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        New Message Board Archives >> 2004 Posts >> All Chronics....please read, IMPORTANT
        
(Message started by: Roxy on Apr 28th, 2004, 12:36pm)
Title: All Chronics....please read, IMPORTANT
Post by Roxy on Apr 28th, 2004, 12:36pm
The pharmaceutical company Allergan wants to get a rough idea of how many chronic cluster sufferers would be interested in participating in a study in the New England area.  The study would be in the Hartford, CT and MA area.  This would be a study on Botox.  It is being set up by Allergan., and they would like some kind of number so they can plan accordingly.

They want this information ASAP…..

If you are interested, please respond with a post here.  
Title: Re: All Chronics....please read, IMPORTANT
Post by Linda_Howell on Apr 28th, 2004, 1:16pm

sure wish  I lived on the right coast.

Linda
Title: Re: All Chronics....please read, IMPORTANT
Post by Karla on Apr 28th, 2004, 1:22pm
This chronic does botox and it didn't help at all for ch it helps my migraines.  Wish I lived on the right coast also.
Title: Re: All Chronics....please read, IMPORTANT
Post by 9erfan on Apr 28th, 2004, 1:27pm
another chronic who doesn't live on the right coast... :-/
Title: Re: All Chronics....please read, IMPORTANT
Post by Lizzie2 on Apr 28th, 2004, 2:06pm
not officially chronic or episodic since 1st "cycle" hasn't ended yet after 5+ months, but I have a couple of questions.  I know at Jefferson, I couldn't qualify for the Botox study because I had already had botox.  Is that true for this?  Also, do you have to be chronic as in..having had them for over 1 year?  And also...no other headache type?  I know I have not been able to qualify for a single study at Jefferson because I have New Daily Persistent Headache.  So..just curious!!

Lizzie :)
Title: Re: All Chronics....please read, IMPORTANT
Post by Renee on Apr 28th, 2004, 7:34pm
Rox,

Tell 'em to count me in but they better have a REALLY long needle to reach me in Texas!   [smiley=laugh.gif]

Sure wish I could help out!
renee
Title: Re: All Chronics....please read, IMPORTANT
Post by UN_SOLVED on Apr 28th, 2004, 8:41pm
I've already been approved for the Botox treatment (just recently) to be done here in southern Indiana. But until then,  I'm still working with the doctors from the Michigan Head Pain & Neurological Insitutue and I don't think they feel it will help at all[ . So, I'm just waiting for the 'next step' I guess. Right now on a new drug. (Cell Cept)

Unsolved
Title: Re: All Chronics....please read, IMPORTANT
Post by BstnEagles on Apr 28th, 2004, 9:36pm
I am a chronic in Boston and am quite interested in any new treatments.  Whats the deal with botox?
Title: Re: All Chronics....please read, IMPORTANT
Post by Tiannia on Apr 28th, 2004, 11:07pm
Almost chronic as my 1 yr anny is July 13 - but again I'm on the wrong coast...  Good luck to those who can do it.
Title: Re: All Chronics....please read, IMPORTANT
Post by kissmyglass on Apr 29th, 2004, 12:29am
Sign me up T....


Kev
Title: Re: All Chronics....please read, IMPORTANT
Post by UN_SOLVED on Apr 29th, 2004, 1:27am
All i've heard about Botox is that it hasn't been labeled as a 'successful' treatment for CH. Just another 'shot in the dark'. It's not a very painful experience I'm told, so I guess if you must try something, maybe it's worth a shot. I just wouldn't get your hopes up.
Also, BOTOX is a VERY expensive treatment. It may be hard to get insurance agancys to pay for this treatment.

Unsolved

PS If you haven't tried an Occipital Nerve block yet, I'd recommend that first (neuro premitting). It's virtually painless and may provide some great (but temporary relief)
Title: Re: All Chronics....please read, IMPORTANT
Post by Lizzie2 on Apr 29th, 2004, 1:33am
I had botox, but it was before I had CH.  I actually had botox 3 times.  The first time I got it, probably 15-20 shots to the face and head.  I came home and walked out to the mailbox to get the mail...and got stung by a wasp. LOL  I wanted to sit down in the driveway and cry!!  It took 8 weeks to work for me.  And then it reduced my severe headaches to about half the week..I still had a headache all the time.  It worked for about a month and a half.  2nd time I got it..right when it should have started working I had my figure skating accident, so who knows if it would have worked.  3rd time I got it...nothing.  Every time, I got it as part of a special demonstration or something where I only had to pay for part of it.

I agree...the occipital nerve blocks are better.  I've had them dozens of times.  Although for me, they only last a few hours.  I've been told they can last a long time for some people.  It does help my neck muscles for longer.

Lizzie
Title: Re: All Chronics....please read, IMPORTANT
Post by UN_SOLVED on Apr 29th, 2004, 1:48am
I've heard that OC blocks could last up to 6 months. I was told by MHNI that the average 'successful' PF period lasted about 13 days. My first lasted for 17 days. I was a great relief.

Unsolved
Title: Re: All Chronics....please read, IMPORTANT
Post by Lizzie2 on Apr 29th, 2004, 1:57am

on 04/29/04 at 01:48:54, UN_SOLVED wrote:
I've heard that OC blocks could last up to 6 months. I was told by MHNI that the average 'successful' PF period lasted about 13 days. My first lasted for 17 days. I was a great relief.

Unsolved


Was your success the reason they tried the OSNI?  I'm supposed to discuss this at my next appt......
Title: Re: All Chronics....please read, IMPORTANT
Post by BarbaraD on Apr 29th, 2004, 6:20am
Wrong place. I'm with Renee - do they have a LONG needle????

Chronic and waiting for a cure......

Hugs BD
Title: Re: All Chronics....please read, IMPORTANT
Post by UN_SOLVED on Apr 29th, 2004, 8:50am

on 04/29/04 at 01:57:12, Lizzie2 wrote:
Was your success the reason they tried the OSNI?  I'm supposed to discuss this at my next appt......


Exactly ! Dr. Rozen (MHNI) said that those who respond well to an ON block has a 'good chance' at success with the ONSI. Wish it would've helped me. It was worth a try. If I hadn't already tried it, i'd try it again !

Unsolved
Title: Re: All Chronics....please read, IMPORTANT
Post by Lizzie2 on Apr 29th, 2004, 9:18am

on 04/29/04 at 08:50:21, UN_SOLVED wrote:
Exactly ! Dr. Rozen (MHNI) said that those who respond well to an ON block has a 'good chance' at success with the ONSI. Wish it would've helped me. It was worth a try. If I hadn't already tried it, i'd try it again !

Unsolved


Hmmmm I wonder if it is worth pursuing for me since I never really had huge success from the nerve block.  My former neuro who moved away told me that most of the ones they've implanted at Jefferson have been for chronic cluster, but they have also done it for chronic migraine.  He said it has gone both ways...some people have had great success with it and some have had no success with it at all.  Guess maybe it's at least worth asking about when I go to see my doc!
Title: Re: All Chronics....please read, IMPORTANT
Post by Roxy on Apr 29th, 2004, 1:59pm
As of right now, we have no information on whether this trial will actually happen.  If there is a trial, there won't be a cost to the study group, so insurance and finances won't matter.

All Allergan wants right now is the information on whether there will be enough study subjects in the area.
Title: Re: All Chronics....please read, IMPORTANT
Post by Roxy on Apr 29th, 2004, 2:59pm
If anyone would like to read up on Botox, here's a link.



http://www.headachedrugs.com/archives/efficacy_botulinum_toxin.html
Title: Re: All Chronics....please read, IMPORTANT
Post by Prense on Apr 29th, 2004, 3:37pm
Sure wish they were further out west.....
Title: Re: All Chronics....please read, IMPORTANT
Post by Samantha_Smith on Apr 29th, 2004, 5:36pm
YES! YES! YES! ME ME ME ME  ...over here! Over here! I'm chronic! PICK ME PLEASE! Oh Please!

I just got a letter in the mail from Spaulding Rehab Hospital in Boston regarding being a research subject. My neuro, Dr. David Biondi, and his co-worker Dr. Elizabeth Loder run a pain and headache clinic there.  Dr. Biondi ROCKS!  He already did a study with Botox in regards to people with migraines apparently it looks like he's doing another one with chronic CH sufferers. I've been getting Botox injections from Dr. Biondi for about 2 years now. The Botox has improved my quality of life tremendously. I travel round trip 8 hours every 3 months to get Botox injections--its worth every minute.

People....if you are a chronic and have seen bad press regarding Botox please re-think your position.  Don't let the few people who have had a bad experience scare you off. Remember that every drug comes with side effects even O2 and Imitrex. (No, I don't work for Allergan.....wish I did though because maybe I could get these shots for free.)
Title: Re: All Chronics....please read, IMPORTANT
Post by jonny on Apr 29th, 2004, 8:12pm
There are no side effects from 02 unless theres an underlying problem........That said.

Ill let John Kerry have my Botox.

.............................................jonny
Title: Re: All Chronics....please read, IMPORTANT
Post by Roxy on Apr 30th, 2004, 6:54pm
bump
Title: Re: All Chronics....please read, IMPORTANT
Post by Roxy on May 2nd, 2004, 2:51pm
Only two?

Any one else?
Title: Re: All Chronics....please read, IMPORTANT
Post by mynm156 on May 2nd, 2004, 5:45pm
I dont live there but keep us posted I am ready to try ANYTHING!!!


Good Luck

MYNM156
Title: Re: All Chronics....please read, IMPORTANT
Post by Samantha_Smith on May 2nd, 2004, 7:53pm
Bump


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