I wanted to find out the general concensus about continuing Verapamil ocne a cycle is over. I was on 240mg of Verapamil ER for a couple of years...helped to end a monster cycle and the following year it prevented it altogether (except for minor shadows). The next year the beast returned and we doubled my verapamil to 480mg/day, anbd that seemed to help ease things a bit until the cycle ended. I had about3 pain free weeks and then another cycle started on the other side.

I've read some people mentioning weaning off the Verapamil between cycles, and wondered if this is a common practice? I ask because I am afraid that long-term use of the verapamil when I'm not in a cycle will reduce it's effectiveness, and I shudder to think about going into a cycle without a preventive to help take the edge off, if nothing else.

Also, how common is it to "switch sides" between cycles? This is the first time I've experienced it...

Quote:

I ask because I am afraid that long-term use of the verapamil when I'm not in a cycle will reduce it's effectiveness

There ya go.

Mike - I am working through similar issues with my neuro now.  Have come down to 120mg/day of the ER version, and nearly all symptoms have been gone for many weeks, though I still get some gentle reminders from time to time.  Interestingly, my GP is suggesting remaining on the Verap for blood pressure reasons.  Like you I hate to overuse my front-line preventative for fear that it won't work later, but my neuro is saying not to worry about that, we just ramp the dose up when the next cycle hits.

However, I am inclined to step down completely and see what things are like w/o the Verap for awhile.  At 120mg I don't have many of the side effects, but there are one or two I would just as soon be rid of ...  ;)

This issue has largely disappeared from both this group and them medical literature I see.

Several years ago there was some medical consensus that staying on 100% of the time was useful when you had rapid cycles, with only a brief time between them.

Listen to your doc and not our imagination, please.

My neurologist gave me the option to go off verapamil when I felt comfortable because my headaches will go into remission periods of 1 year.  I went off of it once when I knew that 1-year remission period was beginning, but as soon as I felt a pain hit that felt like a possible cluster I started it back up immediately and haven't been comfortable enough to stop it again.  I too wonder about its effectiveness if taken long term, but I just can't do it yet.  I would talk to your neurologist about it, if you haven't already.

My clusters switch sides.  I get them on 1 side for 2 months out of a year and then the other side for 2 months out of the year and then go into my 1-year remission period.  There was once or twice when I would get one on my left side and then one on my right side the next time one hit through the whole 2-month cycle.  That has been a rare thing for me though, considering I've had these things for 17 years, but I have found that nothing surprises me when it comes to these things.

My clusters have switched sides, but not very many times.  I've had cluster for about 37 years, and had maybe a half dozen cycles on the right side.  Hundred or more on the left. 

I went through a lot of pain that first cycle on the right, because I just couldn't believe it was cluster, after 25 years or so on the left side only.  The pain, while really intense, was a little bit different; more burning and less pressure behind the eye.  Finally, out of desperation, I took an Imitrex injection, and it worked in 5 minutes.  That's how I knew.

I do get off of Verapamil completely between cycles, but I agree with the advice already given here to listen to one's doctor.  I've been prescribed as much as 960 mg per day.  And over the last couple of cycles, my neurologist added Lithium Carbonate as Verapamil wasn't getting it done anymore, and the side effects are a bummer at that dose. 

Pain free since mid-2009, likely due to early onset geezerhood, but both preventive meds are in the cabinet.  If I get a twinge, it's oxygen to treat, first dose of both meds to prevent, then immediate call to the neuro, in that order.

Wishing pain free days to all...

Dennis

Hey Mike,

My father has been on Verapimil for 3 years. He started with 50mg 2x a day and when he would begin to go through a cluster his neuro would boost him to 100mg 2x a day and it would end. When the CH stopped he would go back down to 50mg 2x a day and then next cluster go back up, however this year when he started his cluster, the verapimil did nothing. So my suggestion to you would be to not maintain on it, because I'm thinking in my father's case that because he stayed on it, the effects of it weakened. Hope this helps! And always wishing everyone a cluster free day everyday!

Ashley

It has worked for me.

Long story short- had CH since I was 20-21 (now 40) never diagnosed until 33 getting them twice a year- good thing for me, I only got it when I drank alcohol- as I got older, they got worse and came when I tried to take a nap or early morning. After that I went to the Dr. who explained what they were... put me on 180mg Verapamil & Imitrex... after 3 years on 180mg Verapamil, they only came in the spring time- up to 240-360mg while in cycle .... this last spring, the pollen season came early - as soon as I felt the slightest twinge - Dr. put me up to 240mg then 360 - shadows mostly, this was over the course of two months, back down to 180mg.. I think Juniper pollen mightbe the cause... I seemed to have skipped this year's cycle (and I drink almost daily). My theory is that (before Verapamil) I had two cycles a year, a strong spring/summer and a weaker fall/winter. The verapamil controlled the weaker cycle, I think the stronger spring/summer cycle is triggered by tree pollen, as soon as I get runny eyes/sniffles from the pollen, I asked the Dr. to up the verapamil, he agreed- 240 for two weeks, then 360, for another 4 weeks, then down to 240 for two more then back to 180 - to coincide with decreasing pollen. It seemed to work, but Dr. just says, we'll see next year....  As for the switching sides- in 20 years of CH they have been on my right side, twice, on my left.