Clusterheadaches.com Message Board (http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi)
New Message Board Archives >> Medications, Treatments, Therapies 2003 >> Personal melatonin trial data
(Message started by: jflynn on Oct 30th, 2003, 10:18am)

Title: Personal melatonin trial data
Post by jflynn on Oct 30th, 2003, 10:18am
I've decided to start a trial of melatonin as a prevntative. I'll periodically edit this post to keep the stats current for anyone interested.

Personal information:
- 34yo white male with blue eyes, managerial profession with moderate stress
- episodic CH sufferer typically K4-8 intensity
- ~2 CH per 24 hours, typically at night, first one inevitably at 1:30am
- episodes typically last for a few weeks and recurr maybe every 3 months or so
- moderately severe allergies to ragweed and cedar
- good health

Failed past CH therapies:
- endoscopic sinus surgery
- oral prednisone
- corticosteriod nasal sprays
- pulsatile nasal irrigation
- NSAID analgesics
- oral and nasal antihistamine

Moderately useful abortives:
- hot shower
- effervescent codeine phosphate (essentially narcotic Alka-Seltzer)
- coffee (when I smoked cigarettes used to help a bit also)

MELATONIN THERAPY DATA:
Started 10-27-03. Plain melationin tablets without the added vitamin B that so many brands have. First day took 3mg, then 9mg daily (using 3mg tablets orally ~1hr before bedtime). Some links on melatonin used for CH:
www.achenet.org/news/older/022002.php
www.clusterheadaches.org/library/medications/melatonin.htm
www.vitamin-galore.com/Concern/Cluster_Headache.htm

102703 - 2 CH woke me at night at usual time
102803 - 1 CH in afternoon 1:30, 1 awoke me at night
102903 - 2 CH awoke at night
103003 - nil (wow, already CH free after 3rd night, unsure if melatonin responsible or episode spontaneously ended self)
103103 - nil
110103 - nil (still having shadows but no big deal)
110203 - nil (I even stayed up late last night trying to trigger a CH by lying horizontally with feet up watching a movie, pain free)
110303 - nil
110403 - nil (a few shadows, one of which started to border on pain at about 11:30pm and subsided, I had taken the melatonin at maybe 10:30pm)
110503 - nil (had a shadow last night that started to hurt for a few minutes but it never really developed)
110603 through 111003 - nil (shadows have subsuided, perhaps the cycle is over)
111103 through 111303 - nil
111403 - 1 CH moderate-severe intensity (forgot to take melatonin)
111503 through 111803 - nil (occasional shadows, no actual CH)

Title: Re: Personal melatonin trial data
Post by jflynn on Oct 31st, 2003, 10:13am
Definitely seems to be working so far.  Great if true, but unfortunately the spontaneous resolution of episodes makes it difficult to track the effectivness of preventative treatments.

I'll definitely continue the trial and urge people who have not tried it to give it a shot.

Title: Re: Personal melatonin trial data
Post by thomas on Oct 31st, 2003, 10:47am
It has worked great for me - pain free, but still have shadows.

Title: Re: Personal melatonin trial data
Post by maggie_may on Oct 31st, 2003, 2:02pm
After reading the stuff on melatonin here, I decided to give it a shot.  It's only been two nights, so I can't really say anything except to say that I think it's helping out my sleeping disorder (not CH related) and I notice that I've been falling asleep and waking up in the morning rested.

I'll give it more time to see if it helps with my shadows.

Title: Re: Personal melatonin trial data
Post by Karla on Oct 31st, 2003, 4:55pm
I would love to try this however you are not suppose to use it with an antiphycotic such as zyprexa or geodon, etc.  Some day I hope to be off of the geodon and able to try the melatonin.  Thanks for posting your encouraging results.  Let us know how it goes for your next cycle.

Title: Re: Personal melatonin trial data
Post by jflynn on Oct 31st, 2003, 10:47pm

on 10/31/03 at 10:47:24, thomas wrote:
It has worked great for me - pain free, but still have shadows.


I've still got shadows as well now that you mention it.  The shadows are trivial compared to the real deal and I could be wrong here, but if I'm having shadows that should mean I'm still in a cycle so the melatonin must be working.  Good news!  In other words, the shadows tell me that I'm in an active cycle and it's the melatonin keepng the headaches at bay, not just the natural and spontaneous end of the cycle.

Of course my trial is not very scientific but thus far it seems to be working and in the end results are what we really want.

Title: Re: Personal melatonin trial data
Post by thomas on Nov 3rd, 2003, 3:00pm
I think my cycle is over now - no more shadows.  I got really drunk on Saturday - didn't take any melatonin - no headache the next day. [smiley=me&mb.gif]  This cycle on lasted a tad over 3 weeks - my normal cycles have been 3 months.  If you're still having shadows - try an ssri, magnesium and calcium with the melatonin.

Title: Re: Personal melatonin trial data
Post by Giovanni on Nov 3rd, 2003, 3:16pm
I too have had results with melatonin @9mg per night one hour before bedtime.  Last cycle was ended one month before schedule after having started the melatonin on June 13th.

It appears that some of us have good results with this and other not.  Glad you found something that works for you.

;;D

Title: Re: Personal melatonin trial data
Post by jflynn on Nov 3rd, 2003, 3:50pm
If by SSRI you mean a selective seratonin reputake inhibitor such as Paxil, I'll pass and deal with minor shadows.  Paxil gave me negative sexual side effects and also makes me into an emotionless zombie, both of which aren't so great for family life. :)

Title: Re: Personal melatonin trial data
Post by thomas on Nov 3rd, 2003, 5:25pm
Yeah, paxil or prosac.  My girlfriend didn't like me on the paxil either because of the sexual side effect.  I'm taking 20mg of fluoxetine (prosac) with no ill effects.

Title: Re: Personal melatonin trial data
Post by jflynn on Nov 10th, 2003, 10:32am
Well, a couple weeks later and still pain free.  However the shadows recently disappeared so I suspect my cycle has ended for now.  I'm calling this a victory and am thrilled to have apparently subverted a cycle of cluster headaches.

Title: Re: Personal melatonin trial data
Post by Edna on Nov 12th, 2003, 12:48am
Oh jflynn......thanks

I'm in cycle right now, and just hearing of using the melatonin.

Hoping I can experience some of the success you're having

I'll let you know,

EDNA

Title: Re: Personal melatonin trial data
Post by M.Laun on Nov 12th, 2003, 9:40am
very interesting.

I'm new here but have been a Episodic CH Sufferer since 1989. on the 11th of January i will have been PF for 3 yrs.  :)  

Why did my CH never come back?? I never gve it a thought. I don't like dwelling on the beast. After reading about your experiences with Melatonin; it may have been that i have been taking small dosis ( 3 mg ) of melatonin twice a week for the last 3 yrs.  i do get 'episodes' of droopy tearing eye coupled with very mild shadows, but no headaches.


Title: Re: Personal melatonin trial data
Post by Tiannia on Nov 12th, 2003, 12:50pm
Since I read a post about 4 weeks ago about Melatonin, I decided to try it.  I started with 3g doses, and it did not help at all, I was still getting woken up about 2-3 in the am and hit again about 6am and heavy shadows or hit again mid morning.  

I have been currently taking 9mg each night. I am still getting hit constitantly at 3am or so, but I am not getting the 6am one.  But I am starting to now get shadows earlier in the evening.  Not sure if the neast is just taking a different form or if the meletonin is actually helping.  

Tiannia

Title: Re: Personal melatonin trial data
Post by thomas on Nov 12th, 2003, 12:55pm
I didn't get good results with the melatonin untill I combined it with an ssri and magnesium supplement.

Title: Re: Personal melatonin trial data
Post by Tiannia on Nov 12th, 2003, 12:58pm
I might try that.  I am willing to try about anything due to the fact that I changed PCP and we started all over.  But I am keeping everything written down so that I can show him how / what / and when.  I also put together a huge file of paperwork sot hat I can bring him info cause he states that no research has ever shown that O2 works for these.  So I have a lot to teach hopefully he is open to it. I see him on the 5th, so it will be interesting to see what he says.

Tia

Title: Re: Personal melatonin trial data
Post by thomas on Nov 12th, 2003, 1:00pm
Good luck :)

Title: Re: Personal melatonin trial data
Post by floridian on Nov 12th, 2003, 1:22pm

Quote:
I also put together a huge file of paperwork sot hat I can bring him info cause he states that no research has ever shown that O2 works for these.


I'm assuming you clicked on the "oxygen info" bar on the left, just above the yellow "OUCH website" bar.  Good luck with the doc/insurance co.

Title: Re: Personal melatonin trial data
Post by Edna on Nov 13th, 2003, 8:39am
WOW!!   I've been fighting hard for a week now with my cycle. It's very different this year.  Yesterday I went out and bought myself some melatonin. So, last night, (although reluctant to take the whole 9mg) I took 3 of the pills (they were 3 mg each)


WOW     WOW     WOW

NO HEADACHES AT ALL LAST NIGHT!!!!!!!!!!!!!

Although my sleep was very restless, and I woke about every hour to hour and a half.......NO HEADACHE!!!!

This morning for the first time in a week, I'm up, I'm dressed, I already made the bed, I already put laundry to wash, and DINNER IS ALREADY COOKING!!!!!!!!

Thanks to all of you who have taken the time to give the advice here on the melatonin. And, special thanks to Mast for even informing me about it!!!!!!

I'm hoping it continues as well as it went last night, but even if it doesn't....it was worth that one good night of rest!!!!!

Will keep you posted and wishing everyone else the same outcome!!

pf wishes to ya,
EDNA

Title: Re: Personal melatonin trial data
Post by Svenn on Nov 13th, 2003, 9:09am
Xing fingers here that this good thing keeps on Edna


Svenn

Title: Re: Personal melatonin trial data
Post by floridian on Nov 13th, 2003, 12:02pm
Glad its working for you!!  

5htp is another way to boost melatonin production.  5htp is one step away from serotonin, and serotonin is converted to melatonin.  5htp may not be as effective as melatonin, as the signals to release melatonin at night could be blocked with CH.  But the combination may be more effective than melatonin alone.  


Title: Re: Personal melatonin trial data
Post by Tiannia on Nov 13th, 2003, 1:24pm
I wish you the best Edna.  It would be great to know that it did.  

PF Vibes coming your way.

Tiannia

Title: Re: Personal melatonin trial data
Post by jflynn on Nov 14th, 2003, 3:19am
UPDATE:

More evidence to support melatonin? I just woke up at 2:05am with a good old CH. Why is this good evidence? Tonight was the first night I didn't take the melatonin in my little trial since I started it. Real smart, Jason, real smart.

Luckily the CH is not horrible, just feels like my right eye is going to pop out, not shoot across the room. I'm off to a hot shower and move the melatonin to a more obvious place so this doesn't happen again.

Title: Re: Personal melatonin trial data
Post by Paigelle on Nov 14th, 2003, 11:39am
Going to buy Melatonin today.  Any brand better than others.  What should I look for?  

Title: Re: Personal melatonin trial data
Post by thomas on Nov 14th, 2003, 11:41am
Good ole generic works for me.  I've had the best luck with 3mg of melatonin combined with 2mg of time release melatonin about 45 min before bed.  You can get it pretty cheap at GNC.

Title: Re: Personal melatonin trial data
Post by jflynn on Nov 14th, 2003, 5:19pm

on 11/14/03 at 11:39:46, Paigelle wrote:
Going to buy Melatonin today. Any brand better than others. What should I look for?


I'd buy the 3mg pills so you can experiment with dosage.  6-9mg works well for me, 3mg for others such as Thomas.

Some brands combine vitamin B with the melatonin.  Personally I don't want a lot of excess B in my system so I got a brand that is only melatonin.  I cannot recall the brand, so read the label.

Title: Re: Personal melatonin trial data
Post by Paigelle on Nov 17th, 2003, 9:40am
Okay, I have been using Melantonin since Friday.  I took 3mg Friday night no CH, I took 6 mg Saturday night no CH, I took 3mg last night and I was up at 3:47 with a CH.  I was only about a KIP 2, but I am also just in the beginning of my cycle.  So, it is okay to up the dosage to 9mg and not go comatose?  I really don't want to take prednisone again, even though it knocked them out cold.

Title: Re: Personal melatonin trial data
Post by floridian on Nov 17th, 2003, 10:23am
Melatonin is non-toxic, but some people definitely feel groggy or zombified the morning after - it seems to be an individual response.  Are you taking time released melatonin ?  I have had better CH prevention with that.  Also, consider taking a magnesium supplement, and something like tea (green or black, decaf or regular) to sponge up the Nitric Oxide.  Turmeric or curcumin also is anti-inflammitory and reduces some of the elevated immunochemicals seen in CH (like TNF-alpha, other cytokines).  5htp (50 mg twice daily when sleep is disturbed or have shadows or aches) also helps me - but could cause problems if you are on SSRIs or other anti-depressants.  Fish oil or flax oil helps to balance the autonomic nervous system, which is out of whack in CH. That's pretty much my regimen for last summer. I was headache free, but I could tell I was in a cycle.  I have since added saint johns wort and dropped the turmeric, and am trying to be consistent about taking the fish/flax oil. I plan to continue that through next summer. .. the personal experiment continues.

Title: Re: Personal melatonin trial data
Post by jflynn on Nov 18th, 2003, 10:41am
It's still working for me, see forst post in thread for updated data.

As for dosage the studies used a dosage of 10mg so I would definitely up the dosage from 3mg to either 6 or 9 based on that.  I've been taking either 6 or 9mg depending on shadows the day preceeding an d it works well.  If you feel groggy in the morning you could simply take the dose earlier the night prior, perhaps 2 hours before bedtime instead of 1.

Title: Re: Personal melatonin trial data
Post by Paigelle on Nov 18th, 2003, 11:11am
Took 6mg last night and will do 6mg again tonight.  I am not going to be stupid and go back to 3mg.  Nope, not going to do it.  I also took a small dose of Magnesium.  

Title: Re: Personal melatonin trial data
Post by thomas on Nov 18th, 2003, 2:40pm
My best success came with using an ssri also.

Title: Re: Personal melatonin trial data
Post by Paigelle on Nov 18th, 2003, 3:15pm
Thomas, I am a little slow during my cycles... What is SSRI?  

Title: Re: Personal melatonin trial data
Post by thomas on Nov 18th, 2003, 3:46pm
Selective seretonin re-uptake inhibitor ie prozac or paxil. :)

Title: Re: Personal melatonin trial data
Post by Paigelle on Nov 18th, 2003, 3:56pm
Oh, that is what it is!   ::)  Somedays, I just shouldn't even get out of bed.  Today happens to be one of them!  Thank you Thomas.  I did get my magnesium yesterday I took it with dinner last night.  So, we will see what happens!

Title: Re: Personal melatonin trial data
Post by thomas on Nov 18th, 2003, 3:57pm
I usually take my ssri and magnesium in the am and the melatonin at night, because the ssri can make you stay awake.

Title: Re: Personal melatonin trial data
Post by jflynn on Nov 25th, 2003, 3:47pm
Still seems to be working with more evidence.  Wife had a baby last weekend on Friday and I skilled a couple days of melatonin.  Horrible headache each day as well as the day after I started taking it again.  One doctor told me melatonin takes a few days to build up in the system.  So yet again, more data consistent with melatonin working as a preventative for me.

Title: Re: Personal melatonin trial data
Post by thomas on Nov 29th, 2003, 2:17pm
bump

Title: Re: Personal melatonin trial data
Post by maria9 on Nov 29th, 2003, 7:54pm
Thomas,

Just curious how much Prozac did you take?  My doc recommended 20 mg every other day for the duration of the cycle (whatever you guessed that would be) once the precursor symptoms of CH set in.  This is how I have been handling this curse over that last 9 nine years, only 1 cycle but as I have posted before massive doses of natural sunlight due to my golfing habit

Title: Re: Personal melatonin trial data
Post by thomas on Dec 1st, 2003, 9:50am
20mg every day.

Title: Re: Personal melatonin trial data
Post by t_h_b on Dec 30th, 2003, 7:49pm
bump



Clusterheadaches.com Message Board » Powered by YaBB 1 Gold - SP 1.3.1!
YaBB 2000-2003. All Rights Reserved.