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Topic: New Here (Read 310 times) |
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starlight
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Hi everybody...
I posted a few in other section but just thought I would introduce myself here also. I am 32 years old (female) and have had episodic cluster headache cycles for 18 years since I was 14 years old. I used to get them every year starting Nov. 9. They have always lasted two months. Then when I was 25 they switched to the summer (still two month long cycles)--so that is why I am here folks!!! (b/c I am one week into cycle right now).
I always just suffered through these headaches cause docs thought I was "crazy" or just shrugged and said sorry when I was younger--I think that is when they thought that only hit middle-aged men got them and I didn't quite fit that profile.
Six years ago I finally got oxygen. It helps me at the start of a cycle. But my headaches have gotten "out of control" over the years (according to my headache doctor that I got recently) and they start breaking through full force through the oxygen. They also typically work up to hitting me during all REM--so that I get to the point in the cycle where I am getting them 90 min into sleep and then basically every time I fall back asleep--they build to about 5 a night/morning but usually two of extreme intensity.
Right now I am scared but very happy that my new headache doc is seeing me Monday. He is the only guy who ever took a full history of my headaches. He also told me to take 9mg melatonin/night the first time I got a "warning" that I was beginning the cycle. I have done this and it has worked for the first six days of cycle--for that I am endlessly grateful. Unfortunately, these damn headaches of mine of very stubborn--last night they are succeeding in breaking through during REM--3 am and then when I finally fell back asleep 5:45 am. So I'm scared but the pain was much lower in intensity--just got only 2 1/2 hrs. sleep but if it stays like this it will be great. I am afraid of headaches regaining their power--I can kind of "feel" that happening.
Tonight I will increase to 12 mg melatonin and today I am drinking a ton of water every hour. I am sick of these damn headaches after almost 20 years and I want to get rid of them--I refuse to give in this cycle.
Anyway, it is good to meet you all but sorry we all share this curse in common.
Would love to here from anyone. And would love to here any experiences with melatonin b/c I am willing to experiment with doses of the melatonin etc. Thanks you guys and wishing you all PF nights (and days)!!!
Starlight
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Summerbabe
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Re: New Here
« Reply #1 on: Jul 14th, 2006, 10:45am » |
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 Hey Star, welcome , sorry about your pain level, I too in cycle, 3-4 hits a night, break through pain with o2, at witts end, I am getting Melatonin today heard from a few caring souls here that it works...I will let you know on my end. I am in my 6th week of torture . Have had two full nights sleep but that was last week only to find a tidal wave of pain next hit, came on so fast , scary stuff, also red bull works for me as an abortive , many of us here use that as well..caffeine helps but yes hydrate yourself with water as much as you can . Caffeine depletes moisture as I am sure you know this. We are here to help you , guide you, support you, you are not alone, and I know how miserable this gets..hang tough, pm me anytime...all my best , Summer 
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alchemy
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get out of my head
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Re: New Here
« Reply #2 on: Jul 14th, 2006, 11:44am » |
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Hey Star, welcome aboard sorry you have to be here but glad you found this place. Alot of people here swear by melotonin if it's working go for it. Hang in there you'll get through this and we'll be here to help.
jim
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walkertexasranger
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Re: New Here
« Reply #3 on: Jul 14th, 2006, 1:09pm » |
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Star,
You must be my long lost fraternal twin, well close at least. I am 36 and have had these damn things for 18 years just as you have. I just started my cycle last Friday, and I am getting them at 3:00 and 5:30 in the AM also. Brutal these night ones are... If you are in Houston, you could come over and we could walk around the house together at 3 and 5 with ice on our heads. 
I just tried the Melatonin for the 1st time ever last night, but only 3 mg - didn't help. I will be upping it tonight. Sure can't hurt anything.
Just remember you are not alone in this and we'll get through this together!!!
Mark
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| « Last Edit: Jul 14th, 2006, 1:12pm by walkertexasranger » |
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jenrob2006
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AAAHHH! Make it stop!
 
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Re: New Here
« Reply #4 on: Jul 14th, 2006, 2:26pm » |
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Hi Starlight,
Sorry had to meet like this, but welcome. I started the melatonin a week ago. I still am getting hit once a night, but not above a kip 4 which is wonderful in comparison. I know how you feel about being scared to fall asleep. One night, after the second hit in 1.5 hours, I decided to stay up until I could no longer take the exhaustion and fell asleep 30 minutes before I had to wake up. No hit, since I never hit REM. I am no expert, but the 9mg of melatonin I am taking is really helping. Hope it works for you!
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JeffB
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Re: New Here
« Reply #5 on: Jul 14th, 2006, 4:10pm » |
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Hi,
Sorry for your pain!
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starlight
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Re: New Here
« Reply #6 on: Jul 14th, 2006, 6:39pm » |
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You guys and gals,
Thank you so much for welcoming me. Sorry we had to meet this way but it sure does wonders to talk to people who understand rather than getting a puzzled look or a "yeah, I had a migraine once" (not to downplay the pain of migraine).
Thank you all for encouraging me and offering reassurance--it definitely can feel lonely cause noone really understands why you feel so anxious during cycle.
Summerbabe--I am so sorry that you are having this kind of pain--I remember that point in cycle and it is very rough to say the least. Please please do try the melatonin--9mg is what my headache doc told me to take--worked like a charm for six nights straight. I am upping to 12 mg tonight to try to stop these breakthroughs that happened last night although it has greatly reduced the normal pain at 9mg but I feel I need to up it. I will let everyone know how that goes. It will probably help to know what works for everyone.
Walker--My long lost twin!!! I am in Massachusetts and I hope neither of us wake up at those hours tonight but I will send you lots of good energy if I do!!!
Alchemy--Thanks for the welcome and the encouragement with the melatonin!
Jenrob--I am so glad to hear you are having such good relief with the melatonin! It seems to have some miraculous properties. I can't tell you how glad I am to hear it helping people.
JeffB--Thank you too for the welcome!!!
We will all get through this together guys. I hope you all have a pain free night tonight. Well I will keep everyone posted about the melatonin--what dosage works etc. just b/c maybe it will help someone. Would love to hear what keeps working/doesn't etc. for you all too. Pain free Wishes, Starlight
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starlight
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Re: New Here
« Reply #7 on: Jul 14th, 2006, 6:53pm » |
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P.S. Walker,
You definitely might want to up the melatonin to like 9mg. Since we seem to be so similar with the cluster pattern--it worked so good for me (now I am going to up a little with these couple breakthroughs) but yeah, you might need a little more to beat these headaches. Don't give up. I will keep you in my thoughts for pain free nights. Let me know how it goes. Starlight
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Yorky
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Re: New Here
« Reply #8 on: Jul 14th, 2006, 8:58pm » |
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period ofsame as me, 10 years on- off not tried melatonin. 12 months without attack,but 5 weeks ago got an attack that lasted 4.5 hours,then for 3 weeks ,6-7 attacks a day, now down to one mild one every 2-3days,think im in remision . my medication:verippamil 100 mg 3 times a day ,sumatriptan 100 mg 3 times a day,100%oxygen during attack seems to control them.p.s dont let them win ,when period of attacks are happening during weeks/ months iv find if u try tokeep happy (phto albums/fav music/anything that gets you goose bumps)seems to ward off an attack...good luck luv.
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starlight
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Re: New Here
« Reply #9 on: Jul 15th, 2006, 6:24pm » |
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Yorky,
Thanks for the encouraging words--you are a sweetheart.
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walkertexasranger
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Re: New Here
« Reply #10 on: Jul 15th, 2006, 8:01pm » |
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Hey Sis!! 
Well, I upped the dose of the Mel to 12 mg last night and I missed the 11:30 and 3:00, but still got the 5:30, add a 7:00 but it was mild. So we will stick with the 12 mg as at least I got some sleep.
I have actually not had a HA now since 7:00 - so this is good. Having a shadow at the moment, but they dont even bother me anymore, I don't even need an aspirin or the like.
Hope you did better last night!!
Mark
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starlight
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Re: New Here
« Reply #11 on: Jul 15th, 2006, 8:48pm » |
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Walker--
I am so happy to hear you got some relief last night with the melatonin!!!
I thought about you today and wondered how you were doing--since we both hatched from the same egg  I am sorry you still got hit in the early morning--some people on the boards have said it can take up to a week for the melatonin to really start doing its job and some here have gone up to 18mg--
I am doing really good today--I upped to 12 mg last night cause I could feel "the beast" gaining ground on me--I was so happy that it worked I slept through the night--just had headache coming on at 7am when I woke up but just paced around and pounded water and it never built up to full-force.
So happy to hear you got some sleep and I hope it kicks in and gets rid of them all for you. I am seeing my headache doc on Monday (the guys got a good rep in Northeast) and I will see if he has any jewels of wisdom to share and let you know since we are twins
Hope you are PF tonight, Starlight
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FRANKYT1963
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Re: New Here
« Reply #12 on: Jul 16th, 2006, 12:04am » |
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HEY STAR  WELCOME, SORRY TO HEAR ABOUT YOUR PAIN  . ABOUT 2 WEEKS INTO CYCLE  , BEEN GOIN THROUGH THIS FOR 26 YEARS  , HANG IN THERE, DO NOT LET IT GET YOU DOWN , THERES ALWAYS SOMEONE TO TALK TO. 
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HANG IN THERE!!!
RED BULL RULES!!!
CYCLES SUCK!!!!!
BEST OF LUCK!!!!!
FRANK
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Yorky
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star
« Reply #13 on: Jul 16th, 2006, 10:09pm » |
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i star ,cant be long before u see your doc(good luck)im new myself but they all seem to be sweathearts..pain/free/nite/and/day.
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today is a gift.....thats why it is called the
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