Thoughts on this??? I am torn...

I know they talked about wanting to do that to me in the base of my skull. They claim it has helped some big time with headaches. We never really got out of that stage though, so I cant honestly say.

that is what the thought is for me Kev... and just nervous...

I was sent to the neurologist in May or June and he recommended Botox for my 2.5 year long headache.

He wouldn't guarantee any results, said it was a 50/50 gamble since my head pain is not typical of what is normally treated by Botox and that I would have to do 3 rounds before I could know for sure whether it would work or not work. Each round would end up costing me about $1000 after what our private insurance covers.

My physiatrist (rehab doc) really wants me to try it. My physiotherapist thinks its a waste of money.

The idea of Botox and the list of potential side effects freaks me out, especially given that every drug we've tried so far to treat my head pain has ended up with intolerable side effects, even weird ones that almost no ones gets.

I've heard quite a few people say they've been helped by Botox, but when they tell me what their symptoms were like before, they were more like regular headaches that came and went, not constant head pain like I experience.

So for now, I'm not doing Botox. I won't rule it out forever, but while this head pain is awful, I'm just not ready to do something that potentially could make it worse. Especially not for that kind of money. Not when I'm about to go for a vision therapy assessment and investigate that, anyhow. That will be plenty expensive enough.

Starr

What are the side effects?

My physiatrist was talking about this and said it works for some but not others plus it's very expensive. I asked him if he could put some around my eyes while he was at it

Do you have migraines?

Sitting here with a headache so wondering too what the side effects are for Botox?

Currently trying it. Had 1 round of 3 - did not touch the pain. Waited 3 weeks for it to kick in - had to go back to my regular doc to up my pain meds. Guess I will try the 3 rounds but not hopeful. Keep telling them that I do not think it is the same pain as migraines - but since I never had one of those can't back it up much. It is my brain that hurts - it feels raw. I guess they don't get it.
GB

new "headache" neurologist concurred that while Botox may help with some of the pain a lot of it will not be helped... she put me on an antiquated drug that they use as part of a cocktail with Verapamil to see if that will help... we will decide in 2 weeks...

Ginger..RAW is the perfect word!! I couldn't explain how my head and neck felt. I would say it felt like it was rubbed over and over on concrete. they'd look at me like I was nuts. So far nothing has worked.

Doctor who does deep brain stimulation said he's meet with me but that is a mighty big step

Hey markneil - I said the exact thing to my doc - I feel like someone is slowly dragging my brain across the sidewalk.

Nice to know some gets it