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Topic: Cluster Headache Studies at Jefferson (Philly) (Read 2738 times) |
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Lizzie2
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Cluster Headache Studies at Jefferson (Philly)
« on: Jan 26th, 2006, 8:21pm » |
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Wanted to post this here for you all to see...
CLUSTER HEADACHE STUDY:
The Jefferson Headache Center is seeking individuals 18 to 65, who are
currently experiencing a typical cluster period that you anticipate will
last at least 8 weeks, you may qualify to participate in this study.
Qualified participants may be eligible to receive, at no cost:
•Study drug
•Study related physical exam
•Study related testing
See if you qualify to participate in this investigational drug study. If
you or someone you know is suffering from cluster headache, call the
Jefferson Headache Center today at 215-955-2037.
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E-Double
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Re: Cluster Headache Studies at Jefferson (Philly)
« Reply #1 on: Jan 26th, 2006, 10:18pm » |
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Guess chronics are out then
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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Lizzie2
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Re: Cluster Headache Studies at Jefferson (Philly)
« Reply #2 on: Jan 26th, 2006, 11:32pm » |
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E I'm not sure about that. When I wanted to be in a cluster study they had before, part of the criteria was that you had to have had at least one cycle that started and stopped like a "normal" episodic CH cycle. But the way they worded it when I asked, it didn't sound like being chronic kept me out of the study - but rather that I'd never had a cycle end. Make sense?
If you're interested, I'd still call anyways!
Hugz,
Carrie 
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BikerBob
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Re: Cluster Headache Studies at Jefferson (Philly)
« Reply #3 on: Jan 27th, 2006, 3:15am » |
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I would really like to know what "investigational drug" they are testing in this drug study for CH. If anyone here qualifies for this study, please call them and find out about the "study drug" and the "detailed testing protocol" they will be using. It probably won't have a brand name (yet) but they should be willing to tell you the chemical composition. It may sound something like these:
4-methylaminosulfonyl-N,N-dimethyltryptamine [C14H21N3O2S] or
2-(3,4-dimethoxyphenyl)-5-[2-(3,4-dimethoxyphenyl)ethyl-methyl-amino]
-2-(1-methylethyl)pentanenitrile [C27H38N2O4] or
2-methyl-4-(4-methyl-1-piperazinyl)-10H-thieno[2,3-b][1,5]benzodiazepine [C17H20N4S]
If you find out what the chemical compound is I may be able to find out more about its pharmacology. If it's a new drug in testing by a drug company they should be willing to give you that information because they would have already patented it.
I'm also very interested in the testing protocol.
Please post that information in this thread.
Thanks, BB
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E-Double
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Re: Cluster Headache Studies at Jefferson (Philly)
« Reply #4 on: Jan 27th, 2006, 5:53am » |
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not interested in anymore meds.
just wanted to know for others.
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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Lizzie2
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Re: Cluster Headache Studies at Jefferson (Philly)
« Reply #5 on: Jan 28th, 2006, 11:28pm » |
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I don't qualify for their studies on this either, but I got the advertisement for it in my email through the university's broadcast messages, and I wanted to pass it along for those who may benefit. I'd hazard a guess that the drug is already on the market but doesn't have FDA approval for CH - that's one of the most common reasons for drug trials. Otherwise than that, I don't know because I didn't ask.
Carrie
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Mr. Happy
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Re: Cluster Headache Studies at Jefferson (Philly)
« Reply #6 on: Jan 29th, 2006, 12:12am » |
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With all due respect to Jeff..........I called last year about a study. They wanted me to come in blind, but since the turnip truck was still close by, I pressed for answers. Was hoping for the Zomig trials. Finally wrangled out the study was on DEPAKOTE. Bzzzzzzzzzt. Wrong anser.
I'm all in favor of going into studies.....but Really.....
Ask lots of questions first.
RJ
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May those who don't want any
Have memories of never getting any.
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Lizzie2
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Re: Cluster Headache Studies at Jefferson (Philly)
« Reply #7 on: Jan 29th, 2006, 12:36am » |
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I think that depakote/depacon study is over. I *could* be wrong but thought they were wrapping that one up a year ago. This is also a new ad. I think they are still pursuing the zomig study though with Dr. Alan Stiles? Took a long time to get through IRB for some bizarre reason. Well anyways...it's been awhile since I've asked them about studies. They've always got a lot going on.
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BikerBob
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Re: Cluster Headache Studies at Jefferson (Philly)
« Reply #8 on: Feb 16th, 2006, 3:16pm » |
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I was curious about this study because I thought it might be a new CH drug. I called the phone number.
The study drug is Topamax. Half of the participants will get Topamax and half of them will get a placebo.
BB
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seasonalboomer
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Re: Cluster Headache Studies at Jefferson (Philly)
« Reply #9 on: Feb 16th, 2006, 3:23pm » |
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on Feb 16th, 2006, 3:16pm, BikerBob wrote:I was curious about this study because I thought it might be a new CH drug. I called the phone number.
The study drug is Topamax. Half of the participants will get Topamax and half of them will get a placebo.
BB |
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And you'll know you're getting the placebo because of the continued eyeball extrusion imitation being done on your head
scott
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Richr8
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This will be easy...
« Reply #10 on: Feb 16th, 2006, 3:50pm » |
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The obviously stupid ones WITH THE BULGING EYEBALLS will be the ones who received the real Topamax. My experience anyway. Won't go there again. Now if it had dne something for my HAs, I'd be palying a different tune.
Rich
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pf wishes,
Rich
...because yesterday is history and you never know what tomorrow will bring.
"Med free"- A few seeds and lots of O2-LG but not great.
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Dragnlance
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Re: Cluster Headache Studies at Jefferson (Philly)
« Reply #11 on: Feb 16th, 2006, 4:37pm » |
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 Quote:| The obviously stupid ones WITH THE BULGING EYEBALLS will be the ones who received the real Topamax |
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Easy to test, have them add 2+2 and subtract 3.
if they answer "7" you found a Topomax user!
Dragn
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blessedmomof5
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Re: Cluster Headache Studies at Jefferson (Philly)
« Reply #12 on: Mar 26th, 2006, 11:03pm » |
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question: when you see advertisements for these studies and the area code is out of area do they expect you to travel to wherever they are ? IE do we have to look for studies in our own state or close by to participate?? how do you find out about the studies in your area? and are they safe? what info do i need to know ?? Thanks all!
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BikerBob
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Re: Cluster Headache Studies at Jefferson (Philly)
« Reply #13 on: Apr 5th, 2006, 3:20pm » |
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I got a call from Jefferson Headache Center. In addition to the Topamax study, they are now conducting another cluster headache study.
This second CH study is a Zomig nasal spray study. Participants will visit Jefferson twice. During the first visit they will be questioned about their CH history to qualify, taught to maintain a headache diary, and given three doses of nasal spray. One will be 5 mg Zomig, one will be 10 mg Zomig and one will be a placebo. Participants won't know which is which. The second visit will review the effectiveness of each in aborting acute attacks. For more information call Coleen at 215-955-2024.
Also, I suggested that they add another component to the Topamax study: Prior to dispensing Topamax, and again 3-4 weeks into its use, administer the CogState cognitive tests for clinical trials http://cogstate.com/ to measure Topamax's effect on cognitive abilities.
BB 
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Lizzie2
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Re: Cluster Headache Studies at Jefferson (Philly)
« Reply #14 on: Apr 6th, 2006, 7:46pm » |
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As an added note - Jefferson's Zomig study is in conjunction with the other locations doing the same study - it is coordinated overall by NECH. The NECH Zoming nasal spray study has been mentioned many times on this board, so people should be familiar with that one! This is a good study for us because we need to get FDA approval for more than just imitrex!
There are also several migraine studies going on right now. They may be beneficial for some here who also experience migraine or supporters who are solely migraine sufferers. Each study has its own individual criteria, and even if a person has more than one headache type, they may still qualify for a study there. Worth a phone call if you live in the area!
Thanks for posting the update, Bob!
Carrie
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seasonalboomer
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Re: Cluster Headache Studies at Jefferson (Philly)
« Reply #15 on: Apr 20th, 2006, 4:41pm » |
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Someone call DJ -- the site is being attacked!
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rocklobster
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Re: Cluster Headache Studies at Jefferson (Philly)
« Reply #16 on: Jul 6th, 2006, 10:12am » |
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I called on July 3rd, left my information and was told that I would be receiving a call either yesterday or today. I'm still waiting. The drug is Zomig, but the medication survey here does not give it very high marks, so even if Jefferson calls, I'm not sure that I want to be involved.
Imitrex injections usually work, and I don't feel like suffering through another 5 hour cluster that I might be able to get rid of in a few minutes with imitrex.
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rocklobster
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Re: Cluster Headache Studies at Jefferson (Philly)
« Reply #17 on: Jul 7th, 2006, 12:00pm » |
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Just an update.
I decided not to go ahead with the trial, due to the method of testing. They give you 3 doses, one is 5 mg, one is 20 mg, and the third is a placebo. Then they want you to wait for 45 minutes after you take whatever it is you have. If it doesn't work, you are screwed, because they won't give you a pain killer like perc or whatever. Imitrex usually works for me in about 10 to 20 minutes, but when it doesn't, I'm looking at a 5 hour or more battle. I don't need 3 extra potential 5 hour headaches just so Jefferson can test Zomig. I don't know how they get anyone to go along with that. I'm on day 2 of the lemonade cleaner fast, and it's getting easier. Yesterday was the pits, plus I had 3 clusters. So I'm hurting, mean, and hungry. I took off work today to spare me and the people I work with.
Thanks to all for checking in. I do appreciate this site with folks that actually know what a cliusater does to you. Larry
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chewy
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Re: Cluster Headache Studies at Jefferson (Philly)
« Reply #18 on: Aug 13th, 2006, 1:09pm » |
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For the benefit of new people Kevinpix is our resident troll. He serves no purpose except to confuse, obfuscate and distress posters while providing a wealth of misinformation of his own.
The best response to him is no response. All we do is inform people as best we can that his posts are unsound.
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Stju1970
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Re: Cluster Headache Studies at Jefferson (Philly)
« Reply #19 on: Sep 12th, 2006, 3:47am » |
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This is so co-incidence. Last Friday, I was at Thomas Jefferson University/Hospital for an doctor's appointment. I told the doctor that I was having pain on the upper right eye, and feeling pressure on my forehead, and didn't why was I having this condition for over 3 years(very painful condition). To my amazement, my nuro-doctor told me that I have cluster headache. I ask the doctor is this condition cureable, and she said after you turn 45 age old. I mean is this true? To make a long story short, My doctor prescribed medication(Prednisone, and Depakote) for me and schedule a MRI, and blood testing this week. I am very sad, and misable that I have this illness but there is nothing I can do about except make the best of the situation.
Note: All these times, I have been getting acupunture treatment but never take any medication. I think acupunture gives me temp. Relief, not permanent relief. It helps but not a lot. My acupunture's doctor though I have Tregeminal Nuralgia but now I find out I have cluster headache.
Maybe I should sign up for clinical studies at Jefferson.
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BigCoffinHunter
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Re: Cluster Headache Studies at Jefferson (Philly)
« Reply #20 on: Sep 12th, 2006, 10:27am » |
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on Jul 6th, 2006, 10:12am, rocklobster wrote:I called on July 3rd, left my information and was told that I would be receiving a call either yesterday or today. I'm still waiting. The drug is Zomig, but the medication survey here does not give it very high marks, so even if Jefferson calls, I'm not sure that I want to be involved.
Imitrex injections usually work, and I don't feel like suffering through another 5 hour cluster that I might be able to get rid of in a few minutes with imitrex. |
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I've personally been having very good luck with the Zomig nasal. IF I use it quickly, and shoot it in the non-CH nostril, I've had it abort attacks very quickly. It's expensive as all heck though. Luckily my insurance has given me a decent amount per month.
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nicholsb
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Re: Cluster Headache Studies at Jefferson (Philly)
« Reply #21 on: Sep 26th, 2006, 10:12pm » |
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I tried the Topomax as a preventative before my last cycle would have typically started (which it didnt until 6 months later). The stuff strung me out so bad I couldnt sleep and I have a pretty high tolerance to drug side affects. It felt like being on a high dose Prednisone and made me extremely tired and spacey during the day. I'd stay away from it, but I here it works wonders on epilepsy. All of these drugs just seem to postpone the inevitable rather than make it go away.. I'll stick with my imitrex.
By chance has anyone tried Sinol by Sinusbuster? I have heard ads on Sirius that this stuff is supposed to ward off clusters. Anyone have any luck with it?
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Lizzie2
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Re: Cluster Headache Studies at Jefferson (Philly)
« Reply #22 on: Oct 14th, 2006, 11:08pm » |
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on Sep 12th, 2006, 3:47am, Stju1970 wrote:This is so co-incidence. Last Friday, I was at Thomas Jefferson University/Hospital for an doctor's appointment. I told the doctor that I was having pain on the upper right eye, and feeling pressure on my forehead, and didn't why was I having this condition for over 3 years(very painful condition). To my amazement, my nuro-doctor told me that I have cluster headache. I ask the doctor is this condition cureable, and she said after you turn 45 age old. I mean is this true? To make a long story short, My doctor prescribed medication(Prednisone, and Depakote) for me and schedule a MRI, and blood testing this week. I am very sad, and misable that I have this illness but there is nothing I can do about except make the best of the situation.
Note: All these times, I have been getting acupunture treatment but never take any medication. I think acupunture gives me temp. Relief, not permanent relief. It helps but not a lot. My acupunture's doctor though I have Tregeminal Nuralgia but now I find out I have cluster headache.
Maybe I should sign up for clinical studies at Jefferson.
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I'm sorry I missed this until now... Who did you see there, if you don't mind my asking? I'm a little concerned that they said clusters can be "cured" after age 45. This is not the case, sadly... There are a lot of different things that people have tried, and everybody is different in what works for them. The depakote may be helpful, but the prednisone will probably have the biggest effect!
Have you tried verapamil or lithium? Many have success with these - separately or in combination. The verapamil dose is generally fairly high for clusters, but the folks at Jefferson know this. Of course, whoever it was that told you they would be cured after age 45 might not know this.....but that just saddens me to hear that someone there said this!
At any rate - if you're still sticking around here (I note you've only made the one post), then please let me know and we can talk about different treatments and coping strategies especially! Did they recommend trying oxygen?
Hang in there!
Carrie
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