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        New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> botox shots as a treatment??
        
(Message started by: corgon on Sep 30^th, 2005, 3:37pm)

Title: botox shots as a treatment??
Post by corgon on Sep 30^th, 2005, 3:37pm

my name is corgon and i am a cluster sufferer. I get them each year from September to january inclusive. I have been to allergists, chiropractors, massage therapists, sinus surgery, and neurologists. my conclusion is simple: NOBODY SEEMS TO BE ABLE TO ASSIST ME. I have taken drugs, oxygen, and now I am entertaining botox injections. Has anyone tried them for relief of clusters?Does anything help? I get a 15 minute warning that i will be getting one bvecause my kneck begins to tighten up. During my clusters, I have the following symptoms: i get hot, the right side of my head, kneck, and my right eye experience terrible pain. i loose the center of my vision, i vomit, and become panick stricken. i usually get them while I am sleeping but this year i have had 2 to 3 a day. My kneck and upper back are loaded with muscle "knots", HAS ANYBODY HEARD OF BOTOX INJECTIONS FOR RELIEF? Please advise and God Bless anyone who suffers from these tormenting clusters.

Title: Re: botox shots as a treatment??
Post by E-Double on Sep 30^th, 2005, 4:07pm

research suggests that it can be helpful for migraine yet does not look promising for CH.

good luck!

E

P.S>>>> you'll have a wrinkle free temple ;)

Title: Re: botox shots as a treatment??
Post by lionsound on Sep 30^th, 2005, 5:57pm

Hi Corgon,

One neuro suggested Botox for me and I said "no thank you."

It may have helped with my migraines, would have done nothing for my CH and he just seemed too trigger happy with the needles for me. He even offered a few extra jabs if I wanted some cosmetic stuff--eeeek! And he said there was no guarantee it would work. I am a needle wuss anyway and the thought of poison in my face doesn't thrill me. I saw him only once.

Maybe it's time for you to go to a knowledgeable Headache specialist.

Be well and PF!
-lionsound

Title: Re: botox shots as a treatment??
Post by Kris_in_SJ on Sep 30^th, 2005, 7:06pm

Hi Corgon,

From everything I've heard, the jury is still out.

I'm with Lionsound. See a knowledgeable neurologist. I would also suggest your read this and take it with you. Perhaps you're just not receiving the right combo to help decrease the length and intensity of your cycles.

http://www.brightok.net/~mnjday/chtherapy.pdf

PF Wishes,

Kris

Title: Re: botox shots as a treatment??
Post by unsolved1 on Sep 30^th, 2005, 9:16pm

http://www.thestreet.com/_tscrss/stocks/biotech/10229421.html

Title: Re: botox shots as a treatment??
Post by don on Oct 4^th, 2005, 7:28am

Wont stop CH but you'll have nice full lips as you pace around.

Title: Re: botox shots as a treatment??
Post by nextup on Oct 4^th, 2005, 6:54pm

I took Botox 4 different times trying to get relief from migraine pain which in some ways has been as bad as the cluster pain which I now have. Botox worked the very first time but did nothing the subsequent 3 times.

Title: Re: botox shots as a treatment??
Post by unsolved1 on Oct 4^th, 2005, 10:50pm

on 10/04/05 at 18:54:53, nextup wrote:

migraine pain which in some ways has been as bad as the cluster pain .

That statement there tells me --> Theres NO WAY you have clusters!!

UNsolved

[<----Migraine Pain ---->]

[<------------------------Cluster Pain---------------------------->]

Title: Re: botox shots as a treatment??
Post by nextup on Oct 5^th, 2005, 6:18am

The comment about "That statement there tells me --> Theres NO WAY you have clusters!!" is an ignorant one. You are very very wrong! You know nothing about me or my situation. I thought this board might be more useful than it is. Thoughtless remarks like that are not helpful. This will be my last post.

Title: Re: botox shots as a treatment??
Post by unsolved1 on Oct 5^th, 2005, 6:33am

C'mon don't cry on me. You're right, I know nothing about your situation ... but I do no that migraines don;t compare to CH. I appologize, so now you can stay ;)

You gotta admit, that was a very dumb statement YOU made !

PS In what ways is Migraine pain as bad as cluster pain ?

Title: Re: botox shots as a treatment??
Post by kimmeesue on Oct 5^th, 2005, 3:27pm

on 10/05/05 at 06:18:37, nextup wrote:

Is that the sweet smell of troll I'm picking up? [smiley=nopity.gif]

Title: Re: botox shots as a treatment??
Post by seasonalboomer on Oct 5^th, 2005, 3:50pm

on 10/05/05 at 06:18:37, nextup wrote:

In what ways was the board not useful. You received very good feedback from a number of board citizens, who, although they did not support your idea of botox, were quite helpful. If you don't like the feedback, I'm sorry, but it is no reason to dash all the knowledge that you might glean here as not useful. Sorry you're so sensitive. Maybe you'd prefer we all just "get excited" about every new thing. Sorry, wrong place for that -- we tell it like it is.

scott

Title: Re: botox shots as a treatment??
Post by Jill on Oct 5^th, 2005, 5:01pm

I dont get it - what do people expect when they come here? I mean, give it a chance and you will find compassion, understanding, support and so much more!

But you have to give it a shot and take the good with the bad - this is online after all.. Sure there are going to be people that you dont agree with or things that are said that you dont like but isnt it like that everywhere? As I have always heard - take what you need and leave the rest!

There was nothing said that was wrong or said in a mean way - if someone says that there CH is as bad as their migraines than either they have a high pain thresh hold or there is something other than CH going on. Does that make sense?

Anyways, hopefully this person will come back and learn what this board has to offer and start over.. hate to see a CH'er leave since it is hard to find people who understand these headaches and all that they entail anywhere else..

Jill

Title: Re: botox shots as a treatment??
Post by don on Oct 5^th, 2005, 10:17pm

Quote:

I thought this board might be more useful than it is.

To any newbies reading this thread.

This site is the most comprehensive cluster site in the world. It is extremely helpful IF you have clusters.

Title: Re: botox shots as a treatment??
Post by Origin on Oct 11^th, 2005, 9:05am

I've been using Botox injections for my episodic cluster headaches for two years.

The first time we tried it, it didn't have a lot of effect, but I believe that was because of the location of the shots. As we began to experiment, we found that by tracing some of the nerves and hitting "pressure points" with the injections, the severity of the clusters dropped significantly at first, and then dramatically as we got better at it.

I'd say the pain level has been reduced about 60%-70% for me. And the nicest part is, one set of injections, started about 1-2 weeks before when the cycles usually hit, last the entire cycle!

Personally, (NOT a doctor...just a patient) I think it's worth a shot. (no pun intended)

Good luck to you all...

Title: Re: botox shots as a treatment??
Post by Jasmyn on Oct 12^th, 2005, 5:56am

on 10/04/05 at 18:54:53, nextup wrote:

I do not want to minimize anyone's pain ever but a few things should be understood about this site:

1. Like Don said

Quote:

This site is the most comprehensive cluster site in the world. It is extremely helpful IF you have clusters.

2. People should read the left hand side to educate themselves a bit before making comments like the one about migraine.

3. We all need answers that is why we have so many questions but over the years we had alot of scams, quick fixes, trolls and meds peddlers here to be wary.

4. On this site there are more people educated in my opinion about this condition and the meds to use (as there is alot of first hand experience here on meds and treatments by way of trail and error by real sufferers) than there are GP's or Neuro's with the knowledge of this.

5. We are a family of people and supporters that look out for each other, help, advise, vent and care. We will protect our site with all it takes.

6. We appreciate it when new people come to this site. We don't like to have fellow Clusterheads suffer on their own but it is good policy to learn to know us and so that we can learn to know you. For that you need to be a real sufferer/supporter and you need to stick around.

Edit to add:

7. We may appear like alot of grumpy old men (women are never grumpy) but if you are a Clusterhead you will understand the effects of no sleep, pain, over medication, fear and frustration. You'll recognize yourself.