Well, we agreed with my neuro that it would be a good idea to still try Verapamil once before switching over to lithium and try to manage the extreme constipation I got the last time. So:

I would be very interested in your experiences in using it. Are you episodic or chronic? How fast did you raise the dosage? How effective has it been for you and at what dosage? Did it cause any side effects for you? Did you manage to avoid these side effects, most notably the constipation, and if so, how? How long have you used it? Are you worried about the possible long-term side effects, e.g. Verapamil causing heart problems? And finally...if you get constipation from using Verapamil, what kind of food do you eat?

Lots of questions. I really appreciate all the feedback :)

- Rosa

I take verapamil.  I am currently on 120mg 4 times a day (total 480mg per day).  When I originally started on it, it was actually before I had CH and I was only taking 120mg or 240mg a day total - can't remember which.  Once I started having CH and was diagnosed, we took the verapamil all the way up to 960mg a day.  We first went up to 720mg pretty quickly - over about a week's time, I think - but then went up to 960mg later.  My CH's had always come at the same time every day - 5pm, 7pm, 9pm, 11pm, 2am, and 4am - but ever since we first took the verap to 720mg, I no longer have CH at any regular schedule.  This could be seen as a good or bad thing, but mostly I think it has been good.

Unfortunately, on the higher doses, my blood pressure got extremely low (60s/40s with pulse in the 40s), and I started having chest pains and vomiting, so we had to come down on the dose.  For awhile I went to the short-acting form at 480mg a day, and then I dropped it altogether for awhile.

Last summer, I started back on it, and I've been on 480mg a day ever since then.  I did have one abnormal EKG, but then we checked it again after a month, and it was normal, so we didn't have to adjust the dose - never knew if the abnormal EKG was from the verap or not.  The biggest side effects the verap causes for me is fatigue and swollen feet.  I don't have swollen feet all the time, but I get it periodically and it can be pretty bad.  I actually have to talk to my neuro about this next week because it's been happening more frequently.  The verapamil has reduced the amount of hits I had per day the majority of the time.

I had constipation from another med I'm on - and I'm not entirely sure if the verapamil made it worse or not.  What worked for me was taking Miralax once a day.  Miralax is now over the counter.  I recently had surgery, and once again the constipation was an issue, so I tried Miralax and colace, and it worked once again.  Once I got things more regular, the Miralax was able to be stopped.  I'm also on domperidone for GI issues, which aids in gastric motility, so I don't know if that has the added benefit of reducing constipation also.

At any rate - that's my story with verap.  I am a chronic CH'er for almost 5 years, and I've been on verapamil through most of it.  Due to the recent surgery I had, I'm hoping to start weaning off all headache meds over the next few months, but that's another story, and the decision only came about after years of prolonged suffering with clusters and chronic daily migraine without relief.

Would your doc consider adding lithium to the verapamil instead of simply switching from verap to lithium?  That works for a number of people here, and helped me for a little while, too!

Best of luck!
Carrie :)

Hi Rosa,

Yup, lots of questions. All good ones...

My experience:

Episodic 20+ yrs, now chronic 2+ yrs.

Initially started sustained release verapamil yrs ago at 240 mg/dy. Sorta worked (reduced but not eliminated hits). Then stopped working altogether and I tired of the endless rounds of new prescription drugs and stopped all meds totally (only O2, MY SAVIOR).

Lasted at that for several more years, then my life became affected more than I could handle. I became desperate and FINALLY went to see a neuro for first time. She said, sustained release no good AND they should have increased the dosage. So she did, to 480 mg/dy of immediate release, plus topomax at 100 mg/dy (a nightmare I care not to repeat and STOPPED (others report good results)). BUT, the increased verap DID work and I have had to increase to 680-720 at times, then back down to 480. Any less and cycle returns.

Side effects include fatigue, occasional dizzyness, and occasional low BP and occasional constipation. I can live with all tho it is wearying. I CAN control the constipation with LOTS of water, 1000 mg/dy of magnesium, and LOTS of fruit. If I neglect any of these, NOTHING moves. Great motivation.

Am I worried about long term effects? Oh yes, with this and any other med. Have had ekgs which show no problems currently. I am also cognizant that some have theorized that long term use of verapamil may result in chronic condition vs episodic. I think about that a lot.

Regards,

Jon

-Chronic.
-Started at 360mg...no effect on the HA's...after two weeks went to 720
-At 720 my hits have gone from daily to a couple a week.
-I seem to have less energy than before and I would swear that my    memory is not what it use to be.
-Have not been able to avoid the side effects, but I can live with them because they are not as bad as the alternative
-I have been on 720 for at least 7-8 months
-no
-After reading bob's post I have considered getting an ekg
-I have never had any constipation with or without verapamil.

Best of luck and PFDAN.

MPMIII

constipation.....yes.  I suggest eating smaller portions to avoid feeling over bloated.  If you combine verap with lithium, you may as I do have periods of constipation and periods of the opposite.  My advice is not to worry about the constipation.  Its better than the alternative. I've also read the posts and studies about long term use.  I have been using it almost every day for about 9 years and an EKG showed no problems with the ticker.  I hope you feel good about taking verap.  Its very effective for alot of us.  If it fails, well there are other options to consider.  But I think you'll have some success.  I take 1,200mg a day by the way

- 7 yr’s chronic.
- Tried all that other crap and had no effect.
- verapamil, had no effect.
- O2 @ 25-40 Lpm can really help the stingers.
- Try the lithium! If it does not work you are out $25.00 for a 30 day supply.
- It cann’t hurt to try if you are truly chronic. Cheaper than a M tank refill.

Hi Rosa. I am a Verapamil user at 480 mg daily. This worked for me with my last cycle (I am episodic) along with the o2 as my abortive. I also like many experienced the constipation with the Verap. and my Neuro suggested a high fiber cereal so I take small amounts every morning of Fiber1 with honey clusters and things are good.
I am 49 so I will continue with Fiber1 even out of cycle, it just makes me feel good daily.

We have enough to deal with so keeping the plumbing working smoothly is one less thing to worry about. :)

Verap worked for me once, but other cycles it didn't do anything. I have horrible side effects from it - constipation (we all love that one), ankle/feet swelling, and worst of all it really, really messed with my vision.  So, no more for me!

Hi all,

I am episodic and no two are the same. I have had clusters since I was a child. I am 57 now. I was diagnosed about 7 years ago.

I have used verapermil about 3 or 4 times and in general it works. It has worked differently each time. One time being really good at keeping the headaches at bay and another time I needed other medication to abort.

I haven't had constipation from using verapermil.

What I am uncertain about is how quickly you increase dose and how slowly are you supposed to come off it.

I am not sure if I am right but I think after using it and coming off it my blood pressure increased. The first time it gradually went back to normal after the next time about 2 years ago it has not gone back to normal and now the Dr is trying to get me on BP tablets which I am resisting. I have gone for excercise and less of everything else.

It may not be linked. Anyone else had this?

Best wishes to everyone for freedom from the pain.

ET. xx

Are you episodic or chronic? ........episodic

How fast did you raise the dosage? ....... in two weeks went from 480-660

How effective has it been for you and at what dosage? ......stopped my hits within days- still had shadows for a couple of  weeks - weak ones

Did it cause any side effects for you? ........extreme fatigue- could fall asleep sitting up, memory loss, lethargic, weight gain

Did you manage to avoid these side effects, most notably the constipation, and if so, how?...... no constipation at all

How long have you used it?....... i used it for 9 weeks- tapered off over a three week period

Are you worried about the possible long-term side effects, e.g. Verapamil causing heart problems? .........sort of-  i was so happy to be on it to stop the headaches i didn't care at the time, but the side effects for over two months really wore me down - so i was extremely happy to taper off.  Not sure about long terms side effects with short bouts of use-  I don't have any knowledge of that - so consumed with being pain free and trying to juggle my life :-[   but i know i should!

And finally...if you get constipation from using Verapamil, what kind of food do you eat?....... n/a

hope this helps

I am episodic.

I have used verapamil 3 times. The first time I did not go above 240 and this was increasing from 120 to 240 over a couple of weeks. When my episode ended I just stopped taking it.

On the 2nd time I increased dosage over a couple of weeks and went over 400 per day. This time I was advised to reduce taking it over 3 months. I was so crap at doing this. Kept forgetting to take it and always lost where i was in terms of dosage. I gave up after 6 weeks. It was after this one my BP went up.

Currently I have started taking it at 180 and within a couple of days I have up it to 240.

Never had constipation with it nor do I recollect any other side effects. Mind you when I am in a CH episode I don't notice much else that goes on, although I would notice constipation (and have experienced it badly from using analgesics with opiates).

My concern with these types of treatment is that once you take them it's hard to stop them without BP going up and in my case staying up.

Recommend cluster busters as a good alternative to read up on.

ET. x

So, one more question:

Those of you, who did get constipation...or who did get tired:

Did you notice that those side effects lessened or disappeared over time, e.g. in the span of days or weeks?

- Rosa

Tired symptom-  exhausted while taking verap-  no verap for about 2-3 weeks now ( can't remember!!! )  and still tired but not as tired.  Midday is the worst ( around 2 pm)

Side effects for me were mainly dizziness and sleepiness.  I couldn't take a yoga class without almost passing out several times.

I have IBS so the gastrointestinal effect of verapamil was a benefit to me  8-)

This past cycle I switched from the extended release formulation of Verapamil to the regular release formulation.  Using 40mg steps I was able to titrate up more slowly and fine tune the max dosage as needed.

While I was only able to tollerate 240mg of the extended release.  I got to a theraputic dossage of 400mg of the regular release.  It did the trick and eliminated 90% of my hits.

-Dennis-