Does verapamil work as a preventative for you?

[Freud]

I’ve seen some talk about verapamil lately and was wondering if anyone has had success with it without busting. My MD is titrating me up and thinks I need a backup to MM. being that you have to get it down to a science before you always have it at hand. If it does work for you how much are you on. I’m currently on 560mg a day divided into 3 doses. 

[Ben]

Didn’t help me.

i was at 560 as well until my heart rate slowed so much my neuro took me off of it.

[jon019]

for me...about 70% effective preventing or minimizing hits (not consistently tho)....O2 and energy drinks for the other 20-28%...Zomig NS (5 mg) for the 2% breakthroughs....

…..all while episodic....480 mg/dy in low cycle....over 1000mg/dy in high cycle....always IR as the extended release did not work at all...divided doses timed to expected hit times was sorta successful...

...minimal side effects but I always drank lots of water and increased fiber as this med can be quite constipating......also reported ED concerns....and potential heart rhythm problems (which is why an ECG before starting as a baseline....and whenever dosage increased significantly is wise)...these issues transient with discontinuation

….one of the cheapest meds I've ever used...I think about $10/mo in generic form (Calan the brand form)...the tabs sure are BIG though....

….there has been much discussion over the yrs at ch.com re this med causing extension of cycles or changing episodic to chronic.....have seen NO studies that confirm this anecdotal evidence.....I did become chronic after 23 yrs of episodic and gut feel is that verap was not responsible...but really no idea

...no longer using....

[Freud]

Thanks for the replies guys keep em coming.  

[HazBaz]

Works for me. Lessens frequency, duration and intensity, at relatively low doses compared to some.

I take 80mg IR 3x daily and 240 ER 1x daily when in cluster. So 580 total a day.

Terrible constipation and other 'normal' headaches are side effects. At higher doses my heart doesn't cope too well, so regular ECG monitoring is a must at dose change.

I also still get hit. At least once or twice a day. They are just less unbearable and relatively easy to abort with O2 it seems.

Edited September 3, 2018 by HazBaz

[Freud]

Interesting ER IR combo. I have CCH just finished my first year. My first headache md was titrating it every 3 months totally worthless. My new doc I travel over night to see but it’s totally worth it. He titrates every 7-10 days but insisted I see a local cardiologist to check my ekg and bp. I suppose if there are others out there it helps I’ll continue on it. He thinks I need a backup to MM being that I ran out and haven’t gotten my grows down to a science yet. 

[spiny]

I was maxed out at 240 IR. I took it noon, dinner, and bedtime. Worked great! Until I quit because my dentist had a hissy fit over hyperplasia! So I stopped the Verap and the CH returned.

It never worked again for me. My bp went down to a resting 80 over 60 with just that small amount, so upping the dose was not an option.  I took it year round too.

[Freud]

Wasn’t aware it affected your gums, I’ll look out for it. Right now I feel like the MM are the only thing that works. My cardiologist is amazed how much I’m on with out it affecting my blood pressure. 

[jon019]

45 minutes ago, Freud said:

 My cardiologist is amazed how much I’m on with out it affecting my blood pressure. 

Which is why we always encourage folks to find a headache specialist (good idea to have a cardio too). Most PCP's are truly freaked by the amount of verapamil some of us need....and won't do it! The best neuro I ever had was  amazingly nonchalant about increasing my dosage when necessary and trusting me to titrate on my own depending on cycle strength. I have yet to see an explanation for, or have any idea why many clusterheads can tolerate massive doses that would put a bp patient on the floor. Guessing it's partly confidence in the physician and physiology of a clusterhead vs a bp patient.....dunno……….

Edited September 3, 2018 by jon019

[Freud]

A normal heart and vascular system can compensate amazingly well for most people. I am still amazed it works to lower people’s pressure who need it for that. 

[ThatHurtsMyHead]

The first year I took it, it seemed to work (or my cycle was stopping anyway, I'll never know).  The next year, it didn't work and gave me PVC's (Premature Ventricle Contractions - Very scary heart palpitations), that took close to 2 years to completely go away after stopping the verapamil.  Never touch that stuff again.  After the heart palpitations went away, I went from episodic to chronic. 

 

J

[Siegfried]

I took it for 5 weeks and it did not do anything... or nearly anything. I often have weak migraines on the left side and yes they did stop during my verapamil period, but it had no effect on the right side where the heavy stuff sits. Most important reason for stopping it was that it did not play well with Zomig.

[Racer1_NC]

My thoughts on Verapamil from a different thread...

Quote

Now...I want you to take the following as just another piece of information from someone's experience, not as full on truth. Keeping that in mind I'd like to address Verapamil. Verapamil if often one of the first drugs a doctor will prescribe for CH. I know it sure helped me.....at first. I was on it for several years. At first when the cycle ended I could taper off and be drug free until the next cycle. After a time that changed.....the cycle would appear to be gone but if I tried to taper off, the CH would return. Enter the "controlled chronic" stage...and then the "not so controlled chronic" stage.

After having quite enough of my head hurting I decided to make changes....tapered off verapamil during a low cycle while trying every known alternative...repeatedly. It took a while....a good while....but my head is now clear enough to just use D3 to stay PF. I know the CH is there.....just below the surface. Those "funny feelings" come every once in a while causing me to up the D3 for a while. I'm not cured. CH changes, adapts and never really is far away. I know that tomorrow I could wake up running for the O2 tank, but for now....head wise life is good.

I'm not a doctor. Just someone with CH that believes continued Verapamil use turned me chronic for a while. As stated before...this was my experience. Everyone else in the world could be different.

 

[Freud]

Thanks for sharing!  For me it’s the MM that does the trick, I’m a CCH so no risk of converting me. I’m just a bit uneasy taking these wrapping doses if it’s not working. Every time my CH returns inbetween mm doses my Dr ups me 80mg. My doc thinks I need a backup to the mm at least until I get my supplies up. I stopped taking the depakote it was doing nothing and I don’t like the potential side effects. 

[jon019]

I've always been wary of multiple prevents at the same time.... increases the chances for disruptive side effects....and IF it works, you are never quite sure if it's one, or the other, or the combo....and even then, different dosages may have completely different results.....

….no experience with Depakote....have heard of its use but not a whole lot of reported success....or negative side effects. Supposing it is similar to Topamax...which I took once in conjunction with verapamil. worst side effects I ever experienced and I begged the neuro to discontinue...she apologized for, as she put it,  "using too big a hammer" (Verap plus Topamax)...I treat CH VERY aggressively!". Damn skippy she did...besides the prevent she was ALL in on OXYGEN,  w/Zomig for breakthroughs...ordered ECG's and testosterone tests...and actually LISTENED to me...………….

Best

Jon

 

[Freud]

I’m sure at some point I’m going to reach a threshold dose. Either I will have to come off from side effects (low BP or slow heart rate) or my headaches won’t come back. However, now that I’ve gotten a grow under my belt and have optimized things I should have enough to dose once or twice a month and keep them at bay. In that case I think I want to come off the verapamil I’m now up to 640mg a day. 

 

Brian

[LissaB]

I have been on verapamil for 10 years.  It has been a life saver for me.  I take 2 240mg doses a day. I just finished 13 months no CH. They have started up again recently and I am going to blame it my slacking. The last 3 weeks I have not been diligent about taking it twice a day so they started coming back.

[Freud]

Thanks for sharing Lisa. It’s good to see someone it helps. Make me feel better about taking it. 

Edited September 9, 2018 by Freud
Typo

[Freud]

On 9/7/2018 at 1:35 PM, Siegfried said:

I took it for 5 weeks and it did not do anything... or nearly anything. I often have weak migraines on the left side and yes they did stop during my verapamil period, but it had no effect on the right side where the heavy stuff sits. Most important reason for stopping it was that it did not play well with Zomig.

What did you mean by “...it did not play well with Zomig”?  5 weeks is a relatively short period of time to try verapamil. It needs to be titrated up at a moderate to slow pace 80mg every 7-10days if no relief. That’s with EKGs and BP check a few days after starting new dose. Some people require really high doses to quell the cluster beast. As high as 1000mg! I’m currently at 640mg/day. 

[JeffnTx]

I took 480 mg daily for almost 20 years. It clearly reduced the frequency of Clusters and severity of pain. Prior I had typically 2 clusters/year. On the drug only every year or two. I started having edema though as a side effect. My GP cut the dose in half witch triggered an episode, whereas I had no  clusters for 2.5 years prior.  After that I was slowly weaned off the drug. Had no episodes for 2 years. My neurologist indicates that the episodes can become less frequent with age on their own. I am sure though that the drug decreased my # of episodes.