Hi CH Community,

I've been a cluster headache sufferer for about 12 years now and was diagnosed about 3 years ago.  Thanks to this community I was able to diagnose my-self after years of thinking the beast was a sinus headache.  After understanding what these are, I was able to go to a neurologist for a proper diagnosis and the right treatment.

Now I'm smack dab @ the peak of the cycle @ wk 4 after a 3 year hiatus.  I Have a huge tank of O2 which I use primarily to abort the cycle and have injection/nasal sprays just as backups in case i can't take the pain.  I've only used the spray once (which worked), but going to try to avoid the pharmas if i can.  The doc also put me on a dexamethasone taper about 10 days ago which i'm off of now thank god.  That stuff reduced the headache frequency but I felt like I had a just been on a 4 week vegas bender.  Teeth were numb, mind was foggy, and felt like crap.  Don't recommend it.

Mentally, I'm handling this cycle as well as one can for waking up 2x @ night and getting pulled out of movies mid afternoon with an 8kip.      

However, there is one thing making me real nervous.  I have a vacation with my wife planned in 2 weeks.  Its booked on miles so thankfully I should be able to adjust the dates if needed, but seriously hoping the beast goes and finds a hiding hole before my vacation comes up. 

I'm not on Verapamil now & don't know if I should be (prescribed, but haven't started it).  Will Verapamil help break a cycle? If I do go on vacation will it reduce the pain frequency enough where the beast won't bother me?  Also will Verapamil cut down on daytime attacks?  Had my first daytime yesterday in a movie, and concerned that I could get a big headache in the middle of an important meeting next week.    Frankly, I'd prefer to try to avoid the drugs and just use 02 for treatment, but will use Verapamil if necessary.

Another think I was wondering about were mushrooms (yes, i realize i just said I want to avoid drugs:)).  Any success? I tried a 1/2 truffle that I got from a friend yesterday, but it didn't really do anything.  It staved off the headaches from 5pm-3am, but could tell that what I ate didn't have the slightest bit of potency.  Its kind of embarrassing bugging friends and acquaintances for these things, but I'll do what I need to do at this point.

One last question about the d3 treatment.  Talked to my primary doc and he thought 10000 IUI was an absurd amount and thought that I could potentially poison myself.   He recommended 2000 IUI daily.  Any thoughts on this?

Again, thanks to all out there who've contributed to this site. Not sure what I would have done if I continued thinking these were sinus headaches. 

Hey Droopy,

I have been taking 10,000 iu D3 per day for the last year, as has my wife, who is chronically anemic. My Brother takes 20,000 iu per day, as he is suffering from cancer.

Mike is right, your doctor is incorrect on the dosage and it does help 80% of those taking it. I say "help" but I mean life changing, (for me anyway).

Send a private message (PM) to Batch. He's the Guru.

Keep well,

Peter.

Thanks all.  Truly appreciate your help on this issue.  I'll start on the D3 regiment and also give my doctor a call to get me scheduled for a blood test. 

As far as Verapamil goes, my doctor prescribed me, 240mg daily, which according to most of you is much too low.  Should I just up it on my own?  Is there any risks with the Verapamil turning my episodic clusters into chronic? I've been reading past boards and some people have made that claim.

Also wondering if its ok to start taking the Verapamil without an EKG.  I had an EKG years ago and I was fine, but not in recent years.  Surprised my doc even prescribed these to me without one.  Actually, not super surprised since this new doc I have seems pretty disinterested in his patients in general.

Mike NZ wrote on May 8^th, 2016 at 8:06pm:



EVERY bit of what Mike said!.............spot on!

...I'll add that years ago there was ongoing discussion here about verapamil possibly
increasing cycle length and/or precipitating hits. I had suspicions myself...and I used to
use 480-1020 mg/dy depending on cycle....but the topic died without revisit so probably
minimal or unlikely for most.  So...I agree...it is a very effective prevent
for many folks and worth a try if other methods don't work..

Best

Jon