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Topic: Zomig Nasal Study updated Apr 20th (Read 2325 times) |
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catlind
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Zomig Nasal Study updated Apr 20th
« on: Mar 16th, 2004, 11:23am » |
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Dear CH'ers,
There is a study moving forward regarding zomig nasal spray in the use of cluster headaches. Please read the post on the OUCH site for information and details on how to be a participant. This is what OUCH US can do best, supply the patients that suffer to help the doctors and researchers find better more effective medications while we walk the slow road to a cure.
EDITED TO ADD:
You do not need to be on the east coast, and you do not need to be in cycle to call and get the details. This trial will be coordinated with other centers and it won't be a short term thing. If you are interested AT ALL please call and get the details. They will give you the information you need to participate.
Quoted from the NECH letter to us regarding this trial (so don't let lack of insurance or funds stand in your way):
Quote:During the study, patients will receive the drug and related medical care at no cost. Please contact Lori for any additional information you need, or to discuss logistics. We also appreciate any suggestion you may have.
With best regards,
Marcelo Bigal and Lori Choyce
203-322-2748
The New England Center for Headache |
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http://www.clusterheadaches.org/members/cgi-bin/yabb/YaBB.cgi?board=news ;action=display;num=1079438924
Quote:Thank you all for the over-whelming response to our posting. Right now the study is still in a hold mode due to medication shipments being delayed to sites and some sites are still awaiting IRB approvals. We are looking for people who are able to travel to the following sites by car: Scottsdale Arizona, Houston TX, Philadelphia PA, and Stamford CT only.
If you are not located near one of these areas please do not call about this study. There will be other studies to come that you will be able to participate in down the road. We applaud your enthusiasm and wish we could have others sites that are participating all over the country but as it stands, these are the only sites at this time available. So thank you all for your patience, enthusiasm, understanding and willingness to participate. And if you are in an area listed above, please call Lori at 203-322-2748 and she will take your information so that when the study begins they can call you.
Lori Choyce |
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Cat
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| « Last Edit: Apr 20th, 2004, 2:42pm by catlind » |
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Bob P
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Re: Zomig Nasal Clinical Study
« Reply #1 on: Mar 16th, 2004, 1:16pm » |
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Good work Cat and OUCH. Now you right coasters better get on the phone and be part of this. Cat's been pounding on the researchers' door and hollering that we're here to help. They've said ok, we want your help. We NEED to give it to them now or we better just crawl back in holes from here on.
Join this study!
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catlind
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Re: Zomig Nasal Clinical Study
« Reply #2 on: Mar 16th, 2004, 2:54pm » |
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Don't let the location of the NECH deter you from calling or participating. My understanding was that there were other centers across the country that would be participating as well.
So if you are interested call the NECH and get the details and there may be a center near you hosting parts of the trials as well!
Cat
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Linda_Howell
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Re: Zomig Nasal Clinical Study
« Reply #3 on: Mar 16th, 2004, 4:06pm » |
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I just called NECH. Lori is going to call me back tomorrow with the areas of the country that are also having these trials done, since we're not all on the East Coast. I'll post the cities when I get the info.
Linda
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BarbaraD
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Re: Zomig Nasal Clinical Study
« Reply #4 on: Mar 16th, 2004, 4:14pm » |
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This is a BIG GOLD STAR for OUCH folks. Cat and Tracey have done a teriffic job.
For the FIRST time, we've got a study all our own. We're not going to be lumped into Migraines as an after thought.
But as Linda said -NOW IS THE TIME TO STAND UP AND BE COUNTED -- be a part of the solution. If there's a possible way get in on the study. This is just the beginning of big things....
Hugs BD
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Mr. Happy
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Re: Zomig Nasal Clinical Study
« Reply #5 on: Mar 16th, 2004, 7:15pm » |
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on Mar 16th, 2004, 1:16pm, Bob P wrote:| We NEED to give it to them now or we better just crawl back in holes from here on. |
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Agreed. This is a real acid test for OUCH. If the Org can't provide enough test subjects zippity quick, it may be a tad difficult to be taken seriously after this.
Like Linda, I'm waiting for a callback. Doubtful I'll be able to participate (Beastless for the nonce), but want as much info as possible.....things like requirements, time frames, length of stay at the clinics, accomodations, etc. Hopefully, we'll get the full scoop.
Interesting news,
RJ
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Kevin_M
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Re: Zomig Nasal Clinical Study
« Reply #6 on: Mar 16th, 2004, 8:00pm » |
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Thanks Cat 'n the Hap,
Regional info would be really a helping hand.
I'm a heavy imitrex user for seven years, but if U of MI participates or somewhere closer does an out-patient thing, I could get cleaned up for a time and contact them. Not in center cycle and might be able to stay off the imi for an appropriate period to see if they accept me. Be happy to help if it is practical to fit in with work. Details appreciated.
Mine's losing steam though with new meds this round,
it's on the ropes. Down to one or two imi's a day finally. Making a slow switch to oxygen.
Thanks for the notice.
Kevin M
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| « Last Edit: Mar 16th, 2004, 8:04pm by Kevin_M » |
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Donna
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Re: Zomig Nasal Clinical Study
« Reply #7 on: Mar 16th, 2004, 9:48pm » |
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This is OUR study. We sought out the right people (thanks Cat and Tracey) and they want us (CHers) to help with this study.
We've been thinking and talking and writing letters and wishing for this to happen for a long time...and today it has.
This is exciting and it is finally our opportunity to be counted. Let's hope that we show a huge response and lots of participants because real help is within our reach. We need to grab it.
Be sure to read the letter on the OUCH Business Board.
It is really happening!
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BlueMeanie
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Re: Zomig Nasal Clinical Study
« Reply #8 on: Mar 16th, 2004, 11:52pm » |
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I would probably call to check it out, but i'm not in cycle and hopefully won't be for at least another 6 months.
Thanks for the hard work you're doing CAT.
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Linda_Howell
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Re: Zomig Nasal Clinical Study
« Reply #9 on: Mar 17th, 2004, 12:17am » |
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I agree that it would probably be more advantageous to use us chronics. We have no "down time" Give us an hour or so, and we'll come up with a HA for them..But those of you who are in cycle right now are also good for this trial. Those of you who are not in cycle....well, This trial isn't going to be over with in a few weeks or anything like that.
LindaH
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Mastifflvr28
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Re: Zomig Nasal Clinical Study
« Reply #10 on: Mar 17th, 2004, 1:37am » |
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I know a FEW chronics that need to get in on this trial 
And I *MIGHT* actually be out of cycle, whooo hooo.
Went pf when I quit smoking...coincidence??
I'll stop the verap soon and let ya'll know
Mast
Three weeks, 16 hours, 51 minutes and 45 seconds. 868 cigarettes not smoked, saving $151.91. Life saved: 3 days, 20 minutes.
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Melissa
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Re: Zomig Nasal Clinical Study
« Reply #11 on: Mar 17th, 2004, 7:35am » |
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You know, I hate to say it, but... this is the first time I wish I was in cycle so I can help out with the study...
There, I said it!
I'll shut up now 
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catlind
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Re: Zomig Nasal Clinical Study
« Reply #12 on: Mar 17th, 2004, 9:22am » |
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Thanks for the kudo's folks, but they are misplaced.
Everyone of us has done what we can in our own way to help each other out, be it through OUCH or one on one with other sufferers.
This trial would have happened whether we were involved or not, OUCH being involved will make things much easier, as they have a huge resource at their disposal now. Like the letter says, it would have taken considerably longer if they had tried to pull from their own patient base.
Remember just call and get the details, doesn't matter if you are in cycle or not, call to find out what is needed. You never know
In the words of Mast, thanks for being part of the solution
Cat
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Roxy
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Re: Zomig Nasal Clinical Study
« Reply #13 on: Mar 17th, 2004, 11:05am » |
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I just got off the phone with Lori at NECH. I called her to sign up for the study. She said that they are still in the planning stages for this, and that NECH hopes to be up and running by next week.
There are going to be other locations for the study, they are waiting for IRB (International Review Board) approval for the other locations.
These locations will be:
Mayo Clinic, Scottsdale, AZ (Dr. Dodick)
Houston Headache Center, Houston, TX (Dr. Matthew)
Jefferson Headache Center, Philadelphia, PA (Dr. Silberstein)
If you are wanting to join the study, Lori did say that she thought there would be only two office visits. If you can travel twice to any of these areas, please sign up.
She said only two people called yesterday, I was the third caller this morning. Come on guys.....call in.
Let's flood them with phone calls.
Roxy
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Elaine
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Re: Zomig Nasal Clinical Study
« Reply #14 on: Mar 17th, 2004, 12:29pm » |
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This is what everyone has been waitting on people to start trails and test. Its here ! Two visits thats not a lot.
There are lots of people in TX and surounding areas.
Pick up the phone. This thread should be longer than any other thread on the board.
Way to go cat! I am calling now!
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Elaine
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Re: Zomig Nasal Clinical Study
« Reply #15 on: Mar 17th, 2004, 1:00pm » |
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We need to flood these people with phone calls. We need to let them know we are serious and want help.
If you guys do not do it, then how do you expect to ever get any help. They will not have anything else to do with us if you don't. You can forget ever getting the word out. You can forget ever being on any talk show and being heard. You can forget a lot5 of things.
Sitting around crying about your pain won't help any thing get up and fight. CALL THESE PEOPLE!
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thomas
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Re: Zomig Nasal Clinical Study
« Reply #16 on: Mar 17th, 2004, 1:08pm » |
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I made the call 
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cbolony
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Re: Zomig Nasal Clinical Study
« Reply #17 on: Mar 17th, 2004, 2:23pm » |
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You are doing a great job Cat going next week to start the study.When you come Cat call me or email me and i will meet you there only live 15mins away from the NECH
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Jackie
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Re: Zomig Nasal Clinical Study
« Reply #18 on: Mar 17th, 2004, 3:49pm » |
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I called and added Blake to the list.
Yes, we live far from any of the trial centers and Blake is pain free......for now.
However, I wanted his name on the list. I wanted it know that he is a clusterhead. I wanted him recognized as being out there by the researchers, doctors and drug companies. I wanted him counted. I want you ALL counted. I want them to know that you are ALL out there suffering.
PLEASE call and add your name to the list. You may not be chosen to participate. You may not be able to make the trip if you are chosen. Who's to say...if enough of us call in they could possibly add other trial locations.
I'm tired of you all having to ride on the coat tails of migraine research. I want you recognized and counted as clusterhead!!!!!
End of plea.....bless all your hearts,
Jacks 
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Donna
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Re: Zomig Nasal Clinical Study
« Reply #19 on: Mar 17th, 2004, 4:05pm » |
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Good post, Jackie. I feel like you do about the phone calls. We just must make them aware of how many people suffer this agony. They'll never have any idea if we don't show them.
Even if you don't think you will ever get a chance to go, please at least make the call and let them know we exist in great numbers. Who knows, something might happen that will get you there. Be ready for the unexpected. Maybe there will be a trial near you.
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snyder
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Re: Zomig Nasal Clinical Study
« Reply #20 on: Mar 17th, 2004, 6:17pm » |
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I saw my neuro this afternoon. I told her about this trial. She looked at me puzzled and then said she thought the trial was to determine WHO the oral Zomig works best for. When I told her that I was interested she gave me seven samples of the oral dose. Doctors already have it. 5mg, too. I am going to try it first for my next ramp that O2 can't catch.
Check with your doctors!
Bill
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Donna
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Re: Zomig Nasal Clinical Study
« Reply #21 on: Mar 17th, 2004, 6:36pm » |
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Please.........take the time to read the letter on the OUCH Business Board. Your doc wouldn't know about this yet.
Nasal sprays always work a LOT faster than pills. This is something new and is currently being studied. The way I read it, the spray isn't on the market yet.
Don't make the mistake of taking this lightly. It is vital to our condition.....it is NOW....it is needs your response.
We've complained for years about not being understood. If we lose this chance, it's our own fault.
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snyder
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Re: Zomig Nasal Clinical Study
« Reply #22 on: Mar 17th, 2004, 6:44pm » |
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Taka this lightly? How could I after nearly fourty-five years of this damn pain and this current cycle that has lasted 17 weeks. Because I am a newbie?
I have the box containing the med in my hand. Zomig Nasal Spray. Made by AstraZeneca just like the pills. My neuro says it has been on the market just two weeks.
Why would I fool around with this? What possible motive could you suspect of me?
Bill
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snyder
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Re: Zomig Nasal Clinical Study
« Reply #23 on: Mar 17th, 2004, 6:55pm » |
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I have tried and tried, but I find it very difficult to navigate around OUCH. I cannot find anything about Zomig there. I know it has to be there somewhere but I can't figure out where.
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t_h_b
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Re: Zomig Nasal Clinical Study
« Reply #24 on: Mar 17th, 2004, 6:58pm » |
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on Mar 17th, 2004, 6:55pm, wsnyder wrote:| I have tried and tried, but I find it very difficult to navigate around OUCH. I cannot find anything about Zomig there. I know it has to be there somewhere but I can't figure out where. |
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Bill, there's a link in the first message in this thread...
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No, it's not a headache--it's a Stage Ten Primary Chronic Periodic Idiopathic Trigeminovascular Cephalalgic Crisis.
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