Hello all,

I am a CH sufferer currently running on 240mg of Verapamil per day. I'm on my 3rd dose increase and can have more subject to ECG results.

I have a masked/muted attack every morning varying between migraine and headache level. No noticeable improvement with the increase in Verapamil.

I cannot abort these muted attacks as attempting to do so brings on a full strength rebound attack.

I can live with these lower level attacks, although my employers are hell bent on me returning to my normal work hours within a month or I will be dismissed. My hours were changed by mutual agreement to allow me to recover from CHs before commencing work.

My biggest problem right now is fatigue. I seem to be fine one day, barely able to even move the next.

My heart rate is strong, but I experience cold fingers and feet (new for me) and shallow breathing - almost panting at times. Also aches and pains and jumping/twitching nerves.

Does anyone have any thoughts? My GP is only aware of Verapamil affecting heart rhythm in some people, but I am clear so far.

I do not believe I am suffering from exhaustion as I eat well, get a full nights sleep before my attacks start at 7:30am, do not smoke and get a reasonable amount of exercise.

Any comments or suggestions would be greatly appreciated.

On a lighter note, one of my managers told me he'd heard of CH and was not happy that there was a potential suicide on the team. He had been somewhat unpleasant to me, so I told him my thoughts were currently turning to murder/suicide, but I was sure given a pleasant work environment nothing would come of them.

He's been quite civil since our wee chat.

YES!
LOCATING HEADACHE SPECIALIST

1. Search the OUCH site (button on left) for a list of recommended M.D.s.

2. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

3.  Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

4. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or ; On-line screen to find a physician.

5. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or Look for "Physician Finder" search box. They will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.

6. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or NEW certification program for "Headache Medicine" by the United Council for Neurologic Subspecialties, an independent, non-profit, professional medical organization.
        Since this is a new program, the initial listing is limited and so it should be checked each time you have an interest in locating a headache doctor.
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If a specialist isn't possible or a long delay in seeng one, print following and give to the GP.
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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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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.

Hi Sprog:

I started using coenzyme Q10 about two months ago and have noticed it, along with ginseng, have helped my energy level.  My latest CH episode just started, so I am curious how these supplements may help with the fatigue I usually get (much like you I think).  I wouldnt say its "exhaustion" either.  For me its a result of the poor sleep and general craptitude that comes with a CH episode.  In a weird sense I sometimes feel in between hits that I have a ton of energy, but then I crash oout again.  Hard to figure it out (and I stopped trying to overthink it years ago...just stick to my regimen of vera, mela and O2 as well as some relaxation techniques to help with overall mood/coping and so I can "enjoy" or get the most done during the painfree hours w/out thinking to much about whats coming up).  Also like yourself, I find O2 rather ineffective for the lower-pain attacks (which verapamil seems to lead to).  I find that verapamil tends to prolong the length of my episodes by a few weeks, but decreases the number and severity of attacks.  A welcomed tradeoff.

LOL at your comment to your boss.  I trust (hope) you are not really suicidal and just making some sort of "positive" out of all this.  Luckily now I am a work-at-home consultant for 90% of my time but in past years I've had to quit a job because of the CH and lack of medical leave policy (and lack of understanding at employer end).

Anyway, I can keep you posted if the coenzyme Q10 helps with fatigue.  It seems to be getting a lot of positive praise for its energizing qualities...and seems also safe with few if any side effects.

All the best

Quote:


If I may ask: what kind of mask was it, what was the flow rate, how long did you stay on O2 after the attack subsided, and did you breathe so as to achieve hyperventilation, you know, tingling in your limbs, etc?

Just wondering since the experience of the medical community tends to be cardiopulmonary and not CH style techniques. All in all, you may be one for whom O2 is not so effective. Blessings. lance

Sprog, you're not the only one for whom O2 is less than effective, although sadly (for all ya'll) I think it is a minority report. O2 chases away the shadows and the big hits alike for me. Your question:

Quote:


The collective wisdom and research demonstrated by Batch indicates that remaining on O2 for 10-15 minutes, probably at a reduced flow rate but still breathing pure O2, will go a long way in preventing rebound clusters.  Someone knows why. I just know it works for me. Keep searchin' my man, you'll find your magic bullet(s). You may need a new gun but I want you to be confident you can beat the beast. Blessings. lance

Have you had your testosterone levels checked?  Low testosterone can cause lethargy and clusters.

Sprog wrote on Aug 4^th, 2011 at 8:44am:

   No he wasn't calling you a girly man! This is a serious question as a bunch of CH'ers have had it checked, found it to be below acceptable standards, and by using the gel or the patch, have raised their levels and stopped their attacks. Certainly not a one size fits all but worth a look see. Read the post under medications and treatments, "Why don't we pay attention to this?" Lots of good information on this approach. Wishing you peace and some pain free time soon.

Joe

Im interested in seeing where this is going.  I've had a bad 2 years for CH.  More frequent, longer cycles and stronger hits.  I believe it cost me my job, a lot of time, pain, money, and undue stress on my fiancee, and can only hope she survives through it.  We've tried a lot of different meds this yr with varying success.  The one thing I've noticed through that is that this year I've developed a lot more of the lethargy I've read about, and now twitching, swollen ankles if I don't sleep enough or move around enough, sleep anxiety (insomnia) when I can't sleep, and sleeping too much when I can.  That drove me back to the o2/verapamil combo that used to work so well... it still works, just not as well as before, and not as well as we'd hoped the other meds would pan out.  Oddly, these side effects haven't gone away with the medicines, so WTF?  I'll have to ask about this angle.  Please update with anything you discover!

Relax guys. That was just my (I'm told) robust sense of humour.
I did in fact get my testosterone levels checked and the results were good - delivered in a supercharged 6.0 litre V8 delivery van driven by Bruce the tattooed mans man. Bruce still leaves messages to tell me he'd bat for the other side if I asked him to.

Meanwhile I'm developing a nice facial tic from the clusters which I'm trying to exhibit to the rhythm of a Tom Jones number to really impress the girls.