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Topic: new to the site but not to the CH (Read 720 times) |
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loui555
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new to the site but not to the CH
« on: Apr 28th, 2008, 11:58am » |
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hi my name is loui i am 34. not very good at this so will try my best. i am in my 6th week of my ch had gone about 3-4 years without anything, think i was 19 when i started getting them thought they were gone for good how wrong was i not sure what medication i have tried, had steroids,lithium but found none to be useful tried the injections but thought i got more attacks when i used it i use the nasal spray at the mo which i find ok if i am awake i have just moved home so have just started seeing a new doctor just glad to find this site and that i am not alone hope to hear from you's
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DennisM1045
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Re: new to the site but not to the CH
« Reply #1 on: Apr 28th, 2008, 12:17pm » |
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Hi Loui! Welcome! Sorry your're here but glad you found us.
3-4 years break is great! But unfortunately the beast has a way of always remembering to make a visit.
What has your new Dr put you on?
You need to read everything here. Self-education is your best weapon. The more you know the more you can make sure your Dr is on a good path. Too many of them go their entire practice not seeing a single case of CH. We're rare and that makes getting proper treatment tough.
Start with the buttons on the left <== and then move on to the other area.
www.OUCH-US.org is another great place to educate yourself on how to best fight the beast.
Lastly, you didn't mention Oxygen. 100% O2 @ 15lpm flow rate using a non-rebreather mask is the best abortive I've ever used. Kills an attack in a few as 10 minutes. You can be back living your life before anyone knows you were gone.
For now, I know it's daunting but ask what questions you have and we'll do our best to get you on the right path...
-Dennis-
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Dancing the dance since 1995 ... Family member since 2007 ... No longer alone
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vietvet2tours
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Re: new to the site but not to the CH
« Reply #2 on: Apr 28th, 2008, 1:25pm » |
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on Apr 28th, 2008, 12:17pm, DennisM1045 wrote:Hi Loui! Welcome! Sorry your're here but glad you found us.
3-4 years break is great! But unfortunately the beast has a way of always remembering to make a visit.
What has your new Dr put you on?
You need to read everything here. Self-education is your best weapon. The more you know the more you can make sure your Dr is on a good path. Too many of them go their entire practice not seeing a single case of CH. We're rare and that makes getting proper treatment tough.
Start with the buttons on the left <== and then move on to the other area.
www.OUCH-US.org is another great place to educate yourself on how to best fight the beast.
Lastly, you didn't mention Oxygen. 100% O2 @ 15lpm flow rate using a non-rebreather mask is the best abortive I've ever used. Kills an attack in a few as 10 minutes. You can be back living your life before anyone knows you were gone.
For now, I know it's daunting but ask what questions you have and we'll do our best to get you on the right path...
-Dennis-
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Great post.
Potter
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Kill em all let God sort em out
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Bob_Johnson
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Re: new to the site but not to the CH
« Reply #3 on: Apr 28th, 2008, 1:54pm » |
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In case you do not have access to a doc with good headache experience/skill, print both of these articles and give to him.
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HERE ARE TWO MAJOR DOCUMENTS WITH RECOMMENDED TREATMENTS FOR CLUSTER HEADACHE, ONE FROM A U.S. PHYSICIAN, THE SECOND FROM EUROPE.
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http://www.plainboard.com/ch/chtherapy.pdf
Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S. (2002. Rozen)
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Treatment guidelines from Europe
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A. May, M. Leone, J. Áfra, M. Linde, P. S. Sándor, S. Evers, P. J. Goadsby:
EFNS guidelines on the treatment of cluster headache and other
trigeminalautonomic cephalalgias.
European Journal of Neurology. 2006; 13: 1066–1077.
Download free full text:
http://www.efns.org/files/guideline_49.pdf
(Thanks to "cluster" for link.)
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Bob Johnson
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loui555
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Re: new to the site but not to the CH
« Reply #4 on: Apr 28th, 2008, 1:56pm » |
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hi dennis thanks for the info, been reading a bit today my doc gave me the 10mg imigran nasal spray going to see him tomorrow i will mention o2. yeh 3-4 years was a good break.
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Guiseppi
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Re: new to the site but not to the CH
« Reply #5 on: Apr 28th, 2008, 1:59pm » |
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Boy Dennis did a great job of getting your started on your education. Welcome to the board. Sounds like you're episodic, as am I, meaning we get breaks between our cycles, sometimes years at a time. I'm 48, dealing with CH for 30 years. I found the best approach is a 2 pronged approach:
1: A solid preventative medication. This is something you take while you are on cycle to decrease the frequency and the intensity of your attacks. Some of the more common prevents are lithium, verapamil and topomax. Lithium at 1200 mg a day is my preventative and works to block about 80-90% of my attacks. It takes about 2 weeks to really get the lithium up and working in my system. I do a 2 week steroid taper during that time period to block the CH untill the lithium kicks in.
2: a good abortive strategy. Okay a head ache is starting, now what? Oxygen should be your first line abortive. I can abort an attack, that is be completely pain free, in less then 10 minutes, often as fast as 6 minutes, using only oxygen. Read the link on the left, the critical points are it must be started at the first sign of an attack, at a high flow rate, 15 LPM or better, through a NON RE BREATHER mask. That last part is critical. Re breather masks, nasal canulas, worthless for CH. There are many other abortives for you to read up on and discuss with your doctor.
For now try slamming an energy drink at the first sign of an attack. One containing caffeine and taurine. Many can abort or substantially reduce a hit his way.
Glad you found us, hope we can help you.
Guiseppi
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Why are all sensors, seeking intelligent life, pointed AWAY from earth?
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Superdave
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Re: new to the site but not to the CH
« Reply #6 on: Apr 28th, 2008, 3:51pm » |
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Hi Loui,
Welcome, looks like you have gotten the attention of the experts right of the bat. These guys really know what their talking about. They have helped me tremendously. I haven’t felt this good since before ch showed up in my life almost 6 years ago.
Take the time to read and ask all the questions you can think of, everyone is here to help each other 
Redbull and o2 are my only abortives at this time, Melatonin helps get me through the night.
Superdave
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Wow! you mean it's just in my head?
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RichardN
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Re: new to the site but not to the CH
« Reply #7 on: Apr 28th, 2008, 9:24pm » |
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Hi Loui and Welcome to Clusterville
When you see your doc tomorrow, don't just "mention" the 02. Don't leave his office without the script! I can't use triptans and 02 is my only abortive . . . works for 70% of us.
Copy the "plainboard" link Bob posted above and take it with you. If your doc is not CH savvy . . . you can help make him so. It's YOUR pain, and if you have to educate him/her about same to get viable meds (abortive & preventative), then you both will be better off . . . you for your pain, and him/her to help future patients.
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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