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Topic: CH Inexperienced Doctor (Read 823 times) |
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Neetch
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CH Inexperienced Doctor
« on: Mar 22nd, 2005, 12:00pm » |
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Hi all, I am new to this site so bear with me if I ask a silly question...or two. I am presently on day 30 of this cycle. This is only the third cycle in my life. The last one started in November 2001 and lasted about a month. I'm not sure if the Propranolol and Zoloft that my primary physician put me on back then helped to end the cycle or if it just ran its course and ended on its own. Here I am 4 years later and he has me taking Zoloft again after a week on propranolol that did nothing. The Zoloft doesn't seem to be doing anything either. I've read about many of the other preventive and abortive treatment options (prednisone, ergotamine, etc.) here and on other sites. I go back to the doctor tomorrow. Should I talk to him about other treatments, ask for referral to a neurologist, or just ride it out for another week and see if it ends? After reading about some of your patterns I consider myself soooo lucky to have had 4 years without pain. Thanks for any advice. Neetch My question is about my doctor...
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thomas
CH.com Alumnus New Board Hall of Famer
"Hit like a phillips head into my brain."
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Re: CH Inexperienced Doctor
« Reply #1 on: Mar 22nd, 2005, 12:03pm » |
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on Mar 22nd, 2005, 12:00pm, Neetch wrote: DEMAND A referral to a neurologist... |
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Religion and sex are powerplays. Manipulate the people for the money they pay. Selling skin, selling God, the numbers look the same on their credit cards. Triptans cause rebounds. Learn it, believe it, live it. I use triptans as the absolute LAST RESORT when treating my CH.
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BarbaraD
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Re: CH Inexperienced Doctor
« Reply #2 on: Mar 22nd, 2005, 12:19pm » |
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Agree -- get thee to a neuro..... Hugs BD
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What don't kill ya, Makes ya stonger!
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E-Double
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Are we ourselves?
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Re: CH Inexperienced Doctor
« Reply #3 on: Mar 22nd, 2005, 12:21pm » |
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Here is a great resource to know like the back of your hand http://www.brightok.net/~mnjday/chtherapy.pdf It will present the appropriate treatments that you should seek and the doctor should know!!! Wishing you the best !! Eric
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I can't believe that I have to bang my Head against this wall again But the blows they have just a little more Space in-between them Gonna take a breath and try again.
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jokrs2
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Eventually He will make us pain free!
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Re: CH Inexperienced Doctor
« Reply #4 on: Mar 22nd, 2005, 1:03pm » |
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GREAT advice from all previous posts. Ditto. 1 day of suffering is 1 day too many. Blessings and vibes your way. Joe
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Given strength, courage & a sound mind!
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Neetch
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Posts: 3
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Re: CH Inexperienced Doctor
« Reply #5 on: Mar 22nd, 2005, 1:26pm » |
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Thank you all for the advice. Eric - I've read and printed the article on treatments...lotsa stuff there that I didn't know. Guess it's time to see another doctor. Thanks!
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sandie99
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Re: CH Inexperienced Doctor
« Reply #6 on: Mar 22nd, 2005, 1:29pm » |
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I hope things work out just fine for ya! Good neurologist is a piece of gold... Best wishes, Sandie
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CH happends, Live anyway! PF days to us all!
"Do what you can and let God take care of the rest. Leave your heart wide open and always wish for the best" (Sanna Hillu)
"No matter how far out your dreams are, it's possible" (Marketa Irglova)
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don
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Re: CH Inexperienced Doctor
« Reply #7 on: Mar 22nd, 2005, 5:00pm » |
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I highly recommend Dr. Brian Lieberman in Norwood MA.
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pubgirl
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Re: CH Inexperienced Doctor
« Reply #8 on: Mar 22nd, 2005, 6:29pm » |
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I highly don't recommend ergotamine unless you fancy a bout of gangrene after using it for too long Actually I'm serious Neetch, ergotamine is a dirty drug to use only if other abortives don't work, hopefully we've moved on a bit from taking rye fungus! Wendy
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unsolved1
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Re: CH Inexperienced Doctor
« Reply #9 on: Mar 22nd, 2005, 6:51pm » |
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huh ? DHE is one of my favorite drugs Unsolved
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pubgirl
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Re: CH Inexperienced Doctor
« Reply #10 on: Mar 22nd, 2005, 6:59pm » |
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Unsolved You always bloody catch me with loose comments don't you you bugger What I mean is ergotamine as someone's daily abortive as you well know DHE has its place in our armoury, ergotamine only has a place if the main recommended aborts don't work/can't be used. Wendy
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TonyG1
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Re: CH Inexperienced Doctor
« Reply #11 on: Mar 22nd, 2005, 7:02pm » |
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Ditto on what others have said Neetch ... Neuro knows best (at least the good ones). I've found that you have to tell the GP what you want -- I didn't really ask my regular doc for a referral but rather told him I wanted a referral to a Neuro. It was that easy.... had an appt. with the Neuro in about a week.. Best Wishes for find a good doc and pain free time!! Tony
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Bob P
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Shut up Bob!
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Re: CH Inexperienced Doctor
« Reply #12 on: Mar 22nd, 2005, 7:08pm » |
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I find cafergot has it's place when your sucky insurance company won't cover other meds. It's cheap and effective. I've used it for 30 years worth of episodic attacks and always keep a jar of a couple hundred tabs on hand. Try to take away my cafergot and you die!
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Mrs. Barlow, I never, and I repeat never, ever pissed in your steam iron.
"SHUT UP HUB!"
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unsolved1
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Re: CH Inexperienced Doctor
« Reply #13 on: Mar 22nd, 2005, 7:22pm » |
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lmao Unsolved
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maria9
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Re: CH Inexperienced Doctor
« Reply #14 on: Mar 22nd, 2005, 7:27pm » |
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Hey, I feel like one of those CH dinosaurs here because I have only used cafergot , no imitrex injections for me or zomig pills, but I think the shrooms worked better than the other abortives on the last cycle. Just my 2 cents. Marsha
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"All you have to do is the best you can. A high wave comes, a crashing wave comes, a gentle swell follows. Whatever comes, stay in your boat. And enjoy the ride. And row." Peggy Noonan
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pubgirl
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Re: CH Inexperienced Doctor
« Reply #15 on: Mar 22nd, 2005, 7:50pm » |
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I know you've posted this before Bob about taking Cafergot for years, but are you sure you've got all your extremities intact. Just check and see for me would you? W P.S. Marsha, sounds like your doctor is the Dinosaur! Out of interest, I think Imigran is a synthesised form of the part of Ergotamine which works to abort headaches so you can have the good bits without the damage to your circulation that long term use of ergotamine has. Someone will probably explain the techy bit, but it was discovered that Ergotamine was good for migraines and the drug companies saw lots of money to be made and developed Imigran (I think)
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« Last Edit: Mar 22nd, 2005, 7:55pm by pubgirl » |
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Neetch
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Re: CH Inexperienced Doctor
« Reply #16 on: Mar 23rd, 2005, 10:41am » |
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Thanks again everyone for all of the help and advice. It's a pretty daunting road to travel alone. I'd much prefer to see a doc that knows something about CH rather than trying to educate one with the info that I've found here. Hey Don - Thanks for the name of Dr. Lieberman. Hopefully he can see me soon...very soon. Peace, Bill
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Gator
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Re: CH Inexperienced Doctor
« Reply #17 on: Mar 24th, 2005, 10:50am » |
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on Mar 23rd, 2005, 10:41am, Neetch wrote:Thanks again everyone for all of the help and advice. It's a pretty daunting road to travel alone. I'd much prefer to see a doc that knows something about CH rather than trying to educate one with the info that I've found here. Hey Don - Thanks for the name of Dr. Lieberman. Hopefully he can see me soon...very soon. Peace, Bill |
| Unfortunatly dude, unless you draw a good one, you may end up teaching any doctor - even a neurologist about ch. Good luck.
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mynm156
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Re: CH Inexperienced Doctor
« Reply #18 on: Mar 24th, 2005, 1:26pm » |
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Yeah a Nuero is your best bet but not a cure all. I have found that I have to be the strong and DEMANDING with the Doctors. You are your own best bet. Learn all you can and work with your Doctor. There are not silver bullets with Clusters and not two of us are exactly alike. What works for some wont for others. So learn the current treatment and dosages used. Then dont let them Jerk you! Good Luck. Your Brother in Pain MYNM156
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"Half of the modern drugs could well be thrown out of the window, except that the birds might eat them."
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