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Topic: howdy (Read 264 times) |
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kcakebread
New Board Newbie
Posts: 17
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Just joined. I was originally diagnosed with migraines 20 years ago, but my doctor changed that diagnosis two years ago. Though my symptoms match cluster headaches perfectly, I don't have any of the usual risk factors. I'm female, I don't drink or smoke, never had a head injury, etc. I'm 7 weeks into my latest episode and getting desperate. This is the longest episode I've experienced. I'm looking for regional information on clinics, etc.
Thanks,
kfc
aka Sleepless in Silicon Valley, California
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walkertexasranger
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Posts: 30
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Re: howdy
« Reply #1 on: Jul 14th, 2006, 2:04pm » |
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Hi KFC,
Sorry to hear you are struggling!! Glad you finally got a correct diagnosis, that is a big part of the battle.
If you can stand it, start reading as much here as you can about your options for releiving the pain as best you can yourself - until you can get to a doc.
The Kudzu, Taurine (Red Bull), O2, and Melatonin are all OTC - I picked up every one in one stop yesterday at the Vitamine Shoppe here in Houston.
What was perescribed to help you deal with the pain when you were diagnosed?
We're here to help.
Mark
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| « Last Edit: Jul 14th, 2006, 2:04pm by walkertexasranger » |
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kcakebread
New Board Newbie
Posts: 17
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Re: howdy
« Reply #2 on: Jul 14th, 2006, 3:40pm » |
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Thanks for the support. I've been researching the details and alternatives, in part to help educate my doctor. That's how I ended up here. It is encouraging to find people who understand why I might be able to take 40 minutes of excruciating pain every night.
After the cluster headache diagnosis, I was prescribed propanalol for prevention and imitrex for pain. The Imitrex continues to work okay if I wake up in time, but the Propanalol knocked me on my butt. I've tried Elavil, beta blockers, Relpax, midrin, and calcium channel blockers. I still use Imitrex for pain relief, but the preventatives are too restrictive for me. I have a job (breadwinner), a commute, and a six-year-old, so I can't deal with a lot of the side effects. I've also tried chiropractic, accupuncture, feverfew, marijuana, self hypnosis... Sigh.
kfc
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walkertexasranger
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Re: howdy
« Reply #3 on: Jul 14th, 2006, 3:49pm » |
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KFC,
I may be in the minority, but I have only used Midrin exactly the way I have used the Imitrex, just as an abortive once you feel the pain coming on. I can't imagine it working as a preventative...
I also tried the Elavil and it did cut the cycle time down from 8 weeks to maybe 4 weeks, that was good. But, sure made me sleepy and I put on about 20 lbs during the time I was taking it. I did not take it constatnly, I just can't bring myself to stay on any meds inbetween cycles, so I always started it at the first hint of a shadow, when I new the cycle was going to be starting in the next two weeks. Probably why it didnt work better, but cutting the cycle in half was good enough!!
Nothing like having your cycle stop and then having to lose 20 lbs every time (it was worth it though). 
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alchemy
CH.com Alumnus
New Board Hall of Famer
get out of my head
Gender:
Posts: 1639
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Re: howdy
« Reply #4 on: Jul 14th, 2006, 3:50pm » |
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Hey kfc, sorry your hear but there's alot of help for you here. I tried to post a link didn't work. but I google searched your area and there are some headache clinics in your area. keep us posted
jim
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Guiseppi
CH.com Alumnus
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Re: howdy
« Reply #5 on: Jul 14th, 2006, 3:54pm » |
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Hi and welcome! The risk factors you speak of are really not applicable anymore. We now have a vague understanding that it's a screwed up hypothalumus....probably spelled that wrong. Girls get them as much as guys, doesn't require somebody smack you in the head to get em!!!
Try and get your doctor to prescribe oxygen for you, read the link on the left to use it correcly. Needs to be high flow, non re breather mask. After 28 years and 10 million different meds oxygen still stands as the best abortive for me.
I use lithium as a preventative. I'm in law enforcement so I'm limited as to what meds I can take. I use 1200 mg a day when on cycle. I use imitrex too but only if oxygen is unavailable or for the rare times the oxygen won't beat it down.
I'll stop yakking now but welcome to the site, you'll find some neat people here.
PS: stay away from weed when on cycle, almost unanimous consensus it will bring on a new attack or worsen an existing one.
Guiseppi
Guiseppi
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JeffB
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Wide open till you see God, then brake
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Re: howdy
« Reply #6 on: Jul 14th, 2006, 4:08pm » |
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Welcome,
Sorry you had to find a place like this but you'll be glad you did. There is a cornicopia of information here, unfortunatley most of them are at the convention. Looks like you've tried alot of stuff. Those calcium channel blockers help between cycles along with the indocine and prednizone. I'm pf right now but am taking Verapamil. As far as the weed goes, it doesn'r trigger anything for me. I can set a watch to my clusters when I'm in a cycle. And lets face it, I live in N.California and we have some pretty good stuff here. I find it helps me relax between hits.
Good luck!
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" It's been my experience that people who have no vices have very little virtues."
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Weatherman
New Board Junior
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Posts: 57
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Re: howdy
« Reply #7 on: Jul 14th, 2006, 8:28pm » |
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Hi KFC
Sorry you're in pain but you've found a very special place! I'm new here too and the info I've found here has been a godsend!
I'm in my second cycle since being properly diagnosed. This is the second time my doc put me on prednisone and it's worked very well both times to break the cycle....very well. I'm on a 3 week taper...80mg for 1 week, 60mg for 1 week and 20mg for 1 week. Today was my first 20mg dose. No CH for almost 2 weeks!! And I was getting hit very hard before I started the pred.
Using what I've learned here I'm also taking 6 Nature's Way kudzu per day, 1000mg of Taurine supplements per day and 9mg of melatonin before bedtime.
I have had the crappy prednisone side effects....anxiety, grouchy, gaining weight but that seems to be fading with the smaller doses now. No other side effects at all. These side effects are no fun but it has been more than a fair trade! And I have no problem functioning day to day at all. Oh, I have O-2 also and it works great when used correctly but I havn't needed it for almost 2 weeks. I can't do imitrex due to a heart condition.
I'm sleeping through the night with only a light shadow from time to time during the day.
So it's a classic approach from the doc with the prednisone coupled with the otc supplements i found here...a plan that's worked great for me.
I know we all respond differently to different plans but I thought I would share my very successful plan in case you might want to give it a go.
I wish you all the best!!
Doug
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Charlotte
CH.com Alumnus
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I love YaBB 1G - SP1!
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Re: howdy
« Reply #8 on: Jul 14th, 2006, 8:46pm » |
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Welcome aboard, sleepless. What does kfc stand for? Are you another Kathy?
I tried propanolol twice. the first time was bad, but the second time was a time release 60 mg and was moderately helpful.
I'm using liquid kudzu extract. It takes awhile to get in your system and, for me, it lowers the pain from the top so that I am more functional. I get it by mailorder.
I'm the type who reads & thinks things to pieces before I try anything. I'm just now trying Red Bull and I've been here since February.
If you're in Silicon Valley, I'm just over the foothills, in Patterson.
Once again, welcome aboard.
Charlotte
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Ladybug314
New Board Newbie
The Devil Made Me Do IT!!!!!
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Posts: 19
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Re: howdy
« Reply #9 on: Jul 15th, 2006, 12:10am » |
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hI KFC,
I have been diagnosed with cluster headaches this week and what a very long week it has been. I live in the Silicon Valley as well, I was first diagnosed with a sinus infection after having a Cat scan done there was some light mucus they said. So I went to my regular MD who has me on percacet and another medication I take at night time. Im hoping this works. But the headaches still keep comeing. YIKES  . It's great to know that there is somebody close to home that knows what were going through..
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What did we do to deserve such pain?
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kcakebread
New Board Newbie
Posts: 17
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Re: howdy
« Reply #10 on: Jul 23rd, 2006, 12:53pm » |
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Thanks to everyone for the support and advice. BTW, the K in kfc is for Kimberly.
You can see my postings on the medications board to see what has been happening. Take special note of the problems I have been having with Topamax.
kfc
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Yorky
CH.com Alumnus
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learn to meditate (or just sit & do nowt)
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Re: howdy
« Reply #11 on: Jul 23rd, 2006, 8:09pm » |
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do risk factors contribute?
or is it just a head phenominam?
ps cant help with clinics(england)but i am sure someone will
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today is a gift.....thats why it is called the
present.
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kcakebread
New Board Newbie
Posts: 17
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Re: howdy
« Reply #12 on: Jul 26th, 2006, 6:16pm » |
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can't comment on risk factors, as I don't have any. but alcohol is a very definite trigger for me. I never drank all that much to begin with, but now I don't drink at all. I'm the perpetual designated driver.
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kevinpix
New Board Veteran
treat others with respect
Posts: 184
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Re: howdy
« Reply #13 on: Jul 26th, 2006, 10:15pm » |
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Howdy. Oxygen worked best for me, too. I had a carrier on wheels. With me all the time, just in case. Hope you have pain free days to come. kevin.
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