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Topic: New to site, not new to clusters (Read 278 times) |
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alive
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Hi, I'm Duane. I have had clusters for about 20 years. My cycle was every two years lasting about five weeks. My last cylce changed to three years, and it will be three years again next month. So, I'm wondering if they will stick to the new cycle or lengthen again. I was wanting to find out if there have been any new meds or treatments come out in the last couple of years that I need to know about. I've made an appointment with the Headache Center at BJ Hospital in St. Louis, but I couldn't get an appointment before Dec 18th. I'm sure glad this site is available. It does make it easier when you know there are people out there that know what you are going through. 
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echo
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Re: New to site, not new to clusters
« Reply #1 on: Sep 13th, 2002, 4:00pm » |
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Welcome aboard Alive. Glad you found us. At least here people truly do understand the pain you face when dancing with the beast.
Hope you stick around and join in on the threads. The more the merryer.
Use the infor to the left to prepare for your upcoming appointment. I'm sure it will help.
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"If you love something, let it go. If it doesn't come back, hunt it down and kill it".
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oringkid
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Re: New to site, not new to clusters
« Reply #2 on: Sep 13th, 2002, 4:00pm » |
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Welcome Duane, check out the links to the left. There is more info here than your doc probably has.
Check the medications section!
Sherry
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Drk^Angel
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Re: New to site, not new to clusters
« Reply #3 on: Sep 13th, 2002, 4:01pm » |
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Welcome to the board! Sorry that the beast driven his steel posts into your cranium, and finds great joy in connecting those post to a shorted out transformer at the local power station, making your eyes pop out, and frying your head crispy. Best advice is to read as much information as you can on this site, and on the OUCH site, and read the board and archive. Lots of good info available. Welcome to the family!
PFDAN............................. Drk^Angel
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domm
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Re: New to site, not new to clusters
« Reply #4 on: Sep 13th, 2002, 4:06pm » |
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alive - glad you found us, but sorry you felt compelled to seek us out. Click on the medical info button on the upper left. Some outstanding info there, read through the posts on the Medications board and don't forget to go to the OUCH site, more outstanding info.
I'm like you. First cycle six years ago, the three yrs off, another cycle (longer), then three yrs off, now this cycle. Started using Verapamil as a preventative (its cut the number and intensity significantly) and O2 and Imitrex as abortives. Lots of other meds, tho.
I'd encourage you to print out a bunch of stuff and go to your GP. Educate him and get the meds you need to survive, until you can get to a neuro.
Good luck
domm
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alive
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Re: New to site, not new to clusters
« Reply #5 on: Sep 13th, 2002, 4:27pm » |
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Thanks for the info. Have you had trouble with insurance paying for you meds? I was using Imitrex with the last cycle, but my HMO would not pay for a refill as often as I needed it. Luckily my GP had enough samples to get me through.
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Charlie
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Re: New to site, not new to clusters
« Reply #6 on: Sep 13th, 2002, 4:39pm » |
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Welcome Alive: (sounds like a title)
Glad you found us and all the information here. Oringkid is right. There is probably much more information here than in your doctor's office. I know that I learn stuff every day.
I can't speak about drugs as I haven't used the newer ones. I do think that we shouldn't plan on our next cycle if possible. It's not easy, I know.
Anyway, your introductory post was terrific. Would that they all be so direct and friendly.
Stick around and welcome to the club
Charlie
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2late
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Re: New to site, not new to clusters
« Reply #7 on: Sep 13th, 2002, 7:32pm » |
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welcome to the board alive! research this site, take notes then have a little talk with your doc. you'll have more info than he does!! ;D ............2late
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Jim R
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Re: New to site, not new to clusters
« Reply #8 on: Sep 13th, 2002, 11:50pm » |
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Welcome alive. Think you'll find good information, support and friends here. Pain free days and nights to you. - Jim R
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pjeje
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Re: New to site, not new to clusters
« Reply #9 on: Sep 14th, 2002, 7:58am » |
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Hi Duane,
Just wanted to welcome you to this warm home. You found the right place..I am very new to all of this, but thankful for its existance!!
When you have time, read..read...read...and just when you thought you couldnt read anymore, a new idea or solutiion pops up
What works for one just may be your salvation!!
Welcome again
Smiles,
Pat
Quote:| Like dreams, they have the power to change consciousness, turning sadness to laughter and anxious introspection to the relaxed contemplation of some other time and place...Victor Null |
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| « Last Edit: Sep 14th, 2002, 8:23am by pjeje » |
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ChristineL
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Re: New to site, not new to clusters
« Reply #10 on: Sep 14th, 2002, 8:10am » |
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Hi Duane,
Welcome......................I just came out of a 12 year remission. I started taking Prednisone to break the cycle. It did lessen the attacks and severity but did not break it so I am now on Verapamil which seems to be working. Lots of others on this site seem to do well on it. When I have a CH I take O2 which, if a mild one usually will get rid of it. If it is a bad one I take the Imitrex injection and O2 and the CH is gone within 10 minutes. If you try the imitrex injections, try the imitrex tip on the left. Some of us don't need the full 6 mg and I break the dosage down to 2 ml's in seperate syringes. Helps a lot as Imitrex is very expensive and the insurance companies limit your script unless you get your doctor to write a letter to extend it.
Hope this helps.
Chris L
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Jabeen
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Re: New to site, not new to clusters
« Reply #11 on: Sep 14th, 2002, 8:55am » |
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Hi! Jusy another newbie that read your post and wanted to say "hi". I'm only in my 2nd cylcle-but my first one was at 45 and then there was 5 year remission. Doesn't seem to follow a pattern at all. I was lucky and found a preventative that has worked well for me. There is lots of info here that I couldn't find 5 years ago-
jabeen
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