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Tom K
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Melatonin ?'s...not usual ?'s
« on: Sep 4th, 2004, 11:26am »
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Ok, saw the melatonin link in the latest thread.  Link said that it helps curtail the pain and frequency?  Has anyone seen this in their normal cycles?  I know everyone who has tried it says it helps cut the night ones down, but what about daytime?  Has it helped cut your cycle shorter?  I am really looking at this because I really hate the pred.  I had ITP (long med term that means your spleen attacks your platelettes and kills them off, so you can bleed to death from a simple bump or bruise), they put me on pred because my platelette count was down to under 1000/mcl, normal is 18,000-24,000mcl.  They thought I wouldn't make it out of the hospital...anyhow, they put me on 280mg of pred everyday with a 4 month taper.  No CH during that time but 1 week after being off the pred...blammo!  Worst CH cycle, ever.  At least for me.  I don't want to go on verap, because it really makes me stupid and foggy.  So...to make a long story short (too late), I was looking for some more insight to the melatonin.
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Re: Melatonin ?'s...not usual ?'s
« Reply #1 on: Sep 4th, 2004, 12:04pm »
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Meletonin is OTC. Usual dosage is 9 - 12 mg @ bedtime. I used it for awhile and it did NOT help me @ all. Others claim it helps with night time attacks. I don't claim that. I don't think it will make anything worse by trying it though. Might be worth a shot !! Don't think it will do squat for day time headaches.
 
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Re: Melatonin ?'s...not usual ?'s
« Reply #2 on: Sep 4th, 2004, 12:34pm »
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Wow Tom,
 
That's quite an ordeal you went through with the ITP!  I'm glad that you wound up being ok Smiley  Do you have to take any meds to keep it at bay or are you fine for now?
 
I wouldn't think that it would hurt to try the melatonin and just see if it helps.  I went up to 9mg, and it didn't help me, but I was told I can do anywhere from 3-21mg, so I've considered trying again at some point and going up higher.  Some people here do swear by it, though!
 
Best of luck...I don't blame you for not wanting to use the prednisone again after having to use so much for so long!!
 
Lizzie Smiley
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Re: Melatonin ?'s...not usual ?'s
« Reply #3 on: Sep 4th, 2004, 12:35pm »
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You'll have about a 50-50 chance that it will help you.  Take one hour before planned bedtime.  Experiment somewhat on the dosage between 6-12 mg's.  My dosage was 9mg. You can buy it at GNC or other vitamin store in the 3mg tablet size.  Some people combine the extended release and the immediate release together for their dosage.  Melatonin might take a week or so before benifits will be noticed.
 
Good luck,
 
John
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Re: Melatonin ?'s...not usual ?'s
« Reply #4 on: Sep 4th, 2004, 1:32pm »
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Helped me immensely during the night.  
Has done nothing for the day except help me be more rested.
Definitely think it is about experimentation. The first time I did it I still got slammed at night only I was too groggy to even find my abortives. It was weird.
 
Anyway, I tried it again and stayed with it and although I still get hit here and there during the day (fingers crossed) I can honestly say that I've only had 4-5 night visits in the past month.
 
Sorry about all the other stuff you've gone through.
I hope you find a way to catch a break and get relief.
 
Eric
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Re: Melatonin ?'s...not usual ?'s
« Reply #5 on: Sep 4th, 2004, 1:34pm »
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Thanks for the help.  My ITP is in remission.  Kinda freaked me out when it happened.  I went to the doc that day because the whites of my eyes were red and I was urinating blood.  He gave me a blood test and said that he would call when the results were in.  I went home and was going to wait for the call.  He called before I even got home and said that I was to go to the hospital, not drive, not brush my teeth, bump into anything and if I got into an accident on the way there to tell the ambulance that I had ITP.  I had no idea what that was and it freaked me out.  They put me on the oncology floor and my doc didn't get there for about an hour.  The longest non-CH hour of my life!  I was in for 3 days, the nurses said they had some blood clotting med at the nurses' station, if I started to go "out" they were to inject me and call code.  I found this out after I was being released.  My ITP has been in remission for 2 1/2 years, no meds but I get a blood test every 4 months.  No more contact sports, no paintball, it's golf, bowling and that's about it.  I'm going to try the melatonin because it seems better than chewing tinfoil.  LOL!! And after having these for 21 years, I know it probably won't work but might as well give it a shot!  Thanks, again for all the info!
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Re: Melatonin ?'s...not usual ?'s
« Reply #6 on: Sep 4th, 2004, 8:11pm »
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Hi Tom,
 
You sure sound like you've been through alot.  Melatonin is one of the supplements I swear by, but (like already mentioned) it doesn't work for everybody.
 
For many, it really helps with the night hits.  I don't recall anyone saying it helps with the daytime ones.  Except ... if you've had a decent night's rest, it's probably a little easier to deal with the hits during the day.  For me, it really helps regulate my sleep cycle, which tends to be totally messed up during a CH cycle.
 
Regardless, it never hurts to try.  It's relatively inexpensive and sold OTC.
 
Good luck!
 
Kris
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