Hi guys, was just passing by and wondered if any of you could share some of your wisdom and or experience. First off I've not been diagnosed with CH and I've not had what I would call an attack since last september. I've been having daily headaches since the weather changed in January, not CH but what I had between attacks last year.

What I want to know is if any of you guys have had similar headaches with no attacks? Could it be CH related or am I looking at something else? I can get sharp pains or dull aches in one or more areas at a time, mainly my eye, forehead, ear, top teeth, back of neck, side of head and a sore scalp, all on one side of my head. This is sometimes accompanied by watery eye and blocked nostril but not always.

Sorry for going on but I'm confused, if I was having proper attacks I would know what was going on but the pain is nowhere near as bad as CH and can last for 5 seconds or a few hours.

Anyone had similar experiences? I don't have a good neuro to go to and I am going to see a doc next week not that it will do much good! I'm on Propanalol which does nothing but I have to prove it does nothing before I can change and I don't even know if this is CH.

Thanks for listening.

First, I'm not a doctor nor is this medical advice. You should seek a neuro. But, having said that, from your description it sounds like some "all day" shadows I have had. They are cluster related, and they are attacks. Too low a level to be my familiar old pattern of excruciating like-lightning hits, but extremely annoying and occasionally sharp. They will kick off a migraine if left unattended. Why don't you think it's an attack? I usually abort with O2, but when they persist, will resort to trex or migranol just to be rid of them. If this is what you are having you should address them with the same vigor you address your regular hits. Hope this helps. Blessings. lance

For 2-3 years when, my CH pattern was still evolving, I had "wandering" symptoms. Location, quality of pain, unclear sensations--all part of the picture.

Hardly a diagnosis but with CH variety is common!

Thanks, the main reason I asked for your opinions is the symptoms seem so unclear with no pattern when my first period last summer was so clear and had many common CH symptoms. I had headaches throughout with a definate much more severe 'attack'.

Now I don't know what is happening, not a lot to be honest but it is annoying and it's not right to have headaches everyday. I have good days where I might only get one 10 second mild ache somewhere. Other days I have lots of short sharp pains wandering all over and persistant but relatively mild aches.

I didn't expect too much confirmation but I wanted to know if you guys recognised my ramblings. Even if I got a 'no never had that!' it is useful to know. You all know first hand and I trust you more than my useless neuro! ;D

Well I guess you were right because I've just had to break into the old supply of Imigran. Had my first proper attack in about 6 months and I'd almost forgotten about all the head pressing and pain! Its been getting worse over the last few days and I can see it's only going to carry on!

Hope you are also using a preventive med along with the abortive.

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Unfortunately I only have Propanalol which I started taking last cycle but the cycle ended shortly after so thats all I have until its proven not to work for me; which I guess has just happened! The neuro and GP were rather unhelpful last time and didn't want to prescribe anything with more serious side effects, which makes sense as this is all very new to me and I've got a long road to go down before I get a proper diagnosis and meds. It's just frustrating and leaves me feeling hopeless as there is not a lot of help available. Especially on a bloody bank holiday weekend! >:(

Ref. msg. #6. Suggest you print out the PDF file which I may have sent last message and give to your doc. Another list of meds along with evaluations of effectiveness, also PDF, below.

The Prop. you have been given is at least 30-years out of date as a treatment for Cluster!

Over the years we have received so many complaints about the poor level of treatment skills in the UK that it only evokes sympathy from the colony.

May be a repeat, but do contact with you excellent support group for guidance in dealing with your system:

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Thanks again Bob, I have seen my doctor again and talked about the different treatments available. Basically the method is try everything to find something that works, starting with the one with the least side effects. It can also take months of trying each med to rule out it doesn't work.

I spoke about verapamil and oxygen but my GP wont prescribe either and my neuro wants to see what else works first. Therefore I am now starting on Pizotifen as this has less ill effects than verapamil. Pizotifen does at least mention CH in the leaflet which is more than can be said for propanalol which I have been on for nearly 3 months with no results!

It's a long slow road it seems here in the UK. Thanks for your info though Bob.

Ian, I'm surprised as just how cautious your docs are.

Sending the latest evaluation report on meds from the leadinn headache journal in the U.S. Maybe this infro will budge him. (PDF below.)
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This protocol for using Verapamil has found wide acceptance and, as you can see from the date of the article, has a long record of use. The one safety concern, which emerged a couple of years or so ago, is not a barrier to its us. (The name, Goadsby, is one of the leading headache docs fomerly in London. His work is a major source of info for us.)
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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).

=======================================
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.
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Verapamil warning
« on: Aug 21st, 2007, 10:38am »   

--------------------------------------------------------------------------------
I posted this information recently in the form of a news release but more details here.
__________________

Neurology. 2007 Aug 14;69(7):668-75. 

 
Electrocardiographic abnormalities in patients with cluster headache on verapamil therapy.

Cohen AS, Matharu MS, Goadsby PJ.

Headache Group, Institute of Neurology, The National Hospital for Neurology and Neurosurgery, Queen Square, London, UK.

BACKGROUND: High dose verapamil is an increasingly common preventive treatment in cluster headache (CH). Side effects include atrioventricular block and bradycardia, although their incidence in this population is not clear. METHOD: This audit study assessed the incidence of arrhythmias on high dose verapamil in patients with cluster headache. RESULTS: Of three hundred sixty-nine patients with cluster headache, 217 outpatients (175 men) received verapamil, starting at 240 mg daily and increasing by 80 mg every 2 weeks with a check electrocardiogram (EKG), until the CH was suppressed, side effects intervened, or to a maximum daily dose of 960 mg. One patient had 1,200 mg/day. Eighty-nine patients (41%) had no EKGs. One hundred eight had EKGs in the hospital notes, and a further 20 had EKGs done elsewhere. Twenty-one of 108 patients (19%) had arrhythmias. Thirteen (12%) had first-degree heart block (PR > 0.2 s), at 240 to 960 mg/day, with one requiring a permanent pacemaker. Four patients had junctional rhythm, and one had second-degree heart block. Four patients had right bundle branch block. There was bradycardia (HR < 60 bpm) in 39 patients (36%), but verapamil was stopped in only 4 patients. In eight patients the PR interval was lengthened, but not to >0.2 s. The incidence of arrhythmias on verapamil in this patient group is 19%, and bradycardia 36%. CONCLUSION: We therefore strongly recommend EKG monitoring in all patients with cluster headache on verapamil, to observe for the potential development of atrioventricular block and symptomatic bradycardia.

PMID: 17698788 [PubMed]

« Reply #7 on: Today at 1:01am » WITH THANKS TO "MJ" FOR POSTING THIS EXPLANATION. 

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The article summarized in layman terms from the website below.

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"Cluster Headache Treatment Poses Cardiac Dangers 
Off-label use of verapamil linked to heart rhythm abnormalities, study finds 

By Jeffrey Perkel
HealthDay Reporter   

MONDAY, Aug. 13 (HealthDay News) -- People who use a blood pressure drug called verapamil to treat cluster headaches may be putting their hearts at risk.

That's the finding from a British study that found heart rhythm abnormalities showing up in about one in five patients who took the drug in this unapproved, "off-label" way.

"The good news is, when you stop the drug, the effect wears off," said study lead author Dr. Peter Goadsby, professor of neurology at University College London. "So, as long as doctors know about it, and patients with cluster headaches on verapamil know they need EKGs [electrocardiograms] done, it is a completely preventable problem." 

The study is published in the Aug. 14 issue of Neurology.

In a review of the medical records of 217 patients given verapamil to treat their cluster headaches, a team led by Goadsby found that 128 had undergone an EKG, 108 of which were available in the medical records.

Of those 108 patients, about one in five exhibited abnormalities (mostly slowing) in the heart's conduction system -- the "natural pacemaker" that causes the organ to beat. Most of these cases weren't deemed serious, although one patient did end up having a pacemaker implanted to help correct the problem. In four cases, doctors took patients off verapamil due to their EKG findings.

One in three (34 percent) developed non-cardiac side effects such as lethargy and constipation. 

"It is a very nice piece of work, because it provides commentary on a boutique [that is, niche and off-label] use of the drug," said Dr. Domenic Sica, professor of medicine and pharmacology in the Virginia Commonwealth University Health System. He was not involved in the study.

Cluster headache affects about 69 in every 100,000 people, according to the Worldwide Cluster Headache Support Group Web site. Men are six times more likely than women to be afflicted, and the typical age of onset is around 30. According to Goadsby, the disease manifests as bouts of very severe pain, one or many times per day, for months at a time, usually followed by a period of remission. 

Verapamil, a calcium-channel antagonist drug, is approved by the U.S. Food and Drug Administration for the treatment of cardiac arrhythmias and high blood pressure. The medicine is typically given in doses of 180 to 240 milligrams per day to help ease hypertension. 

However, the patients in this study received more than twice that dose for the off-label treatment of their cluster headaches -- 512 milligrams per day on average, and one patient elected to take 1,200 milligrams per day. The treatment protocol involved ramping up the dose from 240 milligrams to as high as 960 milligrams per day, in 80 milligram increments every two weeks, based on EKG findings, side effects, and symptomatic relief. 

Many patients may not be getting those kinds of tests to monitor heart function, however: In this study cohort, about 40 percent of patients never got an EKG. 

Given the typical dosage, Sica said he was surprised so many patients were able to tolerate such high amounts of the drug.

"When used in clinical practice for hypertension, the high-end dose is 480 milligrams," said Sica. "Most people cannot tolerate 480."

Dr. Carl Pepine, chief of cardiology at the University of Florida, Gainesville, was also "amazed" at the doses that were tolerated in this study. "The highest dose I ever gave [for cardiology indications] was 680 milligrams. This might give me more encouragement to use the drug at higher dose," he said. 

But Sica said he thought cardiac patients -- the typical verapamil users -- were unlikely to tolerate the drug as well as the patients in this study, because verapamil reacts differently in older individuals, who are more likely to have high blood pressure, than in younger patients. The average patient in the United Kingdom study was 44 years old. 

According to Sica, two factors would conspire to make older individuals more sensitive to verapamil. First, the metabolism of the drug is age-dependent, meaning that older individuals would tend to have higher blood levels of the drug, because it is cleared more slowly than in younger individuals.

Secondly, the conduction system of the heart (the natural "pacemaker" becomes more sensitive to the effects of verapamil with age, Sica said. 

"It's likely that an older population would not be able to tolerate the same dose," he concluded. 

According to Goadsby, the take-home message of this study is simple: Be sure to get regular EKGs if you are taking verapamil for cluster headaches. Goadsby recommended EKGs within two weeks of changing doses, and because problems can arise over time -- even if the dose doesn't change -- to get an EKG every six months while on a constant dose. 

"The tests are not expensive, and they are not invasive," he said. "They are not in any way a danger to the patient."

For the most part, Goadsby said, should a cardiac problem arise, it will typically go away once the treatment is halted." 
========================================

J Headache Pain. 2011 Jan 22. [Epub ahead of print]

Cardiac safety in cluster headache patients using the very high dose of verapamil (=720 mg/day).
Lanteri-Minet M, Silhol F, Piano V, Donnet A.

Département d'Evaluation et traitement de la Douleur Médecine palliative, Pôle Neurosciences Cliniques du CHU de Nice, Hôpital Pasteur Avenue de la Voie Romaine, 06002, Nice Cedex, France, lanteri-minet.m@chu-nice.fr.

Abstract
Use of high doses of verapamil in preventive treatment of cluster headache (CH) is limited by cardiac toxicity. We systematically assess the cardiac safety of the very high dose of verapamil (verapamil VHD) in CH patients. Our work was a study performed in two French headache centers (Marseilles-Nice) from 12/2005 to 12/2008. CH patients treated with verapamil VHD (=720 mg) were considered with a systematic electrocardiogram (EKG) monitoring. Among 200 CH patients, 29 (14.8%) used verapamil VHD (877 ± 227 mg/day). Incidence of EKG changes was 38% (11/29). Seven (24%) patients presented bradycardia considered as nonserious adverse event (NSAE) and four (14%) patients presented arrhythmia (heart block) considered as serious adverse event (SAE). Patients with EKG changes (1,003 ± 295 mg/day) were taking higher doses than those without EKG changes (800 ± 143 mg/day), but doses were similar in patients with SAE (990 ± 316 mg/day) and those with NSAE (1,011 ± 309 mg/day). Around three-quarters (8/11) of patients presented a delayed-onset cardiac adverse event (delay =2 years). Our work confirms the need for systematic EKG monitoring in CH patients treated with verapamil. Such cardiac safety assessment must be continued even for patients using VHD without any adverse event for a long time.

PMID: 21258839 [PubMed

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Their attitude doesn't seem uncommon from what I can see from researching. I also think some of their trepidation may come from not knowing what is causing the HA.  My neuro didn't seem to know a lot about CH which is why I will be looking for a new referral to a specialist migraine clinic nearby. I would also be more of a risk and more work to them too! Everyone needs a lot of convincing, I suppose they get a lot of people with 'the worst headache ever!' and I need to have enough evidence with diaries and history of this to prove its not a migraine. Frustrating to say the least!

Many thanks again Bob, you really have a wealth of information! I shall take the info to try bolster my case.

Here are some fragments from material from the OUCHUK site: gives you leads on sources of care and your rights to ask for immediate access.
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Message: "Dyno", Tenby, Wales, UK, Aug 9, '09:
[Bob-excludes Wales per Dyno]
looking at their website it looks like a better alternative  START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Why not ask to see the top man in the country - Dr. Manjit Matharu at UCL. Under Patient Choice - look at the link below - you have the right to choose who you see.

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and this - copied from the OUCH(UK) website

Quote:

You can ask your GP to refer you to one of our hospitals for treatment
Central to the government’s healthcare policy is that patients should be given the opportunity to be more involved in making decisions about their healthcare. If you and your GP agree that you need to be referred to see a specialist, then you have a choice of at least four local hospitals or clinics. Since May 2006, that choice has been extended. You can now also choose to go to any Foundation Trust in the country, including UCLH. Whether you’re from Cornwall or Camden, as a patient you now have the right to choose UCLH. You can ask your GP to refer you to one of our hospitals for treatment.

[Source: UCL website]
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City of London Migraine Clinic [and other types]  START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
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OUCHUK list of GB resources and CH support groups in other countries. (5/10)

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Hi Ian

I know I'm coming in a little late, to this, but here goes. I have had your exact circumstances. The headaches range from all day shaddows through to very low kip attacks. Advice I've read seems right, you have to take them seriously. But the main issue seems to get yourself on a prevent.
I will agree that our GP's are generally loath to prescribe anything, unless a specialist has told them such. So its clearly of utmost importance that you get to see a good specialist.
I tried a large range, including Verapamil and having had bad reactions to some, I ended up being put on 'Epilim', clearly not a drug designed for CH, but something that has helped me, until my most recent episode, which went berserk and the continued HA's seemed to never end. My Neuro has agreed to me having O2, for my next cycle, but also increased my dosage of Epilim. I'm now not getting the HA's, and hope I'm better prepaired for the beasts return, whenever that is.
Basically pal, push the docs all the way, do not accept a shoddy half hearted service. It is our NHS, after all, we pay for it, we are entitled to make full use of it, when we need it as badly as we CH sufferers clearly do!!!

Hope your soon PF

All the best

Andrew

It's never too late Andy! I am now on pizotifen at bedtime and apart from feeling a little foggy in the mornings I'm not feeling too bad. The all day shadows seem to have reduced to a few short aches and pains, getting worse toward the late evening. But no attacks as of yet and I can increase my dose from here. As for the doctors, I never know how much I should put up with and what a normal headache is. The plan is to see how the pizotifen plays out and go back. I'm going back to the neuro in just over a week so I'll take it from there.

Hi Ian

I get th sam thing , vr sin my last yl i'v ha points of pain all ovr my ha th full on saow thing ............. oops think my ky boar  is brok  I'll post latr

OK lets try this again

HI Ian

Ever since my last (also first ) cycle , which ended about a year and a half ago , I've had constant shadows consisting of all the symptoms of CH but with very little pain and some times points of pain in various different places on the top of my head.

But I can usually see them off with a can of red bull , It's a bit pricey but it's the only energy drink that I could find with out artificial sweeteners in other than relentless which I can't stand. BTW artificial sweeteners make me feel very sick but that's just me.

Going to the doctors is a bit like pulling teeth around here , I was Lucky and got a good one who diagnosed me straight away and after giving me various migraine drugs to try he put me on verapamil and gave me imigran injections saying that the other stuff that didn't work was just to confirm his diagnosis.

Even at a low dose ( 40mg per day) the verapamil made me feel numb shaky and dizzy , not good side effects for a roofing carpenter.

All that said verapamil is very widely used as a prevent at much higher doses than I had with no side effects .

Imigran rocks !

As far as I can tell CH likes to be different just to keep us on our toes. This constant shadowy thing is a pain for shore but don't be looking over your shoulder for the BIG ONE every time it happens but do stay prepared , I'm never more than 2 minuets away from a shot of imigran.

I hope this has been of some help to you.

God bless

Nigel

A quick update on what's been happening; I've been on pizotifen for five days now and it seemed to work well at first, slight shadowing with long dopey periods, gradually the drugged feeling has worn off completely but the HAs have slowly returned. Is this my body adapting to the meds or the beast outwitting the docs again? Either way I can now see I'm having low kip attacks. It has been difficult to distinguish between the shadows and attacks but seems to be getting clearer. Just wary to up my dose before the weekend because I have to work. Thanks for the replies fellas.