Who has tried Diamox and or Botox treatment?

[TarilynAlmighty]

Hey fellow Chiarians! Quick background- Dx at 17 and I just turned 24. I've tried TONS of meds, as we all have...I've been on Topamax since 2010. My headaches are starting to come back about everyday and they are horrible. I just heard about Diamox. Good? Bad? Are NS pro Diamox? Also, I heard about Botox injections in the back on the neck/shoulder for pain management? I am NOT ready for surgery. I'm already on 125mg of Topamax a day. Can I jump it up? I'd really appreciate the input and suggestions. Thanks!

-Tarilyn

[syrinx48]

Sorry to hear about your headaches. I don't have an answer for you, i haven't tried either one, so I hope some one will see your question and has an answer for you. It is rather quiet on this board for a long time.
I drop in so now and then, but can't give answers.

Annemarie

[TarilynAlmighty]

Thanks! Where in the world is everyone? This was the first place I found when I was dx. It saved me from getting my head cut open right away.

[razzle]

When FB took over and soooooooo many chiari boardsl:

[donny]

My wife has had one botox injection and I believe shes scheduled to get another one in a few weeks. They want to give her the shots every 4 months because any closer together the body will become imune to them and the botox would be innefective.
She has never tried the Diomox. She is currantly on 400mg of topamax which is the max dosage for her. Of course you would need to talk to your Dr about upping the dosage or the botox.
The botox so far has had marginal effects, some relief but not really what we were hoping for.
Hope this helps some.
Take care
Don

[taichi]

I have been on botox now for almost a year. I was on topamax. And I have had great results.
the last time I went he injected some in the base of my neck and my shoulders. My balance is awful and it has really helped the knots in my shoulders. I will be happy when medicare approves botox for you back pain. I have sm It has attacked my muscles and breathing is a great problem.I hope this helps. If you have other questions, please ask.


barbara
taichi

[pseudotumor]

I think Diamox is highly dependent on your problems. For me having severe issues with intracranial hypertension, I've tried it (a few times), to no avail and ultimately had to have a shunt put in my brain because my problem was just too far gone. But I guess it depends where you're at. I've also tried lasix which though also ineffective - I liked more because I experienced less side effects (side effects of both being potassium depletion resulting in horrific muscle cramps), but diamox also upset my G.I. system. There's also the option of potassium-sparing diuretics like aldactone which are a bit less harsh and don't make you run to pee every 20 minutes.

As for botox - I had my first injection on feb 14th. I didn't notice anything but am doing a second run in a few days because the first one apparently doesn't always take. I did notice my forehead still feels numb and it's hard to raise my eyebrows!

[serenefox]

Hi. Botox was tried by my neurologist on me and I did not respond to it.
Decompressed 7/2002. Sally

[reedy]

Botox has been suggested by my urologist to get my bladder a bit less spass-y. Haven't tried it yet, but I like the idea that it might be possible to become less leaky.

[syrinx48]

I have had Botox in the bladder, and it was a complete disaster. Within a week I could not pee anymore. As a result I got bladder infections after bladder infections, and still have. They gave me a catheter a demeure, a catheter which stays inside for a couple of month.

Due to al of this I have to catherise myself every day. I have residues in the evening of 300ml

Annemarie