Should I take the topiramate with the verapamil?  My pain doc and I decided to try topiramate but we never discussed whether or not stopping the verapamil or not.  Also, I've never had an EKG while on it, and have gotten into the 480mg/day territory.

Last night I started the topiramate and today I'm taking half my usual verapamil dose (80mg tid).  Today has been rough, and I've been in cluster since mid December with only a brief reprieve in January.

My clusters are typically various degrees of shadows, from a 2 to a 6 on the Kips.  I don't have the "on-off" type syndrome, and I'm rarely without pain at any time during my cluster, except the fifteen minutes immediately after waking up.

Nervely, best to give your doc a call on this one and discuss it with him, also at the same time book in for a EKG, it's better to be safe than sorry when taking Verapamil.

Hoppy

I just don't think he really knows.  I'm one of his zebra patients.  That's one of the thorns of this rose growing in my head - there aren't local docs who understand.  I'm more likely to trust the two or three people who have tried with and without verapamil than the doc who might have read something, but more likely needs to go google it...

Nervely wrote, I'm more likely to trust the two or three people who have tried with and without verapamil than the doc who might have read something, but more likely needs to go google it...

That's the thing! The Majority of doctors and neuros have limited knowledge  when it comes to treating CH's! Do you have a Headache Specialist close by where you live?

Hoppy

Hiya Nervely...I hada neuro who prescribed both at the same time...she said: "I treat ch aggressively"...
and I was nearly in tears to FINALLY hear someone say that! The topo didna work...made me daft...told her...she apologized..."well... maybe a little too aggressive". We continued with verapamil at higher and higher doses until it worked....as has been said....get the ECG's. I was up to 900+ mg/dy...pretty effective.....don't forget the O2...and D3 regimen works for many........

Best

Jon

It will help us to direct you to good sources of assistance if you will tell us where you live (city & state, if U.S. or country). At the Home page: Help button-->Edit & Profile --> Location. (This will add your location, just below your name, every time you post a message.
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You note you are seeing a, "pain doc"--a specialist in pain or a secialist in treating headache? Two different sould!

In our experience, pain specalists are not helpful with Cluster. If you have the option, find a headache doc.

Both meds you are are serve the same purpose--stop the attack. The problem, if you get some relief you don't know which of them is effective.

The majority of comments about Top are critical because of the mental side effects and a good % of folks stop using it.

Verap has a long history of success around here and, while at very high doses, you have to watch for side effects re.hear. But most  use moderate dosing. Still it's the clear winner. It's range of effectiveness is quite broad and it will take some time to find the effective dose for you.

With any doc you see, print the article, below, and give to the doc.

---

topamax.. i started with topiramate.. and in 5-6 days.. i was unable to concentrate.. i wasn´t enable to find the words i was looking for ( i work usually giving tecnic meetics to a loot of people, i speak in public ).
in 7-8 days .. i was unable to talk with my wife.. in a direct way.. i always spoke in circles.. i talked with my headache specialist.. and i left TOPAMAX(Editet)l.. i have to run a lot , make exercise a lot, to get out TOPAMAX(Edited) of my body.. was so catastrofic for me.. that i didnt remember.. if this stop my CH in those week.
Verapamil.. i started to take verapamil in 2007-2008.. in 4-5 days i didn´t noticed too much.. in the follow weeks.. i noticed that my crisis takes to loong to appear ( every 2-3 days) and less pain in crisis ( i went from 9-10 pain to 6-10 pain, in a great number of crisis )
I eat 3x80 mg at day.. i know .. its low.. but my headache specialist says.. its better.. for my heart.. etc etc..
Booth two .. never try.. but pleasse if u start with topiramate.. check anything in your life for this symptons.. some people reacts fine.. some people reacts likes me.

The toxicity of Verap is far less a risk than you seem to think. Print the print the article, below and give to you doctor.

It's very comon for us to use Verapamil in doses ranging from 400 to 700mg, and higher, witout any serious effects. At highe doses, the egular use of an EKG will give warning signs which your doctor will understand.

My general point is: Verap has been widely, effectively  used by our members. It has a good record for effeciveness and safetyd and none of the mental consustion you reported.

Print  the following and give you your doctor.
==
J Headache Pain. 2011 Apr;12(2):173-6. Epub 2011 Jan 22.
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.
SourceDépartement 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]

If could share my experiences with Verapamil. I have been on it for 6 weeks up until last Monday. During the 6 weeks (taking 120 Mg per day) I have had an almost constant ordinary headache, aching limbs and little energy.  I am off the verapamil for 4 days now and feel so much better each day. (My CHs generally arrive early on weekend mornings)

Following consultation with my GP & neurologist I have started Batch's D3 regime this morning. Fingers crossed

Stay Positive

Con

[smiley=thumbup.gif] [smiley=thumbup.gif] [smiley=thumbup.gif]

Peter.

Con,

I'm with Peter.  You've made a wise decision...  You won't regret it...

Please keep us posted.

V/R, Batch

I took Topamax for years and years without side effects (I took the whole dose at night before bed - no dopey in the daytime).

But the D3 has done a terrific job .. I've been PF from CH for over two years and after almost 20 years of chronic CH -- I totally recommend trying it. Batch can give you details..  :-*

Topamax has a bad reputation with many people here and yet for others it has worked pretty well with minimal side effects. I tried it for my migraines with it making my brain slow to a total crawl, although it did help with my migraines, but the side effects were too much.

However just about everything can have side effects with different people experiencing different ones or none at all. With any medication it is very much about balancing the beneficial results with the side effects.