It is 2:21 am in Seattle and I am up and trying to talk myself out of crying. I know it will just make it worse. I am a 26 year old female who got my first cluster headache two weeks after my daughter was born when I was 22. Four years I have had these excruciating headaches as I am now and I cant seem to go anything about it. Cold packs, hot packs, sleeping outside, downing coffee...even double clicking my own mouse....just to try to rid myself of them.I can literally imagine myself plunging a screwdriver into my temple right now. Ive been to the ER over two dozen times in the last four years, been to two nuerologists who only put me on experiemental drugs for schiztophrenia (they are guessing chemicals have someting to do with it?!?!) Doctors wont listen to me, every single one I've talked to has made me feel like an idiot. I feel so freakin helpless. all my family feels so bad, my boyfirned, my mother....they know they cant make the pain go away but all I want to do is sleep Without being afraid. I wish I had someone to talk to... I feel like I'm having a brain anyrism every single night. Excuse my spelling errors, I can hardly see straight....

First of all: Welcome to this site. You'll find lots of info and support here that will make dealing with the Beast (a petname we have for CH) easier.

Second: Find yourself a good neurologist, preferably one that specializes in headaches. A proper diagnosis is very important!

In the meantime, you could try slamming down an energydrink (one that has high levels of cafeine and taurine in it) at the onset of a hit. It can help abort it, and also lower the intensity.

So good luck, and keep us posted!

PFDAN, Lottie

CH is so rare a disorder that many doctors will go a life time without seeing a case. Diagnosis is often difficult and so finding a skilled M.D. is very important.
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LOCATING HEADACHE SPECIALIST

1. Search the OUCH site (button on left) for a list of recommended M.D.s.

2. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

3.  Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

4. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE On-line screen to find a physician.

5. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Look for "Physician Finder" search box.  Call 1-800-643-5552; they will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.
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You will find this a helpful read.....

HEADACHE HELP, Revised edition, 2000; Lawrence Robbins, M.D., Houghton Mifflin, $15. Written for a nonprofessional audience. Highly recommended.

Lottie wrote on Oct 9^th, 2009 at 5:49am:

Second: Find yourself a good neurologist, preferably one that specializes in headaches. A proper diagnosis is very important!

Sorry you are here, but it's a good place to be. Next step I would recommend:

Dr Sheena Aurora
Swedish Hospital Pain and Headache Clinic
1101 Madison St, Ste 200
Seattle, Wa   98104
206 215-2243

She and they know about clusterheadaches. Don't self diagnose, but be sure to vividly describe the symptoms. First time I called they had me in in days...normal for a neuro can be weeks to months. Her first comment to me almost had me in tears... after years of wandering in the wilderness of medical ignorance..."I treat this VERY aggressively"

Best,

Jon

Wow Megan, Jon019's info for you looks like it could be one serious breakthrough right there!  :) ;D

I think a lot of us gave up a while ago on finding a competent doctor to completely entrust our care to. That just means taking matters into our own hands though, which I think is really necessary pretty much no matter who your doc is. You just learn (here) about what the most effective treatments are and you do everything you can to go out and get 'em.

And there are plenty of effective treatments that I have the feeling you haven't been prescribed.

Personally I can't even imagine myself just turning all of my CH care decisions over to some doctor, and not doing or learning anything about it myself. That's generally a prescription for experiencing plenty of unnecessary CH attacks.

I'd be very surprised if even the very excellent sounding Dr Sheena Aurora prescribes 02 with both non rebreather mask and high liter flow, 2 components that many here find critical for successful O2 use.

P.S. I lived in the Seattle area for 10 years myself. Loved it.  8-)

Welcome to the board.....all of the techniques you've described have been tried with very limited success. You're in a bad place right now but you've gotten some great advice to get you started. Get to that recommended doc! If you're not already doing so, start a headache diary. When they start, how fast they build, how high they build, how long they stay at peak pain, how fast they leave. The more detailed the better. Any triggers you have discovered so far. A HUGE diagnostic tool for your doc. For now, avoid alcohol as it's an almost universal trigger.

They haven't cured these things yet, but I've had them 31 years and am here to tell you they are manageable. Between the prevent I take while on cycle..lithium...and my favorite abortive...oxygen...I no longer live in fear of attacks.

Welcome home, you're not alone anymore.

Joe