Hi,

My name is Pete, live near Denver, CO. Glad I found this forum. Spent last 8 yrs self diagnosing and pretty much thinking I had a mild form of Trigeminal Neuralgia. Finally saw a TN specialist (or new Neuro) and hes led me down this path. So many questions its hard to know where to start. I guess Ill give my brief history and then kind of poke around to topics that relate to me. Ive actually already found some really interesting tidbits and completely relate-able posts that are very relieving in some sort of way. Just understanding more of whats going on after so many years and hearing similar symptoms.

Before I even created this account Ive read a bunch here and taken the quiz etc. First off, I dont fit the perfect profile of CH, however Im fairly certain there is definite crossover (assuming I have CH and/or some nerve issue). This all started about 7 or 8 years ago and my first 3 years or so were pretty awful. Ive since had some relief for a few years and then a really bad year this year with some strange/new symptioms or side effects. All started with me creating a shocking pain by rubbing my hand down my forehead and shocking the nerve with touch. I knew something was up so had the MRI, saw neuro etc. That being said, my pain has always been manageable esp when I compare it to real TN and CH sufferers. I do/have however had extreme days. Here are things that apply to CH that I have:

Dull throbbing only on right side of face above right eye or something just "there" for hours, days, weeks on end. Per the quiz, its hard for me to quantify time periods as they seem to last hours within weeks. Some sharp hard hitting jolts and some mild migraine type pain that has lead to very deep throbs (only a few times and others where its heading that way but I manage to fend it off)
Definite ptosis in right eye with tearing and blurring when its bad. The dull throb and ptosis mostly come late afternoons into evening for me (4 - 8 hours) for anywhere from 3 - 4 weeks.
These symptoms always come during change of seasons, spring is worst. Ive had really bad outbreaks after exercise a few times esp early on.

Things that arent related to CH:
I dont wake up with intense pain and like others here I dont get consistent sharp jolts and intense headache pain. Could still come and worsen over time is my fear.
Got floaters all over both eyes after symptoms started. Nobody can explain, have had eye exams etc.
Constant clearing of inner ear/head space when I have symptoms.

Recently got shingles on forehead, then scintillating scotoma in right eye followed by bad symptoms for week. Had bad head trauma, almost broke neck in ocean. Broke the tip of my C7 off which apparently is not bad. Found out years later in x-ray per physical therapy. All my symptoms started after this so Ive always related it to my spine and/or hypothalamus so the posts about that are very interesting to me. On my worst days which are only a handful over the years, Ive gone to ER. I get an ill feeling all over my body and my temp changes, get chills without fever which I cant tie to anything. Will continue to research. Next steps are going to another referred specialist for facial pain, then possibly pain mgmt dr for the SPG block or injections to start. Would love anyones thoughts and thanks for any replies. Sorry for long first post.

Pete

Another quick question, pain killers (OTC) like ibu and tylenol have never worked much for me if at all. Best bet was Advil Migraine but these dont do a thing when my symptoms are really bad. I was first diagnosed with possible CH but completely dismissed per not having intense headache like pain. Still, this is by far closest symptoms to match up for me. Im really thankful its manageable at this stage when its not bad. However, after coping for 8 years Im just tired of feeling clueless and the constant guessing. Its insane what one goes through in their head and our poor loved ones having to hear about it for years and with each episode trying to explain it again. 

While respecting your intelligence and drive to diagnose, it's a pattern which is repeated all too often leading to years of suffering. This too often happens even when we are working with docs--who have meager training in handled complex headache disorders.

When you consider the following, you can see how much we require deep knowledge and skill from our doc's.
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Link to: cluster-LIKE headache:

IN: "Medications, Treatments, Therapies --> "Important Topics" --> "Cluster-LIKE headache"
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LOCATING HEADACHE SPECIALIST

1. 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.

2.  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.

3. 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.

4. 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.

5. 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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WHY A HEADACHE SPECIALIST IS RECOMMENDED


Headache. 2012 Jan;52(1):99-113.
Cluster headache in the United States of America: demographics, clinical characteristics, triggers, suicidality, and personal burden.
Rozen TD, Fishman RS.

THERE REMAINS A SIGNIFICANT DIAGNOSTIC DELAY FOR CLUSTER HEADACHE PATIENTS ON AVERAGE 5+ YEARS WITH ONLY 21% RECEIVING A CORRECT DIAGNOSIS AT TIME OF INITIAL PRESENTATION.
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The last para. reinforces the notion that we are not well equipped to diagnose/treat ourselves AND the need to find a sharp doc.

excellent points and references. Thank you, I will use this going forward.