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        Cluster Headache Help and Support >> Medications, Treatments, Therapies >> Melatonin
        
(Message started by: Melvyn on Jun 23^rd, 2006, 11:26am)

Title: Melatonin
Post by Melvyn on Jun 23^rd, 2006, 11:26am

After reading various treatment posts and the Todd D Rozen paper I managed to get some Melatonin. It's banned here in the UK.

Had tried Taurine and 5HTL previously with no improvement.

Started on the recommended 9mgs per day last Friday and by Tuesday noticed a drop in intensity and frequency down to 1 CH per day. Stopped taking Pizotifen (prescribed by my GP) last Tuesday and by Wednesday the intensity of my one per day was down so much I could see through the attack( lasted about 40 mins ) without taking an abortive.

Thursday the same although the attack lasted only about 20 minutes. After the attack on Thursday I had a couple of beers - would usually trigger a 9 or 10 but no reaction.

Today, Friday, have had my attack (very mild and lasted only about 10 minutes).

I know it's early days but I can't help being hopeful and for once optimistic.

Still getting the odd twinge and mild shadow but nothing to write home about

I wouldn't have heard of Melatonin if it wasn't for this site and I know it doesn't work for everybody and that my CH may come back at a greater intensity so I am not taking anything for granted. Just thanking God for the current relief.

Title: Re: Melatonin
Post by LeLimey on Jun 23^rd, 2006, 1:08pm

Melvyn funnily enough Professor Goadsby is recommending it to alot of sufferers now. He can't prescribe it but he suggests buying it online. I wouldn't be at all surprised if, depending on how his patients get on, we see a trial of it here at some point (uk) with a view to getting it licensed for CH. Allegedly its a European ban not a UK one but I don't know about that.. either way if it ends up available its all good.
It never fails to amaze me how some drugs are legal in one country and not the next.. We can buy paracetamol and solpadeine (vicodin) OTC and paracetamol isn't even available in the US on prescription! ::)

Title: Re: Melatonin
Post by Melvyn on Jun 23^rd, 2006, 2:56pm

Hi Lelimey (is it Helen?)

you are right it was a EEC directive which forced Melatonin, together with a lot of other 'health supplements', to be banned. I got mine from a site in the US.

Had another beer tonight and I'm still feeling fine - want to go out and jump for joy but being sensibly cautious and aprehensive.

Title: Re: Melatonin
Post by ShaneM on Jun 23^rd, 2006, 5:01pm

Hello All,
I too am being cautiously optimistic. I have been taking 9 mg of Melatonin 30 min before bed for only three days. The CHA were waking me 2 times during the night which I would abort with Imitrex, followed by shadows and possible another attack during the day. This happened for the first two nights of using the Melatonin. Last night I woke once as normal to find no HA and later there was a mild attack (maybe KIP2) for 20 min or so but was able to return to sleep. Today I have only had very mild shadows that I fought off with a quick cup of strong coffee. I was excited enough to let the Doc and the RX know. Not ready to risk the beer yet. I’ll post more about my progress with it. Hope the best for the rest…

Title: Re: Melatonin
Post by marlinsfan on Jun 23^rd, 2006, 5:07pm

2 more believers! Yes!

Title: Re: Melatonin
Post by Melvyn on Jun 23^rd, 2006, 5:17pm

Hi Marlinsfan,

am I a believer? I'm on my third beer and no CH!!

Just thought I should mention - it's 10.20 p.m. here in the UK - I don't usually drink during the daytime.

Title: Re: Melatonin
Post by marlinsfan on Jun 23^rd, 2006, 6:54pm

If you take melatonin again tonight, then yes, you're a believer......

It's kept me sane....

Title: Re: Melatonin
Post by LeLimey on Jun 23^rd, 2006, 8:02pm

Hi Melvin sorry I didn't answer sooner but I've been up to no good! ;)
You're right, I am Helen (nice to meet you!) and I'm chuffed to bits for you with the beers, I've been hitting the brandy sours this evening so any typo's are down to mr napoleon.. ::)
I hope it continues forever for you.. let us know how your'e getting on okay? Its such a shame when people don't share their good stories because its those that keep everyone else going.
Fingers crossed for you
Helen

Title: Re: Melatonin
Post by FramCire on Jun 24^th, 2006, 12:29am

I use melatonin (with my verapomil) and since I started the melatonin (9mg), I have slept through the night and while I still get HAs, they are USUALLY much lighter and shorter. I haven't woke up because of a CH since.

That paper saved me too. I know it wont work for everyone but here in the US it is cheap and works for me!

Title: Re: Melatonin
Post by ShaneM on Jun 24^th, 2006, 8:15am

So - the mel is workin well. Last night I woke at normal CH time again but with no HA. wierd. but good. I went right back to slept. This morning I have a light shadow, maybe a KIP1. Love the results, thanks everyone for the tip. One question though, has it seemed to extend anyone's episodic cycle? If I feel the cycle is over should I stop using it (maybe taper by 3 mg a week or something?).

Thanks

Title: Re: Melatonin
Post by floridian on Jun 24^th, 2006, 8:36am

I haven't heard of it extending a cycle. Melatonin production is abnormal in clusterheads year round - even episodics who are not in cycle.

Title: Re: Melatonin
Post by Melvyn on Jun 25^th, 2006, 3:24pm

Hi Helen & the rest of you guys,

my great passion is horseriding and as I'm sel-employed I get to ride just about everyday. My daily attacks usually occur in the afternoon, which puts a damper on everything. In the morning I'm out with my horse and sometimes can't help but think about what the afternoon will hold.

Melatonin has changed all of that - I'm still taking 9mgs at night and no other medication - think it is worth mentioning that as I've read other posts which pointed out that the melatonin worked better when taken on its own.

Still have a very mild afternoon attack - maybe kip 2 - for ten minutes or so - one day for only a couple of minutes - watched England beat Ecquador this evening and enjoyed 3 beers whilst watching. Not into brandy sours Helen but might just try a shot of my Reme Martin Premier Crue - which only comes out on special ocassions! or the Glenmorange or even both!!! Monday is the day when my horse has a rest so I can get up late - just the tack to clean.

Helen what is 'no good ' and how many brandies do you have to have first?

Remember Brandy makes you randy and whisky makes you frisky!!!

Title: Re: Melatonin
Post by LeLimey on Jun 25^th, 2006, 4:39pm

I'm really pleased to hear the melatonin is working so well for you, do you mind if I repeat your success to others on OUCH UK who are thinking of trying it?
As for brandy.. I don't like it very much at all but brandy sours are a cocktail I picked up in Cyprus and love because they don't taste of brandy! (THere is logic in there, if you look long enough you'll convince yourself you found it!)
I watched the match this afternoon by default, I was conned and I am NOT a happy Helen I can tell you! As for what "no good" is.. believe me, you do NOT want to know! LOL I haven't heard that little booze ditty in years, don't forget the gin and wine versions too (both true I should add!)

Title: Re: Melatonin
Post by Melvyn on Jun 26^th, 2006, 5:16am

Hi Helen,

no probs about telling others about my success - that's what this forum is all about. By the way I use the straightforward Melatonin, not the slow release form.

Gin makes you thin and wine makes you fine?

I'm off to replenish both!!

Title: Re: Melatonin
Post by Melvyn on Jun 26^th, 2006, 5:21am

ShaneM,

how's it going with You? Still cautiously optimistic?

Title: Re: Melatonin
Post by Melvyn on Jun 26^th, 2006, 5:26am

Helen,

Another boozy ditty or two or three:

'He is not drunk who from the floor
can raise his glass and ask for more
but drunk is he who prostrate lies
without the power to drink or rise'

'When you feel that the bottom is about to drop out of your world
Drink real ale and feel the world drop out of your bottom'

'I am not an alchoholic I am a drunk!!
alchoholics go to meetings'

Title: Re: Melatonin
Post by ShaneM on Jun 26^th, 2006, 9:10am

Hey there Melvyn,
I'm glad your havin such a good time. LOL [smiley=laugh.gif]!! I still think that the Melatonin is having an effect but the last two nights the beast came back. When I say its having an effect I mean that the HA is on schedule 1 am exactly. I am not sure of the daytime shadows, and will pay more attention throughout today.

Thanks,

Shane

Title: Re: Melatonin
Post by Melvyn on Jun 26^th, 2006, 10:02am

Hi Shane,

sorry to hear your still having some pain. I get shadows and minor (kip 1/2) hits but I can get through them without any probs. Don't get any hits during the night which is a blessing. A good night's sleep leaves you able to cope with most things.

Best of luck and keep us updated!

Title: Re: Melatonin
Post by ShaneM on Jun 27^th, 2006, 9:22pm

Hey Guys,
I am goin to the doc in the morning, but what do you think of adding 3 more mg of Melatonin to the nightly regimine? That would bring it up to 12mg. I have read hear and on some other pharm sites that that is not unusual.

Shane

Title: Re: Melatonin
Post by Garys_Girl on Jun 27^th, 2006, 10:53pm

Melatonin certainly helps hubby get to sleep. It hasn't stopped the attacks (or seemed to have any impact on lessening the number or frequency).

BUT, hubby takes melatonin every night to help him get the little sleep he does. He takes 18mg now. Started with 9mg, and slowly worked up to 18mg. This seems to be the right level for him.

Good luck!

Laurie

Title: Re: Melatonin
Post by ShaneM on Jun 28^th, 2006, 8:58am

Laurie,
I just increased last night to 12mg. After 2 days on 9mg I was PF for 2 nights then the beast came back at night. the difference was that the hits were timed exactly at 1 am and only 1 am. That is, no matter what time I went to bed. I hope for the best at 12mg, we shall see. How long did your husband take to get to 15mg?

Shane

Title: Re: Melatonin
Post by ShaneM on Jun 28^th, 2006, 8:59am

I mean 18mg?

Title: Re: Melatonin
Post by Garys_Girl on Jun 29^th, 2006, 1:56pm

I thought he started with 6mg supplement, but I just remembered we purchased melatonin that came in 5mg supplements, the pharmacy didn't have the 3mg supplement (which is apparently the most common dose).

So hubby actually started at 5mg, but after 2 days we bumped it to 10mg. He was there for a couple of weeks, and then when it didn't seem to be helping him fall asleep, we bumped it to 15mg. We were there until the bottle ran out, and then we couldn't find the 5mg supplement, so we purchased the 3mg supplement. Because the 15mg wasn't reliably getting him to fall asleep, we just started him on 18mg. He's been at that level for almost a month, and it still seems to be working.

Of course he still sometimes wakes up 20 minutes after falling asleep, but that was his sleep pattern before CH. Usually it helps him get at least an hour or two of sleep, which without the melatonin he has a very difficult time getting even that.

Good luck!

Laurie

Title: Re: Melatonin
Post by Melvyn on Jun 29^th, 2006, 5:15pm

Just a thought - in the Todd Rozen paper he makes a point about trying a different brand of Melatonin if you are not finding relief.

He says:

'If one brand of commercial Melatonin does not work another should be tried as the true amount of Melatonin in various over-the counter brands varies widely'

Title: Re: Melatonin
Post by ShaneM on Jun 29^th, 2006, 8:11pm

Thanks guys,
I went to see doc. He had just returned from the National headache conferrence where Rosen and Goadsby both were. And as I found out he is a big fan of both. needless to say but that puts my mind at ease a little. He was all for me increasing the Mel even more if I wanted, in fact he wants me to do as Rozen suggest and use it first before Verap at the onset of the next cycle. He seems to believe in the methodology of that Rozen article. I did talk to he about starting another course of the Roids though and so far so good. I hate the damn things but I don't ever have to many side effects and generally tolerate them well. The shadows all but disappeared today and I would imagine that The cycle will break in a week or two. But, i'll be fat... what a trade off. I will be keeping up with the Melatonin though. It seems to keep the clock ticking smoothly at least.

Shane ;)