Need some help!

[Muscles]

 

Hi all,

 

Firstly sorry for my first long post!

This is my third episode, my very first I had no idea what they were and they eventually disappeared after a lot of pain. The second time I was prescribed 160mg of verapamil SR and that worked well and only took about 3 days before seeing results. I ended up taking it for 3 weeks. EKG performed before taking verapamil.

now most recently, I’m about 2 weeks in my episode and was again prescribed verapamil and sumatriptan nasal. EKG performed before taking verapamil. After taking verapamil SR for 2 days at 90mg (9am dose) every day (on the second day I used the sumatriptan 20mg spray at 12pm) I ended up in the Emergency room (around 11pm) with Brady-arrhythmia and a first degree AV block... it was actually my Garmin watch that detected the slow pulse rate although it was very erratic, bouncing from 30 to 60bpm, which was confirmed when I was in the ER. I was advised to stop taking verapamil which I did. No headaches for 4 days after and important to note my heart rate has been normal since.

i had a headache yesterday (1pm) and used the triptan, upon checking my heart rate when sleeping, I noticed it dropped to 37bpm again (approx 15hours later)  I’m now thinking the issue may have been the triptan all along and not the verapamil. I’ve now voluntarily stopped the triptan. Does anyone know if this is a normal side effect from the triptans? 

I would love to try verapamil again as I now have no means to stop this... my neuro mentioned topiramate but that just sounds scary. I need to be switched on at work.

In a positive note, luckily for me it only seems to be a daily occurance. 

Ive started batch’s regime and about 1 week in. Scarily my blood tests have confirmed I’m deficient (70nmol) according to batches graph, scary how accurate it was. I’m dosing at 20k IU with 1 day at 70k IU per week for the first 2 weeks. I’ll probably add the Vitamin C and BENADRYL tomorrow. Haven’t seen much difference so far but fingers crossed. 

I’m not normally one to ever cry but sometimes the beast just beats me to a pulp.

[Pebblesthecorgi]

Sorry you have had to join the Cluster community.  Welcome and thanks for sharing your story.  First remember those who frequent this forum are a diverse group with broad personal experience trying to manage the beast.  Some folks have a broader perspective while others hold strongly held opinions.  Ultimately you have to make your own choices and do what is best for you.  Present thoughts are included in this caveat.  The purpose of the EKG monitoring of verapamil is to identify conduction disturbances that the drug could contribute to or to screen folks for abnormal heart rhythms which the drug could worsen.  First degree heart block is general a benign condition and alone generally does not result in a slow heart rate (bradycardia) .   Most verapamil conduction disturbances are related to higher doses more than 240 mg a day.  Many use 960-1200 mg a day if they can stand the constipation.  There is very little data or reports of cardiac rhythm disturbances with triptans.  In rare cases there may be some compromise to the cardiac muscle because of blood vessel constriction.  My suggestion would be to have a proper cardiac evaluation to look a baseline function and not simply assume the medications are the culprit.  Your findings may be from an underlying predisposition.  Read the resources on the site.  Consider trying oxygen,  Give D3 a try.  Hold off on considering busting until you have a definitive answer regarding your cardiac function. 

[Muscles]

Thanks for your reply and thanks for making it so informative.

i think you’re right and based on my history with verapamil I don’t think that may have been the cause. 

I think I’ll be seeing a cardiologist to determine if I have any pre existing conditions (although my GP did mention it was normal prior to verapamil), probably best to see a specialist.

 

thanks again