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Verapamill BP or Slow or modified release

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#1 Wed, 03/09/2014 - 17:04
kelt5
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Last seen: 4 years 8 months ago
Joined: 19/03/2014 - 10:29

Verapamill BP or Slow or modified release

Many, many thanks to Val who answered my very garbled and up-tight plea for help the other day in double quick time I am now able to post again. I have also, at last, received my welcome pack which is packed with some very good information advice.

I was diagnosed with CCH in April this year by the wonderful Dr Nick Silver who prescribed Verapamill in increasing doses and  oxygen.  On reading the OUCH booklet I noticed it recommends use of  the 'BP' Verapamill and not the slow or modified release.  Dr Silver did not stipulate which in his instructions to my Gp about dosage and heart monitoring.  I have only been prescribed modified slow release and went to 720mg daily with only moderate relief (pain was slightly less intense but frequency remained the same 3 or 4 times daily).  My ECG 2 weeks ago was 'at the very highest limit' and I was experiencing shortness of breath and episodes  of sheer exhaustion so the dosage was reduced to 580mg daily.  These symptoms are still in evidence but not quite so bad.  I had another ECG today and am awaiting an appointment for a 24hr monitoring via my GP.

What I really want to know is whether I have been on the 'wrong' Verapamill and that is why I am feeling little benefit from the 'preferred' preventative treatment.

I am sorry that this sounds so 'waffly' and hope someone can decipher adequately so as to advise me.

Thank you all for 'being there'.

Jeannie

Mon, 08/09/2014 - 08:53
Mike
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Last seen: 5 years 2 weeks ago
Joined: 21/03/2012 - 12:43

Jeannie,

 

 SR and MR are not helpful in the treatment of CH. Please ask your chemist for the standard BP form of Verapamil. Whilst it is understandable that chemist dispence SR or MR Verapamil they rarely if ever work.

Mike

 
 
 
Chairman OUCH UK

Sun, 28/09/2014 - 07:58
hoops
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Last seen: 4 days 20 hours ago
Joined: 07/09/2014 - 14:27

Hello,

My name is Andy, I’m 48 and I have suffered with CCH for some 5 years now and It’s only 2 years that I decided to go private to see if the Doctors there knew more about my condition than my own GP. This was a great decision for me as he diagnosed me almost instantly and started me on steroids and verapamil, steroids as most of you will know start high dose and then reduce and then you carry on with just the Verapamil. (Not as much money as you’d think, maybe £160 for the session private)

This changed my life completely and I’m now on 720mg daily of Verapamil and I also have O2 at home. I do still get my headaches from time to time and can usually feel one lurking around my left or right eye daily but fingers crossed usually it’s just a reminder.

About 8 months ago I was informed that I could reduce my daily intake and would now be taking the Slow Release (SR) Verapamil, at first I was scared as I know that messing with my medication usually results in pain. I also thought this could be great for me, less tablets with same results; winner! I had to try and I did, almost immediately I started getting my headaches back. I stuck with it for a couple of weeks hoping my system would accept them but I just knew it wasn’t working.

I informed my Doctor and to be honest without being rude I told him I was going back on my standard Verapamil’s and would need a new prescription, I received the new prescription and I now continue my medication on my old standard Verapamil. After a few days I was back to my normal if it is normal self, pretty much pain free most of the time with my reminder lurking which I can cope with ok.

So for me Jeannie Slow Release are as much use to me as Paracetamol were before I was diagnosed, which as we know is useless in Clusters, I hope my own experience with SR helps.

Sorry if I waffled on, 2 points here; Slow Release for Jeannie and the fact that I just wish that I had known in the early days that Doctors (GP’s) do struggle to diagnose CH sometimes and people can suffer for years without being properly diagnosed. The £160 I paid privately I would have paid a hundred times. I trolled through websites for answers before I was diagnosed and I just hope that if someone who may have CH but doesn’t know reads this and like me try one private session with a specialist, life changing for me!

Thanks,

Andy.

ARH

Sat, 01/11/2014 - 16:56
kelt5
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Last seen: 4 years 8 months ago
Joined: 19/03/2014 - 10:29

Thanks for your reply Andy, now on Verapamil bp and it appears to be better but I can only take 480mgs daily due to an ecg showing my stats to be near the limit. Whatever that means.  Only 3weeks to see my consultant after they cancelled this weeks appointment. I'm still having 2-3 clusters daily with no breaks now for months. I don't tolerate trptans well so I keep thecinjections down to only one a week except for special occasions or  outings.  Ilike many of us are hoping for a miracle.....I really hope it comes soon

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