Hello,
My husband suffers from CH and has for the last 5 years. Only last year did he have a name but to his headaches prior to this his family doctor was treating him for migranes. It was not until a trip to the ER that a doctor listened to his symptoms and finally did some research. It was a huge relief to finally have something to call his pain. My husbands CHs happen the first two weeks of August every year. But in the past 5 years they are getting progressively worst. Last year he was taken by ambulance 4 times.
After being to our local ER 8 times last year he was referred to an nerologist. He is now taking 80mg of Verapamil 3 times a day. He started taking these pills in July (one month prior to his yearly attach) and is to continue on them until the end of August (2 weeks past his end date).
So we are 2 days into his season and his has had no accually headaches. BUT he is having all his other symptoms such as bloodshot eyes, sore muscles, slight fever, just an overall feeling of blah. These symptoms seem to come on just like one of his attacks. They start up and last for 30 minutes to an hour and then he is just left feeling tired. Which leads him to beleive he is still having CH but not accually feeling the headache part.
He is happy about the no headaches but would like to know if anyone else is feeling the same way. Should he try upping his pills to take away these side effects, or is there something else he should be asking his doctor for? If anyone else is on Verapamil could you please tell us how it makes you feel? How effect you have found the pill. Any help would be great!

Thank you everyone.
From a very concered wife!

First off, bless your heart for being a supporter. My wife has put up with 29 years of these things, found this board for me and has helped me keep my sanity!

Verapamil is a very common first treatment as a preventative for CH. DO NOT  adjust the doseage without your doctors knowledge as you need to monitor your blood pressure when you increase dosing on Verapamil. Dangerously low blood pressure can result from increasing the dosing.

When you have a minute, read the "oxygen info" link on the left. Even if the verapamil continues to be effective, you can expect some break thru headaches. I can abort an attack in 6-8 minutes using oxygen, beats the 90 minutes of thrashing and beating my head on the head board!!!  Might have to push the doc on this a bit but it's a great feeling having the oxygen at home, knowing even if the beast shows up, you can beat him down quickly! Beats the trips to the er too.

Welcome to the board, get your husband on the board so we can meet him! ;)

Joe

We are well aware of the joy oxygen brings. All trips to the ER were to be hooked up to it. Brings relief to my husband within 2 minutes. Our doctors here do not want to give him oxygen at home. They are all hopefull the verapamil will do the trick.
As for upping our dose we would not do it without the go ahead from the doctors. We are just trying to find some information before I call them tomorrow. The downfall for us is our family doctor knows very little about CH. And our nero lives in another province and about 4 hours away from us. So everything is done over the phone. We only lucked out because the nero was here vacationing last summer and agreed to come into our local hospital to meet my husband. He told us last year that if we needed him at all to call his office. So I will be putting a call in tomorrow morning. Like my husband said he would rather two weeks of what he's feeling now then two weeks of CH themselves.
So like I said for now I am just trying to find some information. Want to know if others taking medication still feel some kind of side effects from the CH.

Thank you again

The Verap dose is much lower than most of use need. This article has become a standard protocol and you will see how much is often required. Suggest you print this for your doc. The source and author are mainline medical.
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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).
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For your learning:

 
Cluster headache.
From: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE (Orphanet Journal of Rare Diseases)
[Easy to read; one of the better overview articles I've seen. Suggest printing the full length article--link, line above--if you are serious about keeping a good medical library on the subject.]

Leroux E, Ducros A.

ABSTRACT: Cluster headache (CH) is a primary headache disease characterized by recurrent short-lasting attacks (15 to 180 minutes) of excruciating unilateral periorbital pain accompanied by ipsilateral autonomic signs (lacrimation, nasal congestion, ptosis, miosis, lid edema, redness of the eye). It affects young adults, predominantly males. Prevalence is estimated at 0.5-1.0/1,000. CH has a circannual and circadian periodicity, attacks being clustered (hence the name) in bouts that can occur during specific months of the year. ALCOHOL IS THE ONLY DIETARY TRIGGER OF CH, STRONG ODORS (MAINLY SOLVENTS AND CIGARETTE SMOKE) AND NAPPING MAY ALSO TRIGGER CH ATTACKS. During bouts, attacks may happen at precise hours, especially during the night. During the attacks, patients tend to be restless. CH may be episodic or chronic, depending on the presence of remission periods. CH IS ASSOCIATED WITH TRIGEMINOVASCULAR ACTIVATION AND NEUROENDOCRINE AND VEGETATIVE DISTURBANCES, HOWEVER, THE PRECISE CAUSATIVE MECHANISMS REMAIN UNKNOWN. Involvement of the hypothalamus (a structure regulating endocrine function and sleep-wake rhythms) has been confirmed, explaining, at least in part, the cyclic aspects of CH. The disease is familial in about 10% of cases. Genetic factors play a role in CH susceptibility, and a causative role has been suggested for the hypocretin receptor gene. Diagnosis is clinical. Differential diagnoses include other primary headache diseases such as migraine, paroxysmal hemicrania and SUNCT syndrome. At present, there is no curative treatment. There are efficient treatments to shorten the painful attacks (acute treatments) and to reduce the number of daily attacks (prophylactic treatments). Acute treatment is based on subcutaneous administration of sumatriptan and high-flow oxygen. Verapamil, lithium, methysergide, prednisone, greater occipital nerve blocks and topiramate may be used for prophylaxis. In refractory cases, deep-brain stimulation of the hypothalamus and greater occipital nerve stimulators have been tried in experimental settings.THE DISEASE COURSE OVER A LIFETIME IS UNPREDICTABLE. Some patients have only one period of attacks, while in others the disease evolves from episodic to chronic form.

PMID: 18651939 [PubMed]  

I may sound like an ass, but imho he is lucky verapamil lets him skip pain part leaving all other symptoms, I would prefer to feel blah than have headache, but I guess every human being primal thinking or almost every human being would think so, I am an ass I admit Jealous ass :P

Anyways, hoping he gets painfree all the cycle and that Verapamil will work this way and better for him forever, noone deserves such pain.

MattyAA wrote on Aug 3^rd, 2009 at 1:01pm:

I may sound like an ass, but imho he is lucky verapamil lets him skip pain part leaving all other symptoms, I would prefer to feel blah than have headache, but I guess every human being primal thinking or almost every human being would think so, I am an ass I admit Jealous ass :P Anyways, hoping he gets painfree all the cycle and that Verapamil will work this way and better for him forever, noone deserves such pain.

Yeah you SOUND like an ass, but we know you better then that!!! ;D

I agree with what Matt says, that'd be awesome if his whole cycle continues like that. I used verapamil in the mid 80's at a dose that I now realize was way too low, I use lithium now so I'm not much help on the verapamil stuff.

You mentioned "providence"...let us know what area of the world you live in and maybe some of your co-residents can help you get the oxygen prescribed. There's no way anyone should have to travel to the er to get something that's so effective, cheap and safe to use.

Joe

Ass.

Signed,

A fellow ass

P.S. - Joe, that's "Province." Most likely Canada, eh?

Very familiar story...

I started verapamil a few weeks before my next cycle was expected.  First time I've tried this med.  So far there have been no real CH attacks.  A few weeks ago I felt a signature "tug" in my eye that signals a CH starting, but nothing developed!  That happened about 4 or 5 days, then stopped also.

The verap makes me a bit tired, and occasionally "spaced out", but that's worth no CH attacks.  More alarming have been bulging veins - first in hands and feet, then other places, leaving black and blue marks and a worry about where they will bulge next.  I'm going to check for bloodshot eyes at the next bulge.

I am at the end of what would be my 30-34 day cycle, and Dr. has advised to start tapering off the verap now.  This is sooner than planned, but the vein thing has us a bit spooked.  We'll see how it goes.

Consult your doctor about the verapamil.  I've consulted my neuro and physician twice about these effects on me.  First decision was "stay on it", now it's "time to taper off".

Good luck to your husband, and kudos to you.

Fox