Ok, the more I read on here, the more I wonder if I am even experiencing CH's.  I am not getting these things one after another like the majority of you all.  So what now?  Now I don't know how to treat this beast if I don't know what it is!

Any ideas?  Thanks.

Have you taken the "cluster quiz" over on the left side of your screen?  Might give you some idea whether you're dealing with CH or not.

I've really not heard of CH attacks that are as infrequent as your attacks are.  Normally, we end up getting one to several a day, either as chronics (they don't go away) or episodics (cycles that last for several weeks to several months).

When CH first begins, it may not follow well-established patterns.  Nevertheless, based on the very infrequent attacks you're having, I wonder whether CH is truly what you're dealing with.

Time to meet with a headache specialist if you haven't already done so. 

Best,

George

It's one of the reasons we don't "diagnose" here, it's a risk with potentially very serious side effects.

Continue to keep a log of exactly what's happening with your head, continue your self education on the net, and most importantly, find a competent headache specialist neurologist to work with.

Joe

Confusing because "headache" is a simple symptom which can arise from many disorders which are not self-evident. This is the primary reason we encourage working with a headache specialist--sorting thru the possibilities requires more training and skill than most docs have.
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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. 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.

6. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE NEW certification program for "Headache Medicine" by the United Council for Neurologic Subspecialties, an independent, non-profit, professional medical organization.
        Since this is a new program, the initial listing is limited and so it should be checked each time you have an interest in locating a headache doctor.
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Self-diagnosis is often a dead end effort and, sometimes, a one with serious consequences when a major medical problem is not detected.

Yep,  :( as frustrating as it is, you are very right and I knew the answer, just needed the confirmation.  I have an appt on the 9th.  I have a good documentation and I am pretty determined that this cannot go on any longer.  Its a good thing I dont live near a freeway during an attack!  I would be tempted to find a fast moving bus and well, ya know.

Good news is, the 9th is right around the corner and thanks again for your support here!  I have learned so much.

SpringThyme 8-)

Please keep us updated. And don't completely discount CH, I've seen so many variations of symptoms here, as Bob often mentions, the early stages of CH don't always mirror the "classic" symptomology. Wishing you speed on the diagnostic journey. [smiley=hug.gif]

Joe

I would be tempted to find a fast moving bus and well, ya know.
When it gets that bad...log on here, the time differences mean you never have to wait too long for kindness, support and empathy plus good sound advice.
:)

I don't know if this will help you, but I never went to a Doctor until I became chronic. Oh boy, that was a fun 4 years. After that I became episodic. Now, for years prior to me becoming chronic I used to get attacks every once in a while and always passed it off as a sinus headache or possible bad tooth. They did not come in typical timed groups like they do now. I could get an attack, wait it out and wouldn't get another one  for some time. There wasn't any pattern. Anyway, that was how mine had started, and even if I had gone to a doctor for it, it understandably would have been misdiagnosed because of the lack of pattern that is typical. I know now that is what it was, but didn't know that it would evolve how it did.
I  guess my point to you is don't assume that it isn't ch until you know for sure. I hope that it isn't, but just because it isn't typical as most in the medical profession understand it, doesn't mean it isn't a ch. Keep plugging.

Glad to hear I'm not the only one! Mine are also infrequent and I deal with more of a constant ache with stabs of varying levels on a daily basis, then constant big attacks!

I'm going back to my neuro on the 8th of April and going to ask her about hemicania continua - similar symptoms to CH but more with the constant daily ache and varying pain levels of stabbing, presents with similarities of CH like dropping/tearing eye, etc. Only way to know the difference between CH and HC seems to be whether it response to a daily dose of oral indomethicin or not...

I still do wonder though whether mine are inconsistent due to not yet settling in a pattern...since everything seems to fit except for length/consistency. It's so frustrating not knowing...

I still do wonder though whether mine are inconsistent due to not yet settling in a pattern...since everything seems to fit except for length/consistency. It's so frustrating not knowing...            

Yeah the early stages suck. It's such a relief to finally get a firm diagnosis...no matter how bad it might be...just to finally know HOW to deal with all the crap. Hoping you can get it sorted soon. [smiley=hug.gif]

joe

This may sound silly but it's true. I was diagnosed by a Headache Specialist in 1989. I was having an attack during the exam but it was dulled slightly by Tylenol #4's. Not now...

He looked at my eye on the pain side then the other and said "this is Cluster Headaches." He told me it's rare for him to see an attack and my pupil on the pain side was smaller than the other and that was a sign he had seen before. There was more than that though.

I tried to do this in the mirror and couldn't tell.

Don

Yeah the early stages suck. It's such a relief to finally get a firm diagnosis...no matter how bad it might be...just to finally know HOW to deal with all the crap. Hoping you can get it sorted soon

You know, I think that's the problem. If they get worse, I know I can get oxygen and deal with them hit by hit. But right now, the constant daily pains and stabs that I can't take anything for are really getting me down :(

Not that I can really complain because I"m sure anyone in the position of suicidally bad ones would gladly change! And I do appreciate that and remind myself everyday that it could be much worse...