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        Cluster Headache Help and Support >> Getting to Know Ya >> Hi all about time 
        
(Message started by: nznigel on Mar 2^nd, 2008, 6:35pm)

Title: Hi all about time
Post by nznigel on Mar 2^nd, 2008, 6:35pm

well after watching and reading this marvelous site for the last year decided it was time to post .
so far its been 6 yrs of dancing with the devil >:(using tilcatol etc lately I read about red bull and o2 they seem to knock it back quite well,
I do have to admit that the drs over here do seem to be on to it, two visits one to my dr and 1 to the specialist and an mri scan is all it took
for a diagnosis.
my latest concern is numbness down the left side of my face after every hit its slowly going further and lasting longer everytime does this happen to others??

Title: Re: Hi all about time
Post by Superdave on Mar 2^nd, 2008, 6:54pm

Welcome nznigel
So nice to see another new comer,

I don't recall specific times where I've experianced numbness in any noticable capcity, but its hard to say with all the banging of my head on the wall, hair pulling and ice packs.

I'm sure you'll get some answers here.

Title: Re: Hi all about time
Post by coach_bill on Mar 2^nd, 2008, 8:05pm

welcome, i didnt get tingle on the face, but when i was doing my kip 9s i would feel it all the way down to my upper teeth, felt like the worst, and after each hit would fade i would feel some "tingle or numbness" in my mouth, mostly on the roof and upper teeth.? hope that info helps, i found out this last cluster that the beast does like to come up with new tricks, feel better soon. coach bill.

Title: Re: Hi all about time
Post by Bob_Johnson on Mar 2^nd, 2008, 9:01pm

All of the distinctive features/symptoms of CH arise because a common nerve pathway in our head links the affected sites. Variation over time is common for may people, often taking several years before settling down to a more or less fixed picture.

Re. docs: All too common that we know more than our docs. If you are blessed with a good headache specialist--what can one say! Much of the time we try and find a doc who is willing to learn from the patient; who will accept medical literature re. dianosis and treatment--one of the major reasons we try and post medical materials which docs will recognize and accept as legit.

Just two items which you can print and give to our doc as a tool to open discussion of treatment options:

HERE ARE TWO MAJOR DOCUMENTS WITH RECOMMENDED TREATMENTS FOR CLUSTER HEADACHE, ONE FROM A U.S. PHYSICIAN, THE SECOND FROM EUROPE.
_________________________________________
http://www.plainboard.com/ch/chtherapy.pdf
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:
http://www.efns.org/files/guideline_49.pdf
(Thanks to "cluster" for link.)

Title: Re: Hi all about time
Post by Guiseppi on Mar 2^nd, 2008, 10:11pm

I've never experienced the numbness thing, but have seen several people post about similar "numbness."

That being said, wellome to the board! ;) Glad you decided to jump on board. Congrats on finding a good doc so quiclky, a stroke of luck to say the least!!

Guiseppi

Title: Re: Hi all about time
Post by AussieBrian on Mar 3^rd, 2008, 12:44am

And a big g'day from over the ditch. Sorry you needed to come looking for us but here we are, large as life just better looking. Good to know you're happy with your vet and neuro because I've got to tell you that really is a battle fought and won.

As to O2, this is a link put together by our good friend Honest Barry shortly after his release.

http://mushys.com/kiwi

It lists all the gear you need from an Aussie perspective but I believe it's the same as yours. One of the pictures shows the strap still attached to the mask but so long as you remove the strap you'll be fine. (He may send you a PM asking for beer but disregard it. More about that later.)

Another important issue to consider is the Oz-wide pandemic of CH that occurs after each win by those hateful All Blacks over our beloved Wallabies. A rare event, I know, and we don't hold personally responsible but just something to bear in mind.

Cheers, beers and here's to the Anzacs,

Brian.