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Topic: Verapamil when are dr's told (Read 616 times) |
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Sax
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Verapamil when are dr's told
« on: Mar 15th, 2006, 8:51am » |
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Beast has risen for the first time in a year! I suppose I'm lucky to have such a long break really. Actually thought I had been cured.
Anyway my point is I have just had argument with doctor as he told me varapamil cannot be given for clusters! He proceeded to show me it's uses in the little pink drug handbook. I explained I had been perscribed it by a neurosurgeon in Brighton at which point he looked in my file and found 2001 letter when I was diagnosed. Hoorah!
My question is who updates the pink book? It was horrible to be made to look like I was an idiot. Shouldn't Dr's know what they are talking about by know?
Had to moan to someone thanks x
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LeLimey
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Re: Verapamil when are dr's told
« Reply #1 on: Mar 15th, 2006, 9:26am » |
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Hi Sax,
Your doctor is a wassock, verapamil is one of the most common preventative treatments used for CH. Refer him to this website, it was written by Professor Goadsby who is THE man for CH in the UK.
http://gpinfo.ouchuk.org/
Has he given you any abortive treatments such as O2 or imigran injections? If he was so busy with his little BNF he should have seen that the only licensed treatment for CH in the UK is the sumatriptan (Imigran) injections! (Its called Imitrex mainly on this site btw)
Verap will take up to two weeks to kick in as you know and I'm sure you know you need regular ECG's while increasing the dose don't you?
The other "normal" option is a short course of Prednisolone while waiting for the Vera to kick in, at high doses this can be quite effective in stopping CH in its tracks however CH DOES come back once you start to taper and the side effects from Pred can be nasty. You have to weigh up your options for yourself there my friend.
I'm glad you've got something, thats a start! What dose has he put you on too? I think that MAY just be all the questions I have for now... but don't bet on it! 
Take care
Helen
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seasonalboomer
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Re: Verapamil when are dr's told
« Reply #2 on: Mar 15th, 2006, 9:41am » |
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on Mar 15th, 2006, 9:26am, LeLimey wrote:Hi Sax,
Your doctor is a wassock, verapamil is one of the most common preventative treatments used for CH. Refer him to this website, it was written by Professor Goadsby who is THE man for CH in the UK.
http://gpinfo.ouchuk.org/
Has he given you any abortive treatments such as O2 or imigran injections? If he was so busy with his little BNF he should have seen that the only licensed treatment for CH in the UK is the sumatriptan (Imigran) injections! (Its called Imitrex mainly on this site btw)
Verap will take up to two weeks to kick in as you know and I'm sure you know you need regular ECG's while increasing the dose don't you?
The other "normal" option is a short course of Prednisolone while waiting for the Vera to kick in, at high doses this can be quite effective in stopping CH in its tracks however CH DOES come back once you start to taper and the side effects from Pred can be nasty. You have to weigh up your options for yourself there my friend.
I'm glad you've got something, thats a start! What dose has he put you on too? I think that MAY just be all the questions I have for now... but don't bet on it!
Take care
Helen |
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for those of us on this side of the pond:
• wassock:
Gullible fool, or Village Idiot, with elements of pomposity.
"He's a right daft wassock, thinks he knows it all but he can't tell cabbage from turnip!"
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seasonal boomer
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LeLimey
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Re: Verapamil when are dr's told
« Reply #3 on: Mar 15th, 2006, 10:50am » |
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Thank you for that Scottiepops!
I was going to call him a word that rhymes with "drat" but it gets censored I think you guys see it as a worse word than we do somehow!
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Karla
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Re: Verapamil when are dr's told
« Reply #4 on: Mar 15th, 2006, 12:21pm » |
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I am sorry you had to go through that awful experience. I would dump that dr and find another one asap. I never had any tests (ecg) when I took or started verapamil. Not sure if that is the norm or not. I assumed it was. Good luck dr shopping. Hope you find someone knowlegeable in ch.
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Karla
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Sax
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Re: Verapamil when are dr's told
« Reply #5 on: Mar 15th, 2006, 1:04pm » |
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Thanks for support,it's great to find this site! The quack has given me 240 MR verapamil as that is what I had before. Can't remember wether I built up to that or not. Thanks for link to Dr's letter I will take it to him tomorrow to hopefully educate him a bit. Think I will change doctors though lost a bit of faith.Thanks again all. Is this how you all normally reply or is it better to post another topic. sorry being a bit thick. 
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sandie99
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Re: Verapamil when are dr's told
« Reply #6 on: Mar 15th, 2006, 1:40pm » |
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Sax,
I'm so glad that you and I don't have the same doc! Mine gave me verapamil and 600mg/day (started with 200, then went 400 but those doses made me faint, whereas the high dose didn't give any side effects) of that did the trick and sent my chronic ch into remission. 
Best wishes & PFdays,
Sanna
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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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jon019
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Re: Verapamil when are dr's told
« Reply #7 on: Mar 15th, 2006, 9:52pm » |
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Hi Sax,
Very few meds that work at all for a good percentage of clusterheads. Verapamil is one. Have been pain free (almost) since 9/14 (possibly out of cycle but verap did seem to be a key). If this knothead is so unaware, get another!
Regards
Jon
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LeLimey
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Re: Verapamil when are dr's told
« Reply #8 on: Mar 16th, 2006, 5:41am » |
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Sax What I would suggest is you start a new thread for each different question. That way it keeps some semblance of sense to it (until I get in on the act of course!)
240mg is a starting dose, you will probably have to go to at least double that before it starts to take effect, some people get by on less, some require up to and over 1000mg a day but the majority seem to sit in the middle ground between 480-720mg a day. The "rule" is stop at the point it takes effect for you not anyone else!
As with everything else about CH we all seem to have our very own designer beast setting his particular mark in a one-of-akind way on all of us.. lovely innit?
Hope this helps a bit, don't forget about the ECG's now will you?!
Take care
Helen
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llreed
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Re: Verapamil when are dr's told
« Reply #9 on: Mar 17th, 2006, 7:44pm » |
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Wow -
Not sure about the little book but it came highly recommed from my doc. been pain free since Jan. 30th. Doc. liked the med due to the fact it can be ramped up
on the first onset and seems to provide relief for most of his patients. Sorry he made you feel like an idoit. Good luck finding a new doc. sounds like you need one.
PF Wishes,
llreed
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mynm156
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Re: Verapamil when are dr's told
« Reply #10 on: Mar 17th, 2006, 11:38pm » |
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GEEZE... Talk about being stuck inside the box. Sounds like he would be lost without his instructional booklets.
Good Vibes
MYNM156
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burnt-toast
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Re: Verapamil when are dr's told
« Reply #11 on: Mar 20th, 2006, 8:00am » |
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Verapamil - I don't start or end a day without it.
Makes you realize how little some docs. know about treating this condition. Most CH treatment references have it near the top of the preventative list. Two to five minutes of research is all that's needed.
Tom
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