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Message started by lupie on Apr 25th, 2013 at 11:42am

Title: Verapamil dosage
Post by lupie on Apr 25th, 2013 at 11:42am
I have been to see a neurologist who specialises in cluster headaches.  He has told me to stop all the oxygen, sumatriptan and injections as the new med verapamil would stop the headaches.   I am on 80 mg three times a day, with prednisalone for 4 days if I need it.  Well in the last month since stopping the meds and O2 I have had 2 bouts.  The last one started on the 16 th April.  Today I ended up at A&E. 
I don't think the new med is working, but he just says stick with it.  How long before they work?  I was told off by the staff nurse for having a sip of red bull so threw it away, but then the doc on duty said to drink the other one as it sometimes works.  IT DID! But how many is safe to take to stop the headaches? The others on the forums are on a much higher dose of verapamil, is mine too low and is that possible why it isn't working a a prophylaxis?
I do not know how to cope with this day in and day out,  please help, what do I do? :'(

Title: Re: Verapamil dosage
Post by Mike NZ on Apr 25th, 2013 at 3:55pm
Treating CH needs both a preventive and abortives. You can not just rely on just a single preventive as none of them are perfect so you are almost certain to get some CHs that break through.

For verapamil, 240mg a day is a pretty low dose. Most people need 360-480mg a day with some going to over 1000mg a day. It takes about 10 days for it to become effective and if you change doses, another 10 days for the new dose to take effect. So even if the 240mg dose is effective for you the 4 day course of prednisione would leave a 6 day gap.

Verapamil can be a fairly good preventive. For me it blocked perhaps 80-90% of my CHs from happening, but I still had to deal with some CHs. That is why I had both oxygen and sumitriptan injections (imitrex) to kill them off otherwise I'd have to go through the 45-90 minute torture of an untreated CH, which I did far too many times before I got the CH diagnosis.

So you should keep your oxygen and sumitriptan injections for use with breakthrough CHs, although where possible I'd use the oxygen.

It is possible that there are medical reasons why he told you to skip the non-oxygen abortives. Equally over using the injections can result in rebounds and other issues.

When using verapamil you need to limit how many Red Bull or similar energy drinks you use as there is an interaction between the two. Whilst there are no definite numbers when this was discussed a while ago many limit themselves to 1 or 2 small cans a day.

Whilst your neurologist claims to specialise in CH, I am confused by his advice.

Since you're from the UK, have you been in contact with your local group - START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE ? They too have forums and a help phone line that together can help you through the NHS and getting good CH treatment.

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