Hello to all of you. I've been around here for a while, as a guest at first, just reading the info on this site. There sure is a whole lot! It really helped me, after months of being misdiagnosed, and taking drugs that didn't help. Thank you all for that! I also realize that with 'just' months of misdiagnosis I can call myself lucky, because way too many people around here got un/misdiagnosed for years. For me, those months already seemed like an eternity! And I still have to see a neuro to make sure it is CH I have, but for as far as I can tell it is.

I'm from Holland, 26 years old, and just a few weeks ago a GP diagnosed me as a possible clusterhead. He referred me to a neurologist, who specialises in headaches. I'll be seeing him this week (thanks to a call to his receptionist, otherwise I would've had to wait for another month).

I'm currently taking Imitrex shots to abort the really nasty ones, and I loaded my fridge with energy drinks. I don't know if they work yet, but I thought it was worth a shot. The GP who diagnosed me told me to talk to the neuro about oxygen. This seems to be a good alternative for the Imitrex shots as I also read on this site, for most of you can abort their attacks with it really fast. If it is CH I have, I sure hope the neuro will set me up with it.

Well that's it for now, I just wanted to introduce myself. I'm going to try and get some sleep before I'm off to work. I've been up almost all night after a big hit, couldn't sleep after that as so many other nights.

Lot    [smiley=wave.gif]

Hi Lottie and welcome.

I sure hope you do get diagnosed rather quickly, which shouldn't be a real problem in the Netherlands. Do the clusterquiz in the menu on the left and take the results to your appointment.
It should also be very helpful to yourself in seeing if they really seem like CH.
But a diagnosis by a specialist is so important in eliminating any more malignant stuff.

The energy drinks, make sure they contain both taurine and caffein. I'd suggest the Euroshopper brand from Albert Heyn supermarket as they work well for lesser hits and are not very expensive.

Hope you have some pf time soon, and a quick enough diagnosis.



All the best from another place in the Netherlands, Pascal.

Hi Lottie and welcome. Sounds like you are on the right track for getting a proper diagnose. Getting a specialist who understands CH's is the biggest battle in itself.

Print off the o2 info to your left in yellow and take it to your neuro when you see him/her. o2 is used by most to abort CH's, but you need the right delivery system and get on it at the very first sign of an on-coming hit.

100% o2 with at least a 15 lpm regulator and a non-rebreather mask, no outside air what so ever! Hyperventilate the o2 and it is most important to get on it at the very first sign of an on-comingt hit. I can stop a hit within minutes doing this method.

Keep reading all you can and hope your meeting with the neuro goes well for you. Let us know.

Nice to meet you.
  Barry :)

I see Dutch people.   ;)

Just kidding.  Welcome, Lottie.

Sounds as if you're taking all the right steps to get control over this thing, and I'm confident that between your regular doctor and the neurologist that you'll find effective treatment.

The best thing you can do at this point is to read up on the options available.  You may wish to start with this link:

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

...for an excellent discussion of standard treatments for cluster headache.

Again, welcome.  Hope you enjoy getting to know some of the folks here as well.  You're not alone with it anymore.

Best wishes,

George

Consider printing the European treatments list and use it as a tool to guide your discussion with the new doctor. Helps to level the ground to have something concrete like this which the doc can see as having authority.

HERE ARE TWO MAJOR DOCUMENTS WITH RECOMMENDED TREATMENTS FOR CLUSTER HEADACHE, ONE FROM A U.S. PHYSICIAN, THE SECOND FROM EUROPE.
_________________________________________
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
Here is a link to read and print and take to your doctor.  It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S.  (2002. Rozen)
================
Treatment guidelines from Europe

------
A. May, M. Leone, J. Áfra, M. Linde, P. S. Sándor, S. Evers, P. J. Goadsby:
EFNS guidelines on the treatment of cluster headache and other
trigeminalautonomic cephalalgias.
European Journal of Neurology. 2006; 13: 1066–1077.

Download free full text:
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
(Thanks to "cluster" for link.)

Thanks for the replies.

I took the cluster quiz, turned out I may have CH. And thanks for the energy drink tip, it's cheaper than the one I was trying now (not even Red Bull).

Bob, the European treatments list link sounds interesting. Is there much difference with the American treatment for CH though?? Anyway, I'll read it before I see the neuro.

PFDAN to all of you!