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.

Sprog, I don't recall if you are seeing a headache specialist or if the GP you mention is your only source of help. If the latter, then I would strongly urge you to add a specialist to your armory.  Your verapamil dose is minimal for CHs. Although some have found relief at that level, many of us need a higher Rx. I am currently taking 640mg/day without the side effects you mention. Some take both lithium and verpamil. I have no idea why you feel as you do but I wonder if it is not related to CHs. Or if it is related to the strain of daily and repetitive attacks. Or something entirely diferent. The more you stray from the classic descriptions of CHs, the more I believe you must work with your doctors to determine what is going on. You do not mention high flow, nonrebreather mask, O2 therapy. It is effective even at low levels of pain when done properly. Perhaps you could fill in some of the gaps your post seems to leave? Blessings. lance

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

5. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE 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. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE 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.
======
If a specialist isn't possible or a long delay in seeng one, print following and give to the GP.
---
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.

Hello Lance,

I am seeing an excellent Neurologist. She has no quick answer regarding tiredness.
Another CH sufferer tells me that he too suffers from fatigue, but cannot be sure if it is directly related.

Admittedly I do have a stressful job (prior to CH I would have described it as challenging) and merciless employers, all coupled with a disrupted family life due to changing my work hours so I can have my attacks and hold down a job.

My Verapamil dose is still on the increase, but it is subject to ECGs for each increase. The Neurologist will not allow high doses until she is sure my heart will not be adversely affected.

Much as we all love oxygen, I'm afraid it has no effect on the lower level attacks I am currently experiencing.

Oxygen helped a lot when I was having full strength attacks, but not once did it abort one. I was shown how to use a mask under medical supervision, so I know I was using it correctly.

Perhaps it is as you say, the fatigue is a biproduct of CH and not actually caused by it.

I appreciate your thoughts.

Best wishes
Stephen

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
    

Hello Stymie,

Thank you very much for that. I will follow up on the coenzyme and ginseng.

It has been suggested that I may be suffering from vitamin D deficiency as what I'm experiencing coincides with some of the many, many symptoms. I'm dubious as I spend as much time as I can outdoors, but I'm willing to try a supplement and be proven wrong.

I know what you mean about bursts of energy. In between my low points I achieve a lot and seem to think very clearly.

One of the things I do while having these lower level attacks is plan what I intend to do once Beast Juniour has departed. So once I am up and about I tend to be reasonably productive.

Maybe CH is natures version of nagging to get us to complete jobs.

No I'm not really suicidal. I have far too many people to annoy to contemplate early departure.

Please do keep me posted on coenzyme Q10.

Great to hear from you.

Best regards
Stephen

Quote:

I was shown how to use a mask under medical supervision, so I know I was using it correctly.

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

Hi Lance,

When I first came on here I received truckloads of info on O2 and how to use it. I read it all and followed the techniques and flow rates.

The doctor was alarmed at the flow rate I wanted, but let me have my way (and all of her O2). The mask was a non rebreather and yes I did hyperventilate.

Oxygen is a huge help with full attacks, but has little to no effect on what I am currently experiencing.

I am curious as to why I would continue using O2 after an attack has subsided?

Best regards
Stephen

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:

I am curious as to why I would continue using O2 after an attack has subsided?

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

Stephen,

You might want to read the post I put up in the Medications, Treatments, Therapies forum titled "123 Days PF and I Think I Know Why."  It's at the following link:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

With the exception of oxygen therapy at flow rates that support hyperventilation, I'm not a big fan of the traditional methods of treating our disorder...  Most of the medications are too invasive, not fully effective and all carry one or more troubling side effects.  In short, the risk to benefit ratio for these medications suck.

The anti-inflammatory regimen in the post above may just help.  I've been pain free and had a tremendous boost in energy since I started it last October.  A lot of CH'ers have provided feed back on their experience with this regimen and to date, it appears 80% of the CH'ers who have tried this regimen are experiencing favorable results.

Take care,

V/R, Batch

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

Comments like that start brawls, but I'm sure you meant no offense.

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

Comments like that start brawls, but I'm sure you meant no offense.

;D   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

Headache. 2006 Jun;46(6):925-33. 


Testosterone replacement therapy for treatment refractory cluster headache.

Stillman MJ.

Objectives.-To describe the clinical characteristics and laboratory findings of cluster headache patients whose headaches responded to testosterone replacement therapy. Background.-Current evidence points to hypothalamic dysfunction, with increased metabolic hyperactivity in the region of the suprachiasmatic nucleus, as being important in the genesis of cluster headaches. This is clinically borne out in the circadian and diurnal behavior of these headaches. For years it has been recognized that male cluster headache patients appear overmasculinized. Recent neuroendocrine and sleep studies now point to an association between gonadotropin and corticotropin levels and hypothalamically entrained pineal secretion of melatonin. Results.-Seven male and 2 female patients, seen between July 2004 and February 2005, and between the ages of 32 and 56, are reported with histories of treatment resistant cluster headaches accompanied by borderline low or low serum testosterone levels. The patients failed to respond to individually tailored medical regimens, including melatonin doses of 12 mg a day or higher, high flow oxygen, maximally tolerated verapamil, antiepileptic agents, and parenteral serotonin agonists. Seven of the 9 patients met 2004 International Classification for the Diagnosis of Headache criteria for chronic cluster headaches; the other 2 patients had episodic cluster headaches of several months duration. After neurological and physical examination all patients had laboratory investigations including fasting lipid panel, PSA (where indicated), LH, FSH, and testosterone levels (both free and total). All 9 patients demonstrated either abnormally low or low, normal testosterone levels. After supplementation with either pure testosterone in 5 of 7 male patients or combination testosterone/estrogen therapy in both female patients, the patients achieved cluster headache freedom for the first 24 hours. Four male chronic cluster patients, all with abnormally low testosterone levels, achieved remission. Conclusions.-Abnormal testosterone levels in patients with episodic or chronic cluster headaches refractory to maximal medical management may predict a therapeutic response to testosterone replacement therapy. In the described cases, diurnal variation of attacks, a seasonal cluster pattern, and previous, transient responsiveness to melatonin therapy pointed to the hypothalamus as the site of neurological dysfunction. Prospective studies pairing hormone levels and polysomnographic data are needed.

PMID: 16732838 

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!

I would strongly encourage you to read the post under medications and treatments, "Why don't we pay attention to this?" It's very long, but it has a LOT of personal experiences laid out. Many have gone pain free for extended periods of time going this route. Again, not a "one size fits all" med, but certainly worth exploring.

Given what sounds like a lack of success with your current regimen, might be time to look at alternative treatments too. Please visit this link to our sister site and see if it might be a route you're interested in.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

[smiley=hug.gif] That's for your fiance. Supporters carry a lot of weight for us.

Joe

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. :D

Hey Sprog,

If you really do have a facial tic  :D, those are known to be caused by a magnesium deficiency and supplementing with something like magnesium citrate can relieve 'em.

I too have gained some energy form CoQ10 and Siberian ginseng, and I hope you'll seriously look into Batch's D3 regimen and the clusterbusters approach, both of which hold the potential to snuff your episode right out. Clusterbusting has been shown to be more effective than verapamil or any other drug.