Author |
Topic: Verapamil (Read 448 times) |
|
Guido
New Board Junior
The Miracle is in the moment
 
Gender: 
Posts: 72
|
Hey kids,
I have been gone from ch.com for about two years now. I have had two episodes. The first in the fall of 2002, the second in the fall of 2004 both lasting about three months. The first episode was not diagnosed the second was, mostly because of this site and then knowing how to handle the ignorance of the medical profession. I did receive O2 and Imitrex prescriptions and later on I was prescribed Verapamil. By the time I got the Verapamil the episode was over. Having had only two episodes but both being in the fall and two years apart I readied myself for the fall of 2006. I no longer have health insurance but fortunately I keep my supply of Imitrex. I found a new doc that was satisfied with my medical records from earlier and he renewed my scripts for O2, Imitrex ( he also had free samples of the Imitrex, which as you all know is very expensive shit )and Verapamil. I started taking the Verapamil in September and stopped the first of January.
Now here's the deal...first I have only had two episodes two years apart. Not much of a scientific approach to my clusters. However. other then a few ( perhaps perceived ) shadows I did not have one nightly visit from the demon. I would like to say conclusively that the Verapamil completely stayed the pain of an episode, but knowing nothing is conclusive about this shit I just can't. I do know this. If indeed I was to have an episode in the fall of 2004 I did not. I will sleep tonight however knowing in my mind of minds the Verapamil worked for me.
The dosage was 80 MG twice daily.
I write this hopping someone else could have the same results.
Namaste,
G
|
|
 IP Logged |
He will come. You may put him off for awhile but, he will come. 
|
|
|
Guido
New Board Junior
The Miracle is in the moment
Gender:
Posts: 72
|
 |
Re: Verapamil
« Reply #1 on: Jan 7th, 2007, 12:34am » |
 Quote  Modify
|
Correction...if indeed was 2006 not 2004....my bad
|
|
IP Logged |
He will come. You may put him off for awhile but, he will come.
|
|
|
TonyG1
Guest
|
Guido -- Like you I run every two years... have done so for about twenty years.. this cycle fired up in Dec'06 and the prior cycle was Dec '04 -- I take a small dose of verap 180mg, previously took an even smaller dosage -- while it generally helps (i.e. lower kips levels, most nights no attack, etc.) it doesn't always stop the beast. Sometimes I'll have to walk thru hell on earth -- yesterday was a prime example with two hits -- one shortly after midnight which I was able to mitigate pretty quickly and another at 5:30 a.m which I didn't think was going to go away even with the help of my triptans -- even at that I still shadowed all day and felt like someone had hit me in the temple with baseball bat ...
I honestly think the verap does a great job and I think were the dosage I'm on a little higher (i.e. 240 or above) that it would completely disconnect the beast; however, with the dose I'm taking it doesn't always stop it but certainly does help! I know some of the attacks would be much, much worse without the verap holding the beast at bay. Woke today PF !! <Yeah!!> As I'm sure you're aware, the beast is a tricky bastard and will take opportunity when opportunity to presents itself .... moral to the story life on verap during a cycle is much better than not ... !!
Good luck to you and wishing you PFDANS
T.
|
|
IP Logged |
|
|
|
Salvelinus
New Board Junior
With Him, all things are possible. ><>
Gender:
Posts: 84
|
|
Re: Verapamil
« Reply #3 on: Jan 7th, 2007, 2:31pm » |
Quote Modify
|
Verapamil has been very effective for me as well, but like Tony, it only does so much. During my last cycle, I gradually increased (with my neuro's permission) up to 960 mg daily, and was still getting hit pretty hard. I do not recommend anyone go that high--I'm a big guy (260), and even so some of the internal medicine docs I work with raised their eyebrows when they heard my dosage. Anyway, my neuro ended up backing me down to 240 mg twice a day, and adding a prednisone taper and indocin, which pretty much ended the cycle. So I guess the point is, more is not necessarily better, but it does work for me.
Cheers, and congrats on being out of cycle!
|
|
IP Logged |
Namaste,
--Scott ><>
"When no one else knows how I feel,
You run to me, with outstretched hands,
and you hold me in your arms.
Again."
--Building 429
|
|
|
pubgirl
New Board Old Timer
The next person who calls it a migraine eats teeth
Gender: 
Posts: 396
|
|
Re: Verapamil
« Reply #4 on: Jan 7th, 2007, 5:07pm » |
Quote Modify
|
on Jan 7th, 2007, 2:31pm, Salvelinus wrote:
During my last cycle, I gradually increased (with my neuro's permission) up to 960 mg daily, and was still getting hit pretty hard. I do not recommend anyone go that high--I'm a big guy (260), and even so some of the internal medicine docs I work with raised their eyebrows when they heard my dosage.
|
|
That is an entirely normal dose for a CH'er so please don't scare people off it as that may be what they need to block attacks. Verapamil is used in much higher doses in Ch'ers than heart/circulation patients as we, in theory (GET THOSE ECG'S DONE AT EVERY INCREASE!) have healthy hearts and circulation and are using the drug in a different way. That is probably why you got the raised eyebrows.
Many people I know who have given up on Verapamil as useless, found that when their GP knew the correct dosing regime it worked as their GP HAD been prescribing far too little.
Prof Goadsby states a theoretical max of 960mgs but regularly prescribes over 1000mgs per day.
W the B
|
| « Last Edit: Jan 7th, 2007, 5:47pm by pubgirl » |
IP Logged |
Calling all Brits (and anyone else- all welcome) Join OUCH UK and help us fight CH together
|
|
|
Salvelinus
New Board Junior
With Him, all things are possible. ><>
Gender:
Posts: 84
|
|
Re: Verapamil
« Reply #5 on: Jan 7th, 2007, 9:40pm » |
Quote Modify
|
Not sure where that came from. 
Not trying to scare anyone off . . . just saying what I've done, what has worked, and what hasn't. My point was that anyone going that high should definitely do so under a doctors supervision, and not just do it on their own. High Verapamil dosage shouldn't be taken lightly.
If people here were scared off by comments like mine, no one here would take anything, especially Imitrex.
|
| « Last Edit: Jan 7th, 2007, 9:41pm by Salvelinus » |
IP Logged |
Namaste,
--Scott ><>
"When no one else knows how I feel,
You run to me, with outstretched hands,
and you hold me in your arms.
Again."
--Building 429
|
|
|
pubgirl
New Board Old Timer
The next person who calls it a migraine eats teeth
Gender:
Posts: 396
|
|
Re: Verapamil
« Reply #6 on: Jan 8th, 2007, 4:24pm » |
Quote Modify
|
on Jan 7th, 2007, 9:40pm, Salvelinus wrote:
Not sure where that came from.
Not trying to scare anyone off . . . just saying what I've done, what has worked, and what hasn't. My point was that anyone going that high should definitely do so under a doctors supervision, and not just do it on their own. High Verapamil dosage shouldn't be taken lightly.
If people here were scared off by comments like mine, no one here would take anything, especially Imitrex. |
|
Very simple where it came from Salvelinus. It came from "I don't recommend anyone go that high" . That is a very strong statement of advice and suggests you think no-one else unless they are a "big guy" like you should take that much.
I agree that everyone taking Verap should be careful but "that high" is quite normal for CH'ers. It isn't worryingly high, even for not "big guys" or girls.
We have a constant problem with GP's being scared about Verap dosages for Ch'ers being abnormally high and refusing to prescribe them. They usually aren't too high at all, to the contrary, they are usually too low to do any good and many sufferers give up before prevention is achieved. The "abnormally high" is for Verap's usual use for heart patients (which I explained earlier in my post) not for Ch'ers.
If you decide to "advise" people on here: "I don't recommend people go that high" then expect someone to argue with you if they have a contrary point of view that is backed up beyond personal experience.
I do stress here that the higher dosages need to be checked at every increase with an ECG to check individual response.
To be blunt, your post just confirms GP ignorance of Verap usage for CH sufferers, and I don't give a flying fuck if you object to me counteracting it as it is misleading and may worry people who are on, or planning higher Verap doses.
W
|
|
IP Logged |
Calling all Brits (and anyone else- all welcome) Join OUCH UK and help us fight CH together
|
|
|
Guido
New Board Junior
The Miracle is in the moment
Gender:
Posts: 72
|
|
Re: Verapamil
« Reply #7 on: Jan 8th, 2007, 5:23pm » |
Quote Modify
|
All I really know is that I did not have one CH this season while taking the Verapamil...what if they are nothing more then placebo's? I don't care, what should have been wasn't and what was was wonderfully pain free. Sometimes it's not what is that counts, but what isn't, and that's all my mind needs to know.
Namaste,
G
|
|
IP Logged |
He will come. You may put him off for awhile but, he will come.
|
|
|
pubgirl
New Board Old Timer
The next person who calls it a migraine eats teeth
Gender:
Posts: 396
|
|
Re: Verapamil
« Reply #8 on: Jan 8th, 2007, 5:39pm » |
Quote Modify
|
Guido
I am really glad for you, and the lowest effective dose is the best possible dose! 
Wendy
|
|
IP Logged |
Calling all Brits (and anyone else- all welcome) Join OUCH UK and help us fight CH together
|
|
|
TonyG1
Guest
|
on Jan 8th, 2007, 5:39pm, pubgirl wrote:Guido
...the lowest effective dose is the best possible dose!
Wendy |
|
Wendy - I agree with you! My verap dosing is low on compared to most; however, consider myself lucky if I can get by on a lower dose...
Good for you Guido !!
|
|
IP Logged |
|
|
|
|
|
|
Home
Help
Search
Members
Member Map
Login
Register
Reply
Notify of replies
Send Topic
Print
Remove
test rss