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

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

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

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).

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


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

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

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

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.


                 

Quote:

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.

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

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.