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Topic: Saying Hi (Read 465 times) |
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johfel
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Hi!
Im 34 yrs old, from Sweden. I have had CH since -97. Up till now i ve had a bout once per year, lasting about 2 weeks. Now, im in a bout with 3-4 seizures per day since the 3:rd of December. Verapamil doesnt seem to slow the attacks anymore, so i am trying out steroids for the second day now. I pray to god it will help (although i am not religious), i have shadows for the second time this day right now.
4 years ago i finally got Sumatriptan injections, they are really helping me out. Before that i was undiagnosed, i have tried most of the conventional painkillers available, getting frustated about doctors prescribing paracetamol and sleep. I guess you know the drill...
Ive quit smoking due to CH, and started to exercise on a regular basis to keep in shape and was hoping that the devil within would die.
This tuesday i was at the hospital and got O2 for the first time, it helped ok. (Neraly collapsed at the reception, just shaked, screamed and cried) I am getting a tube to my bedroom next week.
Otherwise i work as a manager at a government youth institution, i am married to a nurse and have three kids.
I like hunting, weightlifting and computers.
Life is not fun at the moment.
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Paul98
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Welcome johfel-
Sorry you had to come looking for info on CH but you probably could not find a better palce!
There is lots of good info here and many many people that share the pain of CH. Read all you can and digest the combined knowledge that is offered here. Don't be afraid to ask questions and grab an oar and join us.
-P.
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vietvet2tours
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Re: Saying Hi
« Reply #2 on: Jan 24th, 2008, 4:45pm » |
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Let's make life fun for you. You get that oxygen and chase that ch bastard away. 12/15 lpm along with a non rebreather mask is the trick.
Potter
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Kill em all let God sort em out
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Annette
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Re: Saying Hi
« Reply #3 on: Jan 24th, 2008, 4:50pm » |
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Hi and welcome
There are other preventives too not justr Verapamil. Its great that you are getting good result with oxygen and imitrex but you should be starting another preventive alongside the prednisone, or else once you taper the steroids off the hits may come back bad.
Have you seen a good neurologist who has experience in treating CH?
I am a supporter for my husband who has CH, he had to try a few different combos of preventives before he found one that worked well for him.
Good luck and painfree wishes.
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Mediocrity knows nothing higher than itself; but talent instantly recognizes genius.
Arthur Conan Doyle
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imfareware
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Hello Everyone!!
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Re: Saying Hi
« Reply #4 on: Jan 24th, 2008, 7:20pm » |
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Hello Johfel,
I feel bad for you, hang in there, I had my CH since '86. I'm just ending my cycle now (hopefully). Good luck with the steroids, I hope they help. Please keep a journal for the shadows that you have while on treatment, and after the treatment is over.
O2 has helped me alot. But every episode is a new chapter. Hang in there and let us know how your doing.
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Pain is temporary, Love is Permanent
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johfel
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Re: Saying Hi
« Reply #5 on: Jan 25th, 2008, 11:35am » |
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Thanks for the response, it feels good to know that i am not alone in the world with this. (Not saying i wouldnt be happier if you guys didnt suffer)
Had 3 seizures today so far. 3rd day on steroids, the only effect ive noticed to this point is lousy sleep. This stuff is like i imagine speed is. (Never tried any illegal drugs in my life)
Overdosing Imigran, i just dont care about it. Scared of the night though.
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Ghost
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Re: Saying Hi
« Reply #6 on: Jan 25th, 2008, 11:50am » |
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What ever you do slow down and think, use what helps and flush the tylenol. There is a wealth of knowledge here ready to be tapped. Use it and help when you can and life becomes more bearable.
Mike
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***WARNING*** Oxygen will rust your pipes!
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Bob_Johnson
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Re: Saying Hi
« Reply #7 on: Jan 25th, 2008, 11:55am » |
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If you print both of these documents and give them to your doctor it will give you some basis for discussing treatment options. The first one (Dr. Rozen) will be the best one for you personally to study. Rozen is one of the leading headache docs in the U.S..
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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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LeLimey
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Re: Saying Hi
« Reply #8 on: Jan 25th, 2008, 12:01pm » |
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Hej Johfel 
I can only echo what everyone else is saying about the benefit's of Oxygen - it's brilliant.
I see you're trying Pred - are you taking anything else simultaneously such as verap? If not when you stop the attacks will probably just come back. Have you considered trying a different preventative such as lithium instead of or as well as the verap?
We'll all help all we can
Helen
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sandie99
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Wish it, dream it, do it - inspite the pain!
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Re: Saying Hi
« Reply #9 on: Jan 25th, 2008, 12:18pm » |
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Welcome aboard, Johfel!
I'm so sorry that you're hurting. But this is the best place for us clusterheads.
Lots of Pain Free days your way,
Sanna
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CH happends, Live anyway! PF days to us all!
"Do what you can and let God take care of the rest. Leave your heart wide open and always wish for the best" (Sanna Hillu)
"No matter how far out your dreams are, it's possible" (Marketa Irglova)
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johfel
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I love YaBB 1G - SP1!
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Re: Saying Hi
« Reply #10 on: Jan 26th, 2008, 2:54pm » |
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Thnx alot guys!
0 seizures for 24 h now, havent been feeling this good in 9 weeks. I think the steriods are working.
Getting the O2 next week anyhow, taking a week off from work also.
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imfareware
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Hello Everyone!!
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Re: Saying Hi
« Reply #11 on: Jan 26th, 2008, 9:09pm » |
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Good New!! I hope there is a pain free day for ya everyday!!
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Pain is temporary, Love is Permanent
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Lebowski
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Re: Saying Hi
« Reply #12 on: Jan 27th, 2008, 3:18am » |
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Welcome to the board Johfel! These guys around here are a fountain of information on CH's. Feels good to find a place like this where others battle this beast.
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johfel
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I love YaBB 1G - SP1!
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Re: Saying Hi
« Reply #13 on: Jan 27th, 2008, 11:53am » |
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Nearly 48 h painfree now. Sunshine! 
Jus curious: How long do you stay painfree before you quit taking verapamil?
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Bob_Johnson
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Re: Saying Hi
« Reply #14 on: Jan 27th, 2008, 1:01pm » |
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There is no science about when to stop Verap and so I suggest staying on for at least two-weeks after your last attack. No harm in staying on for many weeks if it makes you comfortable.
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Bob Johnson
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