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Cluster Headache Help and Support >> Cluster Headache Specific >> Verapamil Changed HAs ?
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Message started by JoeKen on Apr 24th, 2009 at 9:58am

Title: Verapamil Changed HAs ?
Post by JoeKen on Apr 24th, 2009 at 9:58am
Hi Folks,
Long time, no visit !!
About 6 months ago the Consultant upped my Verapamil from 120 mg per day to 240 mg in the morning and 120 mg in the evening. It began to affect my cluster HAs as follows (or coincidence ?): -
First the intensity of the HAs (KIP scale) diminished, then the type and location of HAs changed, and now they have changed again.
First change was from classic CH (centred behind the eye but with a vertical pain field running up into behind the forehead and down to the cheek area), to nearly classic migraine (horizontal across the forehead above and behind the eye  -  no eye pain or tearing).
The next change was from this to 'normal' less painful HAs in this same area. All changes took place gradually and imperceptably.
Nothing else has changed, the timing, (mid to late afternoon start), and duration, (until bed time, fading to zero during sleep), and the frequency, (around 2 HAs every 3 days), remains the same.
The net result of all this is that currently I can control, sometimes eliminate, the pain using a couple of doses of a combination of 1 grm paracetamol and 30 mg of codeine. In the last month or 6 weeks I have had cause only once to revert to almotriptan tabs and/or oxygen  -  life is great !!
Is this an unusual response?  -  has anyone else experienced anything similar ?.
At the moment I can honestly claim NOT to suffer from CH for the first time in around 10 years and probably longer (diagnosed around 10 years ago but suffered much longer).
The improvement has been so imperceptible that, hopefully, it may continue even further  -  let's hope. ;D
Thanks for your interest,
JoeKen. :)

Title: Re: Verapamil Changed HAs ?
Post by Bob_Johnson on Apr 24th, 2009 at 11:43am
If you have not discovered your excellent support group, please make contact: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE
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Adjusting your Verap dose may be a real help. This protocol has wide acceptance and works well.

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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I'm concerned that you are using pain meds rather than one of the standard cluster abortives. Suggest you print out this list and use as a discussion tool with you doc.

HERE ARE TWO MAJOR DOCUMENTS WITH RECOMMENDED TREATMENTS FOR CLUSTER HEADACHE, ONE FROM A U.S. PHYSICIAN, THE SECOND FROM EUROPE.
_________________________________________
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE
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. Rozen)
================
Treatment guidelines from Europe

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A. May, M. Leone, J. Áfra, M. Linde, P. S. Sándor, S. Evers, P. J. Goadsby:
EFNS guidelines on the treatment of cluster headache and other
trigeminalautonomic cephalalgias.
European Journal of Neurology. 2006; 13: 1066–1077.

Download free full text:
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE
(Thanks to "cluster" for link.)



Title: Re: Verapamil Changed HAs ?
Post by DennisM1045 on Apr 24th, 2009 at 12:35pm
I'm glad it is working for you.  I too get great relief from Verapamil.  

It does change the nature of the HA for me and lessens the severity and frequency of attacks.  What breaks through I mop up mostly with Oxygen.

The article on Verapamil Bob posted above made a huge, positive difference in how I treat my CH.  My theraputic level seems to be ~400mg.

-Dennis-

Title: Re: Verapamil Changed HAs ?
Post by JoeKen on Apr 24th, 2009 at 5:02pm
Hi all again,
Thanks for the replies so far. It is now appraching bed time  -  well past CH onset time  -  and I haven't got a HA (yet) !!. This makes 2 consecutive days without a HA  -  I honestly cannot remember the last time I have had 2 consecutive days free of ANY HA.
Let's hope it continues,
JoeKen. ;D

Title: Re: Verapamil Changed HAs ?
Post by j0hnglist on Apr 29th, 2009 at 7:18pm
whats the update?
I just started Verapamil

Title: Re: Verapamil Changed HAs ?
Post by JoeKen on Apr 30th, 2009 at 3:49am
Hi jOhnglist :),
Welcome to the club !!
Update: -
I started off around 10 years ago being diagnosed with EPISODIC CH but this developed into CHRONIC about 3 years ago and has remained so ever since. Since upping the Verapamil the pattern of hits has changed, as described previously and the changes CONTINUE. The site of the pain is slowly changing and is now high on the forehead, just behind the bone, (it seems). The frequency continues to reduce and it is now around 3 or 4 days since I had a headache worthy of the name  -  I had a shadowy one around mid morning yesterday but it never developed and could be ignored. The timing has also changed -  it ALWAYS struck mid afternoon and at worst every day, at best 2 days out of every 3.
Having said all that, when I was episodic the episodes were seasonal, starting around October and finishing around March  -  I am beginning to wonder if I am reverting to episodic again, but the current pattern of reduction is in no way like the previously experienced patterns of reduction.
In short, the improvement continues but the journey is not yet over. ;D
Sorry for all the detail but I am trying to give you the full picture. Stick with the Verapamil, in my case it initially appeared to have no effect, such that, after a few weeks  I asked my GP to increase the dose, which he refused to do, then the changes began.
Good Luck  -  I hope you experience similar relief.
JoeKen. :)

Title: Re: Verapamil Changed HAs ?
Post by j0hnglist on Apr 30th, 2009 at 5:12pm
no, thank you for the detail.
I am concerned on the quality of my neuro as he told me to get off Verapamil immediately. I refuse cause I think the severity of my attacks has decreased already.

Title: Re: Verapamil Changed HAs ?
Post by JoeKen on Apr 30th, 2009 at 5:48pm
Hi jOhnglist,
I am no medic but I would counsel you against going against your neuro's advice  -  he may be aware of other aspects of your health care that I (and possibly you) are not aware of. For instance Verapamil is also prescribed for, and can have unintended side effects of, lowering the blood pressure.
I do not know where you are located but here in the UK we are allowed to seek a second opinion if we have any problems with any medic or any care or advice they provide. I would advise you to seek a second opinion, preferably from a Neuro who specialises in CH, Migraine etc. BEFORE ignoring his advice.
JoeKen. :)

Title: Re: Verapamil Changed HAs ?
Post by j0hnglist on Apr 30th, 2009 at 6:08pm
good point. however, he has not done any tests on me yet. he has no blood work or anything yet. I just came in and right away told him I am on Verapanil. He said no that I should get off of it. Weird huh?

Title: Re: Verapamil Changed HAs ?
Post by JoeKen on Apr 30th, 2009 at 6:19pm
VERY WEIRD !!!!, and how much is he paid for this insight into your condition?
Get a second opinion URGENTLY  -  he doesn't sound like a specialist in CH or any other head pains.
JoeKen.

Title: Re: Verapamil Changed HAs ?
Post by DennisM1045 on May 1st, 2009 at 7:23am
I'm with JoeKen on this one.  Find another Neuro ASAP.

-Dennis-

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