BBC Radio 4: Inside Health Cluster Headaches 25/03/2014 9pm

thanks, await the ink

IPLAYER link Added to my original post (Sorry for the delay but I was working in my local pub.

They heavily edited it.

Pity it was cut short, would have liked the full half hour on clusters, covering the chronic people as well, anyone hearing the show will think we just suffer for a few weeks a year. I have never been episodic.

Always enjoy listening to the prof.

Hello

Being a bit slow catching up here - been missing from OUCH for so long, but back again now - thank you :)

I have just listened to the clip above about CH recently broadcast on BBC Radio.

Just bit worried - I have been taking Verapamil for about 8 years, non stop down to 2 x 120mg tablets per night.  My CH has been so much calmer - only wake up odd nights (early hours) take a sumatriptan and it usually does the trick.

There seemed to be a policy of not taking Verapamil when out of phase mentioned in the broadcast..

How long can one take Verapamil without being checked out or reviewed by the GP.  I have moved around the UK and usually the GP has left me to my own devices and said - up to you...

Thanks so much

i have an ecg every 6 months and more frequent if dose changes.

Really! duetto

Feb 2008 when I started taking Verapamil  hmmmm......

sueB

some reading on ECG and clusters

http://www.medscape.org/viewarticle/561540

not sure what happened to my link it was not a log on / password req'dearlier 

Sue said:

I have been taking Verapamil for about 8 years, non stop down to 2 x 120mg tablets per night.

Hi Sue,

If your're out of cycle, just stop the Verpapamil. There is no reason to keep on them. If you're still in cycle 240mg per day wont help.

Mike

Thanks Mike and Duetto

I have an appointment at Doctors today and will raise this with him and feed back to you what I am doing in case you have any further tips, advice etc about coming off this drug.  

The Verapamil has been like a comfort blanket to me.   I was worried that if I let it go - the CH will become chronic again.   Currently it only troubles in the night (nose, eye and dull pain rather than the old excruciating pain) and is sorted out with a sumitriptan and plenty of 'rocking' at its outset.  

Just returned after 3 weeks travelling across to NZ and back which did throw my headaches in to a panic, and then came home to clocks changing,  Now it is back settled into the normal only at night routine (and I would  2 on the scale).

Best wishes

Sue

Hello Folks.

I am a new member and a recently diagnosed sufferer (Less than 4 weeks!), and I found the program very useful as a newbie. I just hope that my Neurologist appt next week will help out as I am struggling with these attacks.

Great to be here! :)

Chris

Sue,

Just for your information, the Verapamil takes around to two weeks to take effect. In other words the first level is 240mgs a day for two weeks before becoming effective, the next level would be 360mgs a day, another two weeks and so on until you reach an effective dose. On each increase you must have an ECG. Takes just three days to get be back to pre-verapamil body and brain levels. Also you shouldnt be using Verapamil SR (Standard release) or MR (Modified Release) as they dont usually work. Should be the standard type.

Mike

Chairman OUCH UK

Hi Mike

Thanks for all the info.  

time just seems to have passed by over the years and no one has ever reviewed my medication with me since seeing my consultant Mr Kellett in 2008.

My medications are:

The Verapamil is SR  240mg per day at moment but in the past was up to 6 then 4 then as now 2 per day.

and...   Imigran 50 (Sumatriptan sucinate) tablet form.   I can have injections and have used in the past.  

What is 'sumtriptan subcutaneous' is this different?

My phone number is ........ (will PM) would really appreciate a call if you dont mind.   Off to docs at 15:00

Thanks so much

Sue

you need to edit your last post and delete the phone number and send it via "pm" for security reasons.

THANK YOU sooo much Duetto - can you tell I am getting over surgery - head not with it yet !

You are so right.

If anybody wants a copy, or does not have the ability to listen, I have a transcript of the CH section in a Word document. Just ask and I can send it to whoever would like it!

I have highlighted things to wave at my Neuro on wednesday!

Cheers

Chris

sent a pm