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Re: Tapering down Verapamil - hope i'm ready (Read 1446 times)
neuropath
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Re: Tapering down Verapamil - hope i'm ready
Jan 11th, 2014 at 3:24am
 
why were you instructed to taper off at all if you are not convinced your cycle is completely off and for how long have you been taking it. Do you have any heart conditions to go with your CH at all?
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jish
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Re: Tapering down Verapamil - hope i'm ready
Reply #1 - Jan 14th, 2014 at 11:13am
 
Because my doctor doesn't know what he's talking about. He seems to just read it off a computer, that's why i ask questions here. With the NHS you have to wait months to see Neurologist -the Bupa neurologist i did see cost me £200 No i don't have any heart conditions.
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jish
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Re: Tapering down Verapamil - hope i'm ready
Reply #2 - Jan 14th, 2014 at 11:15am
 
Been taking Verapamil since early november
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Bob Johnson
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Re: Tapering down Verapamil - hope i'm ready
Reply #3 - Jan 14th, 2014 at 1:52pm
 
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You have a first rate support group.

I understand that you have the right to by-pass our local doctor and move to a headache clinic when you have Cluster. Confirm with the support group.

Apart from lesser clinics, London is home to a major research institution on headache.

We have consistently heard about poor headache training from local doctors and, therefore, inadequate treatment. Hence, make the move to a specialty clinic.

There is no compelling reason for stopping Verap. if you are still experiencing some residual discomfort.
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« Last Edit: Jan 14th, 2014 at 1:56pm by Bob Johnson »  

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blacklab
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Re: Tapering down Verapamil - hope i'm ready
Reply #4 - Jan 14th, 2014 at 8:06pm
 
hi jish,
            only from my experience
I was on 280 verapamil and thought id try to get off it, which was about last September, every time I tried, after a week or so of slowly reducing, with no signs of the cluster being around, I started getting shadows.  really annoying !
so at the minute, being relatively p/f only the occasional night shadow, im on 180 verapamil and im going to keep on it at this level. its only a low dose and January is my danger time.  are you taking the vit d regime ?   I believe that these two combined are whats keeping me in this current p/f state.  verapamil takes a couple of weeks to get into your system should you go back into cycle.
if I remain p/f by end febuary, i'll reduce to 90 mg verapamil once a day and the vit d3 regime then see how that goes for a month or two. my reasoning is that if it ramps up suddenly I can play with the d3 levels and still have a little verapamil in the system.  this is only my way of doing things, still new at it, but I definitely know that ive got cluster headaches and without being on anything, would be playing with fire, this affliction doesn't go away, so im hedging my bets carefully and trying to at least be prepared until I can hopefully predict or no exactly what works and best preventative practice. hopefully to be stand alone on the regime eventually.
again, I stress this is only my action plan, everyones different,   haven't had much joy in trying to fully ween of verapamil.......
best of luck
colin
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jish
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Re: Tapering down Verapamil - hope i'm ready
Reply #5 - Jan 15th, 2014 at 7:18am
 
Blacklab -

I ordered the necessary supplements for the advance D3 regime last week - just waiting for them to arrive now. I'm planning to start the regiment, build up the levels in my system over a couple of weeks and then try a Verapamil taper again if i begin to feel relief. I imagine i'll be able to tell if i'm not getting my daily evening shadows, blocked nose, ear pressure usually around 2pm, 6-9pm and with an occasional repeat at 12-1am.

Bob - thanks for the reply, i'll look into that.
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« Last Edit: Jan 15th, 2014 at 7:21am by jish »  
 
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