Hello Everyone,

I must apologize as I am sure many of you get sick of answering the same old questions.  I am kind of at a loss and fed up, in general, of medical care, doctors, etc.

I figured the best place to get an opinion is from other sufferers.

My Doctor "thinks" I may have cluster headaches but I am just not sure.  I was told possibly migraines, sinus headache, tension headache, headache from stress/anxiety (tension headache as well?), fluid in my ears, etc.  They keep trying to pump me full of pain killers, antibiotics, decongestants...you name it.

Here are my symptoms and I truely appreciate ANY input.  Every six months or so, I have a headache that starts as a dull ache in my right eye and right side of head.  The pain is behind my eye (almost always my right), my right temple, above my right ear, and down behind my ear to the back of my neck.

The pain has never been "kill me" bad.  It's a dull ache with very VERY few shocks or sudden bad pains.  If there are, they last for about 2 seconds.  I am very rarely in pain in the morning.  I can fall asleep and the pain generally starts by the time I get to work and gets worse throughout the day - eventually ending up being behind both eyes, top of head, back of head but still mostly that dull ache behind my right eye.

I apologize for rambling but I am kind of fed up.  Is this the start of cluster headaches?  I am 28 years old and have had this off and on for about 2 years now.  I HATE taking medication...HATE!  I am one of those individuals that has a horrible reaction to everything from caffiene to MSG so I only take meds when absolutely required.

So, I guess I am wondering if these are CHs?  If so, will they get worse as I get older?

Again, any info is greatly appreciated.  Thank you very much!

Try taking the "cluster quiz" at START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE and see what results you get.  While it's not a diagnostic tool, it may give you some idea whether or not CH is what you're dealing with.

When this syndrome starts, the symptoms may be somewhat amorphous.  What starts as a whimper may end in a bang.  Keep after your doc to see whether you can achieve a definitive diagnosis.  If it does, indeed, turn out that you have CH, we'll be more than happy to talk about possible treatments that you can discuss with your doctors.

Welcome to CH.com.

Best wishes,

George

This is a complex area of medicine. Find a good doc:
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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.

Thank you for the information.  I guess my hesitation is based upon my past experience with doctors and their "Well, if you want an exact answer we can do an MRI/CTScan" which would probably cost me a ton of money out of pocket.

I guess I am just curious, based upon my current symptoms, if my symptoms sound like something that other sufferers of CH's feel?

There seem to be some similarities (one sided headache) as well as what seem to be some pretty drastic differences - long lasting, not the worst pain I've ever felt, etc.

The difficulty with the early stages of CH is that symptoms often vary, change, wander about, etc. for months, even years, before settling down to a more or less fixed picture. Don't get hung-up on comparing your symptoms with those you see in print.

Re. MRI. This is becoming established as standard practice for new patients but, in reality, the % of such studies which reveal anything of importance is not high. In my judgment, you can defer an MRI unless there are some rather unusal symptoms. Here is where the judgment of a specialist is important--but don't avoid seeing a doc because you cannot, now, afford the MRI. Most docs will negotiate....

For me, I figured out the condition based on the effectiveness of sumatriptan. Other than aborting migraines and cluster headaches, I don't think it does anything else useful.

If you've tried it and it works, at least you can narrow the condition to one of two things. :)