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Verapamil (Read 2251 times)
Akat
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Verapamil
Nov 12th, 2012 at 11:30pm
 
Hi, My name is Amanda, I am 23 and have suffered from episodic cluster headaches since I was 18. The cycles tend to occur sometime between November-January and last between 2-4 weeks with multiple headaches a day for the duration of the cycle. So far I have not entered a new cycle yet this fall, but I am nervously dreading it since it hasn't failed to arrive in the last 5 years.
It took quite a few Dr office visits before I was referred to a neurologist (which my family doc flat out told me was a waste of my time and theirs since my case wasn't "severe enough" to warrant their attention). Today I met with a neurologist who actually listened to and understood what I had to say about what I go through. This is truly a first when it comes to these headaches for me. He prescribed Verapamil to start with and if this doesn't prevent the headaches, he came up with a plan B (Sumatriptan nasal spray) and C (Prednisone) to help control the pain. We also discussed the possibility of me using oxygen if these first three options prove to be ineffective.

My question is does anyone have experience with these medications, more specifically Verapamil? Has it actually helped prevent/lessen the pain? What sort of side effects, if any, did you suffer?

I appreciate your responses, this is my first time trying to connect with other people who understand and are dealing with cluster headaches.
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ClusterHK
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Re: Verapamil
Reply #1 - Nov 13th, 2012 at 1:34am
 
Hello Amanda. I am an episodic sufferer as well and I find Verapamil greatly reduces the severity and frequency of attacks - from 2-3 Kip 9/10 attacks a day to one Kip 5/6 attack every 2 days. It is certainly worth trying as a preventative.

For me, Verapamil is like an on/off switch. Below 480 mg a day, it does nothing for me, but once I get the correct dosage, it works like a charm.

Even with a good preventative, me and most other members here will state that you'll need a good abortive to back it up. As such, Oxygen is strongly, strongly recommended.

Sumatriptan can be very effective (injectable #1, nasal spray distant 2nd, tablet distant distant 3rd) but it is a rather powerful drug. Like any drug, long term use can do damage to your system. Used correctly, Oxygen is fast and effective at aborting an attack and since it isn't a drug, it's almost 100% safe. (I say almost 100% as pretty much anything can be misused in an unsafe way.)
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Akat
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Re: Verapamil
Reply #2 - Nov 13th, 2012 at 8:06am
 
Thank you, I appreciate your input. I truly don't want to have to rely on 2-3 types of medications so I think I will discuss oxygen with my Dr. if/when the next cycle starts.
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Bob Johnson
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Re: Verapamil
Reply #3 - Nov 13th, 2012 at 9:27am
 
You come here having seen a doc who appears to know what he's doing. You don't know about the meds he is suggesting. Then you tell us you won't use them even before you get any of the information you asked for.

Can you see any contradiction here?
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Guiseppi
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Re: Verapamil
Reply #4 - Nov 13th, 2012 at 9:37am
 
Welcome to the board, isn't it awesome the first time you meet with a doc who actually seems to care??? Smiley Sounds like you got a winner here. As to his suggestions:

Verapamil is still the most commonly used prevent med for Cluster Headaches. We tend to take it at higher doses then those that use it for blood pressure controil, with some going as high as 960 mg a day. It will not eliminate your attacks, but it should reduce both the frequency and the intensity of your attacks.

Prednisone. We call this a transitional drug. For many, prednisone will provide 100% relief from attacks. The problem is if you take prednisone long term it will really rip up your internal organs and joints. So for CH'ers, we use it as a transitional med, genrallyy a 10-14 day taper, to give us a break while we wait for our prevent med to become effective.

Sumatriptan nasal spray has a pretty good track record as an abortive. It needs to be taken at the first sign of an attack, the longer you wait to take it the less effective it's likely to be at aborting the attack.

OXYGEN!!!! Please read this link on oxygen. It should be your first line abortive. Cheap, no side effects, fast, I abort in about 6-8 minutes, but it must be used correctly or its worthless.

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AppleNutClusters
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Re: Verapamil
Reply #5 - Nov 13th, 2012 at 10:46am
 
Well, verapamil caused my legs/feet to swell so badly that I couldn't get my shoes on. Also, I experienced heart palpitations. That being said, it has been the most effective treatment for me so far (except for Topamax, which I could not tolerate at all.)
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Akat
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Re: Verapamil
Reply #6 - Nov 13th, 2012 at 11:35am
 
Thank you all for the information, I very much appreciate it.

I did not say I wasn't going to take the medication, I said I did not want to have to rely on multiple meds that could cause harmful side effect vs. oxygen which it seems many people have had success with without other harmful side effects to the body...
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ClusterHK
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Re: Verapamil
Reply #7 - Nov 13th, 2012 at 1:10pm
 
I hope I didn't scare you with the harmful side effects bit. Don't be afraid to take the medications at the doctor's recommended dosage. The biggest danger is probably from taking far more sumatriptan in one day than recommended - when Kip 10's strike, all reason goes out the window. But if it's only used as a backup to Oxygen, an overdose unlikely to happen.

And yes, you can't really go wrong with oxygen. Wink
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BobG
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Re: Verapamil
Reply #8 - Nov 14th, 2012 at 7:18pm
 
For me, Verapamil works very well. I've been on it for about 6 months now. The side affects were constipation, peeing a lot, dry mouth/throat and a dry cough for the first 2 months. Verapamil can lower blood pressure and slow the pulse rate.
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Bob Johnson
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Re: Verapamil
Reply #9 - Nov 14th, 2012 at 7:41pm
 
The standard treatment for Cluster involves 3 different meds used at different stages:
1. Prednisone is used as a first med to rapidly stop attacks. Taken for about 14-days and it usually stops attacks within a day, then tapered off to zero.
2. While starting it, you also start a med which works to reduce the frequency/severity of attacks. Verapamil is the most widely used and safe of several preventives but it takes a couple of weeks to become fully effect, hence the Prednisone for the short period.
3. An abortive used for breakthru attacks. They are rapid acting but with short useful life.

There are a variety of meds in each of these three groups which may be used, but all serve the same basic functions.

Print out the PDF file, below, both for your education and to use as tool to discussion treatment options with the doc.
===
For your overall education re. Cluster:


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]
------------------
Also explore:


Three sites which are worth your attention: medical literature, films, plus the expected information
about CH.

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register
------

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register Search under "cluster headache"
-------
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register
  Full of articles, blogs, book: written by one of the best headache docs in the Chicago area.
  Worth exploring. The latest book is in e-book edition, $10; comprehensive and worth buying for
  a careful read.
=========
As you begin to use any combination of meds you will have to adjust dosing to find what works for you and/or change to a different med, for not all work with equal effectiveness with all of us. I.E., patience is a survival skill when dealing with Cluster, second in value only to knowing as much or more than your doc. Both formal studies and our collective experience show how limited is the knowledge/skill of many docs around Cluster. Means we need to have some good, informed judgment about whether our treatment is usefu or whether it's time to find another doc.

My point being: patience plus self-confidence that you have done your homework in learning how to care for yourself.

Read, read here; learn (with some reasoned skepticism <bg>!)
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Bob Johnson
 
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wimsey1
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Re: Verapamil
Reply #10 - Nov 15th, 2012 at 1:13pm
 
Amanda, I know this is a scary time for you. I also know there is some relief in discovering what is causing so much pain. It's a contradiction for sure, but we've all been there. The beast is most certainly beastly, but it can be managed. Sometimes you do have to take a med combo but be reassured it will be at the lowest level needed to make it effective. O2 is a great abortive; it is my friend. Yours, too, if you let it. It will not eliminate the ch's but it will reduce the amount of time you are in pain. Let us know how you make out as time goes by. God bless. lance
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