I have been on 720mg Verapamil for around 5 months for my annual high cycle.

I have been trying to slowly come off at around 80mg every 10-14 days but am now experiencing that taking my Verapamil dose actually triggers vicious attacks exactly 1 hour after taking it. These attacks are almost impossible to kill off with O2 and come 3-4 more times lesser and lesser each time. Same thing starts again with the next dose.

Has anyone experienced this before and found out how to deal with it?

Thanks

Suggests that you are tryingto come off the Verap. too soon after you think a cycle has ended. Try waiting for one to three weeks after what you suspect may be the last attack in your cycle before starting to reduce the dose.

If need be, there is no inherent problem staying on (except for cost) for long periods even when no attacks appear. Some folks who have short intervals between cycles stay on it 100% of the time.

Thanks guys.

I feel that I am coming off my cycle but it is Verapamil that is actually provoking the attacks. Anyone experienced this before?

I took verapamil for a number of yrs...was one of those who needed up to 1020 mg/dy for effectiveness...tho I titrated, depending on cycle, down to 480. Fortunate that except for occasional too low bp, I experienced few side effects....

Several times, for multiple cycles, and not necessarily sequential, verapamil doses did indeed, for me, precipitate hits. I know this because like many others, I could set a clock by my hits. ALWAYS the same time of day. On these occasions..it was nearly univerally 1 hour post dose and I would get hit at a time out of the ordinary. This was extremely distressing as verapamil was usually 70% effective in reducing number of hits... and I despaired that it was no longer working....but in fact exacerbating.

It's been so long now that I'm foggy on what I did beyond maintaining usage and keeping my O2 tank and energy drink close by....but I think upping the dosage helped (hard to do if you're already over 1000).

If I HAD to guess it would indeed be that the current dosage was too low...and I kept on a maintenance dosage of 480 even between cycles (formerly episodic...now chronic). This, or some other unknown factor resulted in resumption of effectiveness, and the "med hits" were no longer....

And one note I should throw in.....sustained release NEVER worked for me...tho it does for some. The only way to know is to try both......

Best

Jon

Old Italian saying: There is only ONE thing worse than bad wine...and that is:  NO wine!

Hey All,

Thanks so much for this specifically valuable discussion!

35 years episodic (gratitude), last 20 years big gaps of years (muy gratitude), last cycle 2006 (thought I outlived The Beast - damn). My cycles typically 12 weeks - 9 into this one. This cycle noticeably less severe in frequency and for the most part intensity (at least as memory serves) . But I think my advanced management skills play a big part. I only offer this as yet another data point especially for newly diagnosed who are going through that often horrible experimental curve.

Tried Verapamil before. Seem to recall it did not really work but a revisit to the 2004 NIH study convinced me that my dose was too low. This cycle I ramped up to 720mg/day and bingo, it has been a key prevent for daytime attacks (sumatriptan injectable for abort). For nighttime prevent I have not seen anyone talking about slow release Naratriptan (2.5mg). I highly recommend checking this out to get at least a few uninterrupted nights.

I digress. At 7 weeks I started to have recognizable cycle tapering behavior like a full day of barely perceptible shadows, etc. I experimented with stopping cold on the Naratriptan  and tapering the Verapamil down to 240mg. Encouraging pain free periods ensued which egged me on. Returning shadows and a couple of discouraging hits knocked my arrogance down a few notches and I started to ramp back up on the Verapamil. This is when I experienced the symptoms discussed in this thread. Without having read this yet, my body messaged to me the same conclusions. I announced to my poor wife (so tired of my ever shifting treatment hypotheses) "I'm convinced that the Verpamil is now causing attacks". I acknowledge Bob's caveat about semantics but have to concur with Neuropath that the attack profile is pretty compelling that there is some mechanistic role that can turn Verapamil into an attack promoter.

I agree staying on effective dose can bring some control back but now I have this nagging feeling that the Verapamil in fact could be itself be prolonging my cycle. It would make biochemistry sense. That’s just how cell signaling pathways behave. They are like junkies. Well in fact, opioid dependence is the best model in the world of rebound.

I see Neuropath’s advice about caution but starting the taper precipitated the rebound.
Does anyone have a ‘happy ending’ anecdote? Did you just wait for like 2 weeks of no symptoms, then test a taper? Maybe this is intuitively obvious. I guess I just want to hear about a successful taper
story. Thanks.

Jon,

Thanks so much for the info and experience! Yes, soooo loathe relying on meds. There is no free ride with meds - always a significant trade-off of some sort. Per your last comment, I actually am ramped back up - 2 days at 360mgs. In conjunction with my non-med management goto - vigorous physical exercise - I did OK. No sumatriptran shot which is my typical 'victory' metric. You are right, cannot avoid experimenting.

May I ask, when you said you got the courage to go off 'until I did', did you have to just white knuckle through some hits or...? I ask because I have major week coming up and don't have the luxury to do that yet.

StevieB wrote on Apr 29^th, 2015 at 2:06pm:


Yo Stevie...ask away...that's why we are all here!

It was a combination of things....like 15 yrs of doc appts, constantly changing scripts, failed attempts with meds from docs who didn't know what they were doing, scary side effects, considerations of scary long term side effects, tired of chasing my own tail, JUST. PLAIN. TIRED.

I figured it can't be any worse...others here have done same and I took encouragement from that (hope they'll chime in)...AND the encouragement, support, and love from this family. Partly from them and partly from my own epiphany, I realized I was making things a whole LOT worse by freaking out over hits. I'd thrash and cry and curse and ramp up the adrenaline to the point where nothing would have helped. When I learned to calm the f*** down things got a whole lot better.

I did have to ride out some hits...but really not many, if any, more than when on meds...and I learned to use O2 much more effectively. This worked ok for 7 years until some personal trials overwhelmed my ability to "zen through". At that point only verapamil and energy drinks plus the O2...with Zomig NS as my abort of last resort. Lately age, stress of "other" illness, and possibly D3
have got me in a very low cycle that I hate even commenting on (bad juju). I still have my green headed buddy (O2 tank) in the bedroom.... which I pat EVERY day...and carry a Zomig NS everywhere I go. My versions of a green blankie...................

Hang in, hang on, it DOES get better!

Best

Jon