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        New Message Board Archives >> Medications, Treatments, Therapies 2005 >> Clinical Trials?
        
(Message started by: mischki on Sep 17th, 2005, 1:37pm)
Title: Clinical Trials?
Post by mischki on Sep 17th, 2005, 1:37pm
I was searching for info yesterday, and came across listings for clinical trials at:

http://www.centerwatch.com/patient/studies/cat100.html

Anyone involved in any of these?  Thoughts on participating?

I would think it would be good in that you would get "free" help.  It would be bad, though, if you were in the control group getting sugar :P.

I was especially interested in this one:

http://www.centerwatch.com/patient/studies/stu38546.html

mostly because they offer travel compensation.

Any thoughts?  (Please don't yell at me though, I'm just asking - not suggesting!)  :-/

-mischki
Title: Re: Clinical Trials?
Post by marlinsfan on Sep 17th, 2005, 4:16pm
I've never participated, but like you said I would hate to get a Kip 8-10 and fight it with placebo.

Why are you undecided?
Title: Re: Clinical Trials?
Post by jon019 on Sep 17th, 2005, 5:28pm
Hi Mischki,

At 23 years of this crap and counting I am ready to try ANYTHING, and almost have, (not kudzu or shrooms yet but they're on the list) and I bet there are a bunch of clusterheads who feel likewise.

This one (capsaicin spray) is no different although I note it received spirited discussion and scathing reviews on another thread.

Tried it myself (why not) with Tabasco (which, next to jazz, blues, zydeco and cajun music is proof that God loves us, Louisiana will be back!) and cayenne pepper powder (yup, right up the nostril before it closed like a CH ignorant doctors mind). Actually worked for a while (placebo or not, I couldn't care less) but alas, no longer.

Should you or anyone choose to participate in trial, I wouldn't worry about placebo effect. Cannot image how they could simulate the "burn" and if they did, wouldn't it elicit the same physiological effect?

Regards

Jon019
Title: Re: Clinical Trials?
Post by FrankF on Sep 17th, 2005, 7:11pm
I've thought about participating in these trials over the years. Unfortunately, they have to do the random double-blind study where some participants receive the trial drug and others placebo, because that is how they demonstrate if the drug works.

But I would not want to get placebo and have a Kip 9-10 and not be able to do anything about it. I did see one clinical trial a few years ago where they gave the participants some drug (probably Imitrex injection) as a back up. So if you were one of the unlucky ones who got placebo and were about to go over the edge with a Kip 9-10, there was a way out.
Title: Re: Clinical Trials?
Post by Redd715 on Sep 17th, 2005, 7:19pm
Did you see the dates on this?

Trial listings updated: July 2, 2004 at 12:31:05 PM
Title: Re: Clinical Trials?
Post by FrankF on Sep 17th, 2005, 7:31pm

on 09/17/05 at 19:19:49, Redd715 wrote:
Did you see the dates on this?

Trial listings updated: July 2, 2004 at 12:31:05 PM



It doesn't matter what the date was. My comments were regarding clinical trials in general.
Title: Re: Clinical Trials?
Post by unsolved1 on Sep 17th, 2005, 10:56pm
There aren't any clinical trials for cluster headache.

UNsolved
Title: Re: Clinical Trials?
Post by nani on Sep 17th, 2005, 11:03pm
Was that one the NECH Zomig trial? That one may be over. I think some of the folks here participated in that one.

jon, why not try kudzu (or even clusterbusters) before you try a clinical trial?

pf wishes, nani
Title: Re: Clinical Trials?
Post by Pinkfloyd on Sep 17th, 2005, 11:28pm

on 09/17/05 at 16:16:13, marlinsfan wrote:
like you said I would hate to get a Kip 8-10 and fight it with placebo.


Rescue meds are normally allowed in cluster trials specifically for this point. The docs "usually" aren't wanting to have anyone go through that either. Depending on what is being tested, you might not even qualify for the trial if you aren't responsive to a rescue med that wouldn't effect the outcome of the trial.

If something is being tested on you, and you aren't responding, you won't know if its because you have the placebo, or the med they are testing and it isn't isn't working. They'll know but you won't. Doesn't effect the outcome of the trial in most instances.

I'm sure the fear of untreated K-10s scares many people from these trials. I wish they'd make the rescue med provisions known early on. Most cluster trials are with very small numbers. Probably as much for this reason, as being a small patient base.


Bobw
Title: Re: Clinical Trials?
Post by jon019 on Sep 18th, 2005, 12:38am
jon, why not try kudzu (or even clusterbusters) before you try a clinical trial?  

pf wishes, nani

Hi Nani,

Just haven't gotten there yet. First time I heard about either one was last week when I rediscovered you all.
Like I said, they're on the list.

Trying to digest all this incredible info while sometimes rolling on the floor with tears in my eyes (NOPE, not a CH, because what isn't heartbreaking or enlightening, is damned funny).

You people have a gift as good as meds. Its compassion, hope, and humor and it's wonderful.

Regards

Jon019
Title: Re: Clinical Trials?
Post by Jonny on Sep 18th, 2005, 2:33am

on 09/17/05 at 23:28:00, Pinkfloyd wrote:
Most cluster trials are with very small numbers.



on 09/17/05 at 22:56:35, unsolved1 wrote:
There aren't any clinical trials for cluster headache.



Huh?
Title: Re: Clinical Trials?
Post by E-Double on Sep 18th, 2005, 7:40am
You can call Headache centers to see if there are legitimate trials going on.

This is old but can give you an idea...

http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action=display;num=1108735025


on 03/11/05 at 23:23:58, E-Double wrote:
I just finished with my 3rd "abort".......

This one had to be the 10 mg because it actually worked 10 minutes!! now I feel the nasty a$$ side-effects of damn triptans ....sunburned feeling and feel itchy and like my skin is crawling YUCK!!!!!!

The first one I think was a 5mg....didn't touch the attack yet I felt gross after.....

The second was definitely placebo.......didn't do a thing + no side-effects YET and this is weird, I had my shortest attack in 10 months which was "classic" Came and went as quick as onset....Weird b/c mine usually "taper down"......

I will call back Monday to set up the follow-up........

I don't think this is a med that I want to continue to use but hopefully it has helped some and I know in the long run it will help MANY others and this was pretty much MY main reason for participating.

Good luck all!!

Eric


Jose,
You are definitely given opportunity to use "Rescue" meds. In the zomig trial it was Oxygen but had to wait 30 minutes after taking the Trial medication.

For me it was worth it just to get in the door. Which is why I did it  ;)
Title: Re: Clinical Trials?
Post by marlinsfan on Sep 18th, 2005, 10:03am

on 09/18/05 at 07:40:07, E-Double wrote:
You are definitely given opportunity to use "Rescue" meds. In the zomig trial it was Oxygen but had to wait 30 minutes after taking the Trial medication.


That's good to know, Eric. As PinkFloyd said, they should make that known up front and get more of us to take them up on the trials.
Title: Re: Clinical Trials?
Post by unsolved1 on Sep 18th, 2005, 11:15am

on 09/17/05 at 22:56:35, unsolved1 wrote:
There aren't any clinical trials for cluster headache.

UNsolved


OK, I may have exaggerated a bit ... but cluster studies are very hard to find. ANyone know where one is now ?

UNsolved

(sp)
Title: Re: Clinical Trials?
Post by mischki on Sep 18th, 2005, 11:39am

on 09/17/05 at 19:19:49, Redd715 wrote:
Did you see the dates on this?

Trial listings updated: July 2, 2004 at 12:31:05 PM



No I didn't.  But like I said, I just happened across it while surfing and I was interested in knowing the board's opinion.  I would trust what experienced CHers say before investigating any further.


on 09/17/05 at 16:16:13, marlinsfan wrote:
I've never participated, but like you said I would hate to get a Kip 8-10 and fight it with placebo.

Why are you undecided?


That's more or less why I'd be undecided.  That, and the fact that it would take a lot of time and energy to have to go somewhere to participate in one (all the listings I saw were hundreds of miles away) and not be assured that it would help, when we finally have a great doctor here who will help.

Thanks for all the input.  I really was more curious than considering it...


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