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Cluster Headache Help and Support >> Medications, Treatments, Therapies >> Medications between clusters http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1232503736 Message started by aj on Jan 20th, 2009 at 9:08pm |
Title: Medications between clusters Post by aj on Jan 20th, 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? |
Title: Re: Medications between clusters Post by Jonny on Jan 20th, 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. ;) |
Title: Re: Medications between clusters Post by Bob_Johnson on Jan 21st, 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. |
Title: Re: Medications between clusters Post by sandie99 on Jan 21st, 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 |
Title: Re: Medications between clusters Post by Ellick on Jan 21st, 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. |
Title: Re: Medications between clusters Post by DennisM1045 on Jan 21st, 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:
I hope your cycle is short and your remission lasts forever. -Dennis- |
Title: Re: Medications between clusters Post by Ellick on Jan 21st, 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 |
Title: Re: Medications between clusters Post by vince on Jan 21st, 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 |
Title: Re: Medications between clusters Post by aj on Jan 21st, 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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