My neuro is trying botox on me this afternoon. I am hopeful that it will help. The only person I know who has tried it is Alchemy/Jim and it did n't help him, but I have the occipital neuralgia also and think it may help with that.

Wish me luck  :)

Charlotte

Hi
My first neuro. suggested botox. Not to me, but to my GP.
At first the idea totally repelled me. What if.............a million things
went through my mind. Then I thought, hey I'll get rid of lines in my forhead, maybe I could talk him into around the eyes.

No, but this is a really serious subject. I did some research (not a lot)
and didn't find too much on the subject.
I was looking for some concrete evidence that this actually works and could'nt find any.

Please let us know the outcome. I'll be first on line. Good luck to you &
GOD Bless-Deb :-?

Thinking of you today Char.   Love you hon!   Good luck, and I'll catch you later to see how you are. [smiley=hug.gif]

Hoping it gives you the relief you need Char, be nice to see you catch a break. [smiley=hug.gif]

Joe

I was offered this last year. I didn't find anything that suggested it worked for CH.

Hope it helps you. If it does I will definitely give it a go.

Good luck.

Ellick.

Wishing you all the luck in the world :)

Sending possitive vibes your way

Walk in Peace  Iddy

I wanted to get through a whole day before I came back to the thread.

Last Friday, I ended a high cycle so this week was much better but heading back up.  

The botox was injected in 20 spots, a small amount. It stung but not as bad as a bee.  The neuro said it could take up to 2 weeks to get into my system and if it didn't help at all, we could try it a 2nd time in 12 weeks, and if it didn't work then we should forget it.  If it does help, it usually lasts 8  to 12 weeks, and  can be repeated about every 12 weeks until a tolerance is built up which may take about 7 years.

Most of my ch is on the right, occasional odd balls on the left, and the occipital neuralgia is back, side, front, and goes back and forth.

Today, I only had heavy shadows and the occipital neuralgia was all gone.  Most of the day I was my happy self. This is much better than last year.  I don't know if it will help when I hit the next high cycle, but it could!  So, I am cautiously optimistic.  I am not sure if I would recommend it, yet, since I still need to go through more time to see what happens next.  So far, so good. I'm glad I'm trying it.

Charlotte

ps this is not a beauty treatment - totally different areas than the wrinkles, lol

When I used to get 8 migraines or more a month along with my ch I did botox.  It stoped my migraines but did nothing for my ch.  I did botox every 3-4 months for a couple of years.  Then I had a hysterectomy and my migraines stoped mostly so I stopped the botox.  I am praying that it offers you some relief.

OK, Hitting high cycle and can now say the botox does not stop this, however, it feels like slam time so it helped with the buildup part of mini-cycle.I will be going in to work late, after the O2. Normally the slam time is just 4 hours of one after another.

Obviously, something is helping enough that I can sit still and feel rational, so even though i'm in hte grip, I have a life.

So, all you guys & gals who  worry about me, I am having something of a good break, and a real life.

I would have to say I wouldn't recommend botox for ch only, but it really helps if you have other facial nerve pain and TACs, it seemed to really help with the unnamed short headaches and occipital neuralgia.

Charlotte

Charolette,

I have been thinking about you, praying & wondering if this did help you. I am so glad to hear that you feel a little bit better. God Bless you.
I have to say though, that I truly wanted you to come back & say that UR pain free. For you and for all of us.

I was going to do the botox thing and well, now, I don't think so. I know that you said it takes time to build up so maybe there is some hope. Are you going to continue the treatment??Keeping U in my prayers- Deb :)

following up.  The botox seems to work very well for me.  It was so gradual that I didn't notice it until it started wearing off again.  I had the 2nd round May 13.

Early this morning, I had a full blown leftie but my regular right side is doing well.  I still get the drip, sweating, and pacing, but the pain is minimal.

I think I would recommend it for ch, with qualifications - it is not an instant fix and the success is relative.  It really has improved my quality of life.

Charlotte

Hi Charlotte

This is the first time i read this thread and the first time I've read that botox is considered a treatment for headaches and CH's. Very interesting indeed.

Really happy to hear it has improved your quality of life and offered you some relief. :)


Lefty...!

Great you found something that helps you so much!  8-)

I hope that it works for you dear.... I tried it about three years ago and after two vials and 47 different injections... I left there and it seem to spawn a real nasty one...
I hope for your sake it works... if it does let me know, I would pay the money to try again if maybe the injections were in the wrong location or something.