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cluster_help_in_ca
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help me please
« on: Dec 7th, 2006, 1:49am » |
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i have had clusters since i was very young and in all of these years i cant ever finda a dr that really know how to deal with them. i just came off of the worst cluster i have ever had last week. I went to the er 7 times for help. going there is like hitting your head up against a wall. they all say they know what they are but they cant understand the kind of pain i am in. i cant even get them to give h2o 100 percent they tell me know you just need the little nose things. then they think you are some kind of drug addict. i used over 20 shots 20 nasals had opiod patches and opiod suckers. at the end i became so sick with withdrawls. i cant live through this any more. i know it will be another year but my life just stops when i get them. does anyone know where i can find a dr. that really know about clusters. i have been to 3 different nuerologist and i still get know help. any info you can give me would be appreciated. iam willing even to do experimental studdies
:'(
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RichardN
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Re: help me please
« Reply #1 on: Dec 7th, 2006, 2:25am » |
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"I just came off of the worst cluster I have ever had last week"
???
Do you mean one long continuous attack for days? . . . or are you referring to the hardest series of attacks you've had?
Do take the cluster quiz (4th link down on the left) and let us know how you do.
Read the " oxygen info" link on left. There is also info you can print available to take to your doc that shows hi-flo 02 to be a viable abortive. I can kill the beast in minutes if used early-on in the attack.
You've got much reading to do . . . but if you have CH, you've come to the right place . . . and if it's something else, there is a wealth of ha info here and many caring folk helping each other.
Be Safe, PFDANs
Richard
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I can live with the beast as long as I don't have to "dance" with the bastard.
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chopmyheadoff
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Its only a headache, deal with it - SMACK
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Re: help me please
« Reply #2 on: Dec 7th, 2006, 2:42am » |
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hiya mate - sorry to hear your having it hard at the mo.
keep your chin up and dont let the bastards get you down. i know its hard.
can i ask - has any of your 3 neuros tried you on any preventatives ?? you say youve blasted 20 injections and 20 sprays . . so these are working for you . . yes ???
give us a bit more info and a bit of background to help us to help you.
welcome to clusterville 
chops
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BB
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Re: help me please
« Reply #3 on: Dec 7th, 2006, 2:45am » |
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Hi and welcome,
Which area do you live in ? Someone maybe able to recommend a good headache neurologist nearby.
Do you have a good GP whowould listen to you and work with you to trial different meds?
Best of luck and painfree wishes.
Annette
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Bob_Johnson
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Re: help me please
« Reply #4 on: Dec 7th, 2006, 8:04am » |
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1. Search the OUCH site (button on left) for a list of recommended M.D.s.
2. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.
3. Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.
4. http://www.achenet.org/physicians/ On-line screen to find a physician.
5. http://www.headaches.org/consumer/index.html Call 1-800-643-5552; they will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder" which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.
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Bob Johnson
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Mattrf
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Re: help me please
« Reply #5 on: Dec 7th, 2006, 4:22pm » |
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Are you in Northern CA or southern?
I am up north by SF, I also asked and went to the OUCH site and found my doctor from the list and he has been great, even though I am seeing a pain management doctor now my other doctor still calls me whenever he reads something that might help me and faxes it to the pain doctor as well. It is hard to find a good one, and the last thing any of us need is a doctor that treats us like where nuts or are not in near the pain we tell them.
Good luck, sure hope you find a good doctor soon.
Matt
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There is no stronger a person then one who can deal with brain pain and still function.
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Guiseppi
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Re: help me please
« Reply #6 on: Dec 7th, 2006, 5:14pm » |
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And if you're in Southern California check out the meet and greet set for this January. Sit around with 15 to 20 of us and learn more then you ever thought possible!
Guiseppi
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Linda_Howell
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Hearing is one thing. Listening is another.
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Re: help me please
« Reply #7 on: Dec 7th, 2006, 5:29pm » |
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No, He's in Tracy.
I know where that is...Hon PM me. I'll try to help. I'm in Redding but we have several people who live in, and about your area.
Linda
P.S www.calouch.org for us Californians.
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Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
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slhaas
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Re: help me please
« Reply #9 on: Dec 9th, 2006, 3:43pm » |
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Check the links & references posted already in this thread. It really is a daunting task because not only do you want to find a doctor that knows about them, but you want one that is willing to learn more about them, willing to try different things if their predetermined "best strategy" for attacking your CH problem doesn't work, has an open mind, is sympathetic to the problem, and is just an all around good doctor as you'd like with any other doctor that you would choose to see. I checked some doctors and got nothing, and then decided to see a specialist or four about it. I then became seriously ill at work and was told to leave and see a doctor. I hadn't picked a doctor with my then new insurance yet (it is hard to get me to go to the doctor... at least until I met this doc and we worked on CHs), so I went online and found one close to work. Since I hate going to the doctor, and almost never do, I figured I'd talk to her about everything bothering me and try to handle it all in one trip. CHs came up and she had heard a tiny bit about them, but not much. She was VERY open to learning more and studied both literature I provided her, but then went out and found a ton of information to research on her own. She was receptive to suggestions and treatments. She fought with my insurance company to get more imitrex and oxygen that they didn't want to supply. She told me the oxygen would be a fight, and then to my surprise a truck with 5 tanks rolled up to my house that very night. She wasn't the most knowledgeable about CHs, but her willingness to learn and work with me made her a great choice. Unfortunately, I no longer have health insurance, so I can't see her during this current cycle, or get my RXs filled... and I can only hope my next insurance plan has her in their network.
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alienspacebabe
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Re: help me please
« Reply #10 on: Dec 9th, 2006, 3:47pm » |
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Keep your chin up! Now is a great time to find a doctor - you can put your energy into that instead of being saddled with hits. You have a whole year to research medication options, find a good doctor, etc. Good luck!
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wichita_pounder
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Re: help me please
« Reply #11 on: Dec 11th, 2006, 9:16pm » |
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This post is to slhaas, my husband has had clusters for years, he had gone without an episode for about 6-7 years we thought they were gone but came back recently; we are in the same boat with health insurance because we are both now independent contractors. Today on this website somebody provided the info for Glaxo's bridgestoaccess program to get Imitrex with a small copay, we took the info to our Dr's office today and are getting hooked up with some help with Imitrex also you might try the Canada Drugs, we can get generic imitrex 100mg tabs 12 for 150.00 and the injectables 4 for 165.00 still terribly expensive but compared to the states much better. They also have generic topamax which is much cheaper. Thank you to all who share information. If you need more info on Canada drug let me know
wichita pounder
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Mattrf
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Re: help me please
« Reply #12 on: Dec 12th, 2006, 10:38am » |
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on Dec 11th, 2006, 9:16pm, wichita_pounder wrote:This post is to slhaas, my husband has had clusters for years, he had gone without an episode for about 6-7 years we thought they were gone but came back recently; we are in the same boat with health insurance because we are both now independent contractors. Today on this website somebody provided the info for Glaxo's bridgestoaccess program to get Imitrex with a small copay, we took the info to our Dr's office today and are getting hooked up with some help with Imitrex also you might try the Canada Drugs, we can get generic imitrex 100mg tabs 12 for 150.00 and the injectables 4 for 165.00 still terribly expensive but compared to the states much better. They also have generic topamax which is much cheaper. Thank you to all who share information. If you need more info on Canada drug let me know
wichita pounder |
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Also don't forget the Imitrex tip on the left to get three treatments out of a single syringe, a lot of people have stated that a third of an injection is enough to abort so at the cost getting three for one can make it much more affordable.
Matt
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There is no stronger a person then one who can deal with brain pain and still function.
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slhaas
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Re: help me please
« Reply #13 on: Dec 12th, 2006, 4:43pm » |
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on Dec 11th, 2006, 9:16pm, wichita_pounder wrote:This post is to slhaas, my husband has had clusters for years, he had gone without an episode for about 6-7 years we thought they were gone but came back recently; we are in the same boat with health insurance because we are both now independent contractors. Today on this website somebody provided the info for Glaxo's bridgestoaccess program to get Imitrex with a small copay, we took the info to our Dr's office today and are getting hooked up with some help with Imitrex also you might try the Canada Drugs, we can get generic imitrex 100mg tabs 12 for 150.00 and the injectables 4 for 165.00 still terribly expensive but compared to the states much better. They also have generic topamax which is much cheaper. Thank you to all who share information. If you need more info on Canada drug let me know
wichita pounder |
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I've been working on the GSK program too because I can't afford even the Canadian drugs. I have to get my doctor to be a sponsor for it, and get her to do that for free, but it looks like she is going to work with me on it. The only problem with it is the time, and it probably won't be of much use to me this cycle, but maybe at the end. It will be good to have set-up for the next time around, though. I've also found some similar programs for verapamil, so my next cycle should be covered either way... I just have to find a way to make it through this one first.
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wam
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A mercyful fate is all I ask......
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Re: help me please
« Reply #14 on: Dec 13th, 2006, 11:33pm » |
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You came to the right place.Lots of info here.Your not alone.
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