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New CH.com Forum › Cluster Headache Help and Support › Medications, Treatments, Therapies › Medications between clusters

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Medications between clusters (Read 1414 times)

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Medications between clusters
Jan 20^th, 2009 at 9:08pm

I first started taking 120mg CR Verapamil during my last cluster before the one I'm in now, which was an unprecidented 3 years ago. (For 13 years, I had been getting a four-week cluster every 18 to 24 months.) I kept on the Verapamil even after the last cluster ended.

I can't find much info on doing this for an episodic sufferer like myself. After my cluster is over, does the Verapamil help at all? Could that be why I went so much longer this time? Has anyone heard of staying on it out-of-cycle, or do any of you do so?

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Jonny Ex Member	Re: Medications between clusters Reply #1 - Jan 20^th, 2009 at 9:17pm I took 480 Verap and 600 Lith everyday for 14 years, I was chronic. If you can get off the shit, do it! Theres no need to be on meds if you dont have to be on them.
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Bob Johnson CH.com Alumnus Offline "Only the educated are free." -Epictetus Posts: 5965 Kennett Square, PA (USA) Gender:	Re: Medications between clusters Reply #2 - Jan 21^st, 2009 at 9:50am I think this is still un unsettled question. Some docs, who had patients with frequent cycles, have kept folks on Verap 100% of the time. If I were on frequent cycles (every 2-3 months) I can see the advantage of full time use, considering the time it takes to become effect from first dosing.
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sandie99

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Re: Medications between clusters
Reply #3 - Jan 21^st, 2009 at 10:00am

When my ch went into remission, I waited for a month to be sure and the begun to slowly taper the verap away. In fact, I did the taper probably more slower than the most, but I wanted to be sure...

Still, I wanted to get off verap quickly and certainly didn't consider staying on it when I was PF.

Lots of PF days your way,
Sanna

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Ellick

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Re: Medications between clusters
Reply #4 - Jan 21^st, 2009 at 12:15pm

I always come off verapamil slowly. I am episodic usually yearly but 6 months since the last one.

I forget all about clusters when I am in remission and don't think about prevention much, although I can have long periods of shadows which sometimes have me on tenderhooks. I guess I am in denial when the episodes stop.

I think though the earlier you start treatment at the beginning signs the sooner you get control. Only wish I could get the hang of it myself.

ET.

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DennisM1045

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Re: Medications between clusters
Reply #5 - Jan 21^st, 2009 at 12:36pm

I don't think any of us "get the hang of it". We're just in more or less control of the situation over time. Everytime I think I have this figured out, the beast changes the rules.

Don't overthink PF time. Just enjoy it. The beast will or won't return. Spending too much time dwelling on it will just drive you nuts.

I begin to taper down after two weeks PF. Sometimes this is too soon. I find out pretty quickly.

Like Jonny said Quote:

If you can get off the shit, do it!

Theres no need to be on meds if you dont have to be on them.

I hope your cycle is short and your remission lasts forever.

-Dennis-

Where there is life, there is hope.
Where there is Oxygen, you must use proper caution.
So be safe, don't smoke while using O2. Kill the pain and not yourself.

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Ellick

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Re: Medications between clusters
Reply #6 - Jan 21^st, 2009 at 12:47pm

Thanks Dennis. I know you are right.

Despite what it might look like, I am an optimist. I guess i waver between denial, enjoying the pf time and when in cycle I want control.

I think what I was alluding to is responding to early signs. Although I think its really difficult to be certain and I guess I just don't want to face the fact when it is on its way back.

Wish you forever pain free days too.

ET

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vince CH.com Newbie Offline I Love CH.com! Posts: 7 Hull, UK Gender:	Re: Medications between clusters Reply #7 - Jan 21^st, 2009 at 2:58pm Hi all, My cycle seem to be 8-12months and I am on 360mg Verap, always. Neuro is thinking of increasing as cycles still come. Is it best to be on long-term or at cycle start? Vince
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CH.com Junior

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Re: Medications between clusters
Reply #8 - Jan 21^st, 2009 at 11:20pm

Thanks all for the feedback. Like Ellick said, I think a lot of my problem right now is more the "it's not raining now" thing where you just wipe out all the CH stuff you know while you're in remission, then find yourself crash-coursing again after your time is up. It sounds like nothing you do in the PF times is going to help delay the next cluster.

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