Verapamil helping, hurting, or doing nothing?

[Mjedwards409]

As posted in another thread, my wife started the 3rd cluster of her lifetime the first week of May.  In 2014 her cluster lasted 5-6 weeks, in 2015 2 weeks, and she's currently in the 5th week since this one started.  (The other two were in late June/early July, so the May cycle is a first). For the first weeks of this cycle it was consistently a single Kip 6-8 once per night, each night between 2AM and 4AM.  She went on a prednisone taper the 3rd week of 30mg for 5 days, 20mg for 4 days, and 10mg for 4 days.  She was CH free the first day of the prednisone, and currently she's 5 days past her last pred dose with no CH at all since she stopped.  (Good sign). She started taking Verapamil ER (I know, not the preferred formula) at 120mg for the first few days of the pred taper and increased to 240mg which she's been on since.  She's also been on the D3 regimen since day 2 of the entire cycle and hasn't missed a day.  Did the 12 day accelerated loading and is still taking 20K IUs per day.  

The fact that she still hasn't had the CH come back 5 days after the low dose pred taper ended seems like great news.  That said, she been having what may be shadows, or just bad tension headaches every morning upon waking, which go away with coffee, water and advil each morning.  Then she usually gets another one of these same headaches early afternoon, which also go away with the same treatment.  These definitely aren't severe compared to the CH, but are still very much bothering her.  She describes the pain as either whole head, or one sided, interestingly enough on the opposite side of where her CH were this cycle.  

We're kind of in a holding pattern, as it seems like 1 of 3 things is happening:

1) The cycle is ending naturally, and the verapamil is causing these tension headaches as a side effect.

2) The cycle is ending naturally with shadows marking the end of her cycle, and the verapamil/D3 aren't changing anything at all.

3) The Verapamil and D3 are helping by slowing down her daily CH to only a few manageable shadows per day.

We are about to go out of town for a week, and she has an appointment with her neurologist when we get back.  Our plan now is to not change anything, as the current situation is absolutely manageable and we don't want to risk changing something and revamping the cluster.  Is that also what you all would recommend?  She's still too new to this disease to know exactly what her patterns are.  She hasn't been brave enough to try the beer test, but we did try one other test involving an activity that's normally a trigger for her, and she passed that.  :-)  Any feedback is appreciated!

[FunTimes]

I sometimes think the same things. I take verapamil, bust, do the D3 on a regular basis. I sometimes think maybe one of them is not working or helping make things any better. I have cut them out of my routine and things wend down hill in about a week, then it takes a few days to get it back into your system so for about 2 weeks I was getting hit harder then I should of been had I stayed the course. I know I will try to cut something out again or change things up again and see what it does and get my ass kicked again but that is what makes clusters so much fun.

If things are manageable for now I would hold off until after you get back from your trip. Everyone is different so nobody can really tell you what the correct thing to do is but if you and your wife are thinking maybe the D3 and or Verallamil are not working then the only way to find out is to cut that out of your routine. But be ready to jump back on it. Verapamil will need to be weened off of, you do not want to mess with your dose on that to much without talking to your doctor first. 

Good luck and let us know how it turns out. I hope it is all for the better. 

[Zookah]

I was told by one of my neuros that you can have withdrawl from acetaminophen, and also ibuprofen.  From taking it daily it can make the headaches worse or trigger one. Personally if its working i wouldn't change anything. The d3 regimen and o2 work fine for me though i refused the verapamil( I'm only 29) it could be the caffiene or the advils. Im thinking advils. Everyone is different though, just because it works for one of us might not work for your wife. At least its managable because thats the best we can do is manage it.  Ill take the shadows anyday compared to the attacks, i think the worst thing about shadows is it scares you into thinking one is imminent. When i get the shadows i just drink high pH water or coconut water and they usually go away with hydration. Best of luck with your neuro!

[Mjedwards409]

Thanks guys!!  She's now hit a week after prednisone with no CH.  She flew yesterday to Denver (high altitude) with no headaches on the plane, and no headaches overnight.  I know you can never say never with these but really hoping the cycle is done.

[gary6454]

I just started on the Verapamil er 120 mg twice daily. Is the slow release Verapamil better?

[CHfather]

1 hour ago, gary6454 said:

Is the slow release Verapamil better?

No! It is considered to be much less effective.

240mg/day is unlikely to do much of anything for you. I am assuming your doctor is starting low and monitoring side effects before adding more, which is good medical practice.

Are you doing the D3 regimen?  If so, be sure to take your verap about 8 hours apart from the calcium in the regimen.   

Edited April 24, 2020 by CHfather

[Tony2]

I have been getting clusters on a roughly 2 year cycle for the past 15 years.  The cycles last about 5 weeks.  The starting month is a moving target.  The last cycle was Nov 2017 after a Nov 2015 cycle and a Sept 2013 before that, but this one is April 2020.  I try to not take drugs if possible, but it becomes too unbearable at times.  The past 3 cycles, I’ve been using the Sumatriptan nasal spray.  I probably wait too long to take it because I really only want to do it if necessary, but then I deal w/ a monster headache.  I find that no 2 clusters are the same (pain or length).  Unfortunately, while the time between cycles has been somewhat consistent, as have the cycle times, the severity and frequency during the cycles is getting worse.  Alcohol is 100% a trigger for me and has always been.  I am starting to find working out and being hot under a blanket are also triggers.  Anyway, to get to the point, I started taking 240mg of verapamil 2 days ago.  I can let you know how it goes.  

[CHfather]

Tony2,

Please see the post right above yours for some verapamil-related info.  Also, note that verapamil takes some time to get into your system, so you probably won't experience results for a while. Sometimes doctors prescribe a course of steroids to temporarily take away the pain while the verapamil is building up its effect.

You probably want oxygen; you probably want to start the D3 regimen; probably you want to be taking Benadryl right now; you might want to consider busting; you might want an injectable sumatriptan . . . . This post addresses those things and some more: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/  

[ChrisK]

I take 240 mg on a regular basis for high blood pressure.  When I am in a cycle my dr. bumps it up to 240 twice a day.  this alone helps a lot.  I also do the whole D3 Reg.  that being said Even though I know I am still in a cycle.  the hits are manageable.  Good Luck.  Keep us posted.

[Siegfried]

I got some weird side-effects with my nerve system when I took it. 120 mg was fine but when doubling to 240, the problems began. And I just did not feel fine with this. 

I tried it then again a year later with the same result. A medrol injection I also got previous year and then taper down with tablets and that went very well. No more headaches during that time and no side-effects that I was aware of. I found that a very effective way to bridge a really bad period.

[Tony2]

To follow-up:  I think the Verapamil helped a little.  I was on 240 mg extended release.  I started taking it a week after my cycle started so I didn't get to see the benefit over a full cycle (~40 days for me), and the middle of the cycle is typically the worse.  I got the same amount of headaches as my prior cycles, but the severity was down based on reading my notes from prior cycles (pain scale of 1 to 10).  I believe my current cycle is finished, but I can only truly determine that after having alcohol.  I always wait a couple of extra weeks just in case the cycle isn't over.  CHfather, thanks for the info / tips.  I hope everyone is hanging in there!!!!

[EggMan]

Before getting a neurologist, I was mistakenly prescribed 360 mg of Verapamil for a year for episodic cluster headaches. Just comparing pre to post Verapamil, I can say I didn’t notice a difference and obviously being on it and staying on it didn’t prevent anything. Just as frequent, just as intense. I also started D3 regimen after start of cycle.  After 3 weeks I only noticed a lot of indigestion and light headedness, but I didn’t get any bloodwork done to see if levels were low. 

Usually I continue taking whatever combination I’m on through a cycle; for fear of things getting worse. 
Oxygen (either prescribed or welding) and sumatriptan injections are my lifelines.  I’m going to add Benadryl to my list of preventatives though.

 

[jon019]

@EggMan

Before getting a neurologist, I was mistakenly prescribed 360 mg of Verapamil for a year for episodic cluster headaches.

...that's not necessarily a mistake..... just a little lower than most find effective...add in O2 and triptans and it's pretty standard practice (with maybe a steroid taper/IV to break/interrupt a cycle)....anything below 480 mg/dy and extended release were worthless to me..... but depending on cycle 480-1040/dy was the only prevent med that ever worked for me (both ECH and CCH). those familiar with treating CH are aware of the need to go high dosage (it scares most PCP's)....note that heart rhythm must be monitored...

Usually I continue taking whatever combination I’m on through a cycle; for fear of things getting worse. 

.....that's good...once a treatment protocol is agreed on with your provider it is pointless not to give it a fair chance....of course, common sense should prevail  should side effects become a problem.....tho it should be noted that side effects frequently subside with continued use....

Oxygen (either prescribed or welding) and sumatriptan injections are my lifelines.  

......and nice to have on hand for any breakthroughs post D3 or alternatives....one of my favorite sights in life is a DUSTY O2 tank.....

I’m going to add Benadryl to my list of preventatives though.

....as needed to deal with allergy mediated hits or sleep issues, I hope....not an automatic prevent protocol...

Edited July 16, 2020 by jon019