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. 

Hi and welcome

You seem to be up to speed on CH abortives, however I'd strongly suggest that you also start on a preventive to cut down on how many CHs you actually get, especially as they are having an impact on your sleep and daytime activities.

With the vacation about 2 weeks ago, if you're going to give verapamil a try then since it takes about 10 days for a starting dose or a dose change to be become effective then you'll need to start it now. Most people need a dose of 360-480mg a day for it to be effective, but some go to around 1000mg a day.

Another option is using vitamin D3 which for some people can work quicker, although some take a while for it to kick in. Although this might be an option you'd like since you want to avoid "drugs". Batch will no doubt be in touch with D3 info.

Your GP is most likely out of touch with D3 dosing. I've been taking 10,000IU per day for several years, as have a lot of people on here, with 80+% benefiting.

With the holiday, I'd make sure you've got plenty of abortive supplies with you. The last thing you want to be doing is trying to navigate a foreign health system to get additional supplies, so take enough to last.

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.

Droopy,
Mike is right, a good few of us here take 10000iu D3/day, at the moment i'm taking 20000/day as I've been feeling a few shadows lately.
Batch says to start the regimen with 4 to 5 days at 50000iu D3/day to get your levels up quicker.
Because you're going away in 2 weeks on a trip and would prefer to not be bothered with CH pain, you could start straight away with 50000iu/day. but it is important that you also take the co-factors. they are: Magnesium 400mg, calcium 200 to 400mg, omega 3 fish oil 2000mg, vit K -see link below- 1/day, zinc 10mg, boron 1mg,

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

As i said take 50000iu D3/day for 5 days then drop to 20000iu/day for a week. By then you'll have had the honor to talk to Batch who will advise.
Should you do this, there's a good chance you'll be pain free -or nearly- by the time you go away with your wife  :)

All the best

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.

Droopy,

Never heard of Verapamil turning anyone chronic, but, I would not advise upping your dose without consulting with your Doc.

Verapamil reduces your blood pressure, so it's vital that your Doctor monitors that regularly.

Peter.

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. 

I've not heard of verapamil changing people from episodic to chronic. Although there will have been people who were on it and changed from episodic to chronic and no doubt the opposite too. But I'd not rule out verapamil on that basis.

You should only change verapamil dosage working with your doctor, don't do it yourself.

With verapamil there is a risk that the PR interval on an ECG will be affected, which is why people have regular ECGs when on the medication.

And if your doctor is "pretty disinterested in his patients in general" I'd be looking at changing doctors.

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

I've not heard of verapamil changing people from episodic to chronic. Although there will have been people who were on it and changed from episodic to chronic and no doubt the opposite too. But I'd not rule out verapamil on that basis. You should only change verapamil dosage working with your doctor, don't do it yourself. With verapamil there is a risk that the PR interval on an ECG will be affected, which is why people have regular ECGs when on the medication. And if your doctor is "pretty disinterested in his patients in general" I'd be looking at changing doctors.

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