Trying to keep this short: suffered with pain for 10 years & no one knew what it was. Round & round with GPs, dentists, optomitrists, ENTs,...I was poked, prodded, tested, even had all  of my healthy teeth removed. Finally an ENT diagnosed Trigeminal Neuralgia in 2002, confirmed by a neurosurgeon. I also have a slow growing tectal lipoma (small tumor) which was thought to be pressing on the trigeminal nerve & causing my pain. I have been on 1000mg Tegretol daily for about 5 years now. Can't really say if it's helped.

Yesterday at my bi-yearly appointment, I saw a different doctor who seems to think my problem is actually cluster headaches. Now I'm very confused. He has prescribed Depakote & oxygen...but did not do a prescription for the oxygen...just said find someone with a tank(???).
Reading through this site last night, I see that some of my symptoms are similar, but most are more like the TN. Hard to explain, but I usually have "a feeling" inside my right ear...like an earache about to happen. It comes & goes...not really painful, but keeps me dreading what is coming. NO ONE touches the right side of my face for any reason!! Just a touch can get this cranked up.

When the "attack" starts, it's unrelenting pain with alternating "shocks". I describe it as having an electric cattle prod pressed to your temple (just where the ear meets the cheek) & being shocked continuously for hours, days, or weeks...you never know. At this time I CAN NOT touch the right side of my face...it increases the shocking. The right side of my face does swell including my eye, but I have no tearing or nasal drainage. I will sometimes lose sight in my right eye & the lid always feels heavy. Unlike some of your descriptions, I hold my head as stiff as I can as movement makes it worse. I can't eat or drink because I can't move my mouth...nor do I want to. I sit bolt upright against the couch &  just pray for death. According to your scale, these are Kip 10. It's gone as quickly as it started...could come day or night but usually night unless someone or the wind touches my ear then it's on. It  may happen once a year, or 12...I never know. There doesn't seem to be a pattern.

The last "attack" was in February....ALL but 3 days of February. Thank goodness I'm self-employed. This was the first time I seriously thought of suicide....I can't, I'm a Mom & I have a family...but it's so incredibly painful.

Can any of you shed some light on this...advice or thoughts?? Could I possibly have both TN & CH?

The poor education in headache which doc receive, and this includes neurologists, fill our pages here. Folks often take multiple docs and years of shopping around before hitting paydirt.

If at all possible, find a headache specialist. Our range of guesses about your situation is of no value without a doc with skill/knowledge.
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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.

I can say that some of what you say sounds like my pain.  However I don't have a problem with touching my face at all.  I do get the pressure in my jaw, ear, eye and forehead and I can tell a CH is coming when that builds and starts getting painful.  Best of luck to you - if nothing else everyone here knows about pain, even if your case turns out to not be from clusters.

Thanks so much. Found a headache doc & have an appointment in Feb 2014. I'll let you know how it went.

wallaby wrote on Jun 14^th, 2013 at 9:04pm:

Thanks so much. Found a headache doc & have an appointment in Feb 2014. I'll let you know how it went.

Feb 2014?

That is EIGHT months away! Are there any alternatives? Cancellations? Do what you can to get seen earlier.

Wallaby,

Where do you live?  We've CH'ers all over the world who know of, and who may be able to direct you to good neurologists and pain specialists accepting patients in less time.

Regarding the pain arising from touching the affected side of your face and head...  It's called cutaneous allodynia - Pain resulting from an innocuous stimulus to normal skin or scalp.

Allodynia is one of the lesser known symptoms in the cluster headache syndrome.  In the early years of my cluster headaches, I couldn't use an oxygen face mask because of the allodynia so switched to the mouthpiece option on the O2PTIMASK™ kit.  No problems with allodynia after that.

Talk to your PCP about a lab test for 25(OH)D.  This is the serum level metabolite of vitamin D3 that's used to measure its status.  The normal reference range for this lab test is 30 to 100 ng/mL (75 to 250 nmol/L).

There's a direct correlation between cluster headache and a vitamin D3 deficiency...  i.e., a 25(OH)D serum concentration less than 30 ng/mL, (75 nmol/L).  Moreover, 81% of the CH'ers who start the anti-inflammatory regimen with 10,000 IU/day vitamin D3 experience a significant reduction in the frequency, severity and duration of their CH...  Most of them experience a pain free response.

If you're interested, see the following two links:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

The first link provides the "How To" info on the anti-inflammatory regimen.  The second link provides first hand experiences from CH'ers using this regimen to prevent their cluster headaches.

Take care and please keep us posted.

V/R, Batch

Thanks to all who responded.

After my divorce, I lost insurance coverage so now this is considered pre-existing condition & I can't get affordable coverage . I'm in Louisiana & use neurology @ LSU Medical Center on a sliding scale basis. The head of neurology there is the one who came in Thursday & told me that I have CH & not TN.

I have a MRI scheduled in August for the tumor & a follow up on the CH with them in September. The February 2014 appointment is with a neurologist outside of this hospital.

Also wanted to add...they want to go in & remove the tumor even now that they say it is NOT the cause of my pain. NO WAY am I undergoing brain surgery just for the heck of it!

Batch...I have read through your links, thank you. I'm going to print out alot of this info & take to my September appointment.

I have to admit that most of what you guys talk about is foreign to me. The symptoms some of you have just don't match mine. For once I wish I could just know what the hell is wrong with me!

Since February...this "feeling" in my ear, it's a warning sign that the attack is coming...I just never know when. I don't get pain that stops & starts...it's just unrelenting until it's over....could last an hour or a week. The only time I can  not touch my face because it's so painful, is while the attack is going on & up until a few hours after. On a "normal" day..I can touch my face.

I assume the Tegretol I've been taking was useless. Has the Depakote worked for any of you? Doc told me to expect a 50-100lb weight gain on this med  :'(  I'm thinking of starting your D3 regimine asap Batch.

I appreciate the info from all of you!

Welcome Wallaby. I hope your pain doesn't turn out to be cluster headaches, but something less permanent and more easily treated. As you look around the site, you'll find no two sufferers have the same story. The major common thread is extreme pain -- the worst pain any of us have experienced, including broken bones or a heart attack. Tegretol and Depakote haven't worked for me. Verapamil is my best preventative medicine. There's not much for me in the way of abortives. A lot of people swear by oxygen, exercise or energy drinks with caffeine and taurine. They don't work for me. I need to rely on pain medication and I have to take it before the pain starts or it's out of control by the time the medicine is working. Luckily I have an aura that I can reliably use to take something. It doesn't work if I'm asleep. Sorry to hear about your awful February, your divorce and the loss of your medical insurance, but I hope things have turned a corner for you. Hope the D3 works for you. If you need to vent, or talk about the headaches, this is a good place to be. You're among people who understand pain and the toll it can take on your life. Wishing you pain-free days.

rep