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Superpain
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Melatonin
« on: Mar 28th, 2004, 10:34pm »
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I'm at my wit's end. If someone told me to eat dog poop to get relief, I'd try it...
 
Anyway, I got melatonin, and i thought I saw something about magnesium somewere, so I got some of that too, along with a multi vitamin.
 
I couldn't remember which thread the melatonin was suggested in,,, What is the effective dose for us clusterheads?
And was the magnesium also suggested or is that a waste of time?
thanks.
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Re: Melatonin
« Reply #1 on: Mar 28th, 2004, 10:41pm »
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At one point, 9-21 mg of melatonin was recommended to me.  I know that T_H_B gets by on a small dose, but I can't remember what it is.  Maybe PM him if he doesn't respond to this thread?  The dose really varies for a variety of people.  For another person, I think it works best at 15 and doesn't work at 13 or 17.  (At least I think that's what he told me...)
 
My doc put me on magnesium, 250mg twice a day.  I don't remember if it is for NDPH or CH or both, though.
 
I'm considering trying the melatonin again...
Considering going to the ER myself....can't take much more of this.
 
 
{{{{{{{{{{superpain}}}}}}}}}}
Keep on fighting!
 
Lizzie
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Re: Melatonin
« Reply #2 on: Mar 28th, 2004, 10:50pm »
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Magnesium may help if your body reserve of magnesium is low.  About 40% of people tested showed some improvement.  This study was about using IV magnesium (not a D.I.Y. project), but tablets should work as well,  just takes longer to kick in.  Chelated magnesium (citrate, aspartate, orotate, etc) is better tolerated by many - magnesium oxide can cause a loose bowel, and magnesium sulfate is a well known laxative.  
 
Magnesium acts as a cofactor for many enzymes, so a deficiency can affect many metabolic processes. Magnesium also acts as a calcium channel blocker.  
 
Quote:
1: Headache. 1995 Nov-Dec;35(10):597-600.  
 
    Intravenous magnesium sulfate relieves cluster headaches in patients with low serum ionized magnesium levels.
 
    Mauskop A, Altura BT, Cracco RQ, Altura BM.
 
    Department of Neurology, State University of New York, Health Science Center at Brooklyn, USA.
 
    Patients with cluster headaches have been reported to have low serum ionized magnesium levels. We examined the possibility that patients with cluster headaches and low ionized magnesium levels may respond to an intravenous infusion of magnesium sulfate. Thirty-eight infusions of magnesium sulfate were given to 22 patients with cluster headaches. The mean ionized magnesium level prior to 23 infusions which provided relief for at least 2 days and enabled the patient to skip two or more attacks, was 0.521 +/- 0.016 mmol/L; this value was 0.561 +/- 0.016 prior to 15 infusions which were ineffective. These latter 15 infusions were preceded by higher total magnesium levels. The ionized magnesium level prior to the 23 effective infusions was below 0.54 mmol/L in 19 patients. Five of the 15 ineffective infusions were accompanied by basal ionized magnesium levels below 0.54 mmol/L. In 76% of the infusions, there was a correlation between a response and an ionized magnesium level below 0.54 mmol/L. Nine patients (41%) obtained clinically meaningful improvement. Spontaneous remissions and a placebo effect might have accounted for some of the improvement. However, this should have applied equally to all patients, regardless of the ionized magnesium level. Measurements of ionized magnesium may prove useful in elucidating the pathogenesis of cluster headache and in identifying patients who may benefit from treatment with magnesium.
« Last Edit: Mar 28th, 2004, 10:56pm by floridian » IP Logged
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Re: Melatonin
« Reply #3 on: Mar 28th, 2004, 11:05pm »
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Thanks guys!
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Re: Melatonin
« Reply #4 on: Mar 29th, 2004, 12:03am »
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Do you need a script to buy melatonin??? And what does it do exactly...
 
Like to know...
 
 
Pegase
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Re: Melatonin
« Reply #5 on: Mar 29th, 2004, 12:11am »
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Hello Pegase,
 
Not sure how it works in Canada, exactly, but if it is the same as in the US, you don't need a script for it.  Melatonin is actually a hormone made in the body.  It helps to regulate sleep.  I'm sure that someone could give you a more scientific explanation than that.  However, sometimes the body doesn't produce enough through its own source, so taken it in pill form does help.  In general, for many people it helps to sleep through the night without as many nocturnal CH attacks.  Somebody correct me if I'm wrong!!
 
Lizzie
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Re: Melatonin
« Reply #6 on: Mar 29th, 2004, 12:24am »
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That's what I'm hoping for!
You're right on the hormone part and it is OTC...
I started off taking 9mg... 3x the reccomended dosage on the bottle, but we'll see if that's enough. I need uninterrupted sleep real, real bad, right now! Or I'm gonna lose my mind and have an emotional breakdown. Sad
I've been getting hit too hard, too often, too long. I'd give anything for 12hrs of uninterrupted sleep!
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Re: Melatonin
« Reply #7 on: Mar 29th, 2004, 12:35am »
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Super, I'm right there with ya. I got some melatonin yesterday and took 3mg before bed, woke with a HA about an hour later. I took 9mg tonight, drifted off for a bit, but woke back up (on my own, not the beast). I've taken to sleeping with a cannula and my O2 concentrator set at 5lpm, hoping that helps stave off an attack. I've been taking magnesium and B-complex along with my depakote too, hoping that will help. I only have one Imitrex tablet left, plus Frova samples my PCP gave me, but my insurance won't refill my imitrex.
 
I know not to mix triptans, so I'm holding off on trying the Frova till it's been 24 hours since my last trex... or at least until 9am today... hope the beast stays away that long. I've handled a couple mid-level attacks today with O2... straight from the cylinder since I don't have a non-rebreather.
 
I'm hoping like hell I can get squeezed in at the neuro, since my PCP doesn't seem too concerned about giving me what I need. He insists the depakote needs more time to work, this after 3 weeks of taking it.
 
Anyhow, rant mode is off, I'm just frustrated.
 
Sending PF sleep vibes your way, Super.
 
Joe
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Re: Melatonin
« Reply #8 on: Mar 29th, 2004, 12:40am »
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Joe,
 
It's true about the depakote.  Can take 6 weeks or more before it kicks in.  However, with CH we can't really wait that long!!!  Good that you're trying the O2 and melatonin.  Have you/your doc considered a steroid taper to give you some relief until the depakote starts working?  Sometimes they do that when someone starts a new preventive that might take awhile to get started.
 
I'm in a fix at the moment as well because I ran out of Amerge and the insurance company won't pay for more.  I have to call tomorrow to see if my doctor's office actually sent an override letter.  In the meantime, on Friday night he called in stadol for me.  Just used it again, and it has dulled the pain for a little bit.
 
I'm getting exhausted from all the attacks and high levels of pain.  This week has been absolutely awful..worse than usual..that's why I've been considering going to the ER.  Don't know if I will though because I tend to be against going to the ER for my headaches...  I'll see how it is tomorrow..
 
Hang in there, and I sure hope we all get some relief soon!!!
 
Hugz,
Lizzie
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Re: Melatonin
« Reply #9 on: Mar 29th, 2004, 1:03am »
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Lizzie,
 
I'm at the tail end of my second prednisone taper. Other than making me feel bloated and sore the last couple weeks, I don't think it helped much. I've been geting breakthrough headaches from the beginning, I'm just spacier in between them. What torques me off more than anything is that my PCP won't hear of me getting imitrex in anything but pill form, and when I finally got an O2 prescription, it was for a concentrator with a max of 5lpm and a cannula. Hell, the e-tank I got as a backup is about empty as we speak, and I've been using it without the regulator, just taking hits from the valve. That's why I'm hoping to get in VERY soon with the neuro. I have calls to make first thing in the morning.
 
I'm avoiding the ER, cause all they've ever done is shoot me with demerol, put me on a cannula for a half hour, then send me on my way.
 
Good vibes right back to you, Lizzie!
 
Joe
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Re: Melatonin
« Reply #10 on: Mar 29th, 2004, 3:52am »
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Here is a site for magnesium info (from an old message of mine): "WWW.HEADACHEPAINFREE.COM   The content of this site has been expanded since I first posted it. It now covers several types of headache and a more general coverage of medications. It remains, to my knowledge, the best single source of information on the use of magnesium for headache--both for prevention and as a  treatment during an active cycle.
 
Magnesium as a preventive treatment for CH is the main value of this site. It appears that magnesium has been used in Europe for some years for this purpose and I've posted one medical report about using IV magnesium to abort headaches which would not repond to the usual medications. [With thanks to Shawna @ 6/22/00.]"
---
Melatonin: Several reports using it to prevent attacks were using 9mg/day at bedtime. It may take several days before you can expect to judge the value. I have not seen any new reports for nearly a year now, suggesting that this may have been a blind alley. But given the low cost and safety of melatonin, it's worth a try.
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Re: Melatonin
« Reply #11 on: Mar 29th, 2004, 4:37am »
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I've been on Depakote too and it took too damn long to work for me.  I couldn't take the wait.  I was on it for a little over 2 months 200mg a day.  The only thing that I walked a way from with it was 20 lbs... Lil liz I'm sory to hear that you are in such bad pain.  right now Sad I'm right there with you.  I've not come out of my bout at all since we have last spoken.  I'm still on Topomax 200mg a day and it isn't doing diddly squat.  I'm getting hit 5 or 6 times a night and as you know I'm Chronic and also that o2 does not work for me.  I also suck it straight from the tube.  I'm taking DHE, Toradol and Compazine IM and nothing is touching these things. Vibes to all of you and keep fighting!  I've been head banging fiercly.  On March 19th I had my first Botox treatment and so far nothing.  I also went to the Chiropractor March 20th (desperate for anything).  I got a massage the other day.  Hang in there guy's.  I say that I can't take this much more either but what the hell else can we do?  We've got to fight.  Connie
« Last Edit: Mar 29th, 2004, 4:39am by Connie2 » IP Logged
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Re: Melatonin
« Reply #12 on: Mar 29th, 2004, 8:26am »
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Hello,
 
Yes, 9mg of melatonin one hour before planned bedtime plus some B-Complex 50's a couple time during the day ended my last cycle by one month. Good luck.
 
John
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Re: Melatonin
« Reply #13 on: Mar 29th, 2004, 2:31pm »
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FUCKEN A! Melatonin RULES!
 
I ran out of O2 last night and had to suffer a pretty good one just after I laid down, for about an hour. The melatonin seemed like it wanted to help at 9mg, but couldn't quite do it, so I uped it to 18mg.  
I still had headaches... I even kinda remember moaning and sort of "yelping" at one point. I remember my head and neck being rather uncomfortable, and I still even have a slight headache today... But it's noon here, and I just got up from about 10 hrs of sleeping without having to get up and dance! Like I said, it was sort of restless here and there, and my head definitely hurt, but I was able to sleep through it.
Thanks everybody!
That's about as close to a silver bullet as I've found for the night time!
And you can get it at the grocery store!
 
I just can't believe the little simple things that help so much! All these years of suffering! When I lived in Missouri, where I had a good portion of my cycles, my next door neighbor had a huge welding shop stocked with plenty of O2, but I didn't know... The grocery store has always had melatonin, but I didn't know... What else don't we know!?
For all we know the cure for these things is sitting on the shelf in the paper goods isle of the local grocery store... It's crazy...
 
 
Anyone that has not tried melatonin, and can't sleep... Get your ass to the store today!
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Re: Melatonin
« Reply #14 on: Mar 29th, 2004, 2:34pm »
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on Mar 29th, 2004, 12:40am, Lizzie2 wrote:
Joe,
 
It's true about the depakote.  Can take 6 weeks or more before it kicks in.  However, with CH we can't really wait that long!!!  Good that you're trying the O2 and melatonin.  Have you/your doc considered a steroid taper to give you some relief until the depakote starts working?  Sometimes they do that when someone starts a new preventive that might take awhile to get started.
 
I'm in a fix at the moment as well because I ran out of Amerge and the insurance company won't pay for more.  I have to call tomorrow to see if my doctor's office actually sent an override letter.  In the meantime, on Friday night he called in stadol for me.  Just used it again, and it has dulled the pain for a little bit.
 
I'm getting exhausted from all the attacks and high levels of pain.  This week has been absolutely awful..worse than usual..that's why I've been considering going to the ER.  Don't know if I will though because I tend to be against going to the ER for my headaches...  I'll see how it is tomorrow..
 
Hang in there, and I sure hope we all get some relief soon!!!
 
Hugz,
Lizzie

 
Have you noticed any change in frequency or severity since starting the stadol?
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Re: Melatonin
« Reply #15 on: Mar 29th, 2004, 2:36pm »
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on Mar 29th, 2004, 2:31pm, Superpain wrote:
FUCKEN A! Melatonin RULES!

Yeah, pretty much.  Grin
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Re: Melatonin
« Reply #16 on: Mar 29th, 2004, 2:40pm »
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Not so much....the attacks got more severe and more frequent Saturday-Sunday.  Haven't had one yet today, but when the attacks wore off over the weekend, it had aggravated my NDPH headache to an extremely high level, so I felt like I was not getting any break.  Last night, the stadol did lessen the pain some for the first time, and I was able to sleep through the night more or less.  It definately made me really itchy and drunk feeling!  Gotta try not to use it for the next couple days, though...so I don't get into the habit of overusing it, or using my prescription up too fast!  So frustrating....
 
I'm glad to hear the melatonin helped you so much!!!! Smiley  That's excellent. Smiley  Keep us posted on how it continues to work.  
 
Hugz, Lizzie Smiley
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Re: Melatonin
« Reply #17 on: Mar 29th, 2004, 2:53pm »
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Yeah, Lizzie you can build up a tolerance and even a dependancy on that stuff pretty quick. I used to go through a bottle about every 4 days in cycle in the past.
 
Just be aware of the ha patterns, and I'd suggest stopping using it if they change. I've suspected for a while that stadol sometimes makes me have more, worse headaches. And since it doesn't really do anything except make you not care about the headache, you have to weigh the pro's and con's of using it.
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Re: Melatonin
« Reply #18 on: Mar 29th, 2004, 4:48pm »
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You're right about all that.  All it did for me last night was that I could sleep for more or less 6 hours.  But at least I didn't care about it too much!
 
I'm going to try not to use it today or tomorrow.  I had forgotten last night that on Friday, I'm starting a steroid taper...or at least I had better be!  Going to try to hold out till then....
 
Thanks for the advice about it! Smiley
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Re: Melatonin
« Reply #19 on: Mar 29th, 2004, 5:39pm »
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Yo! Superpain, here's my cocktail
 
My CH treatment
 
20min HOT steamy shower 1 hour before bed
3 mg of melatonin and 2 mg of time-release melatonin afterwards
Go to bed
Wake up, take 250 mg of magnesium and 20 mg of fluoxetine (prozac)
Abort with zomig as needed.  
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Re: Melatonin
« Reply #20 on: Mar 29th, 2004, 5:42pm »
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Never tried melatonin. And now Ihear this shit about Depakote. I've been since the 18th@250 for 5 days then 500 for 10 days then back to 250 again...and Im not really sure it's doing anything either. I think Im runnin down my cycle here in a few weeks..(knock on wood)...at least I hope I am. But...next time I'm going to try the melatonin and see.....
 
Good topic Super!!   Thanxxx....Luke
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Re: Melatonin
« Reply #21 on: Mar 29th, 2004, 5:45pm »
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Yup, melatonin does it for me, too.  0.5mg regular release at bedtime.  Saved my life.
 
Pegase, I think it's available OTC in Canada now.  Here you can get it at any vitamin shop or drugstore.  It's very cheap.
 
Your body makes a minute quantity so I suggest starting at 0.5mg and working your way up in 0.5mg or 1mg incements.  18mg is a rather large dose, I've read about 12mg.  Even 0.5mg is a lot more than your body makes on its own.  Take too much and it an cause a headache.  
 
And remember, just because it's OTC doesn't mean it's not a real drug.  It's a hormone and has some mighty powerful effects in your skull.
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Re: Melatonin
« Reply #22 on: Mar 29th, 2004, 6:38pm »
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on Mar 29th, 2004, 4:37am, M8895 wrote:
I've been on Depakote too and it took too damn long to work for me.  I couldn't take the wait.  I was on it for a little over 2 months 200mg a day.  The only thing that I walked a way from with it was 20 lbs... Lil liz I'm sory to hear that you are in such bad pain.  right now Sad I'm right there with you.  I've not come out of my bout at all since we have last spoken.  I'm still on Topomax 200mg a day and it isn't doing diddly squat.  I'm getting hit 5 or 6 times a night and as you know I'm Chronic and also that o2 does not work for me.  I also suck it straight from the tube.  I'm taking DHE, Toradol and Compazine IM and nothing is touching these things. Vibes to all of you and keep fighting!  I've been head banging fiercly.  On March 19th I had my first Botox treatment and so far nothing.  I also went to the Chiropractor March 20th (desperate for anything).  I got a massage the other day.  Hang in there guy's.  I say that I can't take this much more either but what the hell else can we do?  We've got to fight.  Connie

 
Hey Connie...sorry I didn't respond sooner.  Got distracted by some stuff. Smiley  I just did want to tell you that for me, the botox took something like 8 weeks before I noticed any effect.  Long time to wait for clusters, but hey if it helps and gives you a little pain free time...even if it is way off in the distance...then maybe it's worth it!!  How come they use botox for clusters again?  I thought botox was generally used for headaches that could be associated with muscle tension?  I got my 3 courses of botox back when all I had was NDPH, but only the 1st course of it did any good.  Undecided
 
I know they always say for the migraine meds that they could take up to 3 months to work well, but it is too long to wait when dealing with CH!!!  Next week when I go back to my doc, I'm gonna tell him that he needs to hook me up with something that's actually gonna help because playing around with these tricyclics and verapamil alone is not doing it!!
 
Hang in there!!!
Hugz, Lizzie Smiley
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Re: Melatonin
« Reply #23 on: Mar 29th, 2004, 7:39pm »
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on Mar 29th, 2004, 5:45pm, t_h_b wrote:
Yup, melatonin does it for me, too.  0.5mg regular release at bedtime.  Saved my life.
 
Pegase, I think it's available OTC in Canada now.  Here you can get it at any vitamin shop or drugstore.  It's very cheap.
 
Your body makes a minute quantity so I suggest starting at 0.5mg and working your way up in 0.5mg or 1mg incements.  18mg is a rather large dose, I've read about 12mg.  Even 0.5mg is a lot more than your body makes on its own.  Take too much and it an cause a headache.  
 
And remember, just because it's OTC doesn't mean it's not a real drug.  It's a hormone and has some mighty powerful effects in your skull.

 
The stuff I got is 3mg per pill.
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Re: Melatonin
« Reply #24 on: Mar 29th, 2004, 7:43pm »
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One thing about melatonin:
 
It's considered a supplement, and therefore isn't FDA regulated. Therefore effective dosages from brand to brand are not standard. So the effect you may get from 1g of one brand may not be the same as 1g of another brand.
 
Everything I've read from medical reports re clusters says 9mg, so that's what I'm trying. Hopefully tonight will go better, since I have a job interview in the morning. Fingers crossed!
 
Joe
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