Hi everyone. Just wondering if I can get some insight from some experienced cluster headache sufferers.

My first batch of bad headaches came 2 years ago at this time. They lasted from March - April, several times a day. Unilateral, mostly bothering my eye. Very painful. Only 1 of them sent me to the emergency room. Every doctor I saw said they sounded like cluster headaches. However, I was a little unconvinced because the pain didn't seem AS bad as I've read about. To deal with it, I liked to sit in the dark and silence and have a cold wet cloth on my face. I never had the urge to pace.

So figuring I had cluster headaches, I was worried they would come back last year in March. I had no headaches whatsoever.

And now, this year. I've had a headache for the past 4 days. It feels similar to the headaches I had 2 years ago, but much less painful. More of an annoyance than anything. It's also constant. It's mostly unilateral, but has also been bilateral, effecting the other side of my head and eye. I feel it most of the time in my left temple. And I'm getting the numbness feeling.

So, my question is, does this sound typical of cluster headaches? I'm wondering if they could just be migraines / tension headaches cause by the barometric pressure of the seasons changing. Where I am, the winter has been very bad, and the temperature right now is flip flopping like crazy. I know I should talk to a doctor about this, and I will. I would just appreciate any insight.

Thanks!

G'day JPO. There's some buttons on the left of your screen and the fourth one down is marked Cluster Quiz.

Give this a go and let us know how you get on.

Hi and welcome

What we can't do here is to give you a diagnosis, that requires an experienced professional to be able to examine you, do tests and work out what is causing the pain.

There are certainly some symptoms that sound like those from CH, some that don't, but then CH when it first starts out can be relatively mild compared to classical CH symptoms and people seem to grow into them over weeks, months or even years.

What you need to do is to find a headache specialist as GPs, even most neurologists have insufficient training and experience in diagnosing complex headaches. There is also a risk that it is not a headache but the symptoms are from something else that gives the same symptoms.

Where are you in the world? There may be someone local who can give you a suggestion or two as to good people to see.

Start keeping a headache diary too with things like dates, times, pain location, duration, symptoms and notes. That can also help with the diagnosis and identifying triggers.

Keep reading too, the more you know about headaches the better you'll understand what is happening.

Keep us updated too.

The symptoms of Cluster are no written in rock; invidivual variation in timing, severity, location of pain, etc. are common. Especially when you are first starting to have symptoms, it may take months, even a year or more, before a stable picture develops.

Given the complexity of these disorders, combined with the limited training/experience of many docs in treating headache, we advise working, if all possible, with a specialist.

Note the last paragaph:

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.

Thanks for the replies guys.

I took the Cluster Quiz. I answered 7 / 8 as "no" on the first half, and 3 / 8 "yes" on the second half. Some of the answers were pretty close to going either way though.

I'm in Ontario, Canada, right near Toronto. I've booked an appointment with my doctor and am going to ask for a referral to a headache specialist. When I first had these headaches 2 years ago, both my doctor and the emergency room doctor recommended I take regular headache medication. Based on what I've read, they aren't too familiar with clusters.

Since I last posted, I've continued to get these mild cluster-like headaches. I'm a little worried they're building up to a full blown CH cycle. Going to try to find a specialist ASAP.

For your peace of mind, stop fretting about the future, will Cluster fully develop, etc. We don't have any control over its start or ending; we learn how to control them.

Do your best to see a headache specialit, not a general neurologist (unles you can confirm training/experience with headache). Most neuros have meager education in headache.

Print the PDF file, below. These are the most commonly used meds for Cluster and you should see any doc working from this list. It's a good tool to  guide discussions with any doc you see, specialist or not.

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