Quick question, in case anyone gets a reply in before my appt. with my ENT surgeon tomorrow eve...

I'm in a situation where a co-existing condition may be affecting my CH.  I've had ongoing ear trouble, and to date, four surgeries to try getting better hearing in my left ear.  It seems (and I'm not sure), that when I have ear infections or pain in that ear, that it can trigger more CH.

My question is if anyone here has talked to their ENT (ear nose throat doc) or GP about cluster headaches?  I'm curious how knowledgeable my ear guy might be.  I mean, I will talk to him tomorrow anyway.  But does anyone here know if ENT's are generally knowledgeable about our condition?

Great Question/Topic which deserves more attention . 

I was very fortunate that my ENT had some basic knowledge about CH.  I had gone to her 3x for what I thought was major sinus infection.  After a CAT scan she finally concluded that there was no sinus problem which could explain the excruciating pain I was experiencing and suggested I see a Neuro to investigate possible CH. What a lifesaver!

It is amazing to me how closely CH can mimic sinus problems (and also dental issues) and I was very lucky indeed to have an ENT who had basic knowledge about CH.

As to triggers, its hard for me to tell what comes first -- the CH or the sinus problems.  Even when I am not in cycle I do have some minor CH-type pains which affect my sinuses, so for me I *think* it is more a case of CH provoking the sinus issue, but cannot be entirely sure.

Good luck, be interested to hear what you doc says.

Two years ago, I went to an ENT for obvious allergy symptoms. His knowledge of CHs was very limited but he knew better than to try and treat the Cluster symptoms. He focused on his specialty, and the result was: no effect on CH, but it did help with what was obviously allergy related symptoms. May you have better luck! blessings. lance

Forgot to add -- a fairly standard treatment for serious sinus problems is a prednisone taper; a happy coincidence for CH suffers who are mistakenly being treated for sinus problems.

Good, then maybe I can get a proper dosage on the pred taper because so far, my GP is very wary of it and would rather not give me any at all.  (Last time, he wrote a script for 30 one milligram pills.  To be taken once daily. ??)  Still working to find a new neuro.

With MCV, et al, in Richmond, surely you are not having a problem finding a headache specialist???

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.

My access difficulties are not related to availability of doctors in my area.  Due to financial circumstances I'm driving a car that's barely driveable.  Public transportation in my area is non-existent.  I work two jobs and because of my CH, I often miss time and need to make it up.  I also need to share time between CH and my ear surgeon.  Finally, I rarely have a weekday off and so far, I haven't heard of a neuro who works the weekend or at night.

So right now, it's a planning issue.  My friend circle is small here (not a native).  I have good insurance, but a specialist still costs $30 and I often don't have enough to eat well or get my hair cut.  Not complaining, just explaining.  I do the best I can, and every day I get one step closer.   :)

Just got back from the ENT surgeon.  He was able to get some crusties out of my ear, but it didn't help with the pain, pressure, or dizziness.  He recommended antibiotics + pain medicine, but seemed puzzled as to why I am having this pain as there were no signs of infection.  I'm guessing CH must be up to its usual, "referred-pain" tricks.  Just took the first hydrocodone pill.

If this is CH in a weird form, I'll know shortly.  Narcotics never work for CH for me.  :-/

Agree on the Oxy not helping the CH when they are happening.  They did, however, tend to cheer me up if I took them after the beast was gone.....

Haha, TJMBeav... I hear ya on the narcotics side-effects re: "cheer me up".  I wish that were true for me, but they most often just cause a "paradoxical effect"... I tend to get hyper, nervous, and insomniac.

Be very, very careful with using narcotics as a "cheer me up". This might work in the short term, but the risks of needing increasing and more frequent doses is there, leading to addiction.

Oh no, I need to clarify here.  I was just empathizing about desiring narcs to "cheer up", not condoning.  I was probably a bit too flippant.  Personally, I have not ever done well with opiates.  They tend to make me feel pretty bad, actually.