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Cluster Headache Help and Support >> Medications,  Treatments,  Therapies >> PLEASE HELP!
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Message started by echogirl on Aug 23rd, 2011 at 10:40am

Title: PLEASE HELP!
Post by echogirl on Aug 23rd, 2011 at 10:40am
I was wondering if anyone has had any problems with using melatonin as a preventative. I typically get ch's in June, maybe part of July. However I started taking 12mg of melatonin before bed sometime in May, as well as using the HWBR to abort any that tried to sneak in. I must say, I had great success. I had NO nighttime attacks, and the ones I had during the day were all successfully treated with the HBWR. So June and July was such a sigh of relief. However, here we are in August and they are starting up. I haven't completely com off the melatonin yet. Well, I tried to taper off but started having shadows after a few days. So I went back up to 12 mg a night. I was hoping that would take care of the beast, but now it's back, and with a vengance. I did have one this morning that was treated successfully with HBWR, but yesterday I didn't have the same success story. I had one that was so bad and lasted so long, I wound I going to the ER for o2 (which by the way workd, but I've been having trouble getting a script) Anyways, does anyone know if the melatonin can eventually make the ch's worse? I am at a crossroads right now. Any feedback would be great. Should I stick with the melatonin and wait it out, or taper off? I'm not sure which one would be more detramental right now. Please help!
:-[

Title: Re: PLEASE HELP!
Post by vietvet2tours on Aug 23rd, 2011 at 11:44am
Melatonin is a sleep aid not a prevent,  as far as busting ya don't eat them as an abortive.  You must detox first and then bust.  It takes awhile.

                Potter

Title: Re: PLEASE HELP!
Post by echogirl on Aug 23rd, 2011 at 12:43pm
I have heard of people using melatonin as an abortive. id I misunderstand somehow. And as far as detoxinf beforing busting, do you mean I have to come off the melatonin? I'm not understanding. I take no other meds for CH's. What apparoach do you suggest I take? I'm open to ideas. I just want relief. I thought I had it since I skipped right over a usual cycle with no lasting attacks. But now I start what I hope isn't an all new cycle. I hope they are just a few strays bidding me farewell for the summer. It's hard to tell since I've never gotten them in August. They have always been predictable up until this summer. So now I'm lost. I just need some direction. I will continue my own search, but any suggestions that anyone else has will be greatly appreciated. I will NOT let them get the best of me! I will not Cope with them, I wil LIVE through them!

Title: Re: PLEASE HELP!
Post by echogirl on Aug 23rd, 2011 at 12:44pm
I'm sorry, I meant to say that I heard of people using melatonin as a preventative, not an abortive. Sorry!

Title: Re: PLEASE HELP!
Post by Brew on Aug 23rd, 2011 at 5:01pm
Could just be semantic differences here. Yes, for some melatonin will "prevent" nighttime attacks. The mechanism by which it does so, however, is quite different than the other, traditional preventatives. Somehow it seems to bridge the transition into REM sleep, which is when most CH'ers get hit at night - when we're making that transition. It usually occurs around 90 minutes after we fall asleep.

No other preventative works this way. Seems your both talking about the same thing, but using slightly different terminology.

Title: Re: PLEASE HELP!
Post by NotH20 on Aug 24th, 2011 at 9:12am
Echo,

I never thought that Melatonin was an abortive, but more for aid in the REM process as well.  This is the first time I've personally tried it myself in 31 years and once I ramped up to 9mgs at night (which was on Saturday), I have not had a nighttime attack   ;D

Could be luck, could be the Melatonin, could also be the other meds that I'm on (Verap/Prednisone).  This cycle for me is totally different as well as I never get hit during the summer months.  I'm a Spring and Fall sorta gal...so it could also be this off cycle for me that makes me feel the Melatonin is working.

As for your O2, just wondering why your docs won't give you a script?

Mia

Title: Re: PLEASE HELP!
Post by Sandy_C on Aug 24th, 2011 at 10:32am
Echo,

Neither Melatonin nor HWBR are abortives.  Both are considered to be a preventative.  Melatonin does help prevent nighttime hits, and proper use of HWBR can help to prevent entire cycles, if used properly.  It is not to be taken to abort every hit you get.

For detailed information on HWBR and detoxing from other medications, please go to clusterbusters.com and read thoroughly. 

Sandy

Title: Re: PLEASE HELP!
Post by Ken_DFA on Aug 24th, 2011 at 2:47pm
Echogirl,

I've never experienced an increase in hit frequency nor severity after beginning nightly melatonin doses (I only use 6mg and its 95% effective for hit-free sleep).  One difference though is that I never start nightly melatonin usage until I am for sure in a cycle. 
   
There has also been a lot of discussion around here regarding the uneven quality of melatonin out there on the market.  If you have recently switched brands, that might explain your difficulties.  I personally use the 3mg sublingual stuff from wholehealth.com and it works awesome.
   
-Ken

Title: Re: PLEASE HELP!
Post by Guiseppi on Aug 24th, 2011 at 11:08pm
I did a melatonin unofficial survey a year or so back. This is the formula that seemed to have the best track record:

n-Acetyl-5-Methoxytryptamine.

There are apparently some synthetic versions that don't work as well for us. Worth a read on the side label to make sure you get what's worked for others.

Joe

Title: Re: PLEASE HELP!
Post by Pfunk on Aug 25th, 2011 at 12:41am
That's some pretty helpful info there Joe. I've been taking some that I got from the local health food store that has not so much as made me think about sleep, even after 20 mg. I'm gonna go read the label now.

Pfunk 8-)

Title: Re: PLEASE HELP!
Post by NotH20 on Aug 25th, 2011 at 10:31am
Quick ? for those Melatonin users....this is the first time I've take this - got up to 9 mgs on Saturday and have been PF since Sunday afternoon. Not sure if it's the higher dosage or the beast.  Talked to neuro - if I start getting hit again, he wants me to increase Verap again and possibly take Melatonin during the day - any thoughts on that during the day other than maybe having to take a nap at my desk?   ;)

Mia

Title: Re: PLEASE HELP!
Post by Brew on Aug 25th, 2011 at 11:03am
I would never take melatonin during the day. It is supposed to aid our body clock during the time when the sun is not in the sky.

Never.

Title: Re: PLEASE HELP!
Post by NotH20 on Aug 25th, 2011 at 11:49am
Thanks Brew.  I was really hoping for a nap at my desk LOL

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