SO sorry you're going through this nightmare. It almost seems like the Diamox really isn't helping you...how long ago was it that you increased the dose again? I'm thinking it was recently, if so, maybe it just needs a bit more time to kick in at the higher level.

I've been having the pulsatile tinnitus really bad since my stress test on Monday, along with sharp ear pain in both ears, and my neuro just said it's because my pressure's still up and I'll need to go higher on my Topamax this week to help with that. One last thought - I read on another IIH Support Forum that for many people it is worse with stress or fatigue (I know this is the case for myself as well), have you noticed this? If so, maybe there are things you can do to help with the stress (hard when you're in so much pain, I know!) and/or try to get some extra sleep.

MM3,

Something else to add to the never ending equation. Remember that Diamox was not designed to help with this illness but rather a drug that was found to help in many patients. It is not perfect. Some can't tollerate it and for some it doesn't do anything. When I went off Diamox my pressure remainded the same.

When I started Diamox it was somewhat like you where it seemed to give some relief for a little while then stopped working so we raised the dosage. Eventually at each higher dosage my body got use to it and it apprears that it was no longer effective.

My question is how much relief have you really been getting from Diamox? Is it really helping you? I recall one time you actually reduced your dosage, what happened then? Do you think it is possible that your body is getting use to the Diamox? If so that would explain pressure rising even though you have increased your dosage.

TJ
Pseudo Doctor

Thanks Pseudo Docs! It has been a little over a week that I have been on this higher dosage of Diamox. Yes, I agree that I believe my body grows accustomed to the medication and it stops working. I called my Opth. and she was shocked that my NS upped the dosage so much. She said she was going to call my NS and she is also recommending that I get in to see this specialist. I called the specialist's office and I am hoping she can provide answers. In the meantime....Summer has arrived in Rochester. Supposed to get 70-80 degree temps. this weekend. HA or not I intend on enjoying it....Even if I have to get all drugged up to do so! I love the sun!

As your Pseudo Doctor I must remind the sun lover in you that "Diamox" does warn about sun exposure so please add wearing adequate sun screen to your list of things to put in and on your body before you head to the beach or park or whereever it is you find sun in Rochester NY.

Have a great weekend. We just rented a dock for the summer in Lake Arrowhead so this BDay weekend will be a floating heaven for me (but a little cooler than your neck of the woods).

TJ
Pseudo Doctor

MM, Sometimes diamox does nothing, I haven't been on it in years and just deal with whats going on now, I hit over 3500mgs before my docs realized it wasn't helping but making me more miserable.

The heat will also raise pressures as well, I am swollen in lots of areas today as well, its 82 here in MI, the atmospheric pressures tend to affect this alot. Maybe YOU can call the doctor they want to get you in to see and let them know whats going on...at the very least they may be able to advise or know something else to help...

Try to stay cool though as the heat will likely make you feel MUCH worse.

Charlotte