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        New Message Board Archives >> 2005 General Board Posts >> I need help finding something.........please  
        
(Message started by: Woobie on Apr 22^nd, 2005, 7:30pm)

Title: I need help finding something.........please
Post by Woobie on Apr 22^nd, 2005, 7:30pm

I need to find posts about BOTOX as a treatment....but the search function isn't working for me.

maybe someone out there could help a sister out????

anything on botox.....

it's important! :-/

thanks ya'll. :-* :-*

Title: Re: I need help finding something.........please
Post by nani on Apr 22^nd, 2005, 7:33pm

Here's a few to start:

http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action=display;num=1112116432

http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action=display;num=1111105991

http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action=display;num=1108356244

Title: Re: I need help finding something.........please
Post by Woobie on Apr 22^nd, 2005, 7:34pm

holy shit nani - you're quick!

ty ty ty ty ty :-* :-*

Title: Re: I need help finding something.........please
Post by nani on Apr 22^nd, 2005, 7:52pm

Here's another. ;;D

http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action=display;num=1108743988

Title: Re: I need help finding something.........please
Post by BobG on Apr 22^nd, 2005, 8:13pm

And a few more...........
From ScotL 5-2-01
http://www.clusterheadaches.com/wwwboard/messages/90396.html

From Vanasa 5-2-01
http://www.clusterheadaches.com/wwwboard/messages/90391.html

From LJJ 623-01
http://www.clusterheadaches.com/wwwboard/messages/97719.html

From Vicki C 3-14-01
http://www.clusterheadaches.com/wwwboard/messages/82524.html

From Dan 10-16-01
http://www.clusterheadaches.com/wwwboard/messages2/114357.html

Title: Re: I need help finding something.........please &
Post by Ueli on Apr 22^nd, 2005, 8:22pm

Here 133 posts from the old message board:

http://tinyurl.com/77uaa

[smiley=smokin.gif]

Title: Re: I need help finding something.........please
Post by Lizzie2 on Apr 23^rd, 2005, 2:08am

Woobs,

Are you searching just for botox for CH or also for migraine and some other conditions (RA)?

I can give you my personal testimony on my trials of botox, and I can also link you to tons of info on it, although it'll take me more than tonight.

Can you specify more about what conditions/reasons you are looking for info on about it?

Luv ya!
Lizzie :)

Title: Re: I need help finding something.........please
Post by Jayne on Apr 23^rd, 2005, 9:28am

Woobie,

Don't waste your money sweetheart. I tried it twice and it cost me huge $$$$ as I did it through a doctor and it failed miserably.

Title: Re: I need help finding something.........please
Post by E-Double on Apr 23^rd, 2005, 9:47am

Got rid of all my............

wrinkles ;)

Research appears to lean towards being relatively effective for some kinds of migraine yet doesn't look as promising for CH.

Title: Re: I need help finding something.........please
Post by Woobie on Apr 23^rd, 2005, 11:04am

A friend of mine at work has migraines really bad. She's been to the diamond headache clinic. they've tried everything.. so their next move is botox. SHe was wondering if I heard anything about it from you guys.. because she knows about Ramon's clusters, and knows we have lots of headache friends.. some with migraines.

And I specifically remember DTruett (anyone heard from him) having success with it... and other threads on it. I remembered some mentioning their migraines.. etc. So I thought I would check it out ...
but the stupid search function wasn't working for me.?? I dont know what i'm doing wrong

you guys ROCK... thank you!

tina

Title: Re: I need help finding something.........please
Post by Lizzie2 on Apr 23^rd, 2005, 11:28am

Woobie,

I had botox done 3 times. The first time, it took 8 weeks to kick in, but it probably reduced the severity of my migraines by half for at least a month and a half. It was well worth it to me because I was able to get through my first piano recital without losing my mind from pain! Lifesaver :)

But then, I had it two more times. The 2nd time, just as it would have been kicking in to work, I had the figure skating accident - so it never was effective then. The last time, it didn't do anything. :( But I was very greatful for the first time having it help! It was expensive and I managed to do it through demo experiences with my doctor - often I'd just have to pay the doctor's fee, but the medication was free because they were using it as part of a demo for other physicians...such like that.

Here's a couple articles from the forum I host on. I believe Teri Robert wrote both these articles, but I know once in awhile one of our other hosts guest writes for her. At any rate, they are good articles. If you go to those forums, you can find tons of posts about botox and use for migraine.

Botox for Head Pain, Largest Study Yet
Botox! We keep hearing about it in the news and discussing it in our forums. Now, the results of the largest study to date regarding Botox and a headache and Migraine preventive are out: Botulinum toxin type A, brand name Botox®, is an effective preventative therapy for headache and Migraine pain in chronic sufferers, according to the largest study performed to date, presented at the 45th Annual Scientific Meeting of the American Headache Society (AHS).
http://headaches.about.com/cs/prevention/a/ahs03_botox.htm

Four Paralyzed by Fake Botox Injections
In Oakland Park, Florida, four people were paralyzed by botulism when they were injected with what they thought was Botox®. The injections were administered by Bach McComb, an osteopathic doctor whose medical license was suspended in 2003 on charges of overprescribing painkillers to patients, including two who died. His trial is scheduled for February of 2005
http://headaches.about.com/b/a/133264.htm

Best of luck, Woobie - and I'd be happy to share a little more about my botox experience with y ou if you'd like!

Hugz,
Lizzie :)

Title: Re: I need help finding something.........please
Post by sandie99 on Apr 23^rd, 2005, 2:03pm

Nobody could het me try bo... 8)

Title: Re: I need help finding something.........please
Post by dtruett on Apr 26^th, 2005, 9:52pm

This is way too weird to believe! I haven't been to the site for maybe two years, but have to do some botox research. Do a search and happen to pick this thread. Scroll down and see... Woobie is asking where I am! ;;D I'm here!! What an amazing coincidence!!!
I recently had my 3rd treatment since 11/02. The first was efficacious in 3 days. The second took about a month (no-I don't think it was the natural end of the cycle). Got one two weeks ago and it aborted a terrible cycle in about two weeks with a couple of breakthrough clusters. My problem is that my neuro's unbelievably incompetent, bureaucratic office told me when I went in for an office visit, waiting for my authorization, that it had been approved. Now I found out they were wrong. New insurance this year-new problems. I fought Aetna to Level II appeals and won before. Now I have to fight PacifiCare, and that's why I stumbled upon the thread. Yeah, I know I shouldn't have to pay, but my neuro just doesn't want to eat the cost of the meds, so he'll give me some break if we lose. It's worth eating the cost to keep him, because I LOVE my neuro and I HATE HIS OFFICE!!!!!!! I'm gathering research again for the good fight, so if anyone has appeals problems, let me know and I'll be happy to dump the URLs I find into an Email.
p.s. Thanks for asking about me, Woobie. Made me feel damned good. ;;D

Title: Re: I need help finding something.........please
Post by Woobie on Apr 26^th, 2005, 10:52pm

WOW - that's COOL

Glad you're alive!! Nice to see you again!

Cant help ya much on the reasearch, tho - sorry! LOL

Title: Re: I need help finding something.........please &
Post by Gator on Apr 27^th, 2005, 1:11pm

on 04/26/05 at 21:52:36, dtruett wrote:

I'm gathering research again for the good fight, so if anyone has appeals problems, let me know and I'll be happy to dump the URLs I find into an Email.

Welcome home dtruett! Sorry you are having so much trouble with your insurance. That seems to be another common side effect of this disease. You fought Aetna and won? I'd like to know what magic words were used to do that. I have Aetna through the wife - AETNA SUCKS! I'd appreciate it if you tossed me that e-mail. Aetna is giving me fits. I went through the appeals to get more imitrex and was basically told by them to go ahead and get a lawyer and file a complaint with my state insurance commissioner, 'cause they would not give me more. 3 - 5 or more attacks per day for the last 17 months - no prevents that work, only O2 and the gift of a Cluster Angel give me the ability to abort.

Good luck on your battle with the beast and with your new battle with the insurance mafia.

Title: Re: I need help finding something.........please
Post by dtruett on Apr 28^th, 2005, 8:12pm

They ALL suck! If you want, email me offline and I'll send you the letter I sent Aetna. It won't be too pertinent, because it was botox-specific. I too needed more Imitrex, but after reading the board, figured it was a lost cause. In brief:
I sent in the first appeal with basic info. My neuro and I figured we'd lose this round.
2. I hit them hard on Level II. I did an in depth cover letter listing every med I'd ever tried, including the fact that polypharmacy gave me serotonin syndrome in 1995 and put me in a coma for 8 days, with an 80% mortality expectation. I researched headache and botox on the web and printed about two dozen articles showing how effective it was, sending them return receipt.
3. We (neuro and I) had a phone conference call with Aetna's lawyer, head doctor, a nurse, and some others I can't remember. Neuro pointed out a Kaiser study showing that botox is less expensive than treating with meds.
4. Got a call back in 20 minutes. Appeals lady said it usually takes 3 days and it's usually denied, but I was good to go. The doctor said that this caused him to go back to the national office and review Aetna's policies re: botox and headache on a national basis. I don't know if it changed anything.
If it makes you feel any better, having PacifiCare for a year, I long for a return to Aetna. After all the nice glossy brochures are sent to you telling you how wonderful they are, the bottom line is, well, the bottom line. THEY JUST DON'T CARE!!! :-[ To paraphrase Bill Clinton, "It's all about the money, stupid!" Good luck.