Botox..
 

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?

I was having debilitating migraines and getting the Botox worked for me. I am due for my second round of treatment this week. They also injected some into my trapezius muscles (which were like a cord) and my scapular muscles. This also helped. I still have frontal headaches 24x7 but the Botox keeps me out of the "dark room" now.

The common possible side effects are readily available online, but I would suggest discussing them with your neurologist or whomever would be performing the injections for you.

I discussed them with my neurologist and he's "the guy" in the city that everyone likes to send their migraine patients to for botox because he's very good at the injections and has done so many. There are other docs in the city that do them, but none as experienced and he was very upfront about the side effects posted online and some others.

I don't want to get into them here, knowing the high levels of anxiety that some people can experience when discussing things like this, which is why I'm suggesting to talk to your doctor about it and decide if its right for you.

Right now, for me, I've decided its not. Maybe at some point in the future. But given how overly sensitive I've been to everything they've given to me up until now, it gives me pause.

And technically, I would not describe my head pain as a migraine or even a headache. Its head pain, that I've had constantly without a break for 2.5 years. To me, that does not qualify as a migraine or a headache. But what do I know?

Also, no one can find any neck injury or muscle issues. We tried cortisone and lidocaine injections with no improvement at all.

Best of luck.
Starr

They called today and want to get into a consult before doing them.

Not sure how I feel about them, something I seriously need to think about. I dont want to google the side effects, so maybe you can pm me?

Anywho, most of the time mine are mingraines. I guess their current thought process is im suffering from "migralepsy" and this could potentially help out both the migraines and the "seizures." Its funny how they dont listen to me about the seizures, but now all of a sudden they think im suffering from this. Also comical is how they said my MRI was clear, but this new neurologist claims the MRI proves this would help. When I questioned them on the phone, they wouldnt answer me and said we would talk at the consult if WC accepts it. Ugh, what does that even mean?!

I swear, some of these neurologists must have brain damage far worse than any of us for their thought processes to switch so quickly on a dime.

WOW! I have not looked up the side effects... I will now... I am supposed to go friday... this dr is a neurologist and a ocular neuro... she does a lot of work with empty sella... which i have... I am still up in the air about this as well... I will PM you side effects...

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:p

I just had my second round of treatment last week. So far, so good. It has changed my life and had gotten me out of the "dark room". They also injected the left over into uber tight muscles: traps, scaps and rhomboids on my left side.

Well considering my accident aged me a good 10-20 years i'm pretty sure that after this nightmare i'll consider some botox to preserve whatever looks are left.

botox
 

not sure but this botox is not the same potency as the stuff used in cosmetic procedures.

I go next week for my consult to see if im a candidate for it. Im not having high hopes for it.