Hey everyone.  I know a bunch of you nighttimers are using melatonin.  Seemed promising from the reports I have read.  What has been your experience?  Has it helped and thus appropriate to keep recommending to people?

My friend the acupuncturist says that high doses of melatonin (like what you are taking) can cause depression.  True for anyone? 

How long have you been taking it, how often and what doses??

Let's use this thread as an informal survey for those who may wish to try it. :)

--Shaggy

Hi,

I've been taking 12 mg Melatonin since Feb 2009. No side affects that I am aware of.

I don't have middle of the nighters, but take it for insomnia that has been has been plaguing me since this cycle began in Dec 2009. It does help me to sleep. Thank God!

As far as the depression? I am mildly depressed but I would have to blame that on CH and all the other numerous health issues that came into my life along with it.

I'm 53 yrs old. I've had my share of tragedy and heartbreak in my lifetime and always been able to cope with life's little curve balls. Having CH  has had a huge affect on me. Guess I'm still trying to figure this all out, if that's even possible!?

Donna Mae   ;)

I've been using Melatonin for 3 months now-15mgs/night. I have experienced no particular side effects except they help me sleep. I am a nighttime chronic but since beginning this new regimen (April 24th) I have not had a night hit. I have heard Melatonin can deplete vitamin B6, so the brand I take includes a B6 supplement. I also take a B supercomplex just because. Hope this helps. Blessings! lance

Hey Lance.  You said you were a nighttime chronic??  Since you don't get nighttime hits anymore does this mean that you are now a daytime chronic?  Did you ever get day hits before?  Does the melatonin just switch the timing of the hits? or does it knock them out? or lessen them?? 

--Shaggy

I tried melatonin years ago, didn't work out well for me.  For some reason melatonin is a CH trigger for me. So instead of melatonin, I take an allergy pill at night to help avoid night time hits.   I take 1 Zyrtec aka cetirizine about an hour before sleep, this has worked well for me and may work well for others whom for one reason or another can't take melatonin, like myself.

Hi  ::)

My night time attacks had always been kip10s ....1am wake up call  :'(

I still had attacks during the day & has my cycle went on the day times attacks would increase till i was hitting K8/9 at the height of a cycle plus the 1am k10's to deal with  :'(

Until Jan 09 i had been seasonal 2/3 cycles a year, beginning in March and end in Oct with PF time in between - from that day onwards i have been chronic with no more than 10PF days before it would all start again.

I started taking 3mg Melatonin myself everyday from Nov 09 and over a period of time increased it until i had no more high kips break through :)

I now take 12mg about 20mins before i go to bed (around midnight) still wake up 2 or 3 times but can get back to sleep quite easily.....occasionally i wake up with lower kips 2/3 but can get cope with that  8-)

I get up 6.15am monday to fri for work (also wkends as i noticed trying to have a lay in, caused bad attacks)

I did try 2/3 different brands that didnt work so well, i now use the brand link below and for me they have worked great.

I did try stopping them when i "thought" a cycle was over but within 5days the K10's was back was force...wont be doing that again

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Melatonin works for many people.   It gives me nightmares (as in REALLY bad dreams). 
Jim

Hi Jim.....yes sometimes I do get nightmares/bad dreams as well. When I first started taking the Melatonin and increased the dosage - each time I did, I got very vivid dreams/nightmares but that soon passed. I just went with it  until them sort of dreams stop. I still get the odd bad dream but on the whole not many at all.

I am lucky in the fact I am aware that it is a dream whilst in it - and often (not all the time) I can have some control whilst dreaming so for me it can be great fun also.

Even with taking 12mg of Melatonin each night i still wake up 2 or 3 times - thats just normal for me BUT at least now I have no K10's (fingers and toes crossed it will stay that way) My quality of sleep is better also - whereas before, as soon as i hit rem sleep i would be woken up with a K8 and within a 2/3 mins it would be K10....

I know melatonin doesnt work for everyone - i wish it did  :-[
I cant be sure Melatonin will carry on working for me but have to hang onto hope (which i do)

Wishing you PF days & nights

Steph :)

Jim L wrote on Jul 27^th, 2010 at 11:19am:

Melatonin works for many people.   It gives me nightmares (as in REALLY bad dreams).  Jim

I guess I'd just ask, which is worse? Nightmares or waking up to an out of control attack every 90 minutes? Also, did you try to stay on it for a couple of weeks so your body's metabolism of it has a chance to even out?

Good point, Brew.  I'll put it back into tonight's mix.

I should mention here that using a mix of melatonin, kudzu, St. John's wort, magnesium, and scullcap, I have been essentially pain free for three years now.  A lot of folks have had success with this mix.

Here are a couple of threads discussing it, including the exact mix I use:

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I highly recommend you try this out!  It's a lot safer & cheaper than phamaceuticals, and much less hassle than O2.  Besides, I'd rather prevent than abort, any day!  ;)

No promises, but it's sure changed my life!

As for the nightmares, I have had very vivid and unusual dreams after taking melatonin, but nothing I'd call a "nightmare".  Actually, I find a lot of them pretty entertaining!  Just kinda goofy.

If you should happen to try the 'mix', please let me know how it works for you.

Regards (&GL),
Jim

I have to deplore the self-medication with melatonine because of really high risks of known, and yet unkonown! risks and side-effects

If it helps on occasional use for episodic patients - go on, take it once a while, DO NOT TAKE IT REGULARLY, your body will stop to produce it itself and you can not keep your necessary serum level with pills because of its short half-life

feneq, M.D.

feneq wrote on Jul 27^th, 2010 at 8:07pm:

I have to deplore the self-medication with melatonine because of really high risks of known, and yet unkonown! risks and side-effects If it helps on occasional use for episodic patients - go on, take it once a while, DO NOT TAKE IT REGULARLY, your body will stop to produce it itself and you can not keep your necessary serum level with pills because of its short half-life...

Just to clarify - I take it for a couple of weeks, twice a year, at the onset of a cluster cycle.  The mix breaks the cycle and I quit until the next time (six months later).

Can you site any references that support your concerns?  I've never seen any.  (Not challenging your statement - just an honest question).  The only real caveat I've seen about melatonin is that by bolstering the immune system, it might pose a risk for people with autoimmune disorders (e.g. lupus, Addison's disease, pernicious anemia, myasthenia gravis, etc.)

Regards,
Jim

unfortunatly i am not gathering informations on internet-pages, so i can't give you a link but if i find an english text in a book i'll write it down or quote references from medical publications but i'm actually not connected to the database, i can search some for you in my free time at work

best regards.
cave! - couple weeks of permanent use IS definately throttling down your own melatonine production so it can come to undesirable effects at discontinuation.

I know of no lasting side effects reported by any clusterheads who take anywhere from 6 to 12 mg of melatonin on a regular basis, and I've personally spoken with dozens upon dozens of them. Your info seems unsubstantiated, doctor.

6-12 mg is like peeing in an ocean - maybe thats why  ;)

feneq wrote on Jul 27^th, 2010 at 9:26pm:

6-12 mg is like peeing in an ocean - maybe thats why  ;)

I'm not sure I understand your point. I've always been led to believe that 6-12mg is a rather high dose. In fact, for those who use it merely as a sleep aid, the recommended dosage is 0.5-3mg. And I know of one patient for whom 20mg was ineffective as a sleep aid, but 0.5mg was.

Perhaps you could shed some light on this for the rest of us. I am of the opinion that clusterheads on the average do not produce enough seratonin in the pineal gland, and this may have something to do with why so many of us are afflicted with not only nighttime attacks, but have a much higher than normal incidence of sleep disorders.

i made a mistake- sorry, somehow i was thinking of a dosage of  0.6-1.2mg - that's why i was sceptic,

and you need to tell me how the melatonine should work on
Quote:

on the average do not produce enough seratonin in the pineal gland, and this may have something to do with why so many of us

somehow that doesn't make really sense to me

You're the one who claimed to be a doctor.

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An interesting conversation to watch, indeed.   Here I am, still up at 3:30 am after my "normal" 2:00 hit.  I'm in a mixed mode of sleepiness (maybe something to do with the melatonin I took at bed-time) and ..... I don't know....awareness/alertness/fear/suspicion that another attack will occur tonight. 

(Brew, from what film did that Robert De Niron come?

Jim L wrote on Jul 28^th, 2010 at 3:41am:

An interesting conversation to watch, indeed.   Here I am, still up at 3:30 am after my "normal" 2:00 hit.  I'm in a mixed mode of sleepiness (maybe something to do with the melatonin I took at bed-time) and ..... I don't know....awareness/alertness/fear/suspicion that another attack will occur tonight.  (Brew, from what film did that Robert De Niron come?

I always find it interesting to see who is posting at 3:00 in the morning (assuming they're in the US).  It can be an indication of who is getting hit!   :-/

Here's hoping you get some sleep, Jim!!! 

(And, I think the movie was 'Meet the Fockers' but I'm not entirely sure.   ;))

Yep, Lettuce, up in the middle of the night after a hit.  Ugh.

Steph, you have/had chronic kip 10s every night at 1:00 and still got up enough to be functional at 6:15 am?  Was that BEFORE you started taking melatonin? 

Even if I get up and can wipe out a kip 8 or so every night in about 30-40 minutes with oxygen, I'm always still "keyed up" afterwards and cant get back to sleep for another hour which makes getting up for work pure agony (which is why I've been late or absent so much this cycle) -- I'm constantly exhausted. 

I sometimes chew up and swallow a half an ambien at moments like this to get back to sleep.  I just took the ambien -- it will take 20 minutes or so to kick in, and then when my alarm clock goes off, I'll be sleepy and groggy.   Unless I have another hit between now and then, I'll drag myself to work and be pretty unproductive most of the day.

So, melatonin didn't keep me "under" tonight, but I'll try again tomorrow....

Jim Lux

Yes, I believe it was Meet the Fockers:
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I would like to address the doctor in this thread. 

Ok, if the problem I'm having is the fact that my body isn't producing enough serotonin to begin with, then supplementing melatonin (a by-product of serotonin breaking down as darkness falls), how in the heck can taking it be a problem, since I'm not producing enough of it to begin with?

Also, I have been taking it for over 10 years and don't have any issues.  In fact, I'm pretty darned healthy.

Edit to add, I think there are probably about 20 or so docs in the world that might know more about CH than a lot of us around here.

i'd have to ask a professor of endocrinology, i am not accroaching to give false or insufficient answers-

i am being watched in here  ;)

feneq wrote on Jul 28^th, 2010 at 1:35pm:

i'd have to ask a professor of endocrinology, i am not accroaching to give false or insufficient answers- i am being watched in here  ;)

Why don't you ask the hundreds of people who have used it very successfully for long, long periods of time WITHOUT ADVERSE SIDE-EFFECTS.

Just one of the problems with most doctors...

shaggyparasol wrote on Jul 20^th, 2010 at 4:36pm:

Hey Lance.  You said you were a nighttime chronic??  Since you don't get nighttime hits anymore does this mean that you are now a daytime chronic?  Did you ever get day hits before?  Does the melatonin just switch the timing of the hits? or does it knock them out? or lessen them?? --Shaggy

Sorry it's taken so long to get back to you. I wasn't ignoring you, just lost the thread. Anyway, I was night and daytime chronic. On April 24th of this year, I began a regimen of high flow O2 and Monster chug at the first sign of a hit. Aborts came rapidly in record time-5-7 minutes. I also dropped everything else I was on, and started taking 400mgs verapamil and 15mgs melatonin, along with a super B vitamin complex. After 3 years of getting hit 4-6 times a day, I have dropped to 0-1 hit per day. I don't believe in coincidences. What's working now may not always work, but I am so relieved life once again seems worth the living. Thanks for asking shaggy. God bless! lance

feneq wrote on Jul 28^th, 2010 at 1:35pm:

i'd have to ask a professor of endocrinology, i am not accroaching to give false or insufficient answers- i am being watched in here  ;)

I was going after your argument, that taking the supplement will decrease the body's natural production.  See, part of the problem is that my body's natural production must be run by union employees, as in my body doesn't make enough already.  ;) 

Quote:

my body's natural production must be run by union employees

sorry my friend- my inglish is okay but it is already four years ago i was working in great britain so i'm a bit out of routine- and i don't really get what this metaphor could mean..



Quote:

Why don't you ask the hundreds of people who have used it very successfully for long, long periods of time WITHOUT ADVERSE SIDE-EFFECTS. Just one of the problems with most doctors...

read what i wrote! i am not trying to make a conclusio of subjective treatment success, i am trying to analyze the physiologig and physiopathologic background for fundamental research, not for opinions



Quote:

as in my body doesn't make enough already.

you might be suffering of an epiphysis-malfunction, even inf your body is producing enough serotonine, besides, there might be pathogenic bodily changes in the communication process of the suprachiasmatic nuclei and nucleus arcuatus or even metabolic problems, like loss of melatopsine, high blood pressure, diabetes etc..

feneq wrote on Jul 28^th, 2010 at 2:15pm:

you might be suffering of an epiphysis-malfunction, even inf your body is producing enough serotonine, besides, there might be pathogenic bodily changes in the communication process of the suprachiasmatic nuclei and nucleus arcuatus or even metabolic problems, like loss of melatopsine, high blood pressure, diabetes etc..

Well if the Obamacare ever gets passed, I'll get tested for all of that, but I can certainly rule out the high BP and diabetes. 

i can try to find out more possible things for you.

do you have cold / cold sweaty feet in the evening/at night?
do you have a slight tremor?
are your hands or feet having a cyanosis?
do you feel slight electric pricles in hands or feet?
do you ever had a paralysis?
was a depression diagnosed? in family members? dementia praecox?

feneq wrote on Jul 28^th, 2010 at 2:31pm:

i can try to find out more possible things for you. do you have cold / cold sweaty feet in the evening/at night? do you have a slight tremor? are your hands or feet having a cyanosis? do you feel slight electric pricles in hands or feet? do you ever had a paralysis? was a depression diagnosed? in family members? dementia praecox?

Hey I appreciate the concern and the enthusiasm, but let's not do this.  Ok?

"Doc,"

You and I aren't just in different countries. I think we're on different planets. Perhaps we'd be best advised to avoid each other.

Unless you give out bad advice, that is.

i was trying to help you out - if you are malpracticed and tthreaten with wrong medication you can end up very bad.

i am just giving the chance to find out, i have no financial interest on these questions as your physician has for spending his time, and i have the TIME to concentrate and investigate in contrast to your physician -
everyone is welcome to ask me questions, i am happy if i can find out something for you - if someone doesn't want those questions asked in a public forum just write me a PM, anyway i have a professional discretion-

and i respect your wish not to ask.    :-X

Quote:

"Doc," You and I aren't just in different countries. I think we're on different planets. Perhaps we'd be best advised to avoid each other. Unless you give out bad advice, that is.

sad to hear, respected and accepted
in support of my argumentations; i need to have a huge background of research in this field to find out customized treatments

i didnt want to query you in any case

feneq wrote on Jul 28^th, 2010 at 2:45pm:

i was trying to help you out - if you are malpracticed and tthreaten with wrong medication you can end up very bad. i am just giving the chance to find out, i have no financial interest on these questions as your physician has for spending his time, and i have the TIME to concentrate and investigate in contrast to your physician - everyone is welcome to ask me questions, i am happy if i can find out something for you - if someone doesn't want those questions asked in a public forum just write me a PM, anyway i have a professional discretion- and i respect your wish not to ask.    :-X

Feneq,
Welcome to the board -
Read and grow in your knowledge about CH.
Advise and educate about CH using the information that you have painstakingly gathered over the course of your medical education and supplemented here.
Learn about your own condition and self and use that learning to help yourself become a better doctor and person.

But stop practicing medicine without a license!

You are not qualified to either diagnose or treat people over the internet!  Even if you've had years and years of experience (which you haven't), doing such a thing is a surefire path to disaster. 

Please, stay here and be yourself and learn about this disease.  I know you are eager to share your education and that is appreciated, however, you are needed here not as a treating physician but as a fellow sufferer who happens to be a physician...

Good post Lettuce.

Feneq....I just gotta ask. Are you a physician yet or just in medical school? It's really no ones business but looking at your facebook and myspace it appears to me that you may be in medical school. It was in German so I may be wrong.

Any way, the good Dr Lettucehead gave you some very good advise. We have been here for over 10 years and have been to many conventions with the best Neuro's on the planet and we are pretty knowledgeable over our condition.

Anyway read up on all the reports on the left and you may get your answers......

Welcome! :) :)

Jimi wrote on Jul 28^th, 2010 at 6:28pm:

Good post Lettuce. Feneq....I just gotta ask. Are you a physician yet or just in medical school? It's really no ones business but looking at your facebook and myspace it appears to me that you may be in medical school. It was in German so I may be wrong. Any way, the good Dr Lettucehead gave you some very good advise. We have been here for over 10 years and have been to many conventions with the best Neuro's on the planet and we are pretty knowledgeable over our condition. Anyway read up on all the reports on the left and you may get your answers...... Welcome! :) :)

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Darn it, hijacked .  All right you animals, how about more personal experiences so people will have more info.

Shaggy

Anecdotal, I know, but I'll claim limited success with it.  I take it nightly during a cycle, very occasionally, out of cycle.  The effective dose for me seems to be 9 mg, although I had to use 15 during the peak of the most recent cycle to notice any effect. 

Melatonin appears to reduce the number of nighttime attacks I get during a cycle, but it does not eliminate them.  I almost never get hit during the day, so (according to my headache journals) the total number of attacks during a cycle is reduced.

It does not appear to be associated with longer cycles.  (Mine have always been, consistently, six weeks in duration.)

In short, I consider it a valuable tool--but it's by no means a magic bullet.

I've noticed no side-effects whatsoever.

Best,

George

i already have my degree and am specializing in neurology now, the university is in austria, not germany,

yes, lettucehead is right- i better stop doing this. anyway, if someone has got a question about something it can be asked via PM and i can try go give a qualified answer in a poblic thread

see you guys, have a nice & painless day

i have a question - which is very important to me:
may i open a thread with different polls to be answered honestly by volunteers to gather some informations? i'd like you all to decide about

I'll leave your question to DJ, MrsDJ, or whomever, but for my part...I'm still waiting for you to demonstrate you have actually studied this site and all if offers, as well as OUCH and clusterbusters. Until then...I'm not interested. lance

Feneq--as Lance mentioned, any question about conducting polls, etc, should be directed to the site owner.  To do so, PM "DJ".

In the meantime, Shaggy has asked us to keep this thread on topic.  I think we ought to respect his wishes.

Best,

George