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

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#1 Tue, 25/03/2014 - 18:12
Scott
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BBC Radio 4: Inside Health Cluster Headaches 25/03/2014 9pm

BBC Radio 4: Inside Health Cluster Headaches 

25/03/2014 at 9pm Professor Goadsby is speaking. Well worth a listen, it repeats 26/03//2014 at 3:30pm and will be available on IPlayer shortly there after

 

Link to Programme

 

http://www.bbc.co.uk/programmes/b03ynt72

 

 

Tue, 25/03/2014 - 18:38
duetto
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thanks, await the ink

Tue, 25/03/2014 - 23:39
Scott
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IPLAYER link Added to my original post (Sorry for the delay but I was working in my local pub.

 

 

Wed, 26/03/2014 - 07:04 (Reply to #3)
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They heavily edited it.

 
 
 
Chairman OUCH UK

Mon, 31/03/2014 - 09:37
duetto
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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.

Sun, 06/04/2014 - 14:17
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Hello

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

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

 

 

Sue
 
 

Sun, 06/04/2014 - 16:54
duetto
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i have an ecg every 6 months and more frequent if dose changes.

Sun, 06/04/2014 - 17:48
SueB
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Really! duetto

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

 

 

Sue
 
 

Mon, 07/04/2014 - 09:08
duetto
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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 

Mon, 07/04/2014 - 08:53
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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

 
 
 
Chairman OUCH UK

Mon, 07/04/2014 - 09:50 (Reply to #10)
SueB
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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

Sue
 
 

Mon, 07/04/2014 - 10:35
Boomshakalacka
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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! Smile

 

Chris

Mon, 07/04/2014 - 13:12
Mike
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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

 
 
 
Chairman OUCH UK

Mon, 07/04/2014 - 16:43 (Reply to #13)
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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

 

Sue
 
 

Mon, 07/04/2014 - 16:24
duetto
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you need to edit your last post and delete the phone number and send it via "pm" for security reasons.

Mon, 07/04/2014 - 16:44 (Reply to #15)
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THANK YOU sooo much Duetto - can you tell I am getting over surgery - head not with it yet !

You are so right.

Sue
 
 

Fri, 11/04/2014 - 16:43
Boomshakalacka
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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

Fri, 11/04/2014 - 16:51
duetto
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sent a pm

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