New found success with Verapamil - please read

[AndiD]

Hi guys

 

Just wanted to drop in with a little update. Having had the longest and toughest cluster cycle of my life which ended up in Hospital, I bit the bullet, got my credit card out and went to see a private Neuro specialist for a couple of sessions.

 

For any UK people, the Consultant is prof. Amir Al Din at the Spires Hospital in Leeds - £200 consultation and £150 for follow ups - I did my research and he's considered an expert in cluster headaches.

 

Quick background - I'm 35yrs old, clusters since 21.. Usually 1 to 2 4week cycles per year - coped with Oxygen and Sumatriptan.

 

The doc told me that in almost ALL cases of CH, there is a dose of Verapamil that will "switch them off". I was dubious, as I've tried Verapamil a number of times before, but it never seems to have much effect. In his expert opinion, most people don't take anywhere near a high enough dose for a long enough time - GPs are only able to subscribe up to a certain amount and usually unwilling to prescribe the amounts needed. He was also very much against using Sumatriptan injections.. I'd become reliant on them and they almost certainly extend cycles.

 

This time he put me on the course of high dose steroids while the Verapamil took it's 2 weeks to start working. (A standard procedure I'm sure most CH people have read about), but it's getting the Verapamil dose right that's key. I had to have a couple of ECGs at the local doctors surgery in the first 2 weeks while the dose was built up, and of course there's a few side effects (slight dizziness sometimes when getting up, easily out of breath, but that's about it).

 

I'm now 2 weeks after finishing the steroids and on 560mg of Verapamil taken in 4 sets through the day (My consultant regularly prescribes up to 960mg for other people). It has been life changing for me - and I know it's not the cycle that's finished as I can still feel the occasional CH, but it just can't break through and never gets passed a level 1. Once I stop feeling them and know the cycle has ended I'll gradually decrease the dose until I'm drug and CH free.. and enjoy life until the next time.

 

Anyway - thought it would be worth dropping in, just to say if you HAVE tried verapamil before but not felt any benefit, PLEASE try again as there does seem to be an eventual dose that will work for most people.

 

Pain free wishes to all

 

A

[CHfather]

Thanks for posting this, AndiD -- and it's great that you've got something that works for you!!!

[jon019]

Andi...that is a most excellent post!...reflects EXACTLY what the neuro I found after years of searching in the wilderness thought....

 

...I worry that too many folks give up on verapamil without upping dosage (under Doc supervision of course). My sweet spot in cycle was

960+......and 480 out of cycle...

 

best

 

Jon

[urs Brasil]

Same here, 1gr Verapamil/day did the trick, but with time I became affraid taking ...

[spiny]

Some people cannot take the high dosage due to normal low blood pressure. Verap lowers your BP.

 

Personally, 240mg/day lowered my resting rate to 80/60.

 

For those who can take the higher doses, it can be a very effective drug.

[AndiD]

In that case spiny I consider myself very lucky to be relatively young and with normal blood pressure! Thanks for pointing that out.

I still think MM are the way forward for those that can't do the high dose verapamil but for a cheap and not-too-awful drug I think it can be a lifesaver.. If you persevere and push that dose right up.

[chroniccluster252]

Hi, I've been using Verpamil 480 mg with no Cluster Headaches. I recently reduced it 360 mg with about 2 headaches a week. I have bad side effect of constipation when I take Verapamil (480 or 360 mg). I wanted to find out if any of you guys in the group has the same issue and what you guys do to overcome the side effect of Verapamil. Thanks in Advance..

[Johnd1983]

Hi, great post and similar sort of story here - 33 year old male, suffered with CH for ten years or so but it took me a couple of years to realise / be diagnosed due to just not having heard anything about CH previously.  

 

I was prescribed Rizatriptan wafers for a while, which did nothing and then I came of all prescribed medication and tried psilocybin mushrooms and truffles, which also didn't work.

 

The last two years my cycles have been 'short and sweet', if you can say that, and the pain much less severe but this year the attacks returned in full force so I went to the doctors on Tuesday last week and was prescribed Verapamil (40mg) and advised to take 1 tablet twice a day and return in two weeks.  By day three, even at only 80mg per day, I had a day free from any CH attacks.  It's now Sunday and I haven't had one single headache...

 

Maybe it's too early to tell what is what in my personal case but fingers crossed, this really does work!

PS: chroniccluster252 - I read that constipation was a side effect in the leaflet but personally haven't experienced that. Sorry but hope you get sorted.

[BBillow]

I used Verapamil to successfully end the worst cluster I have ever had, 4 months with as many as 7 in one day. we started at 180 mg a day and increased dosage in 60 mg increments until they stopped around 480 mg. but the side effects, mainly lethargic and a heart tic made me stop taking it after 2 months. THE GREAT NEWS! My headaches, while still occurring are much less severe, much shorter and much more infrequent. if they were 10's before. they are 1's and 2's now, duration down from 30-90 minutes to less than 10 minutes. Frequency from 3 to 7 a day down to less than once a day, usually nocturnal, about an hour after i go to sleep. It took about a month for all the side effects of the drug to wear off and now I feel like my old self, my energy has returned, I have returned to work and my life is great. I take absolutely no medication now and just deal with these little baby clusters now as a minor annoyance instead of a life altering disability