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Verapamil??? (Read 3924 times)
Layla328
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Verapamil???
Nov 10th, 2010 at 8:22am
 
I am back in cycle hardcore.  My neuro is going to want me to take verapamil.  Here is my quandry--all my years I've had these I either used nothing b/c noone prescribed anything or then I used oxygen.  What is the truth about verapamil???  I am getting hit hard, but is there any chance that verapamil will extend my cycle or more importantly is it just a rumor that it can cause chronic headaches?  I am just confused.  Is it a good thing to take?  I do not want to mess with painfree intervals but seem to be getting slammed pretty hard right off the bat this time.  Sorry if I sound illogical I am very tired.  Thanks for any advice/input.
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Chris H
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Re: Verapamil???
Reply #1 - Nov 10th, 2010 at 8:25am
 
I can't answer your questions about extending the cycle, but I do know that it has helped me reduce the number of hits I get. Verapamil is considered the best choice preventative for ch.  -Chris
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« Last Edit: Nov 10th, 2010 at 8:30am by Chris H »  
 
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Re: Verapamil???
Reply #2 - Nov 10th, 2010 at 8:37am
 
I've seen a lot of people post concerns that triptans extend cycles, I'm one of those who believe that. I haven't seen that concern expressed over verapamil. It's a popular prevent because it works for many. It's side effects, lowering of blood pressure, constipation, feelings of lethargy, are relatively minor.

There are people on the board who use oxygen to abort their attacks, and no preventatives. It really comes down to what YOU are comfortable with. Read a bit more on the boards about what others use, then talk with your doc and make the call!

I use lithium while on cycle, at 1200 mg a day it blocks about 60-70% of my attacks. Oxygen handles most of the rest, with the occasional imitrex jab when I'm getting creamed!

Joe
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Layla328
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Re: Verapamil???
Reply #3 - Nov 10th, 2010 at 10:08am
 
Chris and Joe--thank you, I really appreciate the concern and all the info.  I already called the neuro's office--I was slightly annoyed and did not hide it well when I asked for O2 prescription, the lady handed the phone to someone else and that person said "OK, you're a cluster patient and what drugs are you after?"  WTF!!!!!  (wasn't sure what to make of that--maybe I am being overly sensitive).  Anyway, long story short, I appreciate all of the info--waiting to hear from the O2 deliverer to see if the doc's office has called them back and  will agree to prescribe it before seeing me.  And then am seriously considering using verapamil, when the doc sees me and can prescribe it.  Again, thank you VERY much for the information.
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Re: Verapamil???
Reply #4 - Nov 10th, 2010 at 10:36am
 
A lot of people use it.  I wont.  I have seen people who have got to taper down off it and couldn't because they started getting hits.  It's just not something I'm willing to do.  But if you are at the end of your rope, you may want to consider it.
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Triptans cause increased number of hits and increased intensity.  Learn it, believe it, live it.  I use triptans as the absolute LAST RESORT when treating my CH.&&
 
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Re: Verapamil???
Reply #5 - Nov 10th, 2010 at 12:09pm
 
Quote:
Verapamil is considered the best first choice preventative for ch by many doctors.

There - fixed it for you.
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Re: Verapamil???
Reply #6 - Nov 10th, 2010 at 1:03pm
 
I just finished reading the latest global evaluation of meds for CH and Verap. continues to come in on top as a preventive.

This is a widely used protocol which will allow you to work up to the dose effective for you (vs. a generalized recommendation often used).
--
Headache. 2004 Nov;44(10):1013-8.   

Individualizing treatment with verapamil for cluster headache patients.

Blau JN, Engel HO.


    Background.-Verapamil is currently the best available prophylactic drug for patients experiencing cluster headaches (CHs). Published papers usually state 240 to 480 mg taken in three divided doses give good results, ranging from 50% to 80%; others mention higher doses-720, even 1200 mg per day. In clinical practice we found we needed to adapt dosage to individual's time of attacks, in particular giving higher doses before going to bed to suppress severe nocturnal episodes. A few only required 120 mg daily. We therefore evolved a scheme for steady and progressive drug increase until satisfactory control had been achieved. Objective.-To find the minimum dose of verapamil required to prevent episodic and chronic cluster headaches by supervising each individual and adjusting the dosage accordingly. Methods.-Consecutive patients with episodic or chronic CH (satisfying International Headache Society (IHS) criteria) were started on verapamil 40 mg in the morning, 80 mg early afternoon, and 80 mg before going to bed. Patients kept a diary of all attacks, recording times of onset, duration, and severity. They were advised, verbally and in writing, to add 40 mg verapamil on alternate days, depending on their attack timing: with nocturnal episodes the first increase was the evening dose and next the afternoon one; when attacks occurred on or soon after waking, we advised setting an alarm clock 2 hours before the usual waking time and then taking the medication. Patients were followed-up at weekly intervals until attacks were controlled. They were also reviewed when a cluster period had ended, and advised to continue on the same dose for a further 2 weeks before starting systematic reduction. Chronic cluster patients were reviewed as often as necessary. Results.-Seventy consecutive patients, 52 with episodic CH during cluster periods and 18 with chronic CH, were all treated with verapamil as above. Complete relief from headaches was obtained in 49 (94%) of 52 with episodic, and 10 (55%) of 18 with chronic CH; the majority needed 200 to 480 mg, but 9 in the episodic, and 3 in the chronic group, needed 520 to 960 mg for control. Ten, 2 in the episodic and 8 in the chronic group, with incomplete relief, required additional therapy-lithium, sumatriptan, or sodium valproate. One patient withdrew because verapamil made her too tired, another developed Stevens-Johnson syndrome, and the drug was withdrawn. Conclusions.-Providing the dosage for each individual is adequate, preventing CH with verapamil is highly effective, taken three (occasionally with higher doses, four) times a day. In the majority (94%) with episodic CH steady dose increase under supervision, totally suppressed attacks. However in the chronic variety only 55% were completely relieved, 69% men, but only 20% women. In both groups, for those with partial attack suppression, additional prophylactic drugs or acute treatment was necessary. (Headache 2004;44:1013-1018).

=======================================
SLOW-RELEASE VERAPAMIL

Dr. Sheftell applauded the protocol for verapamil used by Dr. Goadsby and colleagues, which entailed use of short-acting verapamil in increments of 80 mg. “This method was suggested by Lee Kudrow, MD, 20 years ago as an alternative to slow-release verapamil,” Dr. Sheftell noted.

“I would agree with using short-acting verapamil, rather than the sustained-release formulation, in cluster headache,” he said. “I prefer the short-acting formulation with regard to ability to titrate more accurately and safely. My clinical experience anecdotally demonstrates improved responses when patients are switched from sustained-release verapamil to short-acting verapamil.”

Dr. Goadsby agreed that his clinical experience was similar. “There are no well-controlled, placebo-controlled, dose-ranging studies to direct treatment. This is one of those areas where clinicians who treat cluster headache have to combine what modicum of evidence is available with their own clinical experience,” Dr. Sheftell commented.
===

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Layla328
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Re: Verapamil???
Reply #7 - Nov 10th, 2010 at 1:17pm
 
Thank you  you guys--it is so good to get all the information and views from different angles b/c it will help me make a decision.  So used to fighting these things with only O2/melatonin.  Wouldn't have a problem to keep doing that only I was getting my butt kicked last night.  But we'll see how tonight goes and then will see neuro.  Thank you guys for all the info--more helpful than you realize to not be trying to figure it all out myself.
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Re: Verapamil???
Reply #8 - Nov 11th, 2010 at 9:35am
 
Brew, For whatever reason I found it's not the first choice Dr.s make. For me it was Topomax, then Indocin, then Lamictal and a few others before Verapamil. I think they use us as guinea pigs before going to treatment. I know the Indocin trial is to rule out other type of headache... in my case they weren't initially sure if it was Hemicranea Continua or CH since I also have ongoing baseline pain. Anyway, I think that's one reason so many are disenchanted with the docs. -Chris
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Reply #9 - Nov 11th, 2010 at 11:04am
 
I believe that statistically, Verapamil is chosen more often by doctors before moving on to any other drug. That's all I'm saying.
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Re: Verapamil???
Reply #10 - Nov 11th, 2010 at 11:23am
 
Brew wrote on Nov 11th, 2010 at 11:04am:
I believe that statistically, Verapamil is chosen more often by doctors before moving on to any other drug. That's all I'm saying.

And you are correct.  MOST docotors prescribe the pred taper while starting verapamil before any other treatment for CH.
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Triptans cause increased number of hits and increased intensity.  Learn it, believe it, live it.  I use triptans as the absolute LAST RESORT when treating my CH.&&
 
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Re: Verapamil???
Reply #11 - Nov 11th, 2010 at 11:26am
 
Chris H wrote on Nov 11th, 2010 at 9:35am:
Brew, For whatever reason I found it's not the first choice Dr.s make. For me it was Topomax, then Indocin, then Lamictal and a few others before Verapamil. I think they use us as guinea pigs before going to treatment. I know the Indocin trial is to rule out other type of headache... in my case they weren't initially sure if it was Hemicranea Continua or CH since I also have ongoing baseline pain. Anyway, I think that's one reason so many are disenchanted with the docs. -Chris

If he was using the first run of meds to confirm a diagnosis then they really don't count in the treatment category, more diagnostic.  What preventive did he issue when he was sure that you had CH?
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Triptans cause increased number of hits and increased intensity.  Learn it, believe it, live it.  I use triptans as the absolute LAST RESORT when treating my CH.&&
 
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Re: Verapamil???
Reply #12 - Nov 11th, 2010 at 2:55pm
 
Topomax with local neuro, Verapamil with headache center

Think this states it well...

Verapamil is currently the best available prophylactic (preventative) drug for patients experiencing cluster headaches (CHs)

-Chris
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« Last Edit: Nov 11th, 2010 at 3:04pm by Chris H »  
 
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Re: Verapamil???
Reply #13 - Nov 15th, 2010 at 4:49pm
 
[font=Arial][size=12]My neuro had taking a a preventative verapimil, lithium and topomax.  My last cycle ended the fist of Feb, 2010 and it had lasted 4 mos.  In March I suffered a heart attack requiring 6 stents and pace maker. Because of the stents I am on effient (a souped up plavix)plus of course several other meds, but my cardiologists took me off verapimil. If all goes as normal it is about time for next cycle so I am not sure what I will do other than up dosage of lithium and topomax and of course abort with O2 and hope and pray cycle is not as long.
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Re: Verapamil???
Reply #14 - Nov 15th, 2010 at 5:32pm
 
I can't answer the cycle question since I don't have them, just have CH year round no breaks.

While on Verapamil you should have regular EKG's done to make sure the Verapamil isn't giving you a 'blip' where you shouldn't have one.  Most people don't have an issue with this. 

There are different versions of Verapamil such as Regular release and (SR) Sustained release depends on the person which works better for them.

While on Verapamil it is important to avoid Grape Fruit juice, or grape fruit and cut back on your dietary salt intake Verapamil can make you retain extra water. Do not take aspirin while on verapamil.   You should not take the herbal supplement Kudzu while on verapamil either.

Covered everything I can think of at the moment on Verapamil hope this helps.  Smiley
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Re: Verapamil???
Reply #15 - Nov 16th, 2010 at 8:15am
 
I'm not sure what if there is a controversy in this thread; maybe not, but it kinda feels like it. Verapamil is an effective preventative for many. Many others either do not like its effects or cannot tolerate them. For myself, low doses of verapamil were having no effect, and my regular neuro and GP wouldn't go above 240mgs. My headache specialist kicked me up to 400mgs and the damn CHs slunk into a corner. It may be only sulking at the moment, or maybe its gone out the door for good. I don't know, but I do know I have only one or two hits a week now, as opposed to 4-6/day before. It is an individual thing, but since I still get hits, I can't answer the other half of this question: what happens when you taper down out of cycle. I know some here do that, though. And I don't remember hearing that it worsened the CH frequency. Could be wrong on that, I just don't remember reading it. Good luck with this, and God bless! lance
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Re: Verapamil???
Reply #16 - Nov 22nd, 2010 at 11:28pm
 
I am a pharmacist and took verapamil for over a year before it started to not work for me. At first I had no problems and it helped with the cluster headaches....then I started to have crazy side effects from it....my feet swelled so I had to take a diuretic....then my potassium went really low so I had to take that. My final advice for you is to try it....try anything because for one person it may work and for another person it may not work (that thats the cluster headache patient talking not the pharmacist). Good luck in your decision friend! Smiley
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Re: Verapamil???
Reply #17 - Nov 23rd, 2010 at 8:39am
 
Welcome to the board Natalie, nice to have people from your trades on the board. The more people we have in the medical field putting the word out about our condition, the better! Wink

And your advice is spot on, keeping an open mind, being willing to try different routes, as CH is so different from patient to patient.

Joe
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Re: Verapamil???
Reply #18 - Dec 13th, 2010 at 11:52pm
 
I was hesitant to use verapamil because it did not work for me 15 years ago....but this cycle, I found a new doc, trusted him, and he ramped me up to 940 mg/day (testing my blood pressure along the way). Guess what...it worked. Slight side effects, and I have just tapered down and am med free as of this week (started on the Verapamil in October).

It may not work for all, but it worked quite nicely for me this time and will be my first port of call next cycle.
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Re: Verapamil???
Reply #19 - Dec 14th, 2010 at 7:11pm
 
Just one other thing I've not seen mentioned  , if you do go down the verapamil road do not use energy drinks as an abortive they can give you hart flutters etc. which can all be very scary.

God bless

Nigel
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Re: Verapamil???
Reply #20 - Dec 14th, 2010 at 7:53pm
 
I started a cycle on Sept. 18 2010, my doc started me on Verapamil around Oct. 1st at 120mg per day and increased to 240mg 2 weeks later then 360mg. Finally the doc put me in the hospital for DHE for 5 days on Nov. 15th. That did the trick. I've only had one since then. The doc still has me on 480mg of Verapamil per day, but he said to start working off of it on Dec. 22nd. I have not notice any affects from the Verap. Hope this helps! Good luck. Smiley
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Layla328
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Re: Verapamil???
Reply #21 - Dec 15th, 2010 at 1:54pm
 
Thanks Nigel, I am probably the one person on here who hasn't tried the energy drinks, probably because I always will reach for coffee as a weapon against the beast--but I am glad to know that info for the future so that I don't try it!
TJB, that is wonderful that the DHE therapy worked for you!  Gives me hope if I ever get in a jam where nothing is working.  I am on 360mg verapamil per night (supposed to be on 480mg but still working up to it).  Looking at my headache diary--the magic combination for me is combining the verap. with 4 benadryl (or dramamine)--I am also on 12mg melatonin but even my doctor said the melatonin is not doing anything for me this time.  So anyway, I will hopefully be able to stop taking the verap at the end of my cycle which could last another month and a half.  That is awesome about the DHE therapy!!!
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Layla328
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Re: Verapamil???
Reply #22 - Dec 15th, 2010 at 2:05pm
 
Pete,
Thank you for posting your encouraging experience with verapamil.  It certainly does help hearing about other's success stories with this medication.
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