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        New Message Board Archives >> Medications, Treatments, Therapies 2005 >> Cluster Free For Five Months
        
(Message started by: adonasetb on Jul 6^th, 2005, 7:18pm)

Title: Cluster Free For Five Months
Post by adonasetb on Jul 6^th, 2005, 7:18pm

About 4 1/2 months ago i posted a message saying that i had tried a new treatment to prevent the CH's - the treatment that i've been using is folic acid. At the time of the posting I had been CH free for over two weeks (which was a record for me). I've now gone over the five month mark and still no CH ;;D

I can't begin to express how it feels to be able to go to sleep at night and not worry about waking up in extreme pain - I suffered from chronic clusters - never went more than 2 or 3 days between attacks. That went on for over 22 years - it had almost reached the point where the CH was controlling my life - afraid to go on vacations - afraid to go out at night - afraid to spend the night with friends - ......... I never knew when they would hit - during the rush hour drive home - at a meeting - dinner - but I knew for certain that i wouldn't make it through the night without the CH paying a visit - it's hell when you're afraid to go to sleep at night.
I tried everything - every new medication - nothing worked for very long and nothing worked as a preventative... nothing that is, until i tried the folic acid routine. I take 800 mg of folic acid daily. In addition to the folic acid, I also take a good regiment of vitamins and minerals - nothing fancy, just over the counter multi-vitamins and minerals.
Maybe this won't work for everyone - not trying to imply that it will BUT it has worked for me. For the first time in over 20 years I feel I'm back in control of my life and it's a wonderful feeling.
Just wanted to share this with everyone - thank you

Adonaset

Title: Re: Cluster Free For Five Months
Post by LeLimey on Jul 6^th, 2005, 7:54pm

I'm glad youre pain free, I hope it stays working for you! Thanks for sharing but just out of curiosity what other vitamins etc are you taking? it may be the combination that works.
BTW anyone who is pregnant or trying - you should be taking that folic acid for that reason too!!

Title: Re: Cluster Free For Five Months
Post by adonasetb on Jul 7^th, 2005, 10:49am

It was a friend that recommended trying the folic acid - she was a cluster head that started taking folic acid to help her in her attempt to get pregnant - she noticed a reduction in the frequency of the clusters and now the only headaches she has is caused by a demanding baby girl.

The vitamins and minerals that I take along with the folic acid .............. the list looks formidable but in all honesty, most of these can be found in multi-vitamin tablets

Ginkgo Biloba (can't remember why I take this one)
Calcium 1326 mg
Magnesium 268 mg
Zinc 90 mg
Vitamin A 6500 IU (20% beta carotene)
Vitamin C 150 mg
Vitamin D 800 IU
Vitamin E 75 IU
Vitamin K 20 mg
Thiamin 3 mg
Riboflavin 3.4 mg
Niacin 36 mg
Vitamin B6 5 mg
Folic Acid 800 mg
Vitamin B12 24 mcg
Pantothenic Acid 15 mg
Iron 18 mg
Selenium 105 mcg
Copper 2 mg
Manganese 2 mg
Chromium 120 mcg
Potassium 99 mg

Wishing everyone a pain-free day
Adonaset

Title: Re: Cluster Free For Five Months
Post by LeLimey on Jul 7^th, 2005, 10:55am

Wow impressive list alright!
Two little tips for you. Take the iron with orange juice as it increases your absorption of it and don't take the iron and calcium within 3 hours of each other as one will stop the absorption of the other. I have to time all my pills as I have to take massive doses of both of those each day for a crappy bone disease I have!
Hope this helps a little
Helen

Title: Re: Cluster Free For Five Months
Post by stomper on Jul 7^th, 2005, 11:28am

folic acid, man does this upset the stomach, as i still am eating little food as it seems everthing kicks the beast in gear. what r the side effects?? been tryin everything. jimm

Title: Re: Cluster Free For Five Months
Post by floridian on Jul 7^th, 2005, 12:09pm

Folic acid deficiency is a good way to lower melatonin production. Pyridoxine increase 5htp levels. Niacin can prevent migraines (and possibly clusters). And the list goes on.

http://www.med-owl.com/clusterheadaches/tiki-index.php?page=B-Vitamins

Stomper: there are essentially no side effects from a modest dose of folic acid except maybe for a possible allergic reaction to other things in the tablet. According to the physicians desk reference, folate doses up to 1 mg are well tolerated.
http://www.pdrhealth.com/drug_info/nmdrugprofiles/nutsupdrugs/fol_0110.shtml

Title: Re: Cluster Free For Five Months
Post by floridian on Jul 7^th, 2005, 12:14pm

Adonasetb,

did you mean 800 mcg (micrograms)? 800 mg is a very large dose.

Title: Re: Cluster Free For Five Months
Post by ozzy on Jul 7^th, 2005, 1:07pm

on 07/07/05 at 10:49:10, adonasetb wrote:

Ginkgo Biloba (can't remember why I take this one)

Not to detract from the thread, but I thought that was really funny....

Ozzy

Title: Re: Cluster Free For Five Months
Post by vig on Jul 7^th, 2005, 1:26pm

so if you're taking all the vitamins (which is good), how do you know it's the folic acid doing the trick?
Could it be the magnesium or the calcium? or something else?

oh, and ozzy's right...
that IS funny!

Title: Re: Cluster Free For Five Months
Post by adonasetb on Jul 7^th, 2005, 5:32pm

Seems that i did make a boo boo when i listed the vitamins and minerals - i listed 800 mg of folic acid when it should have read "800 mcg" - I guess everyone should be glad that I'm not a doctor writing out prescriptions eh?????

I did notice some rumbling in the tummy when i took everything at once but it's not a problem if i spread it out over the course of the day.

How do I know that it's the folic acid that's made the difference? To be honest, when my friend recommended the folic acid I purchased a bottle of folic acid tablets - once that supply was depleted I looked at the ingredients in several "one a day" type vitamin tablets and decided that the additional vitamins and minerals wouldn't hurt so why not take the folic acid along with other "healthy" stuff... then it just sorta esculated into a vitamin ritual.

I wish I could provide scientific evidence - but I can't - but something in that combination of ingredients has made a huge difference - one simple fact remains - for 22 years I suffered with CH on a daily basis and now, I haven't had a single attack in 5 months. That's as scientific as I can get. I can go to sleep at night and not worry that my grandchildren will hear their grand-dad moaning in pain in the middle of the night - I'm not afraid to get in the car and make a over-night trip. Maybe that's not scientific proof - so I'll just refer to it as a blessing - one that I appreciate every single morning.

Adonaset

Title: Re: Cluster Free For Five Months
Post by paul_pero on Jul 9^th, 2005, 8:59am

Good to hear that your PF dude!

Now all the problem is the rattling of the pills in your stomach. ;)

Paul

Title: Re: Cluster Free For Five Months
Post by stomper on Jul 10^th, 2005, 11:30am

Hey now!! ADON I just have to say THANK YOU re: the
Folic Acid. I have been in a bad cycle since Dec. Recently out of work a couple months because of it too. I have always used imitrex inj on a daily basis until my insurance and doctor screwed me over and wont give me another script. They say I'm taking too much of it. Can't get more injections till mid July. My wife has been on this website for months, reading alt options. She ordered me the Hawaiian seeds, tried that for a while. I did have some relief with that, but unfortunately not the relief others got. I used O2 with the seeds but O2 did not help at all, in fact made them worse!! Still was getting attacks like crazy. Then she found your posting re:FA and she ran to the store to get some. Of course I was reluctant but she made me take it. And OMG I have not felt like this (normal) since Dec. UNFREAKIN' BELIEVABLE. :o I have been able to sleep a full night for the past 4 nights in a row without even a shadow. [smiley=sayyes.gif] I am taking the Folic Acid 800 mcg's (Walgreens brand) plus 1 multi-vitamin (men's health formula that I got at Osco) daily. Only other meds I'm still on is the 300mg of Verap. I'm just p.o.'d that out of all the doctors I've been to...not one doctor ever suggested Folic Acid. Something so simple as an over the counter medicine like this can give so much relief and change..how the hell can the "professionals" not know about this or even suggest to try it. I just want everyone out there reading this to know about it in case they want to try it as an alt means. PFDAN to everyone!!!!!! [smiley=thumb.gif] jimm

Title: Re: Cluster Free For Five Months
Post by BobG on Jul 10^th, 2005, 12:32pm

on 07/07/05 at 10:49:10, adonasetb wrote:

Ginkgo Biloba (can't remember why I take this one)

ROTFLMAO [smiley=crackup.gif] Good one Adonaset. A sense of humor helps get through the hurt.

From webMD website:

Ginkgo Biloba
“Ginkgo shows promise in treating some of the neurologic problems associated with Alzheimer's”
“using the herb significantly increases memory, recall”
"Treating memory problems is one of the things that it is known for,"

Title: Re: Cluster Free For Five Months
Post by adonasetb on Jul 10^th, 2005, 3:27pm

There's a side benefit to taking the folic acid and vitamins that I failed to mention - when the CH would hit I'd take imitrex, OTC pain-killers like eating candy - didn't care about over-dosing because i figured i'd either get some relief or die - either way the pain would be gone and when you're being attacked nothing else matters but getting rid of the pain. Taking so many medications had some very serious side-effects... one that I hated the most was how it effected my love-life - got to the point where i was even considering viagra to help overcome the problem. Getting off all those meds has eliminated the need for viagra or any other products for male enhancement.

I don't know if anyone else has experienced the problem but getting off the pain killers has certainly helped me in that regard. And I didn't need the ginkgo biloba to help me to remember what i was missing.

Happy to report another pain free night - we ain't scientific but we ain't hurting either.

Adonaset

Title: Re: Cluster Free For Five Months
Post by stomper on Jul 10^th, 2005, 10:06pm

HEY NOW , ADON, WITH I, PAIN KICKERS WOULD JUST FLY OUT, WITH THE BIG SWING OF THE BEAST"S BAT!! SO NEVER TURNED THAT DIRECTION! SEEMS TREX HAS & AND WILL ALWAYS BE THE BEST PITCH THAT "WE" CAN ALWAYS THROW AT IT!! O.D. NEVER!!!! WE ALL KNOW THAT THE BEAST AT THE PLATE, WOULD JUST LOVE THAT. " WALK HIM" . NOT US,& YOU!! IT"S ALL ABOUT THE RIGHT SIGN, & THROWING IT !! HEY I HEAR YEA ABOUT THE LINE UP. BUT WHAT, ARE WE TO DO?? USING THE BEST PLAYERS , ALL THE TIME,TAKES IT'S TOLL ON THE WHOLE TEAM. RIGHT!! IF SOME HOW , WE CAN USE THOSE GUY'S ON "THE BENCH" THE RIGHT WAY, WITH GOOD MANAGING SKILLS, THEN WE JUST MIGHT WIN!! TALK BACK AT YOU LATER, K "TBAYL,K" KEEP YOURE HEAD UP! WE R ALL ON THE SAME TEAM!!!! PFDAN2USALL!!!!! JIMM

Title: Re: Cluster Free For Five Months
Post by BobG on Jul 11^th, 2005, 12:46pm

Jimm, We can hear you just fine. Please turn off the caps lock key.

Title: Re: Cluster Free For Five Months
Post by javi_spain on Jul 11^th, 2005, 12:55pm

Thanks a lot for the info, adonasetb.

I am going to put folic acid in my list of "unexpensive, legal and more-or-less-harmless things to use in my next cycle" next to the Kudzu and Melatonine.

Pain free wishes

Javi

Title: Re: Cluster Free For Five Months
Post by burnt-toast on Jul 11^th, 2005, 1:06pm

Congratulations - always encouraging to hear someone getting relief - Enjoy.

Tom

Title: Re: Cluster Free For Five Months
Post by stomper on Jul 11^th, 2005, 5:07pm

on 07/11/05 at 12:46:22, BobG wrote:

Jimm, We can hear you just fine. Please turn off the caps lock key.

sorry bout that, just that in the moment thing!! oh and by the way, the beast still seems to be at a crossing!! ?? yim pfdan2usall!!

Title: Re: Cluster Free For Five Months
Post by adonasetb on Jul 12^th, 2005, 12:04pm

Another pain free night - so one of two things has happened.... either the folic acid and vitamins are working or someone came in and switched heads with me. Since I looked the same when i shaved this morning I have to believe it's the folic acid and vitamins doing the trick.

Adonaset

Title: Re: Cluster Free For Five Months
Post by stomper on Jul 12^th, 2005, 4:40pm

right on,adon, could be the head change!! or the fa+v!!! mybe?? me, good hear too!! but then again , shaved yesderday too, 2day??? have nose ring!! what the??? ;;D tbayl,k pfdan2usall jimm

Title: Re: Cluster Free For Five Months
Post by brewcrew on Jul 12^th, 2005, 4:59pm

on 07/10/05 at 15:27:04, adonasetb wrote:

There's a side benefit to taking the folic acid and vitamins that I failed to mention - ...Taking so many medications had some very serious side-effects... one that I hated the most was how it effected my love-life - got to the point where i was even considering viagra to help overcome the problem. Getting off all those meds has eliminated the need for viagra or any other products for male enhancement.
Adonaset

And don't even think about taking Viagra when you've in cycle. It'll lead to one of the worst after-effect CH's you've ever had. I did it - once. Never again.

Title: Re: Cluster Free For Five Months
Post by Topical on Jul 12^th, 2005, 5:59pm

Folic acid over 1 MG is by prescription only. I am a long time user as a supplement to my Dilantin med. It's a supplement you want to be careful with and not over-do-it. One of the blood tests I take when I see my neuro is a folic acid level.

The the B-Complex vitamins I have include Folic acid. Check your labels.

Title: Re: Cluster Free For Five Months
Post by bnfreeman on Jul 14^th, 2005, 5:11pm

Glad to hear it works for some. I have been taking FA for months, after I had a miscarraige. It doesn't help the clusters. Too bad for me. I take 4 mgs a day, prescribed by a doc. Best wishes!

BF

Title: Re: Cluster Free For Five Months
Post by adonasetb on Jul 15^th, 2005, 7:34pm

BF - maybe this lends support to the notion that it's not the folic acid alone that's helping ... it may be the combination of the folic acid and the vitamins and minerals. Jimm is also taking the vitamins along with the FA and getting good results. I've been giving credit solely to the FA but it could definitely be the combination that works together. I doubt seriously if there's a "cure all" for CH - we've all tried different meds and some have had good results while others didn't notice any relief at all. What is important is for us to share with one another any remedies that seems to work for us - if they help even one other person then it's definitely worth the effort to post the information here.
I feel so blessed that i've not suffered from a single CH attack for over 5 months that i simply had to mention it . Thanks to everyone that responded - wishing everyone a pain-free day.

Adonaset

Title: Re: Cluster Free For Five Months
Post by burnt-toast on Jul 15^th, 2005, 8:02pm

This is starting to smell like a long swung sales pitch for vitamins are us. [smiley=twocents.gif]

Used to be a vitamin believer - didn't protect me from CH or prevent attacks when this nightmare took over. Keep the long list of suppliments - at least for me they're not worth squat.

Tom

Title: Re: Cluster Free For Five Months
Post by sandie99 on Jul 17^th, 2005, 4:18pm

Congrats!
I'm so happy to that you're PF!!! :)

Wishing you lots of more PF time,
Sanna

Title: Re: Cluster Free For Five Months
Post by stomper on Jul 23^rd, 2005, 4:00pm

heynow still doin the F.C.& the one a day thing, well still get some hits but the r less frequint and somtimes its like hey, did'nt get hit!! then i do at some point! but i think it might bee doin somthing!! cuz it still goes back to,, "MYBE IT WAS SMTHG I ATE" sooo o2 does smtms work, witch is nice if it does,but the hits r less harder to kill " like less trex,or less time" thought i let u know! pfdan2all jimm [smiley=hammer.gif]