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        New Message Board Archives >> Medications, Treatments, Therapies 2004 >> Why haven't you tried melatonin?
        
(Message started by: jflynn on Dec 29th, 2003, 5:10pm)
Title: Why haven't you tried melatonin?
Post by jflynn on Dec 29th, 2003, 5:10pm
I'm just curious why so many folks are reluctant to try it.  It works amazing well for a few of us, some folks had no relief.  But being so cheap, easy and harmless it seems like the logical first step.

If it works hooray, if not no big deal you're out five bucks and a trip to the supermarket.  Five bucks is nothing compared to what many of us have spent hunting the devil.
Title: Re: Why haven't you tried melatonin?
Post by ave on Dec 29th, 2003, 5:42pm
Any thoughts on the interaction of melatonin and any meds one might be on?
Title: Re: Why haven't you tried melatonin?
Post by Nimbus on Dec 29th, 2003, 5:47pm
Melatonine....  isn't it a restricted med in Canada?  This ring a bell to me but nothing more.  Sorry.
Title: Re: Why haven't you tried melatonin?
Post by thomas on Dec 29th, 2003, 5:51pm

on 12/29/03 at 17:42:49, ave wrote:
Any thoughts on the interaction of melatonin and any meds one might be on?

Yeah, plenty of thoughts on this, melatonin is produced by the body, if you're not making any, and you take some, I don't see how there can be a negative reaction.  Jflynn I'm with you bro.
Title: Re: Why haven't you tried melatonin?
Post by BlueMeanie on Dec 29th, 2003, 6:31pm
Tried it for 6 days. Increased dose each day up to 8mg. Didn't work for me. Still got woke by the Beast each night.
Title: Re: Why haven't you tried melatonin?
Post by forgetfulnot on Dec 29th, 2003, 6:51pm
I tried it over a three month period, three or four years ago. I noticed no effect in any way regarding chronic cluster headache, episodics may differ. I used from 3-9 mg nightly during the trial.


Lee……..
Title: Re: Why haven't you tried melatonin?
Post by Giovanni on Dec 29th, 2003, 7:04pm
It worked for me!! Ended my cycle one month early--no headaches after taking it @9mg.

People here should at least give it a try.  You might be one of the lucky ones.

;;D
Title: Re: Why haven't you tried melatonin?
Post by Giovanni on Dec 29th, 2003, 7:14pm
I forgot to mention this one, 5-HTP.  I have not personally tried it, but might be worth investigating.  Some medications can not be taken with 5-HTP like imitrex.  I have been told that dosages range from 100-300 mg per day for clusterheads.  Anybody with any results on this?

http://headaches.about.com/cs/alternative/a/5htp.htm

[smiley=huh.gif]
Title: Re: Why haven't you tried melatonin?
Post by t_h_b on Dec 29th, 2003, 9:11pm
I agree that every clusterhead should at least TRY melatonin, beginning with a small dose for several days and working up to large doses.  It has worked for me for a couple of months now.  I'm chronic and take 0.5 mg at bedtime, started with 0.3mg with noticeable improvement.  It has changed my daily existence.  

It is not available in a lot of countries because it is a hormone.  
Canada may be one of them.  In the U.S., melatonin is considered a food supplement and is not regulated by the FDA because it naturally occurs in some plants.  Most of the melatonin sold here is synthesized in Switzerland and is very pure.  

The large doses that people sometimes take are hundreds of times what your body produces naturally.  When I tried 3mg sustained release it interfered with my sleep and caused non-cluster headaches.

Every clusterhead is different so melatonin, like all the other treatments, doesn't work for everyone and there appears to be no standard effective dose but it's cheap and easy to try.
Title: Re: Why haven't you tried melatonin?
Post by jflynn on Dec 30th, 2003, 9:52am
I am reminded of Leo Festinger's studies on cognitave dissonance.  My theory is that since so many of us have expended great time, money and effort in trying to manage the clusters we are conditioned to believe that such a simple approach is not possible.  We've seen doctors, specialists and yet more specialists, and live with the clinging hope that if we just got a smart enough specialist then the pain would end.

When it's sugegsted that a $5 bottle of OTC remedy can work our brains respond "bzzt! overload, does not compute!" and we do our best to refute it. We think to ourselves "the last approach I tried didn't work and it cost me a fortune and that guy was a Johns-Hopkins doctor, no way these stupid vitamins would help."

In another thread a member is weighing a 1.5 year trial of lithium or gamma knife surgery yet won't even acknowledge melatonin.  Unfortunate.
Title: Re: Why haven't you tried melatonin?
Post by thomas on Dec 30th, 2003, 10:01am
I have convinced a doc to try the melatonin, ssri, magnesium therapy on patients who have no results from the pred. verap. taper.  WOW!! a doc who will listen, he's not even my doc..
Title: Re: Why haven't you tried melatonin?
Post by ave on Dec 30th, 2003, 1:55pm
The fact that melatonin is made in the body should not, in itself,  make it completely all right to try it, Thomas.

Oestrogen is made in the body as well, but taking suplements is still a very tricky business with partly unknown repercussions.

What I want to know, just as I needed to know before I succesfully tried shrooms, was: is there any interaction with any meds people might be on?

-

That aside, I am  not too happy with  your judgement on people who come here.
You state they do not try melatonin.
You also state they are dly  too much conditioned to trust something cheap and simple


How do you, personally, know that people who are still here looking for help, haven't tried it?
How do you, personally, know that all the people that haven't tried it, are too condioned to try anything else?

As long as you do not know, don''t judge, please.
Title: Re: Why haven't you tried melatonin?
Post by thomas on Dec 30th, 2003, 2:43pm
In answer to your question.  I have had absolutely no negative reactions from other meds while on melatonin, as far as judging people, I'm sorry if you think I have.  I have not tried to.  I didn't start this thread.  But I have had tremendous success with melatonin.  Is it going to work next time?  I don't know.  If it doesn't I will try the shrooms.  I have tried so many different preventives with no success at all, I finally find something that actually WORKS{(for me) disclaimer- if you notice I use that a lot}, and I'm so God damned excited about it I want to share it with everyone else, excuse me for being overexuberant.
Title: Re: Why haven't you tried melatonin?
Post by Giovanni on Dec 30th, 2003, 2:48pm
Ave,

I did a search on the Internet for negative drug reactions to other medication while taking melatonin  and I found the following:

·  Check with your doctor before using melatonin along with a conventional antidepressant. Adverse drug reactions may result.
·  Excessive drowsiness may occur if the hormone is taken along with sedatives, sedating antihistamines, muscle relaxants and narcotic pain relievers.
·  Consult your doctor before considering melatonin if you take prescription corticosteroids. An adverse reaction is likely.

Additional information:
Melatonin is intimately involved in synchronizing the body's hormone secretions, setting the brain's internal clock and generating circadian rhythms (daily biorhythms). These patterns govern the release of hormones that regulate such body functions as reproduction and digestion. Significantly, melatonin also works around the clock to signal the body, which is sensitive to light cues, when to sleep and when to awaken. Typically, the pineal gland begins excreting melatonin around dusk, rapidly increases its output between 2 A.M. and 4 A.M., and then decreases its output again as daylight appears.
Most melatonin supplements on the market are pure synthetic versions of the hormone, and are practically identical to that which humans produce naturally. Although sold as a dietary supplement in the United States, melatonin is available by prescription only in France and a number of other countries.

Web MD:
The use of melatonin derived from animal pineal tissue may carry the risk of contamination or the means of transmitting viral material. The synthetic form of melatonin does not carry this risk.
Melatonin has not been evaluated by the FDA for safety, effectiveness, or purity. All potential risks and / or advantages of melatonin may not be known. Additionally, there are no regulated manufacturing standards in place for these compounds. There have been instances where herbal / health supplements have been sold which were contaminated with toxic metals or other drugs. Herbal / health supplements should be purchased from a reliable source to minimize the risk of contamination.

I personally did not have any adverse reactions to this medication.  I slept like a rock and it ended my last cycle almost immediately.  I remained on it for about 2 months after the cycle then gradually removed myself from it.  
Title: Re: Why haven't you tried melatonin?
Post by jflynn on Dec 30th, 2003, 3:40pm
I don't know, ave, that's why I'm asking here.

When people do not respond to informal surveys, and in other posts discuss far more invasive and intense treatments and do not reply or acknowledge my suggestions to at least consider melatonin ... I have to start making theories.  Cognitave dissonance seems to fit the scenario but I could be way off.

Regardless it's clear many folks here have not tried melatonin.  I wonder why.
Title: Re: Why haven't you tried melatonin?
Post by notseinfeld on Dec 30th, 2003, 6:12pm
flynn---

I gave melatonin a try about a year ago with no success but I vaguely recall ending it quickly as I was in a pretty depressed mood thinking that 'nothing' would help. Still have the bottle and will try again starting tonight or tomorrow.

Please post dosage and increments that worked for you and I'll mimic and evaluate along the path. A rought estimate for efficacy would help as well. A week, two, etc?

Preesh--nots
Title: Re: Why haven't you tried melatonin?
Post by ave on Dec 30th, 2003, 6:31pm
Thomas, I AM sorry, I skipped a sentence in my post. I did not mean that YOU were judgemental.

Flyn, it is not very neat, asking a question and filling in the answer while you are asking it.

There are a great many motivations. reasons and causes. People are inenough pain, they will try most things. Maybe they just don't know. Look at the number of postings it took to get shrooms accepted.

Do you know how many people disappear from the board without a trace? Do you know why? You don't, exactly  because they disappear.
Do you know how many people have given Mela a try, and had to move on to somehing else? Many people just don't  reply to questionnaires. I don't, that's  one.

Then there is my question about Melatonin maybe clashing with meds in use... very important base for a decision.

Still waiting for that answer.
Title: Re: Why haven't you tried melatonin?
Post by 5-string on Dec 30th, 2003, 6:59pm
Stupid question here,but I'm asking it anyway...
Has anyone ever tried Melatonin before a cycle?
..just curious. I've never tried it. Should I try it late spring since mine seem to come around in mid summer now?
...Mark..
Title: Re: Why haven't you tried melatonin?
Post by t_h_b on Dec 30th, 2003, 7:40pm
When melatonin worked for me the very first time I took it, and kept working, I personally found it a little hard to believe.  After all, that bottle of melatonin that I got at the dollar store had been in my drawer unopened for at least a  year.  Somehow I had overlooked melatonin when looking at CH meds here and elsewhere.

Before I started taking the melatonin I had made an appointment with a neurologist/headache specialist for the first time.  (Hadn't had insurance since having CH and was being treated by an MD friend.)  When I finally talked  to the neurologist, I told him that I still couldn't decide whether it was the melatonin or just a coincidence that my chronic CH's of three years had decided to basically evaporate on the first night I took the melatonin.  Maybe he found that a little amusing (he did laugh a little) but he shook his head and said, "No,  it is NOT a coincidence.  You have found your own treatment."

So even when you have found something simple and used it and it works, it is hard to believe.  All of the pain and suffering that I endured for three years, and all it took to stop it was a little pill that cost 3 1/3 cents and was purchased at the dollar store.  It just isn't right and it just doesn't make sense.  Especially when so many things hadn't worked in the  past.  Still doesn't make sense to me, maybe it never will.  But CH don't make sense in the first place.  

I also must admit that when you are having CH it becomes the central issue in your life.  It uses up your energy.  Even though it is awful, it becomes a huge part of what you about, whether you like it or not.  As difficult as it is to admit, it's hard to give up part of yourself even if it's a part you don't like.  Amusing, when you consider how much effort has gone into getting rid of the CH.

And you never ever stop thinking that one day the melatonin might stop working....makes you thankful for every day.
Title: Re: Why haven't you tried melatonin?
Post by BlueMeanie on Dec 30th, 2003, 8:36pm

Quote:
When I finally talked  to the neurologist, I told him that I still couldn't decide whether it was the melatonin or just a coincidence that my chronic CH's of three years had decided to basically evaporate on the first night I took the melatonin.


You must be the luckiest person on earth. Not saying if the melatonin worked or not. I'll leave it at that.
Title: Re: Why haven't you tried melatonin?
Post by Giovanni on Dec 31st, 2003, 9:43am
"Stupid question here,but I'm asking it anyway...
Has anyone ever tried Melatonin before a cycle?
..just curious. I've never tried it. Should I try it late spring since mine seem to come around in mid summer now?  
...Mark.. "

No, I started mine about 3/4 the way through a very difficult cycle.  The cycle ended immediately.  I do not know if it would have worked at the beginning/middle of the cycle or before the cycle ever began.  

To avoid the cyle altogether this is my best hope:
www.clusterbusters.com

;;D
Title: Re: Why haven't you tried melatonin?
Post by jflynn on Jan 2nd, 2004, 10:14am
Someone asked for suggested dosage and timeframe?

The 2 studies I read both used 10mg once a day before bedtime as I recall.  Pills are available locally at 3mg each so I used 3mg day one, 6mg day two and 9mg from then on.  I had relief in half a week and I now take only 3mg each day at about 9pm.

As with anything medical you should research it yourself first.  Do a search for the various melatonin thread shere.
Title: Re: Why haven't you tried melatonin?
Post by jflynn on Jan 2nd, 2004, 10:15am

on 12/30/03 at 18:31:07, ave wrote:
Still waiting for that answer.


I think it's best that I refrain from replying directly to any more of your posts.  I hope you understand.
Title: Re: Why haven't you tried melatonin?
Post by notseinfeld on Jan 2nd, 2004, 10:41am
Voila--

On melatonin therapy 2 nights now and both nights have been okay. (did have a nasty attack during the day though)

Started Day1 6mg.  No attack that night and more importantly the following morning when I usually get hit.

Day2- 6 mg same success.

Moving the 9mg this evening and will ride this for several days to see what happens.

Guess I'll report back here for anyone who's watching.
Title: Re: Why haven't you tried melatonin?
Post by thomas on Jan 2nd, 2004, 11:31am

on 01/02/04 at 10:41:12, notseinfeld wrote:
Voila--

On melatonin therapy 2 nights now and both nights have been okay. (did have a nasty attack during the day though)


I was still getting hit during the day, when I started melatonin, that's when I added Magnesium and Prosac, that took care of the daytime hits.
Title: Re: Why haven't you tried melatonin?
Post by 9erfan on Jan 2nd, 2004, 3:33pm
Ok, I bought some Melatonin last night at the drug store but I made the mistake of getting the 1mg bottle instead of the 3mg but I guess that's not a big deal.

My question is this...for those of you taking 9 or 10 mg per night, do you have trouble waking up in the morning?  I mean the bottle says it's a nightime sleep aid and if I want to eventually take 9mg, then I would be taking 9 times the recommended dosage??

Thanks,
Virginia
Title: Re: Why haven't you tried melatonin?
Post by Giovanni on Jan 2nd, 2004, 4:12pm
Start off with a lower dose if you wish.  I believe that some of the people above have used 5 or 6 with good results.  I had started off with 9 mg with great results.  Hope it works for you.
Title: Re: Why haven't you tried melatonin?
Post by Giovanni on Jan 2nd, 2004, 4:23pm
Virginia,

Here's some information on dosage:

A drop in nocturnal melatonin has been linked with cluster headaches, and melatonin supplementation has shown a low but significant preventive capacity for cluster headaches. In a blinded trial, 10mg of melatonin was given to 10 subjects and a placebo was given to 10 controls for 14 days. 5 out of 10 treated patients reported a decline in attack frequency after 3-5 days of treatment and then experienced no further attacks until melatonin was discontinued. The melatonin was taken in a single evening dose. [Cephalalgia. 1996;16: pp.494-496]
Title: Re: Why haven't you tried melatonin?
Post by CJohnson on Jan 2nd, 2004, 5:17pm
 Melatonin suppresses corticosteroid activity. It seems that indoles, like psilocin and melatonin, don't play together with corticosteroids, like prednisone. Melatonin could interfere with fertility. It is also contraindicated during pregnancy and lactation.

Melatonin is a hormone that is produced naturally in the body. Supplementation of naturally produced hormones, even one as benign as melatonin should be carefully monitered. Here is a parallel example:
Testosterone is a naturally produced hormone. Bodybuilders supplement with anabolic steroids (quite different from corticosteroids) which are literally synthetic testosterone. Any bodybuilder who uses steroids will tell you that steroids absolutely must be cycled. That is, you take them for a few weeks and then you stop taking them for a few weeks. The reason is by putting synthetic testosterone into your body, you stop the natural production of testosterone - to disastrous effect. Once the bodybuilder ends his steroid cycle, he must start a post cycle-cycle of some other substance to counter the effects of the lack of testosterone production.
Melatonin supplements are, in most cases, man made melatonin. I don't know what happens to your natural production of melatonin - which is already screwed up if you have clusters - by supplementing with man made melatonin, but it would behoove you to find out if you are considering this approach.

http://www.wellfx.com/InfoBase/vitamin_melatonin_.htm

That said, I intend to research the matter and am considering melatonin for myself because of the many positive effects it can have, cluster and non cluster related. Also, many bodybuilders suggest melatonin to combat the sleeplessness associated with some kinds of testosterone supplements

PFDANs
-Curtis
Title: Re: Why haven't you tried melatonin?
Post by t_h_b on Jan 2nd, 2004, 7:06pm
9erfan, why don't you try take 0.5mg (half of a 1mg tab) to start?  That's still a lot more melatonin than your body makes and that dose has all but eliminated my CH.
Title: Re: Why haven't you tried melatonin?
Post by jflynn on Jan 5th, 2004, 10:06am
9mg made it tough to wake in the morning for me.  I now take 3mg and no more CH at all.  However, the studies all used 10mg as dose.  Everybody is different, experiment for best results.  I wouldn't go above 10mg without asking a doctor or otherwise knowing it was advisable.
Title: Re: Why haven't you tried melatonin?
Post by 9erfan on Jan 6th, 2004, 3:10pm
Well, I think this stuff is upsetting my sleep cycle instead of helping it.

First night: 1mg
2nd night: 2mg
3rd night: 2mg
4th night: 5 mg

I'm sleeping worse than I was before, waking up every hour or so with shadows.  What's up with that???

Virginia
Title: Re: Why haven't you tried melatonin?
Post by ave on Jan 6th, 2004, 4:56pm
Flyn, I don't see why you should not react to any posts of mine. Afraid you'd lose control and start reviling me?

Well, I'll take the risk.

You have a theory, that


Quote:
since so many of us have expended great time, money and effort in trying to manage the clusters we are conditioned to believe that such a simple approach is not possible.
.

and:


Quote:
When it's sugegsted that a $5 bottle of OTC remedy can work our brains respond "bzzt! overload, does not compute!" and we do our best to refute it. We think to ourselves "the last approach I tried didn't work and it cost me a fortune and that guy was a Johns-Hopkins doctor, no way these stupid vitamins would help."

In another thread a member is weighing a 1.5 year trial of lithium or gamma knife surgery yet won't even acknowledge melatonin.  Unfortunate


Very unfortunate, yes, for the sufferer to have so much pain as to envisage the gamma knife.
Also a very harsh judgment on your part. For you have been incredibly lucky. You found something that works for you.
And now you cannot understand why others don't try your solution at once. And you impute all sorts of twisted reasonings to clusterheads.

I think it is all much simpler.  I gave a number of very practical reasons in my earlier post. Here are some more.

It is, you see, hard for a clusterhead to suddenly stop  medication that may not be ideal, but at least does something to relieve the pain or severity of the attacks.
Hence my question, that seems to have taken you the wrong way: (Nixon knows why) "does melatonin interfere or clash with any of the usual clustermeds?"

For if so, I can see very few people who would be willing to change over in mid-cycle (Jos is a rare example and it took great determination and heroisme on his side to give up his meds and wait for the shrooms to "take" ).
Chronics don't have much down time, in which to get off meds and on melatonin; they would be even less willing to stop meds that gave relief.

But if one can keep on taking one's meds, there's another dilemma. When to stop taking the regular meds?

An example with  the meds I know. Verapamil takes some time to build down.  Suppose you are all medfree, just supported by O2, that does not always catch every attack, especially the night ones... You are relying totally on melatonin.
And what if it does not work? Some 10 days in hell getting Verapamil to kick in again. Might put people off something powerful!

These might be some of the reasons, that people don't flock to the melatonin counter.

I cannot judge the efficacity of melatonin. I just question your stance on why people might not at once adopt your proposed solution.

And I am still waiting for an answer, by anyone who knows (if you don't know just say so): can or  will melatonin clash with the usual cluster meds?
Title: Re: Why haven't you tried melatonin?
Post by CJohnson on Jan 6th, 2004, 5:03pm

on 01/02/04 at 17:17:58, CJohnson wrote:
 Melatonin suppresses corticosteroid activity. It seems that indoles, like psilocin and melatonin, don't play together with corticosteroids, like prednisone. Melatonin could interfere with fertility. It is also contraindicated during pregnancy and lactation.


Inderal inhibits melatonin synthesis.

PFDANs
-Curtis
Title: Re: Why haven't you tried melatonin?
Post by ave on Jan 6th, 2004, 6:37pm
Thanks, Curtis.
's what I wanted to know.

pfd&n's
Title: Re: Why haven't you tried melatonin?
Post by henzey on Jan 9th, 2004, 4:29pm
Hey, it is my first time joining this message thread.  It appears that there are several of us women CHeads from another message thread who have actually had negative reactions to melatonin--and we all also happen to have irregular menstual cycles.  Would be interesting to see if a really good study of this comparing men versus women of various ages!  I was sure hoping the melatonin would help me but it just gave me a almost a daylong shadow of varying intensity until it finally wore off about 5 pm the next day.  Even a low dosage (less than 1 mg) did this.  Any ideas as to why?
Title: Re: Why haven't you tried melatonin?
Post by ave on Jan 9th, 2004, 4:49pm
One cause springs to mind; with clusters it is often that what helps one clusterhead turns out to be a trigger for the other

Like,  heat or cold, alcohol, excercise...
getting pregnant, having a baby, having an operation...
Title: Re: Why haven't you tried melatonin?
Post by henzey on Jan 9th, 2004, 4:56pm
Yep....I agree.  Since this happened to me four consecutive nights, yet disappeared when I stopped taking the melatonin, it appears to be at least something of a trigger for me.  Would be curious to know if any MEN had similar negative experiences to melatonin that persisted.
Title: Re: Why haven't you tried melatonin?
Post by Giovanni on Jan 9th, 2004, 5:05pm
It appears that approximately an equal number of people have had negative experiences with melatonin as people who have benefited from it.

That is what is so great about this board in that people can post their experiences both positive and negative.

Everyone who takes ANY medication/herbs/hormones should do a search on drug reactions and possible side effects before taking it.

As for me, I have had terrific results from this medication with zero side effects and consider it safer than the laundry list of drugs now offered by the medical community.
Title: Re: Why haven't you tried melatonin?
Post by henzey on Jan 9th, 2004, 5:10pm
Good for you!  Wish it had worked for me as I have to drink so much water with Topamax that I am floating away ;;D but it works so I am NOT complaining at all. Hope I find a safer alternative...
Title: Re: Why haven't you tried melatonin?
Post by eyes_afire on Jan 9th, 2004, 6:50pm
Hey Ave (and anyone else who is curious), here's some info I ran into the other day.  I actually posted it on another thread so perhaps you've seen it already.  Read it all, it's good info for anyone considering melatonin.  Unfortunately, melatonin didn't do anything good for me.

http://sleepdisorders.about.com/cs/melatonin/a/melatonin.htm

I hope the info is helpful,

--- Steve


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