Morning IMM,

All I can contribute is that I have read some people go as high as 4000 but that is very rare. Every doctor I talked to when I was at 1500 was SHOCKED at how much I was taking. I don't know many people other than you that are above 2000. Sounds like you have an allergy issue and that might prevail and dictate how much you can handle.

What I can tell you is I have much more energy after going off Diamox. I use to get winded just climbing up in to bed (my wife likes tall puffy beds). No more yeah! And this one you will not like. Now that I am off Diamox I have to pay attention to what I am eating to prevent weight gain. I don't know how but something about Diamox for me made it easy to lose and stay at a comfortable weight. Maybe it reduced my appetite cuz I seem to be snacking more now and or maybe it changed my metabolism but either way I got use to that and now need to figure out how not to gain weight.

TJ

MM3,

What does the doc say about all of your side effects? He can't be just blowing you off and upping a med that makes you miserable? Do you ever get the opportunity to discuss other options or combinations?

As for my experience, neuroman tweaks my meds about every 8 weeks. It begins to help after 2 weeks, but stops helping after 6. I call when it becomes difficult to function and he changes a dosage. He never changes the Diamox, which has been at 1000 mg almost since the beginning. He'll up the blood pressure pills, he'll up the multi-color pills (not sure about those... maybe seizurey-migrain sulfa). Never the Diamox. (By the way, I've started noticing occasional visiual wierdness in the last month and see my retina specialist in a couple of weeks... scary.)

As a side note, I saw a psychic yesterday. One of those 15 minutes for $15, and my closeset friend and I got readings for fun. I'll pass along something she said to me (well this is the gist anyway). I think it applies to you too, MM3. "Jen, you have to fight as hard for yourself as you would for someone else, because you are worth it. If it were someone you loved, you would demand mountains be moved, or you would go out and move them yourself. Don't just allow things to happen to you. Demand the care you deserve... from yourself, your family, and from your doctors." Psychic or not, she's right.

I looked up what I can for you-I was concerned when I read your post because I've been taking topamax and have developed a SEVERE rash now and some of the stuff I read up on said that the rash can lead to some kind of freak respiratory problems and that you need to seek immediate medical attention when you develop the rash.

Well, I know you're not taking topamax, but with you having that deep chest cough-I'm worried.

About all I could find was at this place:
www.inhousedrugstore.com/neurological/diamox.html

Read the section that says: the most important fact about this drug.
I'm not sure if your throat hurts, but if I were you, I might be at least just making a call or two to a physician of some sort.

Hi MM3,
All I know from working in hospitals is that if something like that happened to a pt. they were immediatly taken off the medication that was in question...even if it was just itching since it can lead to resp. problems (esp. resp failure....not to freak you out) among other things (like severe swelling). I would def. call your Dr. and have him paged to call you back asap. I don't mean to push so hard, its just that I have seen so many pt's who have had allergic reactions and their subsequent problems. Jazzy

ps. I used to be able to take vicodin but now it makes me itch and they always list it as an allergy when I go to the hospital.

Jazzy,

how quickly do you think that a rash could lead to resp. problems?
(If you know, that would be helpful information since I have a rash that covers about half of my body right now lol)

Hi Never,
I asked my hubby who is an RN and he was wondering when your rash started and how rapidly it progressed..but then he said "its really irrelevant since she needs to talk to her Dr. ASAP".

Sorry I couldn't be of more help, when i working with pt's, if I noticed a rash or the pt was complaining of itching I would tell the RN and she/he would contact the Dr. right away. I don't know how soon someone takes a medication at home and has a reaction and is then admitted (the worst I have seen is organ failure from allergies to meds). Not that it will happen to you, but as soon as you take any medication and notice a rash or itching or anything unusual you should call your Dr. right away. Hope you are feeling better soon, Jazzy

Yikes MM3, I hope you are at the doctors right now. This does not sound too good. Please let use know how you are and what the Doc says.

TJ

Jazzy!

Well my rash started about 3 weeks ago, I ran OUT of my topamax about 3-4 days after the rash started... but then when I finally got my script refilled and took it one night, it got TREMENDOUSLY worse.

I was taking the topamax for almost 1 month before I even recognized any type of rash or anything.

The reason why I'm asking you instead of a doctor is because I can't quite get to a doctor right now. =/ If I end up feeling that this is serious, though, or if there's still any risk of me just staying home and dealing with this rash, even without taking my topamax I'm going to go to the hospital. But if it can wait, I'll have to do that until I see my neuro-op on May 18th.

I'm not sure where to look online to find better info on the problems that a rash like this can have. I've looked a few places, but haven't had much luck really besides finding out about Steven Johnsons Syndrome (sp)

Hi Never,
Sorry you are going through so much. Since you can't go in to see your Dr. can you call him/her and ask the Dr. to call you back? I think it is very important that he/she knows what is going on.

from what I read it said that reactions can occur after taking a medication for awhile, which I didn't know.

I think it is very smart of you to just go to the Dr. if it gets worse.

I'm sorry you are going through so much and I hope your rash gets better soon! Jazzy

Never,

Sounds like an allergy to me. An allergen is something your body recognizes as an Invader and must Destroy. The medicine is something your body may have learned to have an allergy to through repeated exposure... which may explain how you reacted more quickly the last time you took it. (I had the same thing happen to me with Cipro. No reaction the first time it was prescribed. McJagger lips a few days into the second time a few years later, and it only got worse... Bubba Gump) Anyway, there are alternatives to Topamax. I'm not completely HA-free, but I'm still working and keeping up with my kids okay.

Sooo... Itchy Monkey and Never, you've got to tell your doctor about what's going on!

lol You're funny Bax.

But in all seriousness, thanks for the info!

I hope MM3's ok. =(

All:

Okay...I'm back after a brief stay at the hospital for respiratory and organ failure and Bubba Gump lips.......

Okay....not really....but, it sounded like a good response to all of your advice. (At least, it would be a cool, story to tell).

Truth is I did go to the hospital for a HA that couldn't be controlled with medications at home. (See response to KMama). I believe the itching was caused from the narcotics I was using. As for the Diamox, I am starting to have similar problems to the problems I had before. UTI, fatigue....and yes, some new issues, like a bit of a sore throat, achiness, and I feel like I have a bit of a fever although I haven't taken my temperature yet. I also have a bloody nose a lot. The rash seems to have improved some, so maybe I am more severely allergic to morphine and dilaudid?

Either way, I'm on the 2500 mgs. of Diamox, 20 mgs of Lasix, 60 mgs. of Proprananol, and 25 mgs. of Indomethacin at onset of HA. We are going to try and use Anti Inflammatory drugs instead of narcotics to try and stop the HA's as these seem to work better lately.

Thank you for all of your help and support. Bax, you never fail to make me laugh!

-MM3

Wakka wakka wakka....

We must never lose our sense of humor!