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Skullcrusher

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I'm Tired of Hurting!

Posts: 48
Guelph,Ontario, Canada
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When will it stop!
Oct 2^nd, 2009 at 4:37pm

I'm 6 weeks in, on my 13th year. I thought it wasn't going to last this long. I have been on every med. know to man as so many others alike. Some work and some do nothing. The first 8 years my clusters were October, November and December everyday (up to 4 a day). The following 2 years they decided to treat me to double the fun. 3 months twice a year. What a treat!!! Survived it. Now last year and this year back to the 3 month characteristic, just a little sooner. My doctor told me it would last 10 to 12 years. When will it STOP!!!

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Linda_Howell

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Re: When will it stop!
Reply #1 - Oct 2^nd, 2009 at 4:52pm

No body knows when it will stop, and that Dr. was very irresponsible to give you a definitive time like that. 10 to 12 years? How could anyone KNOW that?

What do you have in your arsenal right now that is working? Do you have oxygen as an abortive? Are you taking any preventative that works? Verapamil? Caffergot? Lithium?

Let us know and maybe we can help.

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Hurt people.....hurt people. Think about it.

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Brew CH.com Sponsor CH.com Alumnus Offline Posts: 14163	Re: When will it stop! Reply #2 - Oct 2^nd, 2009 at 4:53pm Is your doctor a medium as well? Truth is, nobody knows how long these things last. Ask him for this Saturday's lottery numbers while he's at it. Stick around. You'll find a few coping techniques around here.
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Guiseppi

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San Diego to Florida 05-16-2011

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Re: When will it stop!
Reply #3 - Oct 2^nd, 2009 at 5:29pm

Welcome to the board. Over 30 years here...and they still haven't stopped. Thanks to this board, I no longer live in total fear of the beast as I have the tools to kick his arse more often then not.

Give us a run down of what you're using as abortive meds and prevent meds. Maybe we can help tweak your treatment and get you hurting a little less. Hang in there.

Joe

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"Somebody had to say it" is usually a piss poor excuse to be mean.

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seaworthy CH.com Hall of Famer Offline Posts: 706	Re: When will it stop! Reply #4 - Oct 2^nd, 2009 at 6:12pm I anxiously await the list of meds that any Doctor that can predict the duration of CH has prescribed. Was he using tarot cards?
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Charlie

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Jamestown, NY
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Re: When will it stop!
Reply #5 - Oct 2^nd, 2009 at 7:10pm

Quote:

No body knows when it will stop, and that Dr. was very irresponsible to give you a definitive time like that. 10 to 12 years? How could anyone KNOW that?

What! I'm with Linda and the rest. No one can know what will happen with this horror. Mine simply dwindled away when I was 45 and it surprised both my doctor and me.

It may just as easily happen to you.

Hang on and feel free to rant away here. It's our thing.

Charlie

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There is nothing more satisfying than being shot at without result---Winston Churchill

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Marc Ex Member Gender:	Re: When will it stop! Reply #6 - Oct 2^nd, 2009 at 7:25pm We can't offer you a cure, but we sure as heck have the collective knowledge to help you find something to give you more control. Stick around and tell us more. You may be surprised. Marc
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George

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Re: When will it stop!
Reply #7 - Oct 2^nd, 2009 at 11:12pm

Good advice up above.

No one can say how long they'll last. Doctor or no doctor. You can't control that. (43 years of episodic CH here--and counting.)

Finding a way to ride through each new cycle with the least disruption to your life, health, and sanity--that's what you can control.

Wishing you the best, and hoping you find an effective means to get through this one--and any others that may follow.

George

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"Whoever loveth me, loveth my hound." (Thomas More, author of "Utopia", and Chancellor of England. 1477-1535)

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-johnny- CH.com Sponsor Offline theres no smoking on the dock Posts: 1642 fayette county ohio Gender:	Re: When will it stop! Reply #8 - Oct 2^nd, 2009 at 11:24pm i don't even go o the doctor for CH
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Callico

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Re: When will it stop!
Reply #9 - Oct 3^rd, 2009 at 12:14am

32 yrs & counting, with the last 6 or so chronic. I don't even keep track anymore. Just take one day at a time and deal with it.

Kudzu and O2 have given me my life back over the last few months. Haven't even use the O2 in 4 weeks! First time in a couple of years that I haven't had one over a K4 for that long! I'm knocking on my head as I don't have any other wood around. Grin

If you have not had success with any prevents I would heartily suggest you look into Kudzu. There is info available on the old board or drop me a PM if I can help.

Jerry

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"Political correctness is a doctrine, fostered by a delusional, illogical minority, and rabidly promoted by an unscrupulous mainstream media, which holds forth the proposition that it is entirely possible to pick up a piece of dung by the clean end." Texas A&M Student (unknown)

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Barry_T_Coles CH.com Alumnus Offline Posts: 2073 Karratha\|,West_Australia Gender:	Re: When will it stop! Reply #10 - Oct 3^rd, 2009 at 4:53am Charlie wrote on Oct 2^nd, 2009 at 7:10pm: Mine simply dwindled away when I was 45 and it surprised both my doctor and me. Charlie And mine didn't start till I was 49, show me a doctor who can figure that & I'll show you a genius. Cheers Barry
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Skullcrusher

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I'm Tired of Hurting!

Posts: 48
Guelph,Ontario, Canada
Gender: male

Re: When will it stop!
Reply #11 - Oct 3^rd, 2009 at 6:52am

Yes, I was told that for some people the clusters can last the rest of there lives? I was under the impression that in most cases they stop by 12 years. In my last job I had a friend who also had clusters and his stopped after 10 years. Lucky him!
I'm currently on prednisone and lyrica. Prednisone I have been using every year. Some years it works great, other years I don't think it does anything... First year for Lyrica. Don't like it much. Can't think at work always thirsty, always hungry and have trouble remembering my name. I have Lidocaine, Imitrex nasal spray 20mg, Imitrex injections, Relpax (from last year that I don't care for). Tried Maxalt wafers in the past they sometimes work. A list a mile long of drugs, honestly I can't remember right now.....Imitrex has always been my closest friend.
This site has helped me this year. Thanks!

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Skullcrusher CH.com Junior Offline I'm Tired of Hurting! Posts: 48 Guelph,Ontario, Canada Gender:	Re: When will it stop! Reply #12 - Oct 3^rd, 2009 at 6:58am Yes, I also have an oxygen tank (forgot to mention that). It helps sometimes. Some time I have to pull it around with me as I burn a hole in the carpet walking in a circle. I look on the bright side, I don't need a tread mill.
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Barry_T_Coles CH.com Alumnus Offline Posts: 2073 Karratha\|,West_Australia Gender:	Re: When will it stop! Reply #13 - Oct 3^rd, 2009 at 9:32am Skullcrusher wrote on Oct 3^rd, 2009 at 6:58am: I look on the bright side, I don't need a tread mill. You still have your sense of humor "treasure that" Cheers Barry
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Marc Ex Member Gender:	Re: When will it stop! Reply #14 - Oct 3^rd, 2009 at 9:57am Skullcrusher wrote on Oct 3^rd, 2009 at 6:58am: ....... I also have an oxygen tank (forgot to mention that). It helps sometimes........... Have you considered trying a higher flow rate? At very high flow rates, O2 works so well for me that I rarely need anything else. Marc
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