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Topic: My CH dillemna (Read 649 times) |
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Miz_D
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My CH dillemna
« on: Sep 29th, 2007, 7:57pm » |
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Ok, I'll try to make this as concise as possible, I would really value other's opinions...
CH sufferer since 1999, went chronic almost immediately. Have taken the whole gamut of meds looking for that perfect (haha) cocktail. Meds make me episodic (Yeah!) and the last 5 years have survived on 1080 mg verapamil per day unless I begin to cycle and then I increase verap another 360 mg and take imitrex injections or spray as needed.
I just relocated from Vancouver, Canada with the best neuro to Maui, Hawaii and am now dealing with a new GP. I find out that my Imitrex is not covered on the medical plan I have and the Dr prescribes me Maxalt-MLT 5 mg orally disintegrating tablets which she assures me will work as effectively and as swiftly as Imitrex spray. Of course it doesn't... 
So, my head's been acting up lately as I try my yearly cutting down on meds, reducing my verap to see if I can move to a lower dosage. Doesn't happen and although I can usually just increase the dosage for a day or two to get back on track, this time is different.
Basicly, I am getting headaches (rebound?) every time I take my verap and I am assuming it isn't working anymore which I know can happen. Ok, so at this point, I haven't taken anything since 6pm last night and except for a slight shadow, am feeling ok. What I am wondering is if I should just not even bother to take any verap since I am going to get headaches anyways and I have been on it for so many years now, maybe it's time for a change? Has anyone had this experience? and if so, can you please share your opinion with me? I am seeing that GP on Monday with a demand for my Imitrex no matter what and a referral to a neuro...I can't stand dealing with Drs. that have no clue about CH and won't even check out this website!
Sorry about the ranting...got a Ch panic a-brewin... 
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Linda_Howell
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Re: My CH dillemna
« Reply #1 on: Sep 29th, 2007, 8:11pm » |
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MizD, Please do not stop any meds you are taking without consulting your Dr. first.
There are drugs that do cause rebounds, (narcotics for instance) but I have never heard of Verapamil doing that. You haven't said anything about using 02 to abort a headache. That would be the 1st. thing I would ask a new Dr. about. It is cheap, effective, safe with virtually no side-affects and it works for about 70 to 80 % of us and in about 10 to 15 mins. In the meatime try some strong coffee or get one of the energy drinks and chug it at the 1st. sign of an impending attack.
Linda
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Miz_D
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Re: My CH dillemna
« Reply #2 on: Sep 29th, 2007, 8:22pm » |
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Hi Linda,
Thanks for your reply...O2 has not been something that has worked well for me, although I did use it with very limited success when I was overseas and could not get Imitrex easily.
The thing is, if the Beast is going to get me with or without meds, I feel that I may as well not have the side effects caused by such a large dosage of verap. It may take months before getting in to see a neuro and this GP has already displayed her incompetence (IMHO) regarding CH by insisting that I try this Maxalt instead of trusting that I would know my own condition and what works for me.
But I do understand your point and as I sit here wondering whether I should take some verap and if so, how much...well I must say that I am stymied as to what to do.
So glad I hit the site today though, haven't been here for a couple of years...so long I couldn't even remember my account name! haha Anyhow, I did get some new info ie: the caffeine/energy drinks and will head to the store to stock up today!
Thanks again and PFDAN to all of you!
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phil_h
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Re: My CH dillemna
« Reply #3 on: Sep 29th, 2007, 8:34pm » |
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Hell in paradise... no good... Insist on referral to neuro....print out all the info on oxygen to bring to md, insist on O2....... Print out the info on meds........ prepare your history of what you have taken and what has worked...... I felt I was taken more seriously when I brought my headache calendar and diary of sleep hours,work hours and shut in in pain time........Also ice packs , caffeine and red bulls are great helps.......... Never give up on insisting on appropriate care............ http://artonio7.com/CH_Pain_Cal_vert.pdf wishing you peace,comfort and the persistance to heal in paradise........pfdan's............ phil h
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phil_h
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Re: My CH dillemna
« Reply #4 on: Sep 29th, 2007, 8:35pm » |
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Sorry on the o2.... I'm a slow typer phil h
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Linda_Howell
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Re: My CH dillemna
« Reply #5 on: Sep 29th, 2007, 8:35pm » |
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Maxalt was NOT a bad choice for a Dr. to try:
http://www.ouch-us.org/medications/medications.htm
However if it didn't work for you then it didn't, and any Dr. worth his fee would then try another med. Again I say to you..... please please do not stop taking Verapamil, or lowering it, without checking with your Dr. first. It could have serious consequences above and beyond your headaches. Really!
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Miz_D
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Re: My CH dillemna
« Reply #6 on: Sep 29th, 2007, 9:01pm » |
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Thanks Linda and Phil,
I really appreciate your feedback!
Linda, thanks so much for the link and I'm hearing what you are saying about the meds...I don't like it but I hear it... 
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Miz_D
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Re: My CH dillemna
« Reply #7 on: Sep 29th, 2007, 9:02pm » |
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...or I should say..."I'm listening!"
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Linda_Howell
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Re: My CH dillemna
« Reply #8 on: Sep 29th, 2007, 9:16pm » |
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Good. lol....now, if you need anything else, just pm me please.
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nani
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Re: My CH dillemna
« Reply #9 on: Sep 29th, 2007, 9:20pm » |
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Hi MizD. Welcome. All good advice... I will only add that stopping verapamil may cause severe heart problems. It's a med that should be tapered off from, and slowly at that. Please talk to your dr.
Good for you listening to Linda. She's a smart cookie.
pf wishes, nani
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Miz_D
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Re: My CH dillemna
« Reply #10 on: Sep 29th, 2007, 9:25pm » |
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Ok, so what I have done is take 3 verap (360 mg) which has been my regular dosage for the past few years. I find it ironic that for the first time I have gone for 21 hours without meds or headaches. Usually if I am even 1 hour late with meds I will get one. But now, every time I take my verap the beast rears its ugly head...geez. So lets see how this works over the next couple of hours or so.
Linda, can you or anyone else tell me why I shouldn't stop taking verap suddenly? Or point me to a link that would explain it? I'm so used to dealing with the side effects of taking meds, I don't even think of what might happen if I stop except that I will get headaches which happens anyways. I know stopping steroids abruptly is not good but what's up with Verap?
Sure hope I'm not being a pain in the ass...I haven't been in this situation in my CH career so I feel like I'm flailing a little... 
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Linda_Howell
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Re: My CH dillemna
« Reply #11 on: Sep 29th, 2007, 9:41pm » |
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O.K. so Nani and I have answered this question in PM's to you but maybe it bears repeating. Do not stop or lower or raise any meds without consulting a Dr. first.
MizD, you are NOT, repeat...NOT being a pain in anyones a$$. This is what we are all here for. To give you and others the benefit of our experience and set you on the right path to helping yourself deal.
My e-mail is there for you as well as others. Ask away. Vent away. I am here and I listen very good. 
Linda
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E-Double
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Re: My CH dillemna
« Reply #12 on: Sep 30th, 2007, 12:19am » |
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you really need to taper off of verap SLOWLY!
I see one of the top docs in HA and he had me taper at a rate of 40mg per week which took me 15 weeks.
I am chronic as well and just had enough of all the meds
good luck and be careful
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Miz_D
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Re: My CH dillemna
« Reply #13 on: Sep 30th, 2007, 1:58am » |
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I just wanted to say thank you to everyone...I'd forgotten how supportive this board can be (haven't been at the site for a couple of years) and how great it is to actually talk to people who understand CH.
I really, really appreciate your feedback and support.
Update: I took my verapamil and didn't get a headache...yeah!!!!!!
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sandie99
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Re: My CH dillemna
« Reply #14 on: Sep 30th, 2007, 3:39am » |
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Miz,
I'm so sorry that the beast has been visiting you. I'm glad that you decided not to get of verap just like that...
I've been off doc subscribing meds since 2005 myself, but if I'm not mistaken, my then-neuro said that he'd find me from intensive care unit if I'll stop taking it too quickly.
The docs might not know what med/treatment will work for your ch, but they do know about the consequences and side effects, so it's worth taking it seriously. And I'm glad that you took the good advices given in here.
I wish you lots of PF time,
Sanna
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Katherinecm
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Re: My CH dillemna
« Reply #15 on: Nov 10th, 2007, 2:56pm » |
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on Sep 29th, 2007, 8:11pm, Linda_Howell wrote:
MizD, Please do not stop any meds you are taking without consulting your Dr. first.
There are drugs that do cause rebounds, (narcotics for instance) but I have never heard of Verapamil doing that. You haven't said anything about using 02 to abort a headache. That would be the 1st. thing I would ask a new Dr. about. It is cheap, effective, safe with virtually no side-affects and it works for about 70 to 80 % of us and in about 10 to 15 mins. In the meatime try some strong coffee or get one of the energy drinks and chug it at the 1st. sign of an impending attack.
Linda
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I second the consult your doctor first.
Verapamil and Imitrex both cause rebounds for me while Lortab doesn't, so please trust your instincts on this and DON'T listen to anyone, not doctors or even fellow sufferers online over your own body. I am convinced that upping my verapamil dose despite the fact that it was making me worse not better was something that pushed me into being chronic, and I have had similar discussions with other chronics on this board. Please do as much research as you can, get as many opinions as you can, and RUN from those doctors with a god-complex and minimal understanding who refuse to listen or do further research on your behalf.
Katy
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