Hi everyone...

About three years ago I spent about two months suffering from something completely new to me. Every night at almost exactly 2:30am, I woke up with a stabbing pain beneath my right eye. The way I described it to my girlfriend at the time was that it felt like someone was performing surgery on my eye socket, baring into it with a drill and simultaneously smashing a hammer into my forehead.

Over the course of the two months, they got worse. At first it was 2:30 am, then it was 2:30, 5:00, 7:00, and sometimes even at work. I went to the doctor, naturally, but she was a little dismissive and suggested that it was stress related, or migraines. She prescribed me a low dose of antidepressants, and said they sometimes help.

To my surprise, they did go away, though now that I've done more research, I don't think it was the pills. They just went away, and I was incredibly relieved.

Jump to now. I haven't thought about them in years, and about a week ago it starts again. 2:30am, 5:00am, and so on. Worse than I remember. I wake up crying, biting onto anything I can find, curling into a ball and rocking or shaking. Last night I almost called 911, because I thought I was dying. But as fast as they come on, they disappear. They last about thirty to forty-five minutes, three to five times a night, on my right side.

I've barely slept in five days, and I don't know how long it's going to continue. My anxiety is off the charts. I'm now afraid to go to bed.

I just met a girl recently, and I'm afraid to spend the night with her, because I don't want her to see this. I'm afraid that doctors will scoff at me. I haven't been diagnosed with Clusters, and I recognize that something else could be going on, but everything I've researched has suggested that this is what I'm experiencing.

I don't really know what I'm looking for here...I guess just the comfort of telling this to someone who might understand. I appreciate your time! And yes, despite my concerns, I am making a doctor's appointment, and I hope to get in asap.

This is such a complex area, with so MANY varieties of headache, that you need a specialist. Just any neurologist won't do. Too many of us have wandered for years before finding the right doc/diagnosis, ergo, relief.
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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.

Thank you, I really appreciate the help. Good or bad, I'm on an HMO (Kaiser). But I've called and described my situation, and have made an appointment with a new physician (not the primary care physician I usually see, and saw last time), who may be able to help. My appointment is at 9:20 am tomorrow, so wish me luck.

If I don't make any progress, I will most definitely start looking for external clinics that can help. I will spare nothing for a even a little relief.

Sounds like you're on the right track now Reedy, and yeah tracking down a headache specialist if this next Doc doesn't work out sure could be a good thing.

That first doctor was an idiot. So what's new though, this happens constantly.

At the risk of over repetition of what's been said here recently, please don't just leave your treatment 100% up to what any doctor says. If it does turn out you have CH (sounds very likely to me!), you have have to research your options here on this site, ask questions, and develop a plan of action for either working with your doctor, or determining whether you've been stuck with another fabulously wealthy yet horrifically ignorant one.

After becoming well informed you'll almost assuredly know more about how to deal effectively than the doc will, and you'll have to nudge 'ol money bags in the right direction.

Plus there are a lot of non medical things that can help you that you'll wanna learn about pronto.

So take charge of your own treatment, and good news is there's an excellent chance you'll be getting significant relief! ;D

Again, thank you so much for the support. I will hopefully have a positive update after my appointment tomorrow. I have been reading up on this site about everyone's experiences and treatments, and it's making me really optimistic.

I hope I've caught you before you see the new Dr.

Go to the links to the left and read "cluster traits, cluster quiz, med. info. and the 02 site"    Print off whatever you think you may need when seeing this new guy.  One of the 1st. things...after a dignosis of CH, that you want to ask for is oxygen.  It's, cheap, safe and it works. 

please let us know how your appointment goes and keep in mind that most Dr.s do not know about,  or understand CH.  YOU have to be knowledgable enough for the both of you.   Crossing my fingers and toes for you.

Linda

Hi Reedy, wishing you all the best with your MD's visit.

Please follow Linda's advice and arm yourself with as much knowlege as you can. "Specialists" tend to be the most arrogant of MD's. I spent my childhood amongst them. If you are lucky you will find one with an open mind, but if you don't ,educate one!

All the best