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New CH.com Forum › Cluster Headache Help and Support › Medications, Treatments, Therapies › Prevention Method(s) that work for me.

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Prevention Method(s) that work for me. (Read 1206 times)

DaveM1

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Prevention Method(s) that work for me.
Sep 25^th, 2010 at 11:57am

My first post, just registered, new to all of this (online forum).
I was diagnosed 7 years ago in my late 20's. I only get them once a year (usually).... almost always during the changing of the season(s) -- fall or spring. Usually last 2-6 weeks .... absolutely nothing works when they hit me... just have to bear it.
My neurologist has nothing "preventative" to offer/suggest .... he puts me on prednisolone and sends me on my way (oxygen , imitrex, etc are always offered too to treat).
I'm not sure how other people react to that drug, but it makes me feel horrible .... it (prednisolone) does however knock them out in a matter of hours.... but I have to stay on them for a week approx.
Ok, so here's the purpose of my post --- I did extensive research and found a combo of these three things have SIGNIFICANTLY helped upon onset of a cluster series. I can't express how much this has helped reduce intensity/pain (in some cases to nothing) and shorten the duration. I'd REALLY like everyone's feedback... these things don't work for treating when I actually get one, but again, dealing with the week(s) during the year these suckers attack me.

Before bed (and/or throughout the day if needed) -- I get hit at night 80% of the time.
* two teaspoons of glucosamine (w/chondroitin and msm)
* magnesium -calcium supplement in hot water, drink like tea. One heaping teaspoon ...
* melatonin (3mg)

It's magic.... sometimes I get short , less intense ones.... sometimes nothing at all.... as soon as they leave (which usually takes weeks) I don't see them again till the next year or at least 6 months.

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Guiseppi

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San Diego to Florida 05-16-2011

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Re: Prevention Method(s) that work for me.
Reply #1 - Sep 25^th, 2010 at 12:13pm

You've stumbled onto a couple of things that we've been discussing hot and heavy around here lately!

Melatonin. Many are avoiding/reducing their night time hits by taking Melatonin 30 minutes before bedtime. Typical dosing seems to be in the 9-12 mg range, great to hear you're getting relief at the 3 mg range.

Then there is the PH diet! Altering your arterial PH while in cycle appears to make you less succeptible to attacks. I tried it last cycle when oxygen began failing me. Within 30 hours oxygen was working as an abort again and the number and intensity of my hits went down:

Magnesium, Calcium with Vitamin D and Zinc, washed down with fresh lemonade, up to 4X daily. I never went over 3X a day and it worked wonders for me!

Couple of comments on your post. Careful with the prednisone, it will completely block attacks for me, but long term useage can eat you up on the inside! Wink

Imitrex injectables abort attacks very quickly for me, but I agree, I hate how it makes me feel. Oxygen has almost eliminated my imitrex useage. Last cycle went 8 months and I don't hink I injected more then 5 times.

Read the oxygen info tab on the left as it must be used correctly or it's worthless. The keys, a Non Re Breather Mask, and a high flow regulator..at LEAST 15 LPM, preferably 25 or better. Your lungs must get pure 02, no outside air no exhaled air. That's why nasal canulas, re breather masks and low flow regulators are all recipes for failure. I used to take 90 minute rides with the beast. Using oxygen I am typically pain free in 6-8 minutes.

You didn't mention any prevent treatments, Have you tried verapamil, Lithium or Topomax? Lithium, at 1200 mg a day will block 60-70% of my attacks.

Also, take a look at Clusterbusters.com for alternative treatments.

Glad you found us, welcome home!

Joe

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

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his wife

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my children's laughter

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Re: Prevention Method(s) that work for me.
Reply #2 - Sep 25^th, 2010 at 1:57pm

Joe (or Batch if you're reading this)

I want to try this, but have a couple questions. For others who are still new like me, there is one calcium citrate vitamin that contains all the required ingredients (I wrongly thought I had to buy vitamins containing each supplement).

Are there certain times a day you take these (3x @ ea meal, or all 3 at the same time, is morning or evening better?). Does it have to be "homemade" lemonade? Will the frozen canned version work or does fresh lemons work better? (I saw the post with Margarita mix too, would prefer to stay with lemonade) Should we continue this even after his cycle ends?

I tried searching for these answers, but started getting dizzy reading all the information. Between Bob Johnson, Batch, Joe, whoever discovered oxygen therapy, and everybody else, I feel like I'm in the midst genius. Thanks doesn't begin to express the gratitude I feel to everyone who've paved the way with their research to make it easier for others.

Thanks for any info.

« Last Edit: Sep 25^th, 2010 at 1:59pm by his wife »

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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: Prevention Method(s) that work for me. Reply #3 - Sep 25^th, 2010 at 5:35pm Just needs to be REAL lemonade. I used the "Just Lemonade" brand but frozen would be fine. I spaced it out during the day, about 3X a day. I used separate supplements but I don't see why a combo supplement wouldn't work just fine! I continue the supplement 1X a day while off cycle, just cuz! Joe
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his wife CH.com Old Timer Offline The sweetest sound is my children's laughter Posts: 271	Re: Prevention Method(s) that work for me. Reply #4 - Sep 25^th, 2010 at 11:07pm Ok, that's what I wasn't sure of, if each supplement had to contain a certain mg. if it was that specific. We'll try the lemonade too (guess Mike's Hard Lemonade would defeat the purpose lol) Thanks.
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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: Prevention Method(s) that work for me. Reply #5 - Sep 26^th, 2010 at 11:49am guess Mike's Hard Lemonade would defeat the purpose lol) Thanks. But I do like the way you think!!! Joe
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