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an open post to childinside
« on: Mar 3rd, 2003, 5:48pm » |
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dear melissa, i have been lurking in the background and not posting, which is something i do a lot of when the shit is hitting my fan. i only (with some notable exceptions) crawl out of the woodwork to try and at least do my bit in supporting the family here. well i think i need to have a couple words with you.....
in reading thru the "suicide" post i thought i sensed some anger from you in response to other peoples questions about your description of the timing and number of your attacks. please don't misunderstand and get angry.... NO ONE wants you to belong here!!!
and as comforting as it is to have a diagnosis, it sucks if it's the wrong one!!!! especially this one!!!
when i first came here there was a pissing (excuse my vulgarity but hey my head hurts) contest going on between some people on this board about migraine vs. clusters and who had what. the collateral damage of that contest almost chased me away. thank god it didn't!
you need to understand that what you are saying (30 a day) is so far away from the norm......... and i use that term very lightly here, that some of us can't help but think someone might be steering you in the wrong direction. i too am very abnormal as far as patterns and timing, and freq is concerned. ( i have 8 to 13 events a day)
.....ooooo "events"........i'm gonna coin thatn
anyway what i'm trying to say here is welcome ..
please hang around and share....
don't get mad at anyone.......their motives are good
please keep looking for answers!!!!!
nice to make your acquaintance..... tim
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eyes_afire
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Re: an open post to childinside
« Reply #1 on: Mar 3rd, 2003, 5:59pm » |
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Tim has a very good point. If you are getting 30 a day and they are of short duration, perhaps it is CPH (or maybe something else). Indocin is nearly 100% effective in treating CPH, and it's inexpensive. Therefore sometimes clusterheads question, because they care. We want you to find relief Melissa because we care. Perhaps it is CH, but you may benefit from trying a prescription from your doc for Indocin. Consult a good neuro. Hang tough, we're here to help you.
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CHILDINSIDE
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Re: an open post to childinside
« Reply #2 on: Mar 4th, 2003, 9:01pm » |
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i am not mad, and i did not get mad. i am sorry if i said something misleading. your are right, 30 a day is not the norm for ch. that is on the peak of my cycle, which last about 3 days. i go back to my neuro in april, and i had planned on asking him if it could be something else. i have been reading the board for a while, before i posted, and i realized mine is to an extreme. i hope and pray it is something else, and if it is not i will have to deal with this. it seems to be getting worse, over the past few months. sometimes i am afraid to be alone. i pray for relief, and if not, then the strength to handle it. thank you for your post, and concern. but i promise, i didn't get angry.
melissa
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Ree
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Re: an open post to childinside
« Reply #3 on: Mar 4th, 2003, 9:37pm » |
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`look what you guys did to melissa she doesnt capitolize anymore just like me...LOLOLOLOLOLOLOL melissa dont let these guys scare ya off... and i would mention to your neuro about the cph theory that some of the people here have... this doesnt mean you dont have ch..
its just a possibility... wouldnt be the first time this board has been right and a neuro was wrong. good luck honey... love ree
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juvy
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Re: an open post to childinside
« Reply #4 on: Mar 5th, 2003, 4:49am » |
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Childinside:
it sounds more like CPH then Cluster, my neuro confused the two for years. Indocid is a good med for CPH but It didn't work for me. Indomethacin works wonders for me.
Please let me know what the Neuro decides in April.
Cheers,
April
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CHILDINSIDE
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Re: an open post to childinside
« Reply #5 on: Mar 5th, 2003, 6:21am » |
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 i looked up the med indomethacin, and man there are a lot of possible side effects. can anyone tell me from personal experience, and at what dose.
melissa ;D
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Karla
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Re: an open post to childinside
« Reply #6 on: Mar 5th, 2003, 6:28am » |
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50mg should be enough to start noticing an improvement. The only side effect I noticed was it was hard on my stomach.
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Karla
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Charlie
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Re: an open post to childinside
« Reply #7 on: Mar 5th, 2003, 6:31am » |
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Charlie
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Woobie
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Re: an open post to childinside
« Reply #8 on: Mar 5th, 2003, 9:35am » |
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You Crack me up Charlie!! ;D
Welcome ChildInside!! Nice to meet you..
Tina 
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Opus
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Re: an open post to childinside
« Reply #9 on: Mar 5th, 2003, 9:49am » |
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Hey ChildInside,
I was wondering if your handle has anything to do with another condition you may have. It is one that I have personal experience with. I am not trying to be nosey or anything, just curious. You can PM me if you want me to clarify.
Opus 
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eyes_afire
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Re: an open post to childinside
« Reply #10 on: Mar 5th, 2003, 8:57pm » |
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Hi Melissa. I have tried indomethacin. Often times drug manufacturers list all possible side effects. In my opinion, indomethacin is safer than many of the typical CH treatments such as prednisone, topomax, imitrex, etc. From personal experience:
1. Biggest thing to watch out for is stomach irritation.
2. A far less common side effect is depression. I suffered from slightly depressed mood when taking it. Nothing real horrible, just slightly somber mood. I believe the incidence of this side effect is very low.
That's about all I can say. Since it is relatively safe and inexpensive it's a good thing to try before getting to some of the other CH meds. But make sure to consult your doc.
Good luck, I really hope you get some relief.
---- Steve, one of many...
Added: Sorry, forgot to mention, unfortunately indomethacin didn't help me. I don't have CPH.
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| « Last Edit: Mar 5th, 2003, 9:00pm by eyes_afire » |
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