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New CH.com Forum › Cluster Headache Help and Support › Getting to Know Ya › Newbie

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Newbie (Read 1221 times)

Jan

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Newbie
Jun 14^th, 2010 at 12:45am

Hi, my name is Jan, I'm 45 and have been suffering with CH since I was 16 but didn't know what they were until I was 30 when I finally convinced my GP to get me to a neurologist.
I'm seasonal, episodic, they started a week ago. My season is June to Sept. I don't know if I have the strength to do this again. Cry

8 years ago I found my cure at a health food store - Migracin. Long story short, they quit making these pills 3 years ago and I moved to BC from AB. For some reason, I haven't had a headache until this summer, the Beast has reared his ugly head.
So, I'm starting again from scratch!

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Racer1_NC CH.com Moderator CH.com Alumnus Offline "Well, let's go see." Posts: 4417 Lewisville, NC Gender:	Re: Newbie Reply #1 - Jun 14^th, 2010 at 12:59am Welcome Jan..... For a good abortive check out the O2 link on the left side of the screen.....very good info there. I've never heard of Mirgacin and a quick look at it's ingredients doesn't really show me anything I've found effective against CH but if it worked for you I'm glad. Bill
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Kat

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Re: Newbie
Reply #2 - Jun 14^th, 2010 at 1:27am

Hi Jan. I know how hard it is (I get to say that, lol). One day at a time thats all you have to do. Mine come every day, and I take one day at a time. If it weren't for my kids, I probable wouldn't have made it this far. I've haven't been able to work in three years, and only was diagnosed a month ago and just got on meds that 2 wks ago that gave 6 days pf. Together we can do it. They probably dont know it, but the ppl on this site have seen me through a few rough days and night, tonight being one of them! I know it doesnt make it any easier, its pure hell. We are stronger than we think we are ... we are true survivors!!

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bejeeber

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Re: Newbie
Reply #3 - Jun 14^th, 2010 at 2:28am

Good thing you landed here!

I've also had 'em for 30 years but am lucky enough to have gotten some real control over them - thanks in large part to info and advice obtained here.

You very well may be able to do the same.

Racer1 is right about the oxygen info link to the left of this page. O2 used in that manner is a heck of a good abortive.

And there are other ways to knock this beast down for the count that you won't hear about at a ~~ignoramus~~ doctor's visit.

The favored preventative method at clusterbusters.com, described in this video, has been showing impressive results:
Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.

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Guiseppi

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Re: Newbie
Reply #4 - Jun 14^th, 2010 at 3:29pm

Do get into the doc and talk about a decent prevent med. One you'll take daily to reduce the number and intensity of your hits. Verapamil is a common first line prevent, Topomax has a loyal following as does lithium, my prevent of choice. My prevent will knock down 60-70% of my attacks,,,really reduces my dependency on the oxygen!

For now do try the energy drink routine. I use Red Bull sugar free but any containing caffeine and taurine will work. Chug one down when you feel an attack starting. Will abort or at least reduce attacks for many.

Joe

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

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wimsey1

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Re: Newbie
Reply #5 - Jun 15^th, 2010 at 8:16am

Jan wrote on Jun 14^th, 2010 at 12:45am:

I don't know if I have the strength to do this again.

Yes, you do. But not alone. See a headache specialist, get your armory of preventatives and abortives in place, and line up your support network with suggestions on how to help when the music starts and the dance begins. And keep reading and keep posting. Everyone here is pulling for you. Prayers and blessings!

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Jan CH.com Newbie Offline I Love CH.com! Posts: 4	Re: Newbie Reply #6 - Jun 15^th, 2010 at 11:03am Thanks for the welcoming, I will be following up on your tips and advise. It's nice to know there's someone there!
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shaggyparasol

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Re: Newbie
Reply #7 - Jun 15^th, 2010 at 11:41am

Similar story here Jan. Hang in there, cycles suck, but get ready to re-attack!

I checked the Migracin ingredients and agree with Bill. Feverfew and aspirin (willow is salicilic acid where aspirin came from) and some other stuff. Saw an ad online, maybe they still sell it. Sometimes for us episodics, by the time we try stuff our cycle is ending anyways. That's why I used to think it was my eyes, allergies etc (long boring story). Tongue

Anywho, back to the attack! When do you get you attacks? Us daytimers can use copious amounts of caffeine/caffeine and taurine and get some good relief. Take right before the onset.

BIG oxygen is helpful for many/most here. There is a protocal so don't think the tiny nose oxygen you got in the ER was big enough, it wasn't.

Melatonin for the nighttimers. Enough people are having success it is worth a try. Read about it on this site.

Personally I skip the irritating doctors visits and use caffeine and the techniques discussed at Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

; Talk about a strong counter attack, KABOOM!! Angry

So yes, clusters suck. And yes you can take charge. I know you are at the start of your cycle and that is not a great time to get your arsenal ready, but here we are so get crackin'. I am always thankful I am not chronic and that makes me feel good. And if I was chronic I would be at the busters too. Cheesy

Shaggy says good luck Jan!!

--Shaggy

(and a sunglass guy to emphasize my overuse of modicoms)

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