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1haunted1 ,-(

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Re: Warrior gone Guru
Reply #50 - Aug 27^th, 2010 at 1:11am

Agostino Leyre wrote on Aug 10^th, 2010 at 11:16am:

1haunted1 ,-( wrote on Aug 5^th, 2010 at 10:54pm:

[quote author=2D3F2F39393E4A0 link=1280701821/31#31 date=1281041432]

Agostino have you tried oxygen, red bull, and is it called maritol? If so how did they work for you?

Yes I have tried O2 and red bull along with many,many other things as I approach my 20th year aniversary with these things.....

O2 works great if you use it at a very high flow rate 25 lpm and up. Red bull or other energy drinks help some times, a little, especially if you drink it early on. Never tried maritol, sounds like a narcotic and I refuse to go down that road. CH has not defeated me and nor will I allow it to. So I am not going to risk my quality of life by using potentially addictive narcotics.

My bad Agostino, I meant melatonin (DOH !!). I agree with your "narcotics risking the quality of your life" philosophy 100%. As painful as life can be, I dont want to stray down them dark paths again.

I did stumble across a post by Mrs.Deej that said(qualification - it takes 3 pounds of pressure to get a key to work on a keyboard. 6 pounds pressure is what I use in the accupressure.) I can not believe something so simple has escaped me all these years. When I was young I aggressivly tried accupressure with no success. But finding this lil nugget has helped me tremendously over the past month and a half or so. So THANK YOU Mrs.Deej for your helpful tidbits.

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Agostino Leyre

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Re: Warrior gone Guru
Reply #51 - Aug 27^th, 2010 at 10:25am

I have used melatonin over the last 6 or 8 years, (can't remember exactly when I first started using it). And I will say it is the best preventive I have used. It doesn't work all the time, and I have to change brands and dosages to keep ahead of the nightmare, but it has worked much better than any other preventive that I have tried.

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Triptans cause increased number of hits and increased intensity. Learn it, believe it, live it. I use triptans as the absolute LAST RESORT when treating my CH.&&

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Agostino Leyre

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Re: Warrior gone Guru
Reply #52 - Aug 27^th, 2010 at 10:30am

Lettucehead wrote on Aug 10^th, 2010 at 8:14pm:

Yes, Marinol (if that's the med you're referring to) can produce dependency - but it's not a narcotic. It is a derivative of the active ingredient in marijuana and is considered a cannabinoid. I don't know of any studies showing effectiveness for CH

Well, I tried to use regular ol' MJ as an abortive once. I will never use it again. It brings a new element to the beast. Not a scene I care to view again, as long as I live.

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Triptans cause increased number of hits and increased intensity. Learn it, believe it, live it. I use triptans as the absolute LAST RESORT when treating my CH.&&

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1haunted1 ,-(

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Re: Warrior gone Guru
Reply #53 - Aug 31^st, 2010 at 4:19pm

Well for any one interested I have been "gutting them out". In the past I have used hundreds of imitrex shots and thousands of pills to help my headaches, only to get another headache an hour later, just to take another shot, to get another bad one later, that I had to "gut out" anyway. I get rebound headaches and they would usually end up being a 9 to 10 on kip scale.

Now I just grab my ice pack, a cup of coffee, tune out the world and my thoughts and just fight my way to peace of mind. In my mind, these things have to run their course. So my body and mind learn to fight them off, with no rebound headaches, or late night trips to the emergency room, or frustrations towards the people around me, no costly medications. Just me against my headaches. And Im content here. And the fight has helped. I get less headaches. I get less 9 and 10s on the kip scale. I believe my headaches have even dulled.

I am not looking to argue, or am I bashing anybody else for the way they handle their headache. Whatever helps, do it.

I am offering up ideas to people who are tired of fighting a fight they have to fight anyway. That cannot afford to dish out money for prescriptions, doctors and especially doctors who think they are on to your drug addiction.

Is there anybody here who has all the medications they need, and NOT have to fight this fight?

Anybody here tired of fighting that fight?

My fight with the beast is less, because for me, less is more.

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bejeeber

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Re: Warrior gone Guru
Reply #54 - Aug 31^st, 2010 at 5:36pm

1haunted1 ,-( wrote on Aug 31^st, 2010 at 4:19pm:

Is there anybody here who has all the medications they need, and NOT have to fight this fight

?

Yes. I didn't have to fight through a single full length, full blown attack during my last episode, thanks in large part to approaches, strategies, tactics and backup plans I found out about here.

I much preferred that over fighting through a hundred unabated attacks. I guess I'll just have to leave that to the warriors turned gurus (?).

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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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Brew CH.com Sponsor CH.com Alumnus Offline Posts: 14163	Re: Warrior gone Guru Reply #55 - Aug 31^st, 2010 at 5:44pm Quote: Is there anybody here who has all the medications they need, and NOT have to fight this fight? Yessir. And the last time I had to take it was May 28, 2010. Nothing but the occasional shadow since (easily dispatched with an energy drink). Keep in mind, I was chronic.
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Redd CH.com Sponsor Offline Posts: 8457 Stevens Point USA Wisconsin Gender:	Re: Warrior gone Guru Reply #56 - Aug 31^st, 2010 at 6:23pm Amazing what the right treatment plan can do, right bro?
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Lettucehead

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Re: Warrior gone Guru
Reply #57 - Aug 31^st, 2010 at 9:14pm

Yup!
I agree with Bejeeber and Brew.

On Verapamil and Magnesium currently - have even been able to stop the Lamictal.
Shadow in the eve perhaps once a week now, if that. Easily tx'ed with Red Bull or a few minutes on O2.

I don't have to keep fighting a fight that I will have to fight anyway because right now there is no fight...

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Listen, and understand. That terminator is out there. It can't be bargained with. It can't be reasoned with. It doesn't feel pity, or remorse, or fear... 'The Terminator' AKA CH

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1haunted1 ,-(

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Re: Warrior gone Guru
Reply #58 - Oct 19^th, 2010 at 11:29pm

Hello everyone,
My cluster headaches have seemed to disappear. (around the beginning of september) This is only the 2nd time in 23 years of hell that I have went a month without a soul deflator.(actually its been a month and a half !)
And I would like to thank everyone here for "holding my hand" through my time of darkness(literally, I stayed in the dark).
I understand that my hopes are up,and they will stay up. Because I BELIEVE!

I hope everyone is also feeling better today. Best wishes.

Aaaaaaaany way, Im certainly not saying any goodbyes, only thank you'.s for being here.

talk at yall later

sincerely, craig ^^^

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Guiseppi CH.com Moderator CH.com Alumnus Offline San Diego to Florida 05-16-2011 Posts: 12063 SAN DIEGO, CALIFORNIA USA Gender:	Re: Warrior gone Guru Reply #59 - Oct 20^th, 2010 at 8:51am Don't be a total stranger, we like hearing from people in and out of cycle. Glad you found some pain freee time, it's a beautiful thing isn't it? Hoping he loses your address for a while! Joe
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Kate in Oz CH.com Hall of Famer Offline Posts: 633 Australia Gender:	Re: Warrior gone Guru Reply #60 - Oct 21^st, 2010 at 5:53am Great to hear that you're getting some serious relief!! Hope it lasts a good long while Take care, Kate
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