First episode with verapamil

[Malte]

Hi All,

I just recently found this forum and I'm hoping to get some additional information/advice. Difficult to find someone to talk about this...

About myself, I'm 29 and suffering from episodic CH for about 5 years now. I'm currently in my 4th episode/cycle. The ones before took between 3-4 weeks with 1-3 attacks every day or every other day. I'm always equipped with Imigran nasal and Solmitriptan pills... Imigran always works perfect and just takes around 15min to kick in. Trying to take it only when it gets really bad tho. I'm living in Japan and oxygen seems to be impossible to get. Not really taking the pills, just always get them...

This is now the first time to also take verapamil (it says vasolan, but should be the same). I started with 3 times a day 80mg and the headache was gone after a couple of days, not even a shadow. The side effects were pretty strong and I got a bit too excited, so I stopped taking them. A couple of days later the headaches were back. Now I'm taking only 120mg a day and that still seems to work with much less side effects (mildly dizzy, different headache, exhaustion). Better that than getting another cluster... My experience with verapamil is however different to what I have read here or in other forums. Anyone here who got similar good results with only 120mg a day and already after a few days? I read that it takes 1-2 weeks to start working... And does it have any impact on the duration of a cycle? The current one started more than 3 weeks ago and the only real attacks I had were on the last 2 Sundays, both from 9-11 pm (used Imigran only on the first one, last Sunday was "ok" without...). So it should be over soon, at least according to the previous ones.

Thanks for any reply and I hope everyone is doing fine out there!

[spiny]

Hi Malte!

 

Verapamil lowers your blood pressure. If yours is naturally low, dizziness and exhaustion can be experienced as side effects.

 

I could only take 240mg because my resting BP was 80/60 at night. That was with the extended release version. Went to the short acting version to mitigate the low BP. Found out that the short acting works better for us anyway.

 

Many can take a much higher dose with no issues. Initially, it worked for me within a week. It never shortened a cycle.

 

ATB

[Pebblesthecorgi]

Generally your dose is very low but if it works it works.  My experience is there is no such thing as a placebo effect with clusters.  Your young age and naivete to the med may allow a low dose to work.  Verapamil is a calcium channel blocker but is not the best at lowering BP in hypertensives it can also lower peak heart rate.  Some folks are sensitive to it but generally speaking your body will adjust and your exercise tolerance will return on the med.  Constipation is another common dose related side effect.  I'd pursue the search for O2 Japan is a pretty medically sophisticated country and oxygen is commonly used in medicine, its getting the prescription that may be a challenge depending on your access to health care.  A university medical center might be your best bet.    

[CHfather]

>>>spiny said:

I could only take 240mg because my resting BP was 80/60 at night.<<<

 

spiny, do you mean that your BP was "normally" 80/60 (before you took the verap), or that the verap lowered it to 80/60?  I ask because my daughter's normal BP is about 80/60, and she has been told that therefore she can't take verap.

[spiny]

CHF,

 

It is normally 100/75. The Verap. lowered it to 80/60. That is why I could not tolerate a higher dose when the 240mg stopped working.

 Verap. could be bad for her even at low doses. Glad her doctor took that into consideration!!

[CHfather]

Thanks, spiny.

[Grumpytom23]

I began on 240mg verapamil over a year ago that worked some, like you I went off and the CH came back. I then went up to 360mg once a day and I don't know if it was that but my CH's went dormant for over a year until this past week. Just started getting them again so the search continues