Verapamil has been a miracle drug for me and has stopped my cluster headaches.  I have been taking verapamil, dramamine and melatonin every night and this has stopped a brutal headache cycle.  But I feel like the verapamil is making me somewhat depressed.  (I am not complaining but don't particularly enjoy the feeling--but I would use it again in a heartbeat if my headaches started again but I wish I could go off it now, but I am too afraid the headaches will come back.  I have not had a headache in many weeks, but I sometimes get pressurey feelings on the left side like my head is not totally normal--but they are not twinges and they are not shadows but they are a feeling that my head is not normal if this makes sense.  Should I proceed with trying to stop taking verapamil? (This is the first cycle I have used it so any advice appreciated).  I hope everyone is doing well--you guys helped me so much maintain my sanity for a month of these brutal headaches.

My prevent is lithium. The rule of thumb I use is 2 weeks completely pain free, I begin to slowly wean down from 1200 mg to zero. When I hit 600 mg., I find out if the beast is still there or not, as he comes knocking with a vengeance! If I start getting hit, I ramp back up to 1200 mg. and wait for another 2 weeks of pain free time.

Verapamil is a great prevent, but remember, it is also a high horse power med that isn't to be taken lightly. I'd sit down with your doc, explain your belief you may be at or near then end of a cycle, and work out a gentle down taper of the verapamil. Have the 02 at the ready! :) Praying you're right and the beast is done with you this go round.

Joe

I usually stop taking it after I have been PF for 2 weeks. Fortunately for me I have no side effects from it and just stop when I feel I can.  I'm currently on 650 mg a day and still get an occasional shadow but I'm not completely ready to stop taking it. Been in therapy for 5 weeks. Hope the cycle will be busted shortly!!

Do you ramp down slowly or just stop taking the verapamil one day? I was of the impression you were supposed to taper it down. I don't take it so have no personal experience! :)

Joe

I taper off right now I do 3 am 2 pm I'll go to 2 and 2 then 1 and 1 and then stop. As I stated before I was 2 years without anything then about 5 weeks ago WHAM!! they just came back went on therapy right away and they are bearable.

My experiment with tapering off verapamil was an epic failure. I hadn't had a full blown hit since last April so my neuro decided to phase down on the verapamil. I started by lowering it 40mgs/day for 10 days, then another 40 and then, as you said, WHAM...they came back. So...I'm going back up. I've had to use Migranal 3x now in the past 3 weeks, and I haven't had to use that for a long time. My BP is a little low making me feel tired a lot, but I'll swap that over the pain any day. God bless. lance

There are no clear guidelines and most suggestions here is to taper off a "few" (2-4??) weeks after your last attack. But be prepared to get back on if attacks return--don't wait and see what develops.

In rare situations, folks with rapid cycles or very unstable patterns, may stay on Verap. 100%--but I know of only a couple of situations where that was needed.

Good Question! When do ya stop? Thats the problem. Seems doctors dont know and are also guessing .

I have been taking Verapamil 240mgs extended for over 1 year now. When I read on Internet how high dosages of Verap were helping people, I told my doctor and he increased my dosage that I was already taking for blood pressure. BAM! Instant Prevention Relief! Just now realizing that I should have dropped down to my original blood pressure dosage after it got me over my CH cycle. Was kinda afraid to stop myself. I think that is probably normal for anyone with Cluster Headaches.
   about 3weeks ago I started another CH cycle. Havent sleept more than 2 hours pain free in 3 weeks.
   Thanks to this website and the good people on it (not doctors) I am figuring out what I should have done. Am waiting on Dr. to call me back now.
   Hope he agrees. I do have a nice full bottle and hope he says "go ahead and double the dosage".
  Will be hard not to do it myself if he dont agree, but 3 weeks with practically no sleep is rough.
GOD  BLESS  THIS  SIGHT!!!

You all,

Thanks so much for all your feedback.  It seems from reading here that it makes sense to taper off instead of just stopping abruptly.  Technically I think I have not had any head PAIN for at least 2 weeks--just weird pressurey feeling about every 3 days.  I do have a feeling of apprehension that since my cycles are usually 3 1/2 months how could I have gotten a break like this and maybe they will return but I will at least give it a try.  I really feel for those whose headaches came back when they tried to go off of it.  I am fearful mine will too but as others are saying it was a no brainer to go on the verapamil, because the headaches were way too ferocious this time starting out the cycle with 4 per night--one and a half hours of sleep--don't want to go back to that but my fingers are crossed and will try to taper off soon and let you guys know how it goes.  Good luck to all of you--I'monlyhuman, don't know if this helps but I did find that 12 mg melatonin and 4 dramamine per night along with 360 verpamil seemed to be a magic combination.  I tried benadryl also but found that although benadryl seemed to be working better intially it's positive effect was not long lasting over the course of weeks and it was the dramamine that seemed to really get me sleeping in combination with the melatonin (which I am really not sure how much if any positive affect melatonin had this time I would say very little) and verap that helped.  So I credit the dramamine and verap.  Hope this can help at all.

Wimsey I am so sorry yours came back :(  I hope that in the future you will have a different outcome when trying to taper--maybe at some time in the near future something will click and the headaches will be truly gone when you try to taper.  I'll post again to see if it works for me and if I can think of anything useful about what ends up happening.

Quote:

I usually stop taking it after I have been PF for 2 weeks. Fortunately for me I have no side effects from it and just stop when I feel I can.

Ditto

Im so glad I found this thread as it has answered my question I was about to post!

I have only been on the verapamil since June last year and had it increased to 120mg Bd (240mg a day)in Jan this year, I have had a couple of breakthroughs but on the whole nothing compared to pre verapamil and life is becoming 'normal' and I've nearly stopped fearing going to sleep.

I stopped taking the verapamil a couple of weeks ago and got a hit 2 nights later! started straight back on it at the increased dose (240mg) but I am struggling with how it makes me feel, I too feel depressed ( I don't use that team lightly as a psychiatric nurse) I am lethargic, unmotivated and irritable....Not me at all
So I've stopped the tablets again... no taper and no consultation with a doc, 5 days without and no side effects from stopping the meds.
I don't advocate this its just my experience and in my job I would always advise seeking medical input however it is difficult when Dr's don't have the knowledge or experience of this condition 

Sue:)

Souns like beasty may be done with you this go round, hoping that's the case Sue. You might consider lithium as your prevent next go round. I'm male, 51, about 190 lbs, my effective dosing is currently 1200 mg a day when on cycle. Blocks 60-70% of my attacks. Used to block close to 90% at dosing as low as 900 mg a day, but like with everything else, beasty seems to find a way around it! ;)

Only side effects are you pee a LOT the first couple of weeks..it is a salt...and you get a little lethargy, nothing a cup or two of coffee doesn't take care of.

Joe

Massive lesson learned!
Guess who can to visit last night!
I have started back on the verapamil straight away, think I tried to run before I could walk,
gutted  :( :'(

Sue

If you don't try Sue, you will never succeed!

Respect

Gary

A temporary set back Sue. [smiley=hug.gif]

Joe

Thanks Joe & Gary
Back on the meds
Had a little dance last night but 'he' aint going to get the better of me!!!
Sue

I have had CH almost permanently for the last 5 years. Prior to that they came in cycles of a few months and years apart. I was on cafergot for a long time until the docs told me I could not continue because of possible sideeffects. Cafergot is taken after first signs of CH appearing but it worked quite well. It just meant I had to go through an abbreviated CHbefore the muti kicked in. I am now taking 120mg verapamil daily and twice a week I take an extra 120mg. It has almost completely removed my CH and now I take approx 1 cafergot a week. I still get the odd weird feeling in my head but it has changed my life. However I do get a bit irritable so this thread is helping me. The doc never said that could be a side effect. But then what is the alternative? I would also like to reduce or stop taking it but for now I will stay on the daily dose.

I used to use the oral cafergot too. In the earlier stages of CH, they built relatively slow, and the oral cafergot worked okay. Others have used the suppository form of cafergot as it gets in the system quicker. It's fallen out of favor as there are many more efficient treatments, without all the potential side effects!

Glad to hear the verapamil is giving you some peace, there's a reason it's the front line prevent as it works so well for so many. Have you had a chance to try 02 yet?

Joe

I tried O2 once at the doctors but it did not seem to help. I am still getting the odd CH and have increased my verapamil dosage = 2 tablets a day total 240mg. Will see how it goes.

240mg of Verapamil is still a pretty low dose with 360-480mg being what is commonly needed to be effective with some people taking up to 1000mg.

When you tried oxygen at the doctors was it at a high flow rate (15lpm or higher)? Was it using a non-rebreather mask? Did you start it within a few minutes of the CH starting? If the answer to any of these was a no then that probably explains why it wasn't too effective.

i my self have been taking 240mg of vermapimil for 2 yrs straight every night before bed. and have been ch free for 2yrs.

I'm currently on 80mg Verapamil x3/day and it seems to be fairly effective, but the doc says I'm going to be on it for the rest of my life - even when I'm out of cycle.

Now I just need this cycle to end!  I haven't had a decent night of getting sloshed in over a month!   >:(

Hello. A new person here.
The Dr. just put me back on a low dose of Verapamil Friday, as in the past week my Clusters have taken a real significant change. Its nice to see all the comments and knowledge on it from actual users. (This stuff even low dose makes me LOOPY)
I will post more in other places describing these changes I speak of probably tomorrow as I have to go have 2 MRI's here in a bit to see if something has changed to cause the drastic changes.

Hey guys, I have not been on here for a while and did not know people were still posting on this thread.  Glad to see that it was a useful topic to bring up!
For an update, I am still on verapamil.  The weird pressurey feeling every couple of days never went away and I was too nervous to go off the verapamil.  Unfortunately about a week ago I began having more ominous twinges--some that would wake me up right after I fell asleep--weird--but no headaches.  Anyway I am taking my doctor VERY seriously when he said to wait 2 full weeks with no head pain/twinges/pressure.
Needless to say I am scared of the alternative which is going back to basically nonstop CHs at night.  BUT I will say when this bottle of verapamil runs out I will probably give it a try to see if I can get through the night.  I have turned into a wimp!  Maybe I will try sooner to stop taking it.  Anyway, very interesting to read what people have written.  Verapamil has helped me tremendously but no doubt it has extended my cycle--doesn't matter to me though as the alternative was horrendous. 

Hi, I'm new here and have a similar question. I was recently diagnosed with cluster headaches and have been taking 120 mg verapamil for about 6 weeks. After taking it for a little over 2 weeks, I stopped having attacks (!) 5 days ago, I forgot to take the medicine for 2 days. The past 3 days I have had attacks again at night. They are very severe, but these are only lasting about 15- 30 minutes total. Previously they would last about 2 hours. Is it possible that skipping those 2 doses made the headaches start again? How does verapamil effect the headaches? Is it possibly just making them shorter? Also, is it helpful to take it in the evening instead of the morning? I've been doing mornings because of insomnia but I only get attacks at night... Sorry for the long post and thanks for any advice!

Layla328 wrote on Apr 12^th, 2011 at 6:33pm:

.  I have turned into a wimp!

dood i think ch'ers are some of the bravest people on the planet. What is wimpy about being apprehensive of unimaginable pain ?? lol

id like to see someone call me a wimp to my face dealing with this sh1t  >:(

for the record, i havent had much luck with verapamil in the past but have just started a pred taper (godsend) and have been convinced by dr silver to try verap at a really high dose one last time.

so now im on 960ed - going for an ecg this week and he is going to increade it again to around the 1200 mark.

should see the looks i get in the chemist when i go to dispense my prescription lol

but i just slap them out of the way with a personal letter that he has written for me telling "to whom it may concern" to just shut up and dispense my meds tee hee.

i also have them giving me 15 boxes of imigran at a time on demand now  :D

little letter goes a long way (if its from a man with more letters after his name than letters in his name)

pfd
chops

Chops,

Oh my gosh I need to clarify what I meant--first let me say I agree with you 100% that CHers are some of the bravest people in the world!!!  I have been episodic CH since I was 14, and all I meant was that I am afraid to stop the verapamil even though I have O2 available if the headaches were to come back at night--in my younger days I had a thicker skin (for whatever reason) and would have been able to deal with just seeing for one night if they came back if I had O2 available.  I shouldn't have called myself a wimp though!  It is surprising to me that I am so fearful of them returning I guess, because I feel that I have been dealing with episodes for so long it would seem one night should not make me so afraid.  But please accept my apology I feel that CHers are unbelievably brave and also since people who don't have CH don't really understand what we are going through it is not like others are able to recognize how brave we are and that makes it all the more courageous that we deal with these horrible headaches.
ViolinVixen, yes it is possible that because you stopped taking the medicine that is why the headaches came back, and also yes it is possible that the medicine is making them shorter when they came back.  My doctor told me that the way the verapamil works is that it bonds with something in the hypothalamus.  He also told me that the frequency of my headaches during cycle was a result of not having been on verapamil in the past.
As far as taking it in the morning or before bed, I am a nighttime sufferer so I take it at night.  You wrote that because of insomnia you take it in the morning, but it might make more sense to take it at night because it can help you sleep (doctor said that) and also it makes sense to take it before the time when your headaches normally strike.  My doctor told me to wait 2 full weeks without any head pain (twinges, shadows, etc.) before stopping taking the medicine.  He really stressed that point, because he said, if I don't wait the full 2 weeks that the headaches could resurface and come back at that point.  I hope some of this was helpful.  I also take 12 mg melatonin and 4 dramamine at night along with the verapamil.  I was experiencing very frequent nighttime headaches and so far this combo is working and has suppressed any attacks.  I hope that you can also go back to being painfree!!!

Well, I've been taking 960mg per day for about 4 weeks after ramping up slowly from 120mg. 

Pain levels and attack frequency had both tailed off to well within tolerance for me.  I can deal with one mild attack every few days rather than 4-7 full-blown nasties per day, as I can just stick myself with a sumatriptan pen and breeze it away, whereas with any more than 2 attacks per day I obviously can't "waste" pens on mild attacks.

It's now been over a week since I've had any sort of attack,  at all, and the last few barely hit kip 5, so I came looking for information on when and how to cut down on the Verapamil.

My CH period has been three times longer this time around than my previous bout (3 months compared with 1 month), so I'm fairly confident that the bout is coming to an end anyway, if it hasn't ended already.

I'm just sick of spending money I don't have on taxis to the doctor's, taxis to the pharmacist, taxis home again, and having to deal with being out and about while suffering from depression, general anxiety and social anxiety, so I'm eager to stop needing more Verapamil.

I'm also sick of taking so many meds in the morning that I feel like I've already eaten a snack before I even start my breakfast.

Tempted to just skip today's dose and see what happens.

Has anyone gone cold-turkey on Verapamil before, from 960mg or thereabouts? 

Are there any dangers of just stopping, does anyone know?

I see people are recommending a slow ramp-down, but if I do it that way, then I'm going to need at least one more if not two more trips to the doctor/pharmacy.

Something I haven't seen published anywhere is the use of Nortriptyline. I was offered Verapamil when my CH was first diagnosed. I was also offered Nortriptyline. I was told Nortriptyline is easier on the body. What I found was that it takes awhile to build up enough to do any good. My prescription was for 10mgs caps. I started with one for 3 days then two for 3 days then three for 3 days and so on. I now take six everyday while I think I am in season. When I think my season is ended I start to reduce in the same way as I started. It works for me. I have never seen a posting for this before so, I thought it might help.

RRavik wrote on Aug 3^rd, 2016 at 12:20pm:

Something I haven't seen published anywhere is the use of Nortriptyline. I was offered Verapamil when my CH was first diagnosed. I was also offered Nortriptyline. I was told Nortriptyline is easier on the body. What I found was that it takes awhile to build up enough to do any good. My prescription was for 10mgs caps. I started with one for 3 days then two for 3 days then three for 3 days and so on. I now take six everyday while I think I am in season. When I think my season is ended I start to reduce in the same way as I started. It works for me. I have never seen a posting for this before so, I thought it might help.

...like amitriptyline is an anti-depressant with reported success treating migraine....many docs like to try for ch.  Poor results reported here for ami and is old line. I tried 15-20 yrs ago and the only effect I got was an inability to get out of bed in the morning.

Nori supposedly has fewer side effects...but ami metabolizes to nori...so go figure. If it works for you...GREAT...

best

jon

For those of you that are on verapamil. The vitamin D regimen is worth a try as a preventative, it Has a good record of becoming pain free and is a safer option.

Hoppy

musophil wrote on Aug 3^rd, 2016 at 10:31am:

Tempted to just skip today's dose and see what happens. Has anyone gone cold-turkey on Verapamil before, from 960mg or thereabouts?  Are there any dangers of just stopping, does anyone know? I see people are recommending a slow ramp-down, but if I do it that way, then I'm going to need at least one more if not two more trips to the doctor/pharmacy.

Skipping one dose probably won't have too much of an effect since dose changes normally take 7-10 days to become effective. So don't base anything on a single day test.

I'd strongly suggest you talk to your doctor about how to ramp down since you're on a pretty high dose and a sudden stop may impact how your body is regulating blood pressure.

RRavik wrote on Aug 3^rd, 2016 at 12:20pm:

Something I haven't seen published anywhere is the use of Nortriptyline.

Nortriptyline is the first preventive I used and it was reasonably effective, but I found that verapamil did a much better job at preventing CHs and later I moved to D3 which was even more effective.

As to how well each will work for you, you'll need to try them to compare how effective they are, what the side effects are for you, etc.