I was put on verapail three years ago when I was diagnosed with CH.  How well does it work, if at all, for anyone out there?  How is it supposed to work for CH?

I've been on Verap. since November 11 and still getting 3-4 K4-10's per day since i've started it.  I know it takes a couple of weeks to build up in your system, but after two weeks I still get K4-10's.  I'm using O2 and recently started the Red Bull idea posted on this site, which is working great for me.

How am I supposed to know if verap is doing its job with my CH?  My doctor seems to think it's doing what it should, but from other blogs and info, it seems that other people have better results from it than I do.

Any info and/or opinions will be greatly appreciated.

Hi Laura,

How much Verap are you taking?  Some here take very high doses.  I have had cycles where 360mg a day worked well for me.... other cycles though, it didn't seem to do a thing.  I would say that if you are still getting hit that often... the Verap is NOT doing its job.

PF wishes,

Jeannie  

Thanks for your reply, Jeannie!!!

I'm on 240mg SA.  The SA pills work a little better than the regular I was on two years ago.   I guess I'm not sure whatelse is out there besides lithium for a preventative.  

My blood pressure is usually on the low side, the highest it's been in the last several years is about 80/120.  I had it check a few times recently and the lowest was 64/102-somewhere in that area, and I wasn't even on any meds.

Laura

I tend to have low BP too.  I hate the way the Verap makes me feel but I hate CH worse!    I'd keep calling the doctor till he finds a way to help you not have this many hits.

Good Luck!

Jeannie

I think I will call the doc this afternoon.  Thanks Jeannie!!!

By the way, Jeannie, how many hits do you get while your on verap?

Last year I started the Verap in Feb. BEFORE my cycle even started.  My cycle usually starts in March.  From Mar till the end of April I had only strong shadows. NO HITS AT ALL!   In June the shadows were gone.  It did take me a few times to taper off though.  Every time I'd try to go off of it...the shadows came right back.    I was finally off of it by late July.. I did have two minor hits then.... nothing above a kip 5 though.  That was it.   It was a strange cycle.

The year before, I didn't start the meds till I was already in cycle.  The Pred only worked as I was taking it.  I started to get hit as soon as the dose was tapered.   Even though I was taking the Verap... I was still getting hit everyday, two or three times.  Very high kip levels too.   That cycle lasted more than 12 weeks.

This year I plan to try seeds.... If I get my courage up.  Otherwise, I'll start the Verap again in  Feb and hope for good results.    I know I'll be getting 02 this time around.  I pray it works for me.

Hope all that made sense.  I didn't mean to write you a book! LOL!

Jeannie

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).

Bob Johnson wrote on Dec 8^th, 2008 at 7:27pm:

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).

Bob, you're exactly who I wanted to see post.

Why is it that the calcium channel blockers are useful for CH? What do they do for us? I mean, I know they dilate blood vessels but...isn't that the problem? I'm so confused. XD I can't use that type of drug it seems, but I was curious as to what it does, anyways...

Mystina

Pixie-elf wrote on Dec 8^th, 2008 at 7:41pm:

............ I know they dilate blood vessels but...isn't that the problem? I'm so confused. XD I can't use that type of drug it seems, but I was curious as to what it does, anyways... Mystina

I read this a lot around here but they don’t dilate the blood vessels at all. In simplistic terms, they “relax” smooth muscles like in arteries and the heart. This keeps them from getting spastic in terms of constriction and expansion. This may or may not be the mechanism that helps many Clusterheads.

Marc

laura wrote on Dec 8^th, 2008 at 1:59pm:

I was put on verapail three years ago when I was diagnosed with CH.  How well does it work, if at all, for anyone out there?  How is it supposed to work for CH? I've been on Verap. since November 11 and still getting 3-4 K4-10's per day since i've started it.  I know it takes a couple of weeks to build up in your system, but after two weeks I still get K4-10's.  I'm using O2 and recently started the Red Bull idea posted on this site, which is working great for me. How am I supposed to know if verap is doing its job with my CH?  My doctor seems to think it's doing what it should, but from other blogs and info, it seems that other people have better results from it than I do. Any info and/or opinions will be greatly appreciated.

Being chronic, I was on it 11 years almost straight at 240-480mg, occasioanlly ramping up to 720+ as needed - WITH medical supervision. I found over time that I needed to take a 30 day break because it lost effectiveness over time for me.

Eventually, it stopped doing anything for me at all.

ALWAYS consult your Doctor before playing with dose changes.

People often say that stopping ubruptly can cause your blood pressure to spike, but I've learned that this rule applies mostly to folks who were hypertensive in the first place. I found I could go from 720mg to zero overnight, and back up a month later and never had a BP problem either way.

Once again: ALWAYS consult your Doctor before changing/adjusting/stopping any medication.

Marc

Hi Laura. I am on 480mg daily Verapamil (watched by my neuro of course) and it is working very well so far in this cycle.The odd hit gets through but when I was on 360mg daily during my last cycle and it was not working for me.

I feel a huge milestone with this cycle, using the o2 to abort, and the Verapamil as my prevent. I pray this combo keeps working for me but time will tell I guess.

For now, this is my cocktail and pray you find yours too!

PF wishes, Barry :)

Hi Laura-

not much new to add here - but I took verapamil my last cycle .  My neuro put me on 480 and we upped it to 660 mg within a week.  Never got another full CH on that dose.  It took about 3 days for me before i really noticed a difference .  

I still had shadows but nothing I couldn't knock out and it was totally manageable.  I still had some mild headache activitiy but not CH  even after I was sure the cycle ended, well after I slowly decreased and eventually went off the verap.

Hope this helps in some way...

Kelly

Marc wrote on Dec 8^th, 2008 at 8:00pm:

.... In simplistic terms, they “relax” smooth muscles like in arteries and the heart. This keeps them from getting spastic in terms of constriction and expansion. This may or may not be the mechanism that helps many Clusterheads. Marc

That's it, in a nut shell.

To elaborate a bit: The smooth muscles need Ca⁺⁺ ions to react to nerve impulses. These Ca ions are so large they cannot enter the receptor directly form the blood. Therefore, nature has provided special calcium cannels to allow the uptake of Ca ions. Verapamil blocks these channels, thus reducing the Ca concentration in the nerve receptors. The result is: the smooth muscles react sluggish to the nerve signals.

If verapamil is taken against high blood pressure it acts in two ways: Overtight arteries are relaxed, decreasing the flow resistance for the blood. If the heart contracts to fast verapamil slows down the contraction speed. (The heart is the muscle working hardest in our body, therefore it's a striped (skeletal) muscle. But as it is controlled autonomously, not by our will, it receives the nerve impulses like smooth muscles.)

During a CH attack a swelling artery somewhere in the head pinches the trigeminal nerve, thus closing the feedback loop that leads to the extreme rapid buildup of a CH attack. If the expansion is slowed down, the feedback loop is broken. BTW, oxygen acts in a similar way: The brain only takes as much oxygen as it's needs. If the blood transports more oxygen than usual, the arteries to the brain are constricted and the loop is broken.

There are a lot of smooth muscles around the guts, to move the contents towards the rear end. Hence the major side effect of taking verapamil.


                 [smiley=smokin.gif]

What are you a rocket scientist or something? 8-)

Quote:

ALWAYS consult your Doctor before playing with dose changes. People often say that stopping ubruptly can cause your blood pressure to spike, but I've learned that this rule applies mostly to folks who were hypertensive in the first place. I found I could go from 720mg to zero overnight, and back up a month later and never had a BP problem either way.

I can't agree with Marc more.  Verapamil dosage, increase, tapering off, etc., all depends on the individual.  We need to be under supervision.

My normal BP is pretty low too, usually systolic under 100 but goes over during a CH cycle because of stress.  My body size is small too, and I was on 480 mg previously when attacks were severe.  In this current cycle, I've found out even 240 made a zombie out of me (probably more psychological) in the second month.

Like Marc, I've had no trouble dropping Verapamil, but in my case stopping at 240.  If I'm not sure whether I'm really done with the cycle, I drop to 120 and see what happens.

Unfortunately a lot of things are relative.......with untreated cycles as a baseline for me.  I was getting 5 real bad ones daily previously, so down to 5 mild ones a week enabled me to to safely say Verapamil was doing its job at that given dosage.  When to start Verapamil, whether to increase/decrease the dose, and when to drop it all depend on the CH activities and my tolerance level to both CH and Verapamil.

Thanks for all the good advice everyone!!!  I called my doc about the verapamil yesterday and the nurse called back (unfortunately I was on a call at work and missed the call) and said that the doc was going to change my meds a little.

I had four bad hits last night from 8:50 p.m. to 4:00 a.m.  The O2 worked but after 10 minutes with no relief with it, I stopped the 02 for 5 minutes and went back to it.  It finally started working.  Hopefully there is something out there that will work.  I'm sorry if this note sounds a bit spastic, but three hours of sleep everday for the last 5 1/2 weeks has me exhausted.  

Laura

I got a new script for verap.  Doc upped it from 240mg to 360mg.  I'm still using the sustained release capsules, they seem to work well for me and are easier on my tummy!!!  I took my new script last night.  I still had 4 hits last night, but they were alot less painful.  The pharmacist said that it could take a week for me to start feeling a difference and the side effects may be a little stronger.  She also mentioned that everyone is different and that the side effects may not effect me at all.  

Thanks for the advice!!!!


Laura

I hope you have success!  

Hugs,

Jeannie

Glad you're finding hits to be less intense, Laura.  That's what we expect Verapamil to do, to make the cycle more tolerable.

Be sure to get up slowly, dear.  I was not negatively affected by Verapamil in some cycles but badly in this cycle with a smaller dosage (age???).  Never hurts to be careful.  Stomachs are affected by CH anyway (stress and anxiety), but my only issue with Verapamil is mild constipation that can be corrected easily.

Hope the new dosage does the trick for you.

MMM...I have to say I'm confused regarding Verapamil can you help me out?

Went to my MD's this AM and I brought up Verapamil.He went through all the info on it and said he would not prescribe it for me because of all the potential cardiac issues.I presently have no cardiac issues

I went to Epocrates Online to check out the drug as well.Good site

It seems so many of us use Verapamil it leaves me wondering.I'm episodic and presently on Topamax. :-?Out of cycle.Almost out of my mind,not quite ;D