I just started using a test device given to me by my Doctor. The device gives a electric pulse to the nerve base in the right side of the neck. The device "GammaCore" seems to cut the severity of the attacks if you start treatment when you first notice the onset of the CH. I suffer from 5 to 10 CH a night lasting 30 min to an hour. I have done 2 hospital stays were I was treated with DHE and Histamine, on or tried every drug imaginable O2 and imitrex are not working anymore. This device has taken the CH down to 3 to 4 and lasting 5 to 10 min of mild pain. After the treatment with the device I go to O2 for a minute or 2 and it stops the attack fast.  I have only been using it for a few day's now and seems to be working. Finally able to sleep a few hours in between CH. The device is made by ElectroCore and its approved in Germany and they are trying to get FDA approval in the US. Has anyone used this or heard of it?

   Just guessin but gammacore looks to me to just be a jazzed up tens unit. 

                   Potter

Yeah Potter - sounds like that to me too. Had one of those (well I still do).. worked for a little while and then it quit (like about everything else)

Steven.. have you tried the D3 regimen? If not .. you might consider that. But read Batch's  or ask him how to do it right. It's done wonders for a lot of us who've gotten on it.

And you might take Melatonin at night before going to bed. This has "almost" eliminated my night hits for years. BUT it may take a while to begin to work so don't give up after a night or two and say it doesn't work. Give it a couple of weeks.

and if that electo shock machine works for you - by all means keep using it.. Anything to get rid of the pain.

:-*

BarbaraD wrote on Nov 27^th, 2013 at 8:09am:

Yeah Potter - sounds like that to me too. Had one of those (well I still do).. worked for a little while and then it quit (like about everything else) Steven.. have you tried the D3 regimen? If not .. you might consider that. But read Batch's  or ask him how to do it right. It's done wonders for a lot of us who've gotten on it. And you might take Melatonin at night before going to bed. This has "almost" eliminated my night hits for years. BUT it may take a while to begin to work so don't give up after a night or two and say it doesn't work. Give it a couple of weeks. and if that electo shock machine works for you - by all means keep using it.. Anything to get rid of the pain. :-*

Can not take the D3 it reacts with the verapamil I'm on. Yes I take Melatonin. The electric device worked nicely for the first few day's I was using it, BUT last night nothing would stop pain.  Guess I had my hopes up to high thought this was the magic bullet for my CH. I'm going to keep trying it I do not want to do another 10 day hospital stay to stop this cycle. LOL cycle, 6 months and counting.
When will it end!

Damn Steve, it stings so much every time beasty breaks through another tool. :'( Hoping you catch a break soon.

Joe

steveng wrote on Nov 27^th, 2013 at 10:30am:

Can not take the D3 it reacts with the verapamil I'm on.

Can you provide more details of this interaction?

I've been looking for details of it via Google Scholar (START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE) but have not spotted anything obvious.

Just a thought, after taking verapamil, you have to have
a seven hour break before taking the vitamin D3 Regime,
taken with your main meal of the day.

Hoppy.

The Gamma Core device was presented and discussed at the CB conference in Sept.  Some have had very good success with it.  It works differently than a TENS unit.  Not sure of the exact workings, other than it is similar to an ONSI device, except external and working on the Vagus nerve rather than the Occipital.  If I had not been having the measure of success I've been having with D3 I'd consider participating in the trial, but I'm afraid to forgo the D3 for fear it wouldn't work again if I started it back up, much like Kudzu did, and other things.

Jerry

StevenG,
If you are on verapamil and still getting hits, is it worth taking?  Have you asked your doc if you can up your dose?  How long have you been on it?  I took Verapamil while still ramping up my D3 regiment.  The problem is not D3 and the Verapamil - its the calcium - and I was able to space out my Calcium does by 8-12 hours of my Verapamil dose to lessen any issues.  Once my D3 levels got over 80 ng/ml I was able to stop my Verapamil and really have not had to look back since.

The device info manual: (includes picture of the device)

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

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

TeeJ2379 wrote on Nov 29^th, 2013 at 8:11pm:

StevenG, If you are on verapamil and still getting hits, is it worth taking?  Have you asked your doc if you can up your dose?  How long have you been on it?  I took Verapamil while still ramping up my D3 regiment.  The problem is not D3 and the Verapamil - its the calcium - and I was able to space out my Calcium does by 8-12 hours of my Verapamil dose to lessen any issues.  Once my D3 levels got over 80 ng/ml I was able to stop my Verapamil and really have not had to look back since.

Been on Verapamil for 5 plus years. Higher dose when in cycle. If I forget a dose during cycle my nights are HELL. Going to see another Doc tonight and discuss the D3 regiment. When I tried it before it gave me a dull headache and shadows all day. Perhaps it was due to all the other meds I was on at the time. I keep reading about all the success stories on the D3 makes me jealous. I need to find something to stop this cycle other than a hospital stay.

Steveng:

Quote:

I do not want to do another 10 day hospital stay to stop this cycle. LOL cycle, 6 months and counting. When will it end!

What treatment(s) do you do while in the hospital for 10 days? Just curious

I4B
Edited to add: 13 years, 2 months CHRONIC and counting. 12 years episodic before that.

Imitrex4Breakfast wrote on Dec 4^th, 2013 at 8:40am:

Steveng: Quote: I do not want to do another 10 day hospital stay to stop this cycle. LOL cycle, 6 months and counting. When will it end! What treatment(s) do you do while in the hospital for 10 days? Just curious I4B Edited to add: 13 years, 2 months CHRONIC and counting. 12 years episodic before that.

First day injections of steroids and 1 I.V. bag of histamine per day and 5 I.V. bags of DHE (Dihydroergotamine) spread throughout the 10 day's. I'v had this treatment twice. First time no CH for almost a year, second treatment only lasted 8 months before CH returned. Both time CH cycle stopped in 3 day's

"ONLY lasted 8 months" ?? Sheet ! I'd be going EVERY 8 months if that's all it took. BTW, That's a very odd way of doing DHE  :-? , unless you've had some previous serious side effects or intolerance to it. I'm wondering how much total DHE you get in those 5 I.V. bags spread out over 10 days. Any idea? I can take a 1mg IM or I.V. injection every 12 hours ... no need for it to be diluted in an I.V. bag and spread out over such a long period of time. (But it's not something you'd want to do everyday for years)

I4B

And are you getting this Histamine in the USA somewhere other than the Diamond Headache Clinic ?? (That's not their usual protocol for histamine infusions)

Yes through the Diamond clinic. Have you been to them?
I do not remember the dosage of DHE, I think it was 9 mil over 8 hours. I have had the injections, but they only last a day.

Went to a different neurologist last night, nice long consultation with him. After reviewing my past and present medication history we talked about my options. We decided on trying a occipital nerve block.
Well this worked preventing the CH moving into my temple but did not prevent it from ripping through my eye. I can tell you the eye pain was just as bad as a full blown CH. On a good note only had the 1 that last a little over an hour. This was only the first night we'll see how the next few day's goes.

Back when I went to the hospital for DHE - they put an IV in, but just injected the DHE every 8 hours for about three days until the headache broke. (Not over 10 doses usually).

Haven't been to the hospital in years, but keep the DHE injections and when things get really bad start injections every 8 hours .. usually get some relief that way for a while. But it's a last resort for me cause the DHE wipes me out totally..

But since Oct 21st I've been on the D3 regime and have NOT been hit. This is the longest I've one since July of 1997 so I'm really pushing that right now.

I've had a couple of ear cramps (the start of a good one) but some heat applied to the old ear has stopped that in its tracks and I'm happy as a clam in chowder.

I'm still taking 400mg of Zonagran at night, but it wasn't working that well before the D3 so...

My neuro has been thru hell with me for the last 15-20 years (can't even remember how long we've been together) and right now he's doing a happy dance about the D3 and is putting some of his other CH patients on it.

Are you doing O2? (I might have missed that). If you get on a high flow at the beginning of the CH, this will sometimes stop it in it's tracks. Read the o2 info on the left about that.

And Melatonin at night (my maintenance dose is 10 mg - recommended by my neuro).

Keep us informed about how you're doing..  :-*

I too am in the GammaCore study. No real success here, I was told it is showing little help for Chronics.

Don

Gamma took the edge of for awhile but not anymore. On D3 for 3 weeks - nothing same cycle no change, Imitrex last 1 to 2 hours then right back to 7's every 2 hours. I go through a bottle of O2 each night, helps but still awake all night. Went in for IV of DHE. Wow 2 day's no CH, by day 3 right back to same cycle. Over X-mass they hit me hard would not stop. So - back in the hospital now. Day 1 first bag of DHE done first bag of histamine hanging. Fingers and toes crossed - need CH to stop, need to sleep.