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Kimmie

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What works best
Mar 7^th, 2009 at 7:37pm

Being an episodic cluster head for 17 out of my 36 years of life, i've decided to STOP reading everything on the net spending hours and hours researching trying to find some link to a cure.

Forgive me for ranting- I'm in Mid-Cycle!

Going to my doc Monday and just bring 3 sheets of paper full of meds that prevent CH. I don't just want to abort anymore!! I want to "treat" it.

I dont care if i walk out of the docs with 7 diff meds...HELL..cover it up, put a cape on it, and let it fight crime!!!!!

Besides O2,(which is a great abortive) what seems to be a good prevent med that has worked for a majority of you all?

-Kim

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Batch CH.com Alumnus Offline Control The Beast With O2 & D3 You Must Posts: 3708 Bremerton, WA Gender:	Re: What works best Reply #1 - Mar 7^th, 2009 at 8:37pm Kimmie, Check your PM InBox. V/R, Batch
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Dennis

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Re: What works best
Reply #2 - Mar 7^th, 2009 at 11:38pm

Hi Kim,

In 33 years with this affliction, the only preventives that have ever worked for me are verapamil, and now lithium carbonate. But we're all different, I'm afraid.

If you have a good doctor, who knows about CH, then you can work together to find something that works for you.

My feeling has always been that I'd rather have the doc be aggressive and try different things, even if they don't turn out to be effective for me. The status quo is not acceptable.

I hope you find your silver bullet quickly...

Dennis

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BarbaraD

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Re: What works best
Reply #3 - Mar 8^th, 2009 at 8:45am

topamax has worked for me as a preventative (but I take it at night to lessen the side effects). 100mg at least or its ineffective.

Don't forget the O2 as an abort (not a good idea to stop an abort - why hurt when you don't have to?). Listen to Pete on that one.

Whatever your doc gives you - give it a chance to work. A couple of days isn't a good chance. Some of these meds take a month or so to SEE if they're working. Maybe a pred taper while they're getting into your system would be good.

Hope you kick some CH rear....

Hugs BD

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What don't kill ya, Makes ya stronger!

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DennisM1045

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Re: What works best
Reply #4 - Mar 8^th, 2009 at 10:46am

Verapamil works to reduce the number and severity of the hits for me. I end up with one or two bad days a week which I can live with.

The rest I clean up with O2 and, when the wheels really come off, Imitrex injections.

I'm curious, you've suffered for 17 years now. In that time you've never tried a prevent? Is it time for a new Dr?

Another note, if you do get a prevent to try ask for a steroid tapper to bridge the gap while the prevent ramps up in your system.

-Dennis-

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Where there is life, there is hope.
Where there is Oxygen, you must use proper caution.
So be safe, don't smoke while using O2. Kill the pain and not yourself.

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Farzad

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Re: What works best
Reply #5 - Mar 8^th, 2009 at 2:24pm

Hi

I am episodic and Prednisolone is very effective for my case, but the behavior of the CH is different each time.

first time i used 50 mg , but now CH does not respond to even 80, and this time i used 100 mg for start of preventive med. now i am reducing it to 0 to discontinue.

I remember several years ago , indomethacine was my abortive med. while now it is Ergotamine ! so what i afraid is that each time it is different!!
Farzad

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Farzad

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-johnny- CH.com Sponsor Offline theres no smoking on the dock Posts: 1642 fayette county ohio Gender:	Re: What works best Reply #6 - Mar 8^th, 2009 at 7:37pm try clusterbusting -no more trips to the doctors -no more pharmacists -no more drugs eating out your insides -hard to detect in a drug screen -no continuous dosing. 2 low doses of mushrooms cleared me up in weeks
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Kimmie CH.com Veteran Offline OW!! Posts: 187 US Gender:	Re: What works best Reply #7 - Mar 8^th, 2009 at 7:54pm Pete gave me a link to CB so I'm going to order some tonight. Wonder how long it will take to ship?
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Kimmie

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Re: What works best
Reply #8 - Mar 8^th, 2009 at 8:01pm

Dennis,

15 of those years were lost due to a diff. GP's assuming i had sinus infections.

Properly diagnosed in 06, and was issued abortives ( Maxalt, Imitrex, fioricet)

and lastly, and please dont judge or yell for this
I would be prescribed hydrocodone as it has a narc, an analgesic, and anti-histamine in it during my "once-a-year cycle".

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Steambug CH.com Junior Offline clock watching Posts: 63 Worcestershire, UK	Re: What works best Reply #9 - Mar 15^th, 2009 at 3:50pm sorry for jumping in - what is clusterbusting? I've seen it mentioned byt not sure what it is? couldnt bring it up on a search, thanks.
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Bob Johnson CH.com Alumnus Offline "Only the educated are free." -Epictetus Posts: 5965 Kennett Square, PA (USA) Gender:	Re: What works best Reply #10 - Mar 15^th, 2009 at 4:03pm Since there is no "cure", the best is learning how to cope well..... Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or
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mezza

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Re: What works best
Reply #11 - Mar 15^th, 2009 at 8:04pm

Kimmie

Last cycle I took Verapamil at 600+ mg . It pretty much stopped my regular hits but it did have side effects. I could live with the side effects at the time as they weren't as bad as the pain from the hits

My cycles come in early march. This past feb, I decided to try RC Seeds. About Mid Feb , I took 25 seeds and continued this every 5 days. On March 3rd ( same time as when my cycle started last year) , got a strong shadow, burning etc, never ramped up any further though. Dosed again last week. No pain or shadows since.

I feel pretty confident that RC seeds prevented this cycle. I am going to do one more dose on tuesday and then cut to a maintence dose every month. I am still experimenting with dosages.

I order from I am Shaman. Good luck to you.

kelly

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Kimmie CH.com Veteran Offline OW!! Posts: 187 US Gender:	Re: What works best Reply #12 - Mar 15^th, 2009 at 9:13pm mezza, That's where i ordered. ......Stull haven't gotten them though
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mezza CH.com Alumnus Offline I love YaBB 1G - SP1! Posts: 415 north carolina Gender:	Re: What works best Reply #13 - Mar 16^th, 2009 at 12:53am They usually come pretty quickly- if they aren't there in 4 days at the most after you ordered- you may want to give them a call Kelly
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