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Newbie from Canada - Hi! (Read 1399 times)
popeye
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Newbie from Canada - Hi!
Mar 14th, 2010 at 9:37am
 
Just call me popeye - cause that's who I look like when I'm suffering from a CH.
I've been getting cluster headaches for about a decade but have only known that they were not migraines for about 4 or 5 years.  Nothing I tried worked when I was misdiagnosed except pounding back coffee at the onset of a CH. (I stumbled upon that one myself  Smiley) My doctor prescribed verapamil a few years back and that seemed to work fine whenever I'd go through a spell. However, I recently started getting them again and the verapamil proved to be inaffective this time around. It has always been the sustained kind. First it was 120 mg - then when that wasn't working (just recently) she increased it to 180 mg. Still nothing. Went back this past week and she changed my meds to Apo-Propranolol 40 mg twice a day. This too has proven to be inaffective. I've had 3 this week that I'd call kip 9 headaches. Going back again to see her this Tuesday. I have an appointment with a specialist April 9 but is there a medication I can suggest to my family doctor in the meantime? She really doesn't know much about CH and I'm her only patient suffering from them.
I can't believe I only just found this site. I feel bad for all the sufferers here but it feels so good to know that I'm not alone.  Smiley
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Re: Newbie from Canada - Hi!
Reply #1 - Mar 14th, 2010 at 9:47am
 
Rapid-release verapamil. CH'ers seems to have much better luck with it.

Also, try combining it with lithium, 600-1200mg per day.
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"I have been asked if I have changed in these past 25 years. No, I am the same. Only more so."  --Ayn Rand
 
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Bob Johnson
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Re: Newbie from Canada - Hi!
Reply #2 - Mar 14th, 2010 at 10:55am
 
The Prop. she is trying is an old migraine treatment which is not effective with Cluster.

If you have the option, finding a headache specialist, vs. general practice or even neurologists, is a better course. If you don't have this option, you might print out the following and give to your doc.
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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.

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Cluster headache.
From: Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register (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]
===========

Here is a link to read and print and take to your doctor.  It describes preventive, transitional, abortive
and surgical treatments for CH. Written by one of the better headache docs in the U.S.  (2002)
 
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register
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Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register
ALL NEW!! HEADACHE 2008-2009
The new 72 page Headache 2008-2009 is hot off the press! Click here to download the PDF instantly! (free)

If you would like a bound copy, send $12 (includes shipping) to
Robbins Headache Clinic
60 Revere Dr, Suite 330
Northbrook, Ill.60062

OR call 847-480-9399 to use Visa or Mastercard.



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Bob Johnson
 
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Re: Newbie from Canada - Hi!
Reply #3 - Mar 15th, 2010 at 3:43am
 
2 things. Your dose of verapamil is really low. My suggestion...(not a doc just a 31 year sufferer)...get her to start gradually increasing the verapamil, some go as high as 960 mg a day to get relief. Must be done under a doctors care as it will affect your blood pressure.

While you are doing that, ask her to put you on a 2 week prednisone taper. I start at 80 mg a day and taper down to zero. many get immediate relief from prednisone.....the problem is it is not a good med to take long term due to potential side effects. A great interim drug while you get the verapamil dosing adjusted up.

Joe
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"Somebody had to say it" is usually a piss poor excuse to be mean.
 
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popeye
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Re: Newbie from Canada - Hi!
Reply #4 - Mar 21st, 2010 at 3:36pm
 
Thanks for all your help guys.
I'm still getting CHs but I've got the ball rolling on possible "solutions"  Tongue.

Cheers
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Re: Newbie from Canada - Hi!
Reply #5 - Mar 21st, 2010 at 11:53pm
 
In consultation with your doctor and under regular ECG monitoring your Verapamil dosage should be in the 480mg per day plus dosage. The current dosage strikes me as too low. Rapid release versus sustained release makes a huge difference for many of us.
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