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Title: Zomig Nasal Study updated Apr 20th Post by catlind on Mar 16th, 2004, 11:23am 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:
http://www.clusterheadaches.org/members/cgi-bin/yabb/YaBB.cgi?board=news;action=display;num=1079438924 Quote:
Cat |
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Title: Re: Zomig Nasal Clinical Study Post by Bob P on Mar 16th, 2004, 1:16pm 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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Title: Re: Zomig Nasal Clinical Study Post by catlind on Mar 16th, 2004, 2:54pm 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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Title: Re: Zomig Nasal Clinical Study Post by Linda_Howell on Mar 16th, 2004, 4:06pm 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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Title: Re: Zomig Nasal Clinical Study Post by BarbaraD on Mar 16th, 2004, 4:14pm 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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Title: Re: Zomig Nasal Clinical Study Post by Mr.Happy on Mar 16th, 2004, 7:15pm on 03/16/04 at 13:16:42, Bob P wrote:
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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Title: Re: Zomig Nasal Clinical Study Post by Kevin_M on Mar 16th, 2004, 8:00pm 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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Title: Re: Zomig Nasal Clinical Study Post by Donna H. on Mar 16th, 2004, 9:48pm 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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Title: Re: Zomig Nasal Clinical Study Post by BlueMeanie on Mar 16th, 2004, 11:52pm 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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Title: Re: Zomig Nasal Clinical Study Post by Linda_Howell on Mar 17th, 2004, 12:17am 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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Title: Re: Zomig Nasal Clinical Study Post by Mastifflvr28 on Mar 17th, 2004, 1:37am 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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Title: Re: Zomig Nasal Clinical Study Post by Melissa on Mar 17th, 2004, 7:35am 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 :-X |
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Title: Re: Zomig Nasal Clinical Study Post by catlind on Mar 17th, 2004, 9:22am 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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Title: Re: Zomig Nasal Clinical Study Post by Roxy on Mar 17th, 2004, 11:05am 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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Title: Re: Zomig Nasal Clinical Study Post by Elaine on Mar 17th, 2004, 12:29pm 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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Title: Re: Zomig Nasal Clinical Study Post by Elaine on Mar 17th, 2004, 1:00pm 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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Title: Re: Zomig Nasal Clinical Study Post by thomas on Mar 17th, 2004, 1:08pm I made the call ;;D |
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Title: Re: Zomig Nasal Clinical Study Post by cbolony on Mar 17th, 2004, 2:23pm 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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Title: Re: Zomig Nasal Clinical Study Post by Jackie on Mar 17th, 2004, 3:49pm 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 8) |
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Title: Re: Zomig Nasal Clinical Study Post by Donna H. on Mar 17th, 2004, 4:05pm 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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Title: Re: Zomig Nasal Clinical Study Post by wsnyder on Mar 17th, 2004, 6:17pm 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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Title: Re: Zomig Nasal Clinical Study Post by Donna H. on Mar 17th, 2004, 6:36pm 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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Title: Re: Zomig Nasal Clinical Study Post by wsnyder on Mar 17th, 2004, 6:44pm 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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Title: Re: Zomig Nasal Clinical Study Post by wsnyder on Mar 17th, 2004, 6:55pm 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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Title: Re: Zomig Nasal Clinical Study Post by t_h_b on Mar 17th, 2004, 6:58pm on 03/17/04 at 18:55:13, wsnyder wrote:
Bill, there's a link in the first message in this thread... |
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Title: Re: Zomig Nasal Clinical Study Post by Donna H. on Mar 17th, 2004, 6:58pm Wow Bill.......I certainly wasn't trying to get you upset. :-/ I want very much to help, not hinder your relief. Please accept my apologies if you think I meant you any harm. If you've found something to help you, I couldn't be happier for you. Zomig has been around and advertised for migraines, yes. Nothing has ever been done exclusively for clusters. Maybe this will change it. We've all tried to think of ways to get noticed. I'm only trying to get people involved......and this is as serious as anything else has ever been. |
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Title: Re: Zomig Nasal Clinical Study Post by wsnyder on Mar 17th, 2004, 7:08pm And I have been taking Zomig sub-lingual for years. I am familiar with the drug. |
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Title: Re: Zomig Nasal Clinical Study Post by Lizzie2 on Mar 17th, 2004, 7:09pm I'm sorry I've been in space zone land and missed this thread until I got an email in my box about it!! As it turns out, I used to work in research at Jefferson Headache Center, and I know everyone there...particularly in research. I was thinking, maybe I could email my former supervisor there and find out everything I need to know about that location? I don't know if I'll qualify because I don't just have CH, but I would LOVE to find out more about this!! What do you think about me emailing her? Lizzie :) |
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Title: Re: Zomig Nasal Clinical Study Post by Melissa on Mar 17th, 2004, 7:16pm Bill, out of curiosity, how fast does the zomig work for you? This new study is for the nasal spray zomig that enters the blood stream within 2 minutes of taking it and is geared toward clusterheads specifically. This study will also help to get clusterheadache treatment trials documented. :)mel |
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Title: Re: Zomig Nasal Clinical Study Post by Lizzie2 on Mar 17th, 2004, 7:19pm Also one thing I learned at one of my recent doctor's appointments. He asked me if using migranal had helped me, and I said not really. He said that many people don't get results with migranal because they snort it. Migranal can only be absorbed from the nasal lining or by DHE IM injection/intravenous. The triptans, however...in nasal spray, they can also be absorbed through the stomach lining. I think this would cause for less problems due to not using it correctly since it will have a MUCH better chance of getting absorbed. |
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Title: Re: Zomig Nasal Clinical Study Post by wsnyder on Mar 17th, 2004, 7:40pm Mel, I have had good luck with Zomig. Rarely does it take much longer than 7 to 15 minutes, usualy 8 or 9. There are time when I have a extremely rapid ramp-up attack and the Zomig doesn't work, but then, for these attacks the O2 doesn't work either; these attacks are rare, usually only half a dozen or so in a cycle. and are the worst. They are probably what was meant in the old days as the suicide headache. What I like as well about Zomig rather than Imitrex is that Imitrex left me feeling like I had been hit by a small truck for awhile after the attack. Zomig leaves me without any "after taste." Bill |
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Title: Re: Zomig Nasal Clinical Study Post by t_h_b on Mar 17th, 2004, 7:42pm Bill, have you used the Zomig nasal spray yet? How does it work? How fast is it? I don't like the way Imitrex makes me feel, either, but I am damned glad to have it. |
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Title: Re: Zomig Nasal Clinical Study Post by Roxy on Mar 17th, 2004, 9:17pm Quote:
Zomig is only approved for use with migraines. This study is for approval to treat clusterheadaches with the nasal spray. Yes, doctors have access to the drug. But, as of the present, the only triptan approved for use with clusters is Imitrex. Doctors can prescribe zomig, but some insurance companies won't pay, because the drug is not listed for clusters. The more drugs which are indicated and approved for clusters, the better we all will be. The point being, the drug is relatively new, but that is not what the study is about. It is about getting it specifically approved for ch's. Please call and sign up for the study!! |
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Title: Re: Zomig Nasal Clinical Study Post by catlind on Mar 17th, 2004, 10:07pm Bill, and everyone else: PLEASE TAKE NOTE this trial is for the drug Zomig Nasal, and yes it's on the market and is fully approved for use in Migraines like Tracey said. Zomig Nasal is NOT currently labelled by the FDA as an approved medication for cluster headaches. Currently the only triptan labeled for CH use is Imitrex, made by Glaxo. In order for Zomig to get FDA labelling for cluster headaches they have to perform a clinical study for the effectiveness of it in the use on clusters. If you have already used Zomig Nasal for your clusters you will not be allowed to participate in the trial (that's my understanding) so if you want to participate and help get this med labelled for CH use specifically, then do not ask your neuro or doc for it before calling the center and finding out if you qualify to participate. This study is specifically to find out the effectiveness of Zomig Nasal in the use for cluster headaches. Whether they know how effective it is or not, they have to have the study to back it up in order to get the FDA to label it for use specifically on clusters. If you want to see further studies done on other medications, or on new medications, now is the time to make that call. If the NECH and other centers get a good response this will help to pave the way for future studies - it will let them know that OUCH can produce the bodies they need. Cat |
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Title: Re: Zomig Nasal Clinical Study Post by Kevin_M on Mar 17th, 2004, 11:09pm on 03/17/04 at 22:07:28, catlind wrote:
More understandable now. Makes sense. I am surprised and disappointed U of MI is not listed. Perhaps if more from my area call, they may participate too. I'll call Friday, my next day off. Let them know there is demand in this area for this approval to happen. As for technique for nasal spray, I have been using imitrex for seven years, heavily. It was on this board where someone posted the proper technique which I cannot word as well as they did but have kept in mind the way of doing it and reasons for it. It made sense and works faster and better. Lizzie is right about not snorting so it can be absorbed better by the nasal lining. Snorting bypasses the nasal lining too quickly and it drips down into the stomach to be absorbed and will be a much slower response. Someone here knows that and explained it years ago and it has helped me greatly. Glad Lizzie you shared that with others. I know that and it is so routine I forgot it is good to mention. That advise has been helpful to me and Lizzie brought up a good point. Kevin M |
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Title: Re: Zomig Nasal Clinical Study Post by wsnyder on Mar 18th, 2004, 12:08am Now I understand the importance of the study. I did not know that some insurance companies were not paying for cluster meds. Mine has always paid for what I have needed. I don't want to mess with the program here. To all .... I am sorry I upset the apple cart here. Please help get this drug approved. Sign up if you can. Over and out. Wsnyder |
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Title: Re: Zomig Nasal Clinical Study Post by wsnyder on Mar 18th, 2004, 12:12am To t_h_b, I have not used it yet. Bill |
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Title: Re: Zomig Nasal Clinical Study Post by BlueMeanie on Mar 18th, 2004, 12:29am on 03/18/04 at 00:08:37, wsnyder wrote:
That's new to me also. I've never heard of insurance companies NOT paying for medicine because it's for a cluster headache. I do agree that they do not allow for the amount we need. They don't give enough though. I believe it's only because of the cost of the amount of meds we need to handle all those clusters we get, not because they are not labeled for clusters. Just my guess though. |
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Title: Re: Zomig Nasal Clinical Study Post by t_h_b on Mar 18th, 2004, 12:30am Bill, let us know how it works for you when you do use it. I would love to have something with fewer side effects than the Imitrex. And I don't think you've upset any apple carts. I am beginning to realize that a lot of us are grumpy or sensitive or angry or whatever because of the stress of this disease. I really felt crappy when I was getting hit a couple or three times a day. |
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Title: Re: Zomig Nasal Clinical Study Post by Lizzie2 on Mar 18th, 2004, 12:35am on 03/18/04 at 00:29:56, BlueMeanie wrote:
Blue, It is new to me too. It must be some bad insurance co's that do that! There are so many drugs used for off-label uses, you'd think they'd approve any one of them because it is up to the doc which one they think would work best...not the insurance co. But then again, insurance co's try to play doctor all the time. For migraine, there are actually only 4 FDA approved preventives....and yet there are probably 100 different meds used. If the insurance co's blocked the use of all of them...lotta people would get screwed over! Lizzie P.S. Sorry for mentioning the M word...it was all I could compare the FDA approved stuff for.... |
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Title: Re: Zomig Nasal Clinical Study Post by t_h_b on Mar 18th, 2004, 12:38am on 03/18/04 at 00:29:56, BlueMeanie wrote:
Insurance companies can refuse to pay for unproven or off-label use. Once a drug's been approved for one use MDs can prescribe it for whatever they want but the insurance companies don't have to pay for it. For example, the drug companies don't see as big of a need to test an anticoagulant for knee surgery when they've already tested it on hip surgery. They don't have as much to gain from it. So technically it's only been approved for hip surgery and the insurance company might decide not to approve it for knee surgery. As a practical matter most insurance companies don't have a good grip on ancillary services like pharmacy so you don't see a lot of that. They can also make any drug non-formulary just as a cost measure. The big issue is probably getting sufficient quantities approved. Once a drug's been approved for migraine it's approved for CH because CH is classified as a type of migraine. |
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Title: Re: Zomig Nasal Clinical Study Post by wsnyder on Mar 18th, 2004, 12:42am t_h_b I am finding it very hard to stay with this place. Never before have I found anyone that truly knows what i live and have lived and I have learned a great deal here. But it is hard to deal with some of the sensitivities ... and I have those myself, and that is part of it. I have to simply be more careful and hope for the best. Thanks for your support. Bill |
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Title: Re: Zomig Nasal Clinical Study Post by t_h_b on Mar 18th, 2004, 12:47am Bill, I try to be cognizant of others' sensitivities around here. I've been ganged up on and asked to delete posts that were deemed inappropriate myself. But honestly I don't see that you've done anything inappropriate either time you've been ragged on. More like you were just in the wrong place at the wrong time and stepped in sh*t someone else left on the sidewalk. SOMEBODY who will remain nameless but who pops up every now and again even accused me of being a drugstore.com employee when I first started posting regularly but they were nice enough to do it in a private message! That was a close call.... Thomas |
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Title: Re: Zomig Nasal Clinical Study Post by catlind on Mar 18th, 2004, 1:34am on 03/18/04 at 00:38:08, t_h_b wrote:
Thomas, that line is incorrect. IHS criteria classifies cluster headaches as it's own primary headache condition and NOT as a type of migraine. It falls under classification 3 - Cluster Headache and Chronic Paroxysmal Hemacrania and Migraine is classification 1 - Migraine. They are not the same disorder, and are not classified the same. That is one of the reasons that getting studies to be carried out specifically for clusters is so important. Cat |
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Title: Re: Zomig Nasal Clinical Study Post by t_h_b on Mar 18th, 2004, 6:36am on 03/18/04 at 01:34:35, catlind wrote:
The ICD system (the one used by US insurance companies and Medicare and Medicaid) classifies Cluster Headache under Migraines as a "Migraine Variant". That's the relevant classification system when dealing with insurance companies to get medication. I am well aware that they are very different disorders. I are one. |
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Title: Re: Zomig Nasal Clinical Study Post by thomas on Mar 18th, 2004, 9:08am on 03/17/04 at 22:07:28, catlind wrote:
I'm baffeled......... My neuro has prescribed, axert, amerge, zomig, and imitrex in the years that I have been seeing him. Are you saying that he has been giving me unapproved meds? Well I'm so glad that my doctor is willing to do something wrong, because zomig has been a life saver for me. And no, I do not suffer from any other type of headache, I see him only for clusterheadaches. |
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Title: Re: Zomig Nasal Clinical Study (updated) Post by catlind on Mar 18th, 2004, 9:23am Thomas, No it's not that your doctor has been prescribing unapproved medications. The FDA regulates the labeling of drugs. And in order for a drug to be labeled for use in something, like cluster headaches, it has to go through the clinical trials and prove itself effective. There are many many drugs, I would venture to say that most all drugs, are prescribed for off label uses. There is nothing wrong with it per se, as long as the pharmaceutical company making it doesn't promote the drug to be sold for an off label use. The FDA labelling will allow them to promote Zomig Nasal for cluster headaches. Advertise it etc. That can be a huge bonus for all of us - it adds competition to the triptan market for CH dollars and will prompt other pharm co's to do the same. I hope I was able to clear that up for you :-/ Cat |
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Title: Re: Zomig Nasal Clinical Study (updated) Post by thomas on Mar 18th, 2004, 9:27am on 03/18/04 at 09:23:59, catlind wrote:
Yes you did, quite effectively. Thank you. I was a little confused there. |
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Title: Re: Zomig Nasal Clinical Study (updated) Post by BlueMeanie on Mar 18th, 2004, 1:01pm on 03/18/04 at 09:23:59, catlind wrote:
Thanks again CAT. I think the post is cleared up a little better on the actual benefit from having the trail. Not only will it be a great test to insure that the Zomig Spray works on clusters effectively, but it may eventually reduce costs for all of us. |
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Title: Re: Zomig Nasal Clinical Study (updated) Post by Reese on Mar 18th, 2004, 1:21pm Count me in. I live in CT and have flexibility in job to participate in this study.Im episodic,but,they still hurt :'( Just leaving/left a cycle but it will return as always.Glad I can help and hopefully get some releif as a bonus. |
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Title: Re: Zomig Nasal Clinical Study Post by Tiannia on Mar 18th, 2004, 3:07pm on 03/18/04 at 00:08:37, wsnyder wrote:
My insurance does not recognise any medications for CLuster Headaches. Clusters are not even mentioned at all anywhere as a diagnosis even. Which is one of the big hurdles I face in trying to get treated correctly. My chart says I have chronic Headaches which is why they have allowed me to get to a pian speicalist, but I still cant get a frigging referal to a Neuro. The one doc that I had on my old insuracne is the one who diagnosed me with Cluster back in Sept after working with me for almost 3 months. then my insurance chaged and I could not see her anymore. Tia |
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Title: Re: Zomig Nasal Clinical Study (updated) Post by Lizzie2 on Mar 18th, 2004, 4:14pm I emailed my former research supervisor at Jefferson. Here was the response I got: Quote:
I think when she says chronic she is referring to somebody with no pain free time like with chronic migraine, NDPH, and some of the others. I asked her to still forward my name along though because I've only been getting clusters since November, and I don't know if I am chronic or episodic just yet. I still probably won't qualify though because I have multiple headache types. Guess I'll find out! I just emailed her again. Lizzie :) |
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Title: Re: Zomig Nasal Clinical Study Post by t_h_b on Mar 18th, 2004, 5:49pm on 03/18/04 at 15:07:19, Tiannia wrote:
Your insurance situation sucks. When you change insurance they should allow at least one visit to your former MD for "continuity of care". That's the key phrase to use. Your MD should make it clear to your insurance company that you have cluster headaches and give a brief description of the suspected pathophysiology and your history in a written request for authorization to see a neurologist or headache specialist. If they deny your request, get more information and follow their internal appeal process and then the external process with the state if necessary. |
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Title: Re: Zomig Nasal Clinical Study (updated) Post by eyes_afire on Mar 18th, 2004, 6:20pm Insurance companies can come up with all these excuses but the real issue is MONEY money money money money. I sure hope zomig nasal isn't as expensive as imitrex nasal because it would bankrupt me just as quickly. Anyhow, I called NECH about the study. Left a message since I can't call out during work hours... damn work. --- Steve |
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Title: Re: Zomig Nasal Clinical Study (updated) Post by t_h_b on Mar 18th, 2004, 6:24pm on 03/18/04 at 18:20:14, eyes_afire wrote:
All she wanted to know right now was your name and phone number. |
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Title: Re: Zomig Nasal Clinical Study (updated) Post by kim on Mar 18th, 2004, 6:50pm Thanx Catlaind. I plan on heading to Connecticut. One more clusterhead to the pile. Every single clusterhead here COUNTS! |
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Title: Re: Zomig Nasal Clinical Study (updated) Post by eyes_afire on Mar 18th, 2004, 7:05pm Quote:
Yup, and that's what I left on the machine. It would have been impossible to call during work hours, so I had to call after hours to leave a message. --- Steve |
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Title: Re: Zomig Nasal Clinical Study (updated) Post by HypnoticFreddy on Mar 18th, 2004, 9:20pm After my health insurance company did not provide enough Imitrex injections (2/month), I called them. I am now allowed like 6/month. Still sucks, but sucks less. There are procedures. There are ways to appeal. I suggest you call the insurance company and make a case. Have plenty of back-up research (literature) available. Most likely you need to have a document filled out by a doctor for explanation of the situation. If a doctor knows nothing about clusterheadaches, refer him to the literature and go to a different doctor. Good luck. My CH cycle started almost 4 weeks ago. I am finally seeing a Neuro on Tuesday. I know for myself it appears that Imitrex injections are my best abortive. The 20 mg nasal spray Imitrex also gives benefit if I catch the CH early enough. Good luck. I will inquire about Zomig nasal spray, but truly is there a difference between that and Imitrex. I mean they do belong to the same family of drugs (the Triptans). -Freddy |
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Title: Re: Zomig Nasal Clinical Study (updated) Post by Lizzie2 on Mar 18th, 2004, 9:41pm on 03/18/04 at 21:20:35, HypnoticFreddy wrote:
Hey Freddy, Actually all of the triptans are unique. Just because one doesn't work or you get a bad reaction to one, does not mean it will happen with the other 6. So, often people have to go through all 7 to find one that works for them. The zomig nasal would be great, especially for people who can't use imitrex or it doesn't work for them. Definately a great study! Lizzie :) |
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Title: Re: Zomig Nasal Clinical Study (updated) Post by HypnoticFreddy on Mar 18th, 2004, 11:20pm That's good to know that there are differences in the actions of the different Triptans. Good. I will discuss the situation to the neuro next week of me taking the as-needed nasal or injection (by the way I have done both within several hours many times), that is 20 mg nasal and 6 mg Imitrex injection. I am need of a preventative. It seems I responding well to the triptans in an abortive manner, hopefully I can go on an oral too. I have had so many meds prescribed as preventatives Never been on an oral triptan. See if I can work it out. Hey my original Neuro in CT has published in a peer-reviewed medical journal about CHs. Too bad she couldn't "fit me in" until May and thus referred me to another office. God I pray that the Neuro is knowledgeable in CHs. It is a sin if any Neurologist is not well-versed in CHs. And if the guy starts talking about migraines, I am going to punch him in the eye. Hard. Then maybe he'll get the picture. -Freddy |
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Title: Re: Zomig Nasal Clinical Study (updated) Post by Mr.Happy on Mar 19th, 2004, 12:44pm on 03/18/04 at 23:20:38, HypnoticFreddy wrote:
Man, there sure ARE differences. That's why this study has me jumping up and down like a kangaroo with his butt on fire. The fact that these triptans work for so many is undeniable. What's needed is the FDA APPROVAL for use with Cluster Headaches. Zomig should skate thru with no problem, which will give us a grand total of 2 (two) approved triptans. Until they can cure this crap, it'll be good to have every effective approved abortive listed on the FDA list. Listlessly. And that's why this study is so important, RJ |
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Title: Re: Zomig Nasal Clinical Study (updated) Post by HypnoticFreddy on Mar 21st, 2004, 6:52pm How come this post always appears at the top of the postings, even though it has not been modified for a few days? -Freddy |
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Title: Re: Zomig Nasal Clinical Study (updated) Post by catlind on Mar 21st, 2004, 7:42pm Freddy, We had DJ sticky it so that it wouldn't drop down and get lost. This way we can be sure that as many people will see it as possible :) Cat |
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Title: Re: Zomig Nasal Clinical Study (updated) Post by Woobie on Mar 21st, 2004, 7:52pm Mayo Clinic, Scottsdale, AZ (Dr. Dodick) Houston Headache Center, Houston, TX (Dr. Matthew) Jefferson Headache Center, Philadelphia, PA (Dr. Silberstein) We are nowhere near any of these places... too bad they arent doing one in Rochester at the Mayo Clinic there... But... Ramon called anyway. :-* |
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Title: Re: Zomig Nasal Clinical Study (updated) Post by Melissa on Mar 22nd, 2004, 7:18am Hello Liz4, Did you read the whole thread? If you did, then you'd understand why this study is so important. I will post below WHY it is important. mel Quote:
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Title: Re: Zomig Nasal Clinical Study (updated) Post by tnpruby on Mar 24th, 2004, 8:37am Hi everyone, its me Toni and I have tried the Zomig spray , as of yesterday I went to my neuro and he gave me a bunch of samples of it . I did post a topic for everyone but I wanted to here as well. Anyway the spray took the edge off instantly when I used it at 4:30 this morning. It doesnt have the most pleasurable taste and is a little runny but I do not care , it worked for me and I only hope and pray it helps many others. It is perfect for in the car and purse just have tissues for your nose WILL run. Good luck and I hope everybody tries it soon. The only thing I am experiencing is a sore throat which could be from a few things. Let me know if anyone else has tried it , bye for now, Toni 8) |
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Title: Re: Zomig Nasal Clinical Study (updated) Post by t_h_b on Mar 24th, 2004, 10:09pm on 03/24/04 at 08:37:25, tnpruby wrote:
No way am I going to spray something with side effects like that up my nose just to get rid of a headache. |
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Title: Re: Zomig Nasal Clinical Study (updated) Post by tnpruby on Mar 25th, 2004, 6:53am silly rabbit , You know I am only trying to help, and my nose practically ran out the frigin door..hehehehe ;;D |
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Title: Re: Zomig Nasal Clinical Study (updated) Post by Pegase on Mar 25th, 2004, 9:38am on 03/24/04 at 22:09:52, t_h_b wrote:
I think it is worth the cost... and a trash full of tissues;-) |
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Title: Re: Zomig Nasal Clinical Study (updated) Post by thomas on Mar 25th, 2004, 9:53am on 03/24/04 at 22:09:52, t_h_b wrote:
We differ again, my friend. ;;D |
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Title: Re: Zomig Nasal Clinical Study (updated) Post by t_h_b on Mar 25th, 2004, 5:58pm That was a joke! That was a joke! My nose runs like hell anyway. Besides, I'm a licocaine ointment snorter and that makes it run even more. :P |
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Title: Re: Zomig Nasal Clinical Study (updated) Post by thomas on Mar 25th, 2004, 6:37pm on 03/25/04 at 17:58:16, t_h_b wrote:
OMG that was funny then. [smiley=laugh.gif] |
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Title: Re: Zomig Nasal Clinical Study (updated) Post by TxBasslady on Mar 25th, 2004, 7:14pm Cat, I plan to call them on Monday. I am at the lakehouse....have a bass tourney Saturday. Got woke up at 4:30 this a.m........1st CH I've had since Sept. Sure am hoping it's not a new cycle starting for me. I sure miss talkin to ya! Will have to give you a call when I get back home. Love ya, sweetie Jean |
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Title: Re: Zomig Nasal Clinical Study (updated) Post by t_h_b on Mar 25th, 2004, 7:21pm on 03/25/04 at 18:37:22, thomas wrote:
Make up your damn mind, Thomas! You can't have it both ways. ;;D -Thomas |
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Title: Re: Zomig Nasal Clinical Study (updated) Post by Edna on Mar 29th, 2004, 6:31pm Thanks for the great work Cat. And everyone else who helped in any way. Making the call tomorrow. Although I may not be able to do diddly squat........at least I'm off my ass and trying.....sure in the hell hoping others do the same. EDNA |
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Title: Re: Zomig Nasal Clinical Study (updated) Post by BstnEagles on Apr 13th, 2004, 2:01am COuld someone send me an e-mail with concise info on this I am very interested. Also I am in Boston, does anyone know if there is a local area for this or if you would have to travel to Stamford? Thanks |
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Title: Re: Zomig Nasal Clinical Study (updated) Post by Linda_Howell on Apr 15th, 2004, 7:20pm Here ya are. Sorry I didn't see your request sooner Bstn. Quote:
LindaH |
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