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Topic: verap question? (Read 650 times) |
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CindyC
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My hubby is on verapamil for the first time. 2 weeks in and all was getting better. No IM injections for several days and no 02 for the last couple of days. We thought the phase was ending....
THEN...yesterday he had to have an injection...and off and on 02 all day! (note-he always has hic CHs in the day)
I am so disappointed! Is this fairly common while on verap...or is there a chance it is not working as well as we thought.
Just looking for a few opinions from the folks who know!!
Thanks
Cindy C
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thomas
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It did absoluteley nothing for me when I was on it. So if he's getting some relief I would stick with it. Wishing for PFNAD for him. Sometimes the beast rears it's ugly head real high just before he leaves for a while - that might be happening also.
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| « Last Edit: Dec 6th, 2003, 11:47am by thomas » |
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Prense
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Re: verap question?
« Reply #2 on: Dec 6th, 2003, 1:52pm » |
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on Dec 6th, 2003, 11:20am, CindyC wrote:I am so disappointed! Is this fairly common while on verap...or is there a chance it is not working as well as we thought.
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I think that if it is gonna work, it's gonna work. Maybe his dosage needs to be increased?
Chris
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violet
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Re: verap question?
« Reply #3 on: Dec 6th, 2003, 9:40pm » |
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It took me a little while to find a theraputic dosage. I started at 120 SR then moved up to 180, then 240, then 240 twice a day, then 360, then at last 360 twice a day. It's the only thing that works besides the oxygen.
Good Luck,
Vi
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CindyC
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Vi...
thanks for the info...
He started on 240, then went to 360.
But my question was...once it appears to be working...can you still have a bad day.
Yesterday was a step backwards...but today has been better.
Can the ch's overide the verap from time to time???
Or should we assume it is not working??? Well...not..'not working' cuz it is sure helping!
CC
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5-string
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Re: verap question?
« Reply #5 on: Dec 6th, 2003, 10:24pm » |
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Hi Cindy,
I went on Verapamil for the first time in sept. 240 twice a day for a week than once a day and I was fine. I stopped and it came back now I'm on 120(out of cycle) and aside from shadows I hav'nt had an attack for about 6 weeks. So I'm sticking to that for now. I can live with shadows.....although sometimes it's like chinese water torture. I hope this helps you,
Take care....Mark..
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Prense
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Re: verap question?
« Reply #6 on: Dec 6th, 2003, 11:21pm » |
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on Dec 6th, 2003, 9:54pm, CindyC wrote:working...can you still have a bad day.
Yesterday was a step backwards...but today has been better.
Can the ch's overide the verap from time to time???
Or should we assume it is not working??? |
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Some folks refer to "breakthrough" HAs...basically, the occasional CH attack even though you are taking an effective preventative. That doesn't mean the med has quit working...just a bad day as you described. 3 or more days like that in a row...then maybe the med is no longer working. One sure fire way to tell if the med is actually working is to attempt to taper down some and see how fast you get hammered. 
Hang in there...hopefully just a bad day and all will be well!
Chris
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CindyC
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Mark and Chris,
Thanks for the words of encouragement.
I wanted to think the verap was still going to work. So I think I will!
All is not lost...for tomorrow IS a new day!
Thanks again,
CindyC
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CJNine
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Hey Cindy C -
Here's what I know about verap from personal use.
1. I was taking verap (240 SR) initially for an occasional bout with irreg heart rate (happened maybe once a year).
2. After self-diagnosing and going to a neurologist about the periodic or episodic CH situation, he pulled me off of verap SR and put me on regular verap at double dosage (120 mg pills, 4x daily). He said the sustained release verap had no track record of helping CH.
3. I have been on 480mg verap for two years now. It seems to have shortened the risk period from four months to two months - but didn't prevent the attacks; just shortened the risk period.
Bottom line - enough progress to suggest it is worth trying. Hope it works for "hubby."
CJ
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violet
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Re: verap question?
« Reply #9 on: Dec 8th, 2003, 6:53pm » |
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The Verapamil helps keep the beast at bay, and without it I would be dead meat, but on occasion I still have a breakthrough cluster. I wouldn't go without it, though!
Vi
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jonny
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on Dec 6th, 2003, 11:20am, CindyC wrote:| Just looking for a few opinions from the folks who know!! |
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Have the Doc up the dose, if that dont work have the Doc add Lithium to the mix.
....................................jonny
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cbolony
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Re: verap question?
« Reply #11 on: Dec 9th, 2003, 9:07pm » |
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like jonny said add more verapamil.Itake 240 mgs 3x aday combo with depakaote 1000mgs 3x aday to keep the beast at bay
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Prense
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Re: verap question?
« Reply #12 on: Dec 9th, 2003, 11:27pm » |
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Also, consider the release...some find that only immediate release works for them. Typically, SR or ER is prescribed.
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wetdog2
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Re: verap question?
« Reply #13 on: Dec 14th, 2003, 3:21pm » |
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For a couple of cycles I went on Verapamil but never did it end a cycle. At best, maybe the headaches would skip a day or two. The constipation sucked, but what freaked me out was when my pulse dropped into the low-40s. My physician pulled me off of the stuff.
I spoke to a friend yesterday who's a pediatrician. When I told him we CH sufferers frequently take calcium channel blockers he was a bit alarmed. He says they are very serious drugs. If the drug worked better for me, I'd absolutely take it. I'm envious of those for whom it works.
Marty
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J.ten_Dam
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Re: verap question?
« Reply #14 on: Dec 15th, 2003, 1:20pm » |
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Hi Cindy,
My first question is is your hubby cronic or e[isodic.
I have used verampamiel up to 920 a day anfd it workt but somtimes I had a few break through. I am cronic and get used to the constent use of medication so have to take med holidays when it no longer works.
At the moment I take 12 mg melatonin and 2dayly 120 verampamiel I still get hit every day but have ocasional days with lighter attacks in anycase I nead to use Imigran less often and can usually cope with ice.
Wish you PFDAN
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wish you PFDAN
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maggie_may
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Re: verap question?
« Reply #15 on: Dec 15th, 2003, 2:39pm » |
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Hi Cindy,
I'm episodic and take 240mg verap a day when I'm in cycle. And, while I'm no expert on the stuff, I do find that it helps for the most part and keeps about 90% of my attacks at bay. There are the days that I have an attack, but I just consider it break-through.
But I think everyone reacts to their verap differently.
wishing you pfdans
maggie
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Strength does not come from physical capacity. It comes from an indomitable will. - Mahatma Gandhi
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