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        Cluster Headache Help and Support >> Medications, Treatments, Therapies >> 2 years, no CH's - this is what I did
        
(Message started by: Dave on May 27^th, 2007, 2:26pm)

Title: 2 years, no CH's - this is what I did
Post by Dave on May 27^th, 2007, 2:26pm

After my last brutal CH cycle, I made major changes. I have not had a CH in 2 years since.

These are the changes I made. Feel free to debate, theorize, refute it all, or whatever. I'm just reporting what worked for me, and I have to assume that I am not biologically unique completely.

(1) Eliminate all forms of caffeine in any quantity

That means no coffee, no tea, no chocolate, no caffeinated soda. It also means no decaf, which is low caffeine but not caffeine free. It also means no green tea, white tea, or decaf tea, which are low in caffeine but not caffeine free.

If I smoked, I would have to quit. Nicotine is an alkaloid stimulant similar to caffeine.

Herbal teas are OK. White chocolate is OK.

(2) Excercise regularly

At least 4X per week, mixing up aerobic and strength training.

(3) Sleep on non-cluster side

My right side is my cluster side. I sleep on my left side and sometimes on my back, but never on my right side.

(4) Take it easy on the salt.

I don't avoid salt, but I avoid too much of it. Movie theatre popcorn is the worst.

It's really as simple as that.

I haven't had coffee in two years, and I am certain that if I grabbed a cup of coffee right now the CH's would come roaring right back. But I'm not willing to test it out.

Title: Re: 2 years, no CH's - this is what I did
Post by Grandma_Sweet_Boy on May 27^th, 2007, 3:06pm

::) 'nuff said.

Title: Re: 2 years, no CH's - this is what I did
Post by ClusterChris on May 27^th, 2007, 4:07pm

I really hope that is what did it for ya, but before my last cycle, I went 2 years pain free and made no changes whatsoever. My personal opinion is that we can't really change these things, they come and go as they please. I gave up on trying to alter things in life I enjoy just to stop the bastard because I just end up depriving myself of the things I like plus get hit with the ch's. I truley hope your pf period carries on, just thought I'd give ya my take on it all! Looks like I just beat another cycle myself! Had 3 beers last night and still haven't even felt a shadow! WOOHOO!

Cheers
Chris

Title: Re: 2 years, no CH's - this is what I did
Post by vietvet2tours on May 27^th, 2007, 4:07pm

[smiley=laugh.gif] [smiley=laugh.gif] [smiley=laugh.gif] [smiley=laugh.gif] [smiley=laugh.gif]

Title: Re: 2 years, no CH's - this is what I did
Post by Dave on May 27^th, 2007, 4:16pm

on 05/27/07 at 16:07:19, ClusterChris wrote:

Well, I'll let you know how it's going after three years...

Title: Re: 2 years, no CH's - this is what I did
Post by andrewjb on May 27^th, 2007, 5:57pm

:), rock on dave. but make no mistake the thingy [t w a t ] will re-visit, stay calm, breath deep " n ", rock on. andrew.

Title: Re: 2 years, no CH's - this is what I did
Post by UN solved on May 27^th, 2007, 7:15pm

Glad to hear that changes in your diet and lifestyle has helped your migraines.

PFWishes

UNsolved

Title: Re: 2 years, no CH's - this is what I did
Post by JeffB on May 27^th, 2007, 9:07pm

I knew that friggin movie popcorn had something to do with my pain. Thanks dude, you just changed my life. Out with the meds AND the popcorn!!!!!!!!!!

You're the best dude, and you've made it soo simple. What the hell were we all thinking.

Can I still masterbate? It would be a real bitch not thinking about Queen Elizabeth every night before bed!

Title: Salt hasdRe: 2 years, no CH's - this is what I did
Post by Linda_Howell on May 27^th, 2007, 9:32pm

You guys are so cruel...but I was LMAO!!!!!

Dave, please read all the links to the left of here.

Really.

Education is really our ally here and if you educate yourself a little more you will see the error in your thinking.

sleeping on the non cluster side? :-X
Caffiene is a vasoconstrictor (shhh...we need that)
Salt has nothing to do with a deformed hypothalmus.

excersize is alway good.

Title: Re: 2 years, no CH's - this is what I did
Post by George_J on May 28^th, 2007, 12:53am

Well, Dave, I went three years between each of my last three cycles. Didn't do anything special except get older.

I recommend it.

Best,

George

Title: Re: 2 years, no CH's - this is what I did
Post by sandie99 on May 28^th, 2007, 4:55am

Dave,

I'm so glad that you've found what works for you. :) That is wonderful.

Now, when I look at your list, it's what my life looked like. I gave up candy and soft drinks, I've never smoked, I have never had that much alcohol (2 glasses of wine/champagne a year is a lot for me), I avoid salt and spicey food, I work out in a way or another EVERY DAY (I do yoga, pilates, walk long walks).

Yet having done all that I still got hit, a lot. When my chronic ch turned into some PF time, that just happened. Then it came back and now I'm episodic.

I'm not trying to drag your optimism down, absolutely not! I'm Miss Optimistic here. I just want you to be prepared just in case the beast will make its return, it can do that.

And the funny thing is that when it does, it can alter all the things you know about it: I used to drink a lot of coca-cola when my ch begun. Then I cut caffeine out complitely and now, funnily, it is energy drinks (with caffeine and taurine) which keep the beast at bay! Go figure...

Lots of PF days to all,
Sanna

Title: Re: 2 years, no CH's - this is what I did
Post by MR_FLOOR on May 28^th, 2007, 5:17am

Quote:

When my chronic ch turned into some PF time, that just happened. Then it came back and now I'm episodic.

You were chronic and now your episodic Sandie.Is that common I knew it happened the other way but never knew it happened that way.

Dave

Title: Re: 2 years, no CH's - this is what I did
Post by burnt-toast on May 28^th, 2007, 9:07am

2 years, no CH's - this is what I did - If it's CH, you're most likely enjoying a great remission.

You've made some good lifestyle choices. Making these choice may be a good thing but I don't believe they're the reason you've gone into remission.

Ergotamine + Caffeine - Caffergot is an old CH abortive and even preventative in some cases. High caffeine drinks are commonly reported to abort attacks. The realationship between CH attacks and caffeine as a potential trigger and also as abortive/preventative therapy is confusing. It would seem to indicate that CH is not a true vascular disorder and this seems further evidenced in scans showing excessive Hypothalamus activity in CH sufferers that is not present in other recurring conditions that are true vascular disorders.

My last two Neuro.'s recommended quitting smoking for to general health benefit. However they also strongly pointed out that their patients that had done so had not experienced relief from CH.

Excercising regularly is good for all of us, I don't do the gym thing - don't have to - but when I relax after my most vigorous work days - I've become accoustomed to experinecing a series of nasty attacks. I'm only kidding here but maybe I should stop exercising entirely?

Sleeping on my right (cluster side) is indeed a bad decision. I learned early on that it was nearly guaranteed to trigger an attack. At least for me this is good advise.

Lithium Carbonate is part of a drug combo that provides me with effective relief - Lithium Carbonate can be dangerous if fluid/sodium levels drop and result in Lithium Intixication, so I don't have much choice here when sweating heavily - I have to keep fluid/sodium levels up. Now here's the rub - If for some reason I don't maintain fluid/sodium levels my lithium levels should increase and although dangerous provide more relief. But just the opposite has proven to be true - low fluid/sodium levels will result in attacks.

I hope that you and every suffer experiencing remissions enjoys a miraculous lifelong one. It would be nice if a lifestyle change could trigger a remission in every suffer but I haven't the slightest confidence that lifestyle has much to do with the start or stop of CH or the beginning or end of a cycle in eposodic sufferers.

Tom

Title: Re: 2 years, no CH's - this is what I did
Post by Sandy_C on May 28^th, 2007, 11:38am

Dave, I'm happy that these lifestyle changes are working for you. I'm somewhat skeptical though, because many of us episodics do have lengthy remissions between cycles. Personally, my remissions are 18 to 24 months of glorious PF time.

I drink coffee moderately (3 cups max daily), I drink iced tea in the afternoons every day (when in cycle, Red Bull is my friend). I'm not a chocoholic, but I do love a really rich, creamy piece of fudge now and then. I smoke, I don't exercise much at all (borderline handicapped now - can't be on my feet more than 10 minutes without severe pain in my leg), I sleep on all sides, back, front, right, left, whether in or out of cycle - doesn't seem to make a difference to me, and you will never convince me to give up my movie butter/salt popcorn. It ain't popcorn any other way! ;;D

I'm not trying to debunk your theory, but, as others have said, if you truely have CH, the beast will return sooner or later. Keep your guard up, keep your defenses ready.

Good luck,

Sandy

Title: Re: 2 years, no CH's - this is what I did
Post by Jonny on May 28^th, 2007, 11:51am

on 05/28/07 at 09:07:52, burnt-toast wrote:

[b]You've made some good lifestyle choices. Making these choice may be a good thing but I don't believe they're the reason you've gone into remission.

You got that right, Tom!

After 31 years chronic my CH went away for 14 months, I never once thought they were gone for good.

Enjoy your PF time, Dave!

Title: Re: 2 years, no CH's - this is what I did
Post by Charlotte on May 28^th, 2007, 3:29pm

I am glad you're having a long period of pf time.

Whenever I hit the slam portion of end of cycles, I thought something I was doing caused it, and when I hit remissions, same thing. However, now I know that the beast does what it wants, when it wants, and we are just fortunate if something helps.

Good luck,
Charlotte

Title: Re: 2 years, no CH's - this is what I did
Post by seasonalboomer on May 28^th, 2007, 8:33pm

Good for you Dave.

I wish that would do it for me too, but it won't.

I hope you never get one again and appreciate your sharing your story. But, I wish it were that easy.

So roll on dude.

Scott

Title: Re: 2 years, no CH's - this is what I did
Post by tanner on May 28^th, 2007, 9:08pm

Dave, I too am thrilled that you have been PF.

As for your lifestyle changes in my 22 years of daily chronic I have tried every thing you mentioned and yes at the same time!

When I and many others first were welcomed by the beast we were treated with the standard migraine regimen which includes all the things you changed plus no pickled food, no red wine and on and on. Didn't work!!!

Here's hoping you never get another visit :).......Tim