I have burning pain from behind my eye that goes to my teeth. Used to last 20 min. now 1 and a half hours. Sometimes daily more than once, sometimes  every 2 to 3 days it hits. Ever since 1988, sometimes hits for 4 months. Sometimes gone for a year. Thought my eye and teeth should be ripped out. Feels like it has changed lately and I'm afraid it won't stop. {since my neck surgery, which also messed and made worse the Grave's disease I've dealt with since 2002.} It is a burning nerve pain in the face-not a headache. Doesn't compare with a headache. First Drs. thought trigeminal neuralgia, then CAT scan they said facial neuralgia, then cluster headaches, now they want to add TMJ. How could anyone put a title of headache on this burning pain??? I've even had a migraine headache on occasion-it doesn't compare to this. It's a whole different pain. I have a medical questionaire to fill out that asks what causes your headaches. How can I know the answer if neurologist doesn't? How can any of us get help if they have reduced the name of it to a headache???  They have to change the name  because everyone has had a headache and the word cluster in front of it will not draw enough attention for the research and cure that we need.

DL.... welcome to Clusterville... and we've ALL asked that question at one time or another. And we've had someone say, "Oh yeah, I had one of those one time..."  :)

Go back and read the archives... we've come up with some doozies insofar as names go for our "headaches", but so far they're still being called Ch by the medical society. And so far they still don't know what to do for us since we all react differently.

One thing that works for MOST of us is O2 at high flow rates. If you're not on that, I'd suggest you read the info on the left and get on it. (with the RIGHT mask). About 70% of us around here SWEAR by it. My abort time with it is about 3-5 minutes (without drugs).

And then there's the prevents... we all react differently to them... lithium, verap, topamax and a few others work for a lot of us, but that's trial and error with each of us.

Red Bull (or an energy drink with caffeine and at least 1000mg of taurine) at the onset of a hit, chugged will sometimes abort a hit (for a lot of us). Melatonin at night (3-15mg) before bedtime will sometimes (for a lot of us) stop the nightime hits (gets us thru the REM sleep where the CH hits).

But remember - we're ALL different and we ALL react differently to things. That's the BIG problem with CH  - there's no UNIVERSAL catch all for everyone.

Having a good neuro who you can talk to and who will listen to you is a big plus. Sometimes you have to go thru several before you find the "right" one (I went thru about a dozen before I hit on a "good" one, but have been with him about 15 years now and he's wonderful).

This site is the best for asking questions, venting and getting support. We UNDERSTAND where you're coming from and have all been right where you are.

REad READ READ.... there's a world of information here. And again welcome to Clusterville...

Hugs BD :-*

I agree with your suggestion for the name change.  But I dont' think it will happen anytime soon.  PF days to ya

Pick one (from the Wikipedia entry on Cluster Headache):

Quote:

History The first complete description of cluster headache was given by the London neurologist Wilfred Harris in 1926. He named the disease Migrainous neuralgia. Cluster headaches have been called by several other names in the past including Erythroprosopalgia of Bing, Ciliary neuralgia, Erythromelagia of the head, Horton's headache (named after Bayard T. Horton, an American neurologist), Histaminic cephalalgia, Petrosal neuralgia, sphenopalatine neuralgia, Vidian neuralgia, Sluder's neuralgia, and Hemicrania angioparalyticia.

I think this one - Hemicrania angioparalyticia - best describes Joe in the years prior to O2.

Descriptively deficient can be the "ache" portion.  One can wake with muscles aching, bones seeming to ache, backaches from an old mattress, and from them young years of hangovers, "my hair hurts", still though finding the gumption to plod on until things feels better gradually through the day.  Aching all over from flu symptoms can make you feel really old.

There's basic headaches relieved from off-the-shelf remedies, which are most familiar.  Saying migraine headache, people are pretty aware of a long incapacitating effect.  Clusters are hard to identify with, how do you explain something like, "I broke my arm for two hours, but it's fine now", "I just got over delivering a baby an hour ago, where do you want to go for lunch?", "I was whapped in the temple with a ball peen hammer, I'll be late for work", "my eye was trying compress into a marble and leave my skull, Red Bull kinda helped though."  All not "aches."

People may tend to think it sounds exaggerated, and it isn't.    

:)



Quote:

I have a medical questionaire to fill out that asks what causes your headaches.

Then them figure it out.   



Thanks for the alternatives, Brew.

I'm partial to Erythroprosopalgia of Bing.  I think it would have a nice bing to it, if I could pronounce it. 

Best,

George

If someone asks me I say I have a rare neurological condition in my brain that causes intense pain.   I rarely use the word headache except around here.


Quote:

questionaire to fill out that asks what causes your headaches.

They may be asking what triggers your headache.  If that isn't what they are referring to..put down, A deformed hypothalmus gland.