hi all,
Ive been lucky this year, have been under the care(at last)
Of dr matharu in london.i have had 3 GON injections this year
tried more anti convulsives(pregabilin sodium vlpoaratr topirimax) this last 9 months.
Last three weeks have been amongst the worst in my life-depression,partner miscarried,losing house.
I really know why this ******  is called suicide headache.

Im waiting to be admitted to queens square clinic in london thurs/fri 15/16 .im going to be having a DHE infusion.
Im in for 5days.has anyone out there had an experience/any knowledge of this procedure.
Its something ive never heard of.

Hoping many PF days for all

Dave
for a 5

About 4 years ago I was in full blown intractable CH cycle. KIP 8+ every hour on the hour for 3 months at a time. Went in for a DHE infusion and a med switch. Lasted about 3 months until they came back. A year and a half ago they reached the same level of intractability. That's when I went up on verapamil (I'm at 640mg/day) and scored a demand flow regulator for my M tank, and coupled it up with Monster. Been chronic still but nothing like before. Good luck with this, and God bless. lance

Hi all,

Well, the infusion was great. 5 pain free days and nights(although it felt like an elephant sitting on my chest).

I returned home and precisely 24hours after the last infusion i had probably the worst attack ive ever had. Imigran didnt work for the first time ever.

72 hours later started methysergide.1 mg in the morning increasing dosage every 5 days to reach 4 mg 3 times a day.
Headaches every 2 hrs, imigran not really working O2 neither.
Went back to Queens square for multiple site Nerve block and was offered an emergency admission for intravenous lidocaine.


As i type this i am lying in a hospital bed on 60 ml IV Lidocaine.have been here since monday( my birthday!!!) and so far its had quite an effect. Reduced severity a lot and is starting to reduce frequency. IV lasts for 10 days then im on to mexillitine (?)

Anybody have any experience of this?

Me and my family went through hell while i was on methysergide, and id hate to go through something like that again.

Wishing pain free days to all,

Dave

"Intravenous lidocaine and mexiletine in the management of trigeminal autonomic cephalalgias."

Abstract: Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

First of all...methysergide, DHE45, and Imitrex should NOT be taken together as this may cause a cardiac event.

IV DHE45 infusions ... I've done as much or more than ANYONE on the planet and I currently give myself DHE45 IM injections at home (1mg every 12 hours)

They say this infusion can break a cluster cycle but it never broke it for me. I do benefit from it definately though and don't want to go without it.

A single 1mg dose of DHE45 can give me relief from attacks for as little as 10 hours to as much as 3-4 days ... but taking it every 12 USUALLY PREVENTS cluster attacks for me.

You gotta have a good strong heart to do this and you'll probably never find a doctor willing to prescribe DHE45 for home use as it is considered a hospital only med (the injections)

The pharmacutical co max dosage says no momre than 3mg a day and no more than 6mg per week ... but I do way more than that and have been for a couple of years now.

Good Luck !!

PS. Too much DHE45 can cut off the blood supply to your extremeties so if you're new to it, you should watch for whitening of the fingers, toes, and nose as this could cause serious damage if prolonged. (I've never been hurt by it though).

PS. I'm NOT a doctor and my statements are not to be taken as professional medical advice. I'm just a ChRoNiC cLuStErHeAd that's "...Been there and done that".

Brew wrote on Dec 27^th, 2011 at 7:55pm:


Good point. Thanks Brew

Hello,

You have got to look into Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or I know its seems far reaching, But it has really helped a lot of sufferers of CH.

Sounds like the DRs are going to whip you around like a rag doll, And really the only thing that's probably going to make it go away at this point is itself. Give it a look, at least you can say you have Researched all other options.

Hips then Hands...
Coach Bill..