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Topic: Why not Verapamil? (Read 620 times) |
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Dave
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Why not Verapamil?
« on: May 24th, 2006, 8:50pm » |
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There is a statistic that is bugging me in our medication survey (see to your left). With over 3500 respondents, more than half have never tried calcium channel blockers.
Could it be that people do not recognize Verapamil as a calcium channel blocker?
Or could that really be the percentage of us who have never tried Verapamil?
It is my understanding that Verapamil is the first line of defense against cluster headaches. I would think that this would be the first thing that a treating physician would try.
No, Verapamil does not always work, but it does work in a lot of cases, and probably has the best track record and fewest side effects in comparison to almost any other medication. It is also relatively inexpensive.
We try tons of different ways to get rid of these headaches. You would think that most people would have at least tried what is arguably the safest and most effective medication.
What the heck is going on? My goodness. Half of us have not even tried Verapamil?
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| « Last Edit: May 24th, 2006, 8:54pm by Dave » |
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Ueli
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on May 24th, 2006, 8:50pm, Dave wrote:| I would think that this would be the first thing that a treating physician would try. |
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There's the rub, not all clusterheads are treated by a CH-savvy doctor. Then there are the docs who have heared ablout Verapamil, but prescibe it in a far too low dosage.
It's our task to educate the newbies on stuff like that, so they can educate their doctors.
Ueli 
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Mr. Happy
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Re: Why not Verapamil?
« Reply #2 on: May 25th, 2006, 1:33am » |
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Verapamil is definitely CH 101. If that doesn't cut the mustard, then it's time to enter the Twilight Zone. For all the Pro's and Con's, Verap is the initial way to go, along with Trex snorts. O2, too.
There will be plenty of time to Beta test, you betcha.
RJ
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May those who don't want any
Have memories of never getting any.
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Bob_Johnson
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Re: Why not Verapamil?
« Reply #3 on: May 25th, 2006, 10:36am » |
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Yes, many docs have no experience with CH.
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Headache. 2000 Oct;40(9):730-5.
The misdiagnosis of cluster headache: a nonclinic, population-based, Internet survey.
Klapper JA, Klapper A, Voss T.
Colorado Neurology and Headache Center, Denver 80218, USA.
OBJECTIVE: We conducted the first nonclinic, Internet-based survey of cluster headache to investigate this population with regard to diagnostic problems encountered, effective and ineffective medications, problems obtaining medications through third-party payers, and symptoms as they relate to International Headache Society criteria. BACKGROUND: Previous cluster headache surveys have been at specialty centers. These patients might be different from cluster headache sufferers in the general population. An Internet-based population of cluster headache sufferers who connected to a Web site responded to the questionnaire, and e-mailed it back to our site to be analyzed. We analyzed a total of 789 respondents, 76% men and 28% women. RESULTS: Eighty-seven percent of respondents qualified as having cluster headache according to International Headache Society criteria. However, diagnosis was delayed an average of 6.6 years from the onset of symptoms. The average number of physicians seen before the correct diagnosis was made was 4.3, and the average number of incorrect diagnoses was 3.9. Seventy-one percent of respondents had undergone unnecessary magnetic resonance or computed tomography scans, and 4% had unnecessary sinus or deviated septum surgery. We found that many inappropriate medications such as propranolol, amitriptyline, and antibiotics were prescribed and that successful medications for clusters such as sumatriptan and oxygen were often denied due to a failure to understand the nature of this disorder. Seventy-seven percent of respondents were smokers. Seventy-four percent stopped smoking in an attempt to improve their condition; however, only 3% experienced relief. CONCLUSIONS: The most alarming finding was the delay in diagnosing cluster headache in this population--an average of 6.6 years. The selection of medications demonstrated to be successful in the treatment of clusters proved effective for the majority of this population. Many respondents reported being denied some of these effective medications by their physicians or third-party payers. Using International Headache Society criteria for cluster headache, 87% of the respondents should have been correctly diagnosed by the first physician seen.
PMID: 11091291
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Bob Johnson
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Bob P
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Re: Why not Verapamil?
« Reply #4 on: May 25th, 2006, 11:20am » |
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Quote:| We conducted the first nonclinic, Internet-based survey |
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And that survey was done right here at CH.com!
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Mrs. Barlow, I never, and I repeat never, ever pissed in your steam iron.
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chewy
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Anyone remember when the survey first hit the board?
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SophiaK
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Re: Why not Verapamil?
« Reply #6 on: May 25th, 2006, 3:36pm » |
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How I wish Verapamil would work. I take it now because of a heart condition, but it doesn't do diddly for HA. I have yet to find something that will give me real relief. I am in my 6th month of this hell. Hopefully someday we all will get the 'magic pill'
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Guiseppi
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Re: Why not Verapamil?
« Reply #7 on: May 25th, 2006, 6:11pm » |
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I tried verap about 15 years ago but at what I now know to be a low dosage, about 240 mg I believe. Didn't do anything for me. Like Bob said, it's an education thing. If lithium ever loses it's efectiveness Verap will be my next choice!
Guiseppi
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I Cant Dance
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Re: Why not Verapamil?
« Reply #8 on: May 25th, 2006, 6:47pm » |
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Verap doesn't work for me, nor has anything else though.
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Dave
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Re: Why not Verapamil?
« Reply #9 on: May 25th, 2006, 8:49pm » |
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If you have never tried Verapamil for cluster headache syndrome, PLEASE PLEASE ASK YOUR DOCTOR ABOUT IT.
It has not worked for every headache I've had, but it has worked miracles for many of them even in the 240mg dosage.
Verapamil will not work for everyone, but your odds of a significant benefit are about as good as it gets.
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Charlotte
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Re: Why not Verapamil?
« Reply #10 on: May 31st, 2006, 3:35pm » |
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I took Verapamil, years ago, along with Fiorinal. My problem with it was that, although it worked well during mild times, it seeemed to keep the harder hits going and going, one after another, until I quit using it. It may have been because I also used the Fiorinal.
Charlotte
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athimmel
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Re: Why not Verapamil?
« Reply #11 on: Jun 21st, 2006, 12:46pm » |
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I've been using Verapamil for a few years now. Frankly, I can't imagine what my CH would be like without it. I still get them, but I know that with the Verapamil, the frequency drops dramatically and the number of 9s and 10s is far lower.
My problem lies in the fact that I don't really have any meds to interrupt a CH. I have been reacting to almost all of the triptans (throat closing and such), and oxygen did absolutely nothing for me. I can't even take aspirin due to stomach probs. Thus, if I didn't have the verapamil, I'd be a basket case. I would recommend it as a first line of prevention for anyone.
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Katherinecm
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Re: Why not Verapamil?
« Reply #12 on: Jun 21st, 2006, 1:36pm » |
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on Jun 21st, 2006, 12:46pm, athimmel wrote:
...My problem lies in the fact that I don't really have any meds to interrupt a CH. I have been reacting to almost all of the triptans (throat closing and such), and oxygen did absolutely nothing for me. I can't even take aspirin due to stomach probs... |
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Triptans don't work for me either. Have you tried oral narcotics? I like to combine Lortab with Redbull for Kip 9+- combined they drop the pain dramatically in less than 15 minutes, usually less than 10. Of course you can't drive, but when the pain is that bad to me it's worth it.
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athimmel
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Re: Why not Verapamil?
« Reply #13 on: Jun 21st, 2006, 1:49pm » |
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No, I haven't tried that. I have to avoid caffeine because of stomach issues. It's sad, because sometimes caffeine will interrupt a CH for me, especially when I was able to combine it with aspirin.
As for narcotics, I try to avoid those, too. Besides, my neurologist hasn't even suggested them.
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b0x
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Re: Why not Verapamil?
« Reply #14 on: Jun 21st, 2006, 1:55pm » |
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I know this is a bit babieish of me but I looked up some of the side effects
constipation
dizziness or lightheadedness
headache
upset stomach
heartburn
excessive tiredness
flushing (feeling of warmth)
slow heartbeat
vivid, unusual dreams
and the ones in bold scare me if I have any of those side effects the can trigger a CH or feel like I am getting one, and I would hate for a 5 to turn into a 10.
As anyone here experinecd any of these side effects?
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Brew
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Re: Why not Verapamil?
« Reply #15 on: Jun 21st, 2006, 3:27pm » |
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Almost every single drug on the market today lists headache as a possible side effect. It just means that some of the test subjects got one at one point during the testing.
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Jonny
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Re: Why not Verapamil?
« Reply #16 on: Jun 21st, 2006, 3:27pm » |
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on Jun 21st, 2006, 1:55pm, b0x wrote:I know this is a bit babieish of me but I looked up some of the side effects
constipation
dizziness or lightheadedness
headache
upset stomach
heartburn
excessive tiredness
flushing (feeling of warmth)
slow heartbeat
vivid, unusual dreams
and the ones in bold scare me if I have any of those side effects the can trigger a CH or feel like I am getting one, and I would hate for a 5 to turn into a 10.
As anyone here experinecd any of these side effects? |
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I took Verap everyday (480mg) for 14 years and never had any side effects what so ever.
But everyone reacts different!
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
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Brew
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Re: Why not Verapamil?
« Reply #17 on: Jun 21st, 2006, 3:31pm » |
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on Jun 21st, 2006, 1:55pm, b0x wrote:I know this is a bit babieish of me but I looked up some of the side effects
constipation
dizziness or lightheadedness
headache
upset stomach
heartburn
excessive tiredness
flushing (feeling of warmth)
slow heartbeat
vivid, unusual dreams
and the ones in bold scare me if I have any of those side effects the can trigger a CH or feel like I am getting one, and I would hate for a 5 to turn into a 10.
As anyone here experinecd any of these side effects? |
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Tiredness, constipation, a little bit of dizziness from time to time, and heartburn are the only ones I've ever experienced.
As if that's not enough. I sound like Roseanne Rosanna Danna.
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Charlotte
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Re: Why not Verapamil?
« Reply #18 on: Jun 21st, 2006, 3:36pm » |
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on Jun 21st, 2006, 1:55pm, b0x wrote:I know this is a bit babieish of me but I looked up some of the side effects
constipation
dizziness or lightheadedness
headache
upset stomach
heartburn
excessive tiredness
flushing (feeling of warmth)
slow heartbeat
vivid, unusual dreams
and the ones in bold scare me if I have any of those side effects the can trigger a CH or feel like I am getting one, and I would hate for a 5 to turn into a 10.
As anyone here experinecd any of these side effects? |
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I did not experience any of these. It worked during the mild portion of my cycle and the problem I had at the end, with back to back hits, may have been the combination with Fiorinal, or may have been that particular cycle.
Sometimes, if we have a bad experience but try the medicatoin again at another time, we may have a much better result. Not only are we all different from each other, we are also different from ourselves at another time.
I used to have 16 month cycles, that were mild/low kip scale at the beginning, and increasing in intensity and ending in 8 very bad weeks, then starting over at a low pain intensity. I had a month pain free in 2002, but now I am lucky to get 1/2 day, and occationally several days relatively pf.
Charlotte
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| « Last Edit: Jun 21st, 2006, 3:43pm by Charlotte » |
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Kris_in_SJ
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Re: Why not Verapamil?
« Reply #19 on: Jun 21st, 2006, 7:47pm » |
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CONSTIPATION!
The absolutely only side effect I ever have had on Verapamil 480mg/day during cycle. A simple stool softener + fiber + water, water, water takes care of it.
PF Wishes,
Kris
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