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DannyV
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When Verapamil Stops Working
« on: Apr 15th, 2007, 7:39pm » |
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I asked this question in another thread ,but am hoping for more feedback.
Verapamil was the answer for me. Always stopped a cycle. 5-6 good years. Imitrex ALWAYS aborted an attack.
6 years ago [or so], attacks became relentless and the verapamil did less and less. Sometimes now even Imitrex inj. do'nt kill it.
Has anyone else [like me] had great success with verapamil only to have it slowly stop working well? If so, what then did you [hopefuly] find to work just as effectively as a preventative?
Thank You--Danny
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ClusterChuck
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Re: When Verapamil Stops Working
« Reply #1 on: Apr 15th, 2007, 8:03pm » |
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What level were you taking? Maybe you just need to up your dosage?
Verapamil used to work GREAT for me .... I hope you don't get like me. I have not been able to find my silver bullet .. Nothing works, as a preventative, for me anymore ...
Chuck
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DannyV
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Re: When Verapamil Stops Working
« Reply #2 on: Apr 15th, 2007, 8:22pm » |
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I am still taking 240 mg 3-4 times a day. It went up over time.
It worked for you Chuck only to, over time, be less effective? Then what? No luck yet?
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ClusterChuck
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Re: When Verapamil Stops Working
« Reply #3 on: Apr 15th, 2007, 8:42pm » |
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Mine didn't gradually taper off. It just quit working. That was about four years ago.
I have sure tried PLENTY of things since then, but to no avail. One day I WILL find a cocktail that will work for me. Till then, I have my oxygen ...
Chuck
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DannyV
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Re: When Verapamil Stops Working
« Reply #4 on: Apr 15th, 2007, 9:14pm » |
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Thank you Chuck. How's the Imitrex inj. work for you?
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Brew
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Re: When Verapamil Stops Working
« Reply #5 on: Apr 15th, 2007, 9:17pm » |
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on Apr 15th, 2007, 8:42pm, ClusterChuck wrote:| One day I WILL find a cocktail that will work for me. |
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Chuck - Have you ever done the Sansert thing? It is what started keeping the beast at bay for me when verapamil became ineffective.
Bill
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Guiseppi
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Re: When Verapamil Stops Working
« Reply #6 on: Apr 15th, 2007, 10:48pm » |
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I tried verapamil many years ago at what I now know was too low a dosage. It didn't work so my neuro switched me to lithium. I'm 47, male and weigh about 190, and am episodic. When my cycle starts, I do the pred taper, and start up the lithium. Over a 5 day period I ramp up to 1200 mg a day. It requires several blood draws the first 2 weeks then just occasional blood draws to check levels.
Lithium has been very effective for me for many years now. I use 02, oral cafergot and the occasional imitrex jab for when I'm really in trouble. Lithium might be worth a try, just don't tell your friends you are on lithium, they start talking real softly around you!!!! 
Guiseppi
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Re: When Verapamil Stops Working
« Reply #7 on: Apr 15th, 2007, 10:50pm » |
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Verapamil never did work for me ... but I couldn't get to a higher dose that may have helped. The highest I got to was 400mg per day ( and that about killed me ) 
Hopefully your meds will start working better again soon. If not, start a new search for something that works.
Trex has always helped me! ( knock on wood )
Goodluck
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Gator
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Re: When Verapamil Stops Working
« Reply #8 on: Apr 15th, 2007, 11:25pm » |
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And then, there are people who require drug combinations. Some people, from whom neither verapamil nor lithium work alone, find that they work quite well together.
Don't give up, dude. There's a boatload of other meds and med combinations out there.
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Bob_Johnson
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Re: When Verapamil Stops Working
« Reply #9 on: Apr 16th, 2007, 8:04am » |
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Over the years, this has been a recurring issue. The reasons are unknown and it does not mean that you are doing anything wrong. The burden is having to try other meds to find an effective replacement. Start with these sites:
http://www.headachedrugs.com/pdf/ha2006.pdf Dr. Robbins site. Then explore the entire site by deleting everything following. com/ and then hit enter.
======================================================================== =
Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S. (2002)
http://www.brightok.net/~mnjday/chtherapy.pdf
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Bob Johnson
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burnt-toast
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Re: When Verapamil Stops Working
« Reply #10 on: Apr 16th, 2007, 9:26am » |
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As previously highlighted it is important to understand your treatment options and recognize that combination therapies are common in treating CH. Drug combination changes, dosage adjustments, and even modifications to schedules on which medications are taken may be necessary to regain some control. Episodic suffers have an additional challenge of going in and out of cycle while attempting to isolate effective treatments so they will need a way to connect one cycle to the next.
Little if anything will work instantly and you have an obligation to assist in finding effective treatments. Work with you doc. - establish a plan for working through treatment options. I use my docs. Email as a method for communicating and making adjustments between visits. As one of a few CH patients your doc. is likely to be seeing – ask if she/he will extend the same option.
Memory and perception isn’t going to cut it - your doc. simply doesn’t have time to wade through what you told him/her six months ago, or what you “think may have possibly helped” or “found on the internet”. Do some research and provide references. Maintain an accurate CH journal to record your attacks, treatments and any adjustments. This will improve your ability to work with your doc. and effectively manage treatments.
If you find that you doc. is unwilling to work with you – consider finding a new doc.
Best wishes,
Tom
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chrisw
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Re: When Verapamil Stops Working
« Reply #11 on: Apr 16th, 2007, 12:15pm » |
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I started taking verap. over a year ago, for the first time and it seemed to stop my cycle in its tracks, Since light shadows never completeyl went away, I stayed on a mild dose since then.
I was ch free for over a year, which is the longest ever, when they appeared again, I upped the verap. to 480mg, but it didnt have the magic effect that it did the first time around. I know it is helping with pain intensity though, because I detoxed from it not long ago to try the rc seeds, and my pain levels went through the roof.
so while it stopped working as well as it once did, it still helps somewhat.
good luck
chrisw
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DannyV
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Re: When Verapamil Stops Working
« Reply #12 on: Apr 18th, 2007, 9:41pm » |
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That is pretty much how it is with me.
I'll read through those threads and All of you guys' recomendations are wonderful. THANK YOU ALL!!
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kshodges
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Re: When Verapamil Stops Working
« Reply #13 on: Apr 19th, 2007, 11:37pm » |
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Hey Chris W - glad to hear Verapamil helps you to some degree. I was watching your thread with the RC seeds. We ordered ours around the same time. I was going through the same agony as you were when they didn't work! They didn't work for me either. So, a couple of weeks ago, I started the Verapamil. Gosh, I hope I can find a dose that helps prevent these things. I'm chronic, so I am not out of the woods for long when the cycle ends. It sure would be nice to have an extended PF time, wouldn't it? Hey, even lower intensity attacks would be welcomed.
My case is so difficult to treat, because the atacks are so close together: 9:45, 10:45, 11:45, etc. All day, every day for 10 days. They are every hour without fail for 20 minutes. Unless I can interrupt it somehow, I'm toast. And yes, night time (sleep) is a joke during cycle. Trex didn't help, because by the time it worked, I was almost finished with an attack. Boom, 45 minutes later, it was ready to rock my world again. So, rather than continue to try abortives, I am going the preventative route - Verapamil and possibly lithium. Ugh.
Anyway - just wanted to say thanks and send best wishes to you!
Kelley
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chrisw
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Re: When Verapamil Stops Working
« Reply #14 on: Apr 20th, 2007, 9:05am » |
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Kelley,
the next time I start complaining about my every two to three hr attacks, I willl think of you and shut up. WOW, it sounds like you are going through hell. I just added cafergot to my arsenal, and last night was the first night I tried it, I slept for seven hrs straight. No pain in the am either. This is my latest drug cocktail,
480 mg verapimil
9mg melatonin
1 cafergot tab. (not sure of the dosage in each tablet)
400mcg folic acid
250 mg magnesium
I also pop a tylenol pm at night
I take 900mg of trileptal for epilepsy also
I dont know if the cafergot helped or if things are just easing up in general, because this is the second time in a week that I didnt get hit during the night.
Oh and I also changed my verapimil dosing scedule, instead of taking 4 spaced out tabs, I take one in morning, one in afternoon, about three PM, and two tabs at bedtime. Maybe you could try it that way also, it seemde to pack more of a nighttime punch for me that way.
Good luck, and if you need to vent, just PM me
chris w
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DannyV
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Re: When Verapamil Stops Working
« Reply #15 on: Apr 20th, 2007, 9:27am » |
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Imitrex INJECTIONS are the only form of Imitrex that will usually kill it within 10 mins. Take it at FIRST sign of activity.
I do not know if you are being given the pills, or the nasal spray , or what, but those others are useless on people with Cluster Headache. Some doctors have told me that "That stuff was designed for Migraine only."
Their ignorance is bliss, for them. For a sufferer in horrible agonizing pain, their ignorance is un-acceptable.
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Gonna get me a shotgun, and disconnect my brain.
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bea1
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Re: When Verapamil Stops Working
« Reply #16 on: Apr 20th, 2007, 11:24pm » |
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I have never thought verapamil helped much 480mg but am afraid to quit. Gives me good constipation though.
Lithium 1800mg same thing but gives me nice shakes.
Melotonin 9mg????
The best thing I found was Sansert 12mg. Had a couple or three good years with this till I got fibroid growth in chest. Now the Docs dont want me to use.
(DannyV, You may want to check out Sansert but be careful)
Now I am using DHE daily as a prevent for about 4 months now. Usually only one headache per day or none. O2 takes care of that one fast. The pulmonary Doc doesnt really like the DHE either.
I would like to find another way. Imitrex didnt work for me at all. Same with Prednisone.
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| « Last Edit: Apr 21st, 2007, 12:26am by bea1 » |
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