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Verapamil - New User

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#1 Wed, 17/04/2024 - 16:38
Littlelola
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Last seen: 1 week 2 days ago
Joined: 29/03/2023 - 00:01

Verapamil - New User

Hi all, I am a Chronic CH sufferer for 40 years and am just about at my wits end being unable to live my life or function most of the time, I am just about to start on Verapamil for the first time but am apprehensive of the side effects and long term problems this medication can cause, I know everyone is different, but any shared experiences of this medication would be welcome.  Sending lots of love to all CH sufferers, I know a lot of us suffer this hideous, debilitating illness in silence xx

Thu, 18/04/2024 - 18:55
karl
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Last seen: 1 month 1 week ago
Joined: 01/04/2018 - 11:26

For me it was a god send, although it did not stop them, it did seem to reduce the attacks (I am chronic) and I think it did reduce the intensity, the reason I beleive this is they have stopped the verapamil now, due to an issue with my ticker, and now all I have as a preventative is Melatonine that seems to do nothing, and the headache nurse at Kings now just tells me to go to my GP or if its really bad A&E, well cheers, GP told me to go to Kings and A&E!

So for me Verapamil was the one thing that gave me some help, so I hope it works well for you.

You do need an ECG each time the dose is changed and every 6 months, if like me the GP surgery tells you you dont need it, stamp your feet, it is important to get it done.

Thu, 18/04/2024 - 22:42
mmeredith8498
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Last seen: 1 month 1 week ago
Joined: 18/04/2024 - 21:46

I am an episodic sufferer and I have been advised to only take Verapamil when I am in a cluster. That said, I have never experianced any side effects at all. I wasn't taking the right does when I first used it but as soon as I did i noticed a reduction in severity and frequency. I am in a cluster right now and I have had a Occipital Nerve Block. Early indications for me feel like this could be a game changer. I had it about 6 weeks ago and I had vertually no symptoms. It wore off early so my symptoms came back, but I have had another one a couple of days ago and it seems to be working again. Have you tried that?

Mon, 29/04/2024 - 14:14
Littlelola
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Last seen: 1 week 2 days ago
Joined: 29/03/2023 - 00:01

Hi, thank you for your replies, much appreciated.  Karl - yes, I have had an ECG and my GP is very keen for me to keep up to date with these which is good.  The ECG was fine, so I am starting the Verapamil now.  

mmeredith - My neurologist has me on the waiting list for an ONB (been waiting since Oct 23 now!)  so hoping this may also help.  Good to hear it helps you.  

Anybody else who can share their experiences with either the ONB or Verapamil much appreciated!

Much love to all....

Wed, 08/05/2024 - 21:21 (Reply to #4)
DavidRB
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Last seen: 2 weeks 6 days ago
Joined: 01/12/2019 - 20:14

Good evening Littlelola my experience with ONB versus Verapamil is very positive. I had been on verapamil for 3 or 4 years with the dose increasing every 6 months. I found I had to take Verapamil constantly, tapering the dose up and down as I have chronic symptoms. Both my GP and I were concerned this was not sustainable so I now have ONB every 3 to 4 months. No verapamil any more. Whilst I am not totally clear of CH I am no longer on a constant prescription. I also use the gammacore device to squash any attack I do get but these are now very mild. My experience is keep trying new treatments until you find one that works for you. It takes time and also very few patients respond the same to treatment. good luck.

Sun, 19/05/2024 - 11:04
Littlelola
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Last seen: 1 week 2 days ago
Joined: 29/03/2023 - 00:01

Thank you DavidRB, I am keen to try Gammacore, but am struggling as to where to get it, do you pay privately for it or on the NHS?  My neurologist is referring me to the headache clinic in London, hoping they can shed light on it....

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