Hello to all:
I just registered. mostly because I feel all alone my wife doesn't understand and questions me. My VA doctor is well meaning but I provide him treatment info that I research. all the doctors I have seen over the last six years just push NARCS at me (I am NARC free now x1 yr)or antidepressants. none of them even know what cluster headaches even are really. I finally found and got the o2 treatment (thank goodness).
  My HA seem to last for weeks and are around all day but freak out at the same times each day. nothing helps sitting standing,walking etc. such excruciating pain. my left temple and eye feel like someone shoving a spike in it and my left eye gets weak .I have to this all alone because I have little support.
I don't understand the difference between episodiac and the other all I know is I hurt and know one understands me. I get grouped in with (oh he has migraines wink-wink)
I am probaly not telling any of you all anything new. I am just hoping I can talk to someone who will hear me

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You are in the right place for cluster headaches.

Narcotics tend to cause that all day feeling or strong shadows of full on attacks. Some antidepressants work well for CH and others cause the lingering headache.

Your no longer alone if its CH you have.

Welcome.

I have had one dr who treated me for a year till I had to move tell me it was ch and convinced the veterens hospital DR and they treat me for it now. I have had all the test poked and prodded. things shoved up my nose stapped in.  mri,xray,ct, blah blah blah..
topamax and oxygen and zomig are the most help but some still come.  I remember having some HAs in my 20s but no more till I turned about 40.
anyway thankyou for the reply I have gotten to the point that I don't talk about it to anyone, but feel I am probably safe here. I am 46 have a federal job, play bass guitar(pitfully)christian,married,love music and creative writing.. I live in Idaho where knowledgable DRs aren't readibly available.
sorry for going on Ill shut up now. I have so much pinned up inside.
karl

If your location is barrier to finding a good headche doc, the next best is to have a doctor who is open to being informed by you. We can lead you to solid medical information which you can offer a doc. If their ego will allow, they will accept and use the material to your benefit.
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Start exploring all the buttons (left) and the internal links. This will take time but you need some basic education for yourself NOW.
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Would recommend either book. The first one to give to a doc, the second for you.

MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $50 at Amazon.Com.  It covers all types of headache and is primarily focused on medications. While the two chapters on CH total 42-pages, the actual relevant material is longer because of multiple references to material in chapters on migraine, reflecting the overlap in drugs used to treat. I'd suggest reading the chapters on migraine for three reasons: he makes references to CH & medications which are not in the index; there are "clinical pearls" about how to approach the treatment of headache; and, you gain better perspective on the nature of headache, in general, and the complexities of treatment (which need to be considered when we create expectations about what is possible). Finally, women will appreciate & benefit from his running information on hormones/menstrual cycles as they affect headache. Chapter on headache following head trauma, also. Obviously, I'm impressed with Robbins' work (even if the book needs the touch of a good editor!) (Somewhat longer review/content statement at 3/22/00, "Good book....")

HEADACHE HELP, Revised edition, 2000; Lawrence Robbins, M.D., Houghton Mifflin, $15. Written for a nonprofessional audience, it contains almost all the material in the preceding volume but it's much easier reading. Highly recommended.
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Print out the list of treatments in these two links and offer to any doctor you approach. How they respond to this material will give you some idea of whether they can/will work with you.

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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)
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Michigan Headache & Neurological Institute for another list of treatments and other articles:

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Stay in touch but get stated reading!!
 

I will get right on that, I am blessed with a Doc that will look at options with me.
thank you so much!!!!
karl

Hi Karl,

Welcome from a fellow Idahoan.

Granted, headache specialists in Idaho are pretty scarce on the ground.  Haven't been to one in a long time, so I don't think I'll be of much help there.

Good to hear that your doctors at the VA are pursuing some worthwhile treatments for your CH.  As you've discovered, narcotics are usually of very little use in treating this condition.  Especially glad to hear that you're getting oxygen.  15 liters per minute with a non-rebreather mask is the most effective approach--the nasal cannulae and lower flows are generally ineffective.  You've gotten some sound advice from some good folks thusfar, so I won't add much.  Just wanted to say "hello", mostly, and again--welcome.

Feel free to vent, or ask any questions you'd like.  Most of us here aren't doctors, but we've gotten to be expert patients.   ;)

All the best,

George  

We know and understand. Welcome brother headbanger.
all the best
thebb

You've been given some great advice so I'll just say welcome, glad you found us, and NO!!! You're no longer alone. Glad you found your second home brudder!

Guiseppi

thanks you everyone, George from Boise you know what its like to find DRs but yes the VA is at least trying.  
I just wish the pain would stop ,  i hate living around wondering when the next attack will be, down on my knees praying so hard that I just ramble, cursing then apologizing. crying from the pain then from being alone cause no one around me understands. pounding on my head and listening to loud rock music just to distract me (none of it really works). but maybe I can vent a little here thanks again. I am studying more. I can't wait till my next appt. George feel free to email if you like.
karl

Check your e-mail, Karl.   :)  Nice to hear from you.

Best wishes,

George

Hi Karl, be welcome!

Sorry to hear that your wife does not understand. Maybe you should send her here and have her read some of the stories, just so she sees you're not a little drama queen, so she sees there are others who suffer just as greatly as you do.

Furthermore: educate yourself here and make some new friends!

Painfree vibes comin' at ya from the Netherlands.

you all are so cool thanks, finally someone understands me and what i mean when I say oh crap its here again!!!!

Glad your in better spirits.
keep up the fight
thebb

Warm welcome, Karl! :)

Most of us have realized that our nearest and dearest do not understand what ch is all about and how it will affect us. Perhaps you can sit down with your wife on a PF moment and let her know what it's like for you and what you will need her to do - if there's something she can do. And yes, there is a place for supporters in here - she can talk to other supporters and get support herself.

Wishing you PF days,
Sanna

Welcome Karl,

Glad you found us! Below is a link to a listing of recommended Drs in you area. I ck'ed and ,just like George said.... pretty slim for ID. I live next door, in MT and there is a listing for a Dr not too far from you in MT. Not sure if you are willing to travel but may be worth the trip.

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Hope this helps and hope you find some relief soon.

Gina