Share your Diamox experiences

Have a question about a symptom, procedure, medication, diagnosis, research, or coping? Ask questions and share what you know with others

Moderator: pmaxwell

Share your Diamox experiences

Postby mrsariel » Wed May 16, 2007 1:59 pm

Let me be the first to write now that the board is back up. *giggle*
As some of you know I have been on Diamox now for a few months. I am not symptom free, but it has been better.

I really hate how fatigued I have become. I don't know if its from the pills or I am just getting old. *L* I have also changed my habits since I know I have CM and what at times can cause it to flare up.

Then again, sometimes my symptoms flare up and I say ok what did you do this time?

I have been taking a potassium suppliment and the levels have been good with that.

Just looking for others who have been on this and some feedback.

Thanks

Lisa
mrsariel
 
Posts: 574
Joined: Wed May 16, 2007 1:46 pm
Location: Connecticut

Postby cash71 » Wed May 16, 2007 2:22 pm

Hey Lisa,

We've "talked" about Diamox before. I am also on it but I have reduced myself to taking it only on days when the pressure gets bad. My BP was bottoming out to 70/40 when I was taking it everyday and I was getting really dizzy and soooooooooo freezing cold from the low BP. Now I know that's not how you are supposed to take it but I'm going to see Dr. B in a month so until then I will do the best I can with my "system.

I have been fatigued for 2 years every since I became really symptomatic. I have not noticed any increased fatigue from the Diamox. Mostly the BP and some extra tingling in the hands and feet. And my potassium level has stayed OK. I do take a multivit. with some added potassium and eat a banana every day.

I seeing a neuropthamologist next week due to ongoing visual symptoms. They are much, much less than they were before starting on Diamox (I had black holes in the center of my visual fields!) but I still have these "twinkly" lights around the edges of both visual fields. I had a visual field test last week and go to see him for the results next week.

bye for now,

Caroline
Be kind for everyone you meet is fighting a harder battle (Plato)

Syrinx C3-T9, CM zero, OTC, cranial settling, dysautonomia/POTS, and ?EDS

see my blog for more info: http://www.chiariandsyringomyeliaincanada.blogspot.com/
User avatar
cash71
 
Posts: 1362
Joined: Wed May 16, 2007 1:30 pm
Location: Vancouver Island

share your diamox experience

Postby Jenintexas » Wed May 16, 2007 3:49 pm

Now do they prescribe this medication pre-surgery or for individuals that have had the surgery?

The only reason I ask is because I went to the neurosurgeon this past Tuesday. Of coarse he told me to get the surgery. But when I asked about alternative ways to dealing with CM he said to just take over the counter meds. Advil, Tylonol etc.

I changed my diet and saw a little improvement but now I have numbness in the area where the Chiari is and sharp pains in my back and sometimes all the way out my big toe. Is this normal?

I am thinking about the surgery too but would like to hear others feedback on what they think regarding the surgery.

Newly dx last month 8mm
CM1

Jennifer :D
Jenintexas
 
Posts: 64
Joined: Wed May 16, 2007 3:36 pm

Postby cash71 » Wed May 16, 2007 3:55 pm

Jen,

Unless your ns is an expert in the care of cm and sm I would advise you to get a second opinion. This is a pretty major decision and it doesn't hurt to have more than one point of view.

I just watched a video on the TCI website that talked about using Diamox to control symptoms and hold off on having surgery if it controls your symptoms. Although Dr. Kula was specifically talking about the symptom of severe pressure headaches that some with Chiari have and find unbearable to live with. Go to www.thechiariinstitute.com click on the videos tab and I think it was the video entitled Medical Management Overview. There are also alot of other really informative videos here.

Good luck!

Caroline
Be kind for everyone you meet is fighting a harder battle (Plato)

Syrinx C3-T9, CM zero, OTC, cranial settling, dysautonomia/POTS, and ?EDS

see my blog for more info: http://www.chiariandsyringomyeliaincanada.blogspot.com/
User avatar
cash71
 
Posts: 1362
Joined: Wed May 16, 2007 1:30 pm
Location: Vancouver Island

Postby mrsariel » Wed May 16, 2007 6:18 pm

Jen,
Of course NS's want to operate! Thats all they do. I was diagnosed by one when I had my suspicion that it might be CM. The other one said its such major surgery that if your symptoms are not debilitating don't do it.
PS his speciality wasn't CM I guess.

When I questioned both about my symptoms progressing they both said they didn't know.

After hearing and reading all I could, I am not ready or bad enough to do the surgery. If I did get to that point, I would hi-tail it to the specialists in Long Island first.

Like Cash said, Make sure you get a specialist.
Lisa
mrsariel
 
Posts: 574
Joined: Wed May 16, 2007 1:46 pm
Location: Connecticut

???????

Postby hayla2 » Wed May 16, 2007 6:39 pm

That is weird. Since the site came back on, it no longer recognized me. I had to register again. Urgh!

Anyway, I just started the diamox. It makes me extra sleepy. I am hoping that subsides over time. Melissa
hayla2
 
Posts: 91
Joined: Wed May 16, 2007 6:37 pm

Postby mrsariel » Wed May 16, 2007 6:47 pm

Hayla,

So maybe the Diamox is making me sleepy too. Its always nice to be able to compare symptoms with others. This way you don't feel like your going thru it alone.

Keep me posted.
I will PM you my email address.
Lisa
CM 7mm diagnosed 12/06.
Tethered Cord diagnosed 10/07 @ TCI
TC surgery 5/13/08
http://www.caringbridge.org/visit/lisas
mrsariel
 
Posts: 574
Joined: Wed May 16, 2007 1:46 pm
Location: Connecticut

Postby cash71 » Wed May 16, 2007 6:58 pm

Melissa,

Everyone had to re-register. All the old posts and usernames data was corrupt and couldn't be saved
Be kind for everyone you meet is fighting a harder battle (Plato)

Syrinx C3-T9, CM zero, OTC, cranial settling, dysautonomia/POTS, and ?EDS

see my blog for more info: http://www.chiariandsyringomyeliaincanada.blogspot.com/
User avatar
cash71
 
Posts: 1362
Joined: Wed May 16, 2007 1:30 pm
Location: Vancouver Island

Postby hayla2 » Wed May 16, 2007 7:05 pm

Huh.....................that is strange. I am just glad we are all back on now. I have missed chatting and getting and sharing new info. Melissa
hayla2
 
Posts: 91
Joined: Wed May 16, 2007 6:37 pm


Return to All About Chiari, Syringomyelia, and Related Disorders

Who is online

Users browsing this forum: No registered users and 4 guests

cron