Hello,

My name is Mark.  I am or was a healthy, active 30 year old father of two living in Maryland.  Three days ago I woke up with what I thought was a sinus infection.  My right nostril was stuffed up, the right side of my head hurt, my eye felt like it was going to pop and it wouldn't stop tearing. 

I went to work figuring I would be okay.  I was wrong and ended up going home at lunch.  Took some nasal decongestants and Ibuprofen and went to bed. 

Next morning the pain was there but much less so I figured I was on the mend and went back to work.  Around 2pm the pain increased drastically.  I managed to stay until the end of the day, went home and tried to lie down but it got worse, so I paced and tried to watch TV until it died down enough where I could finally get some sleep.

That was a mistake. 3am I woke to a sharp pain stabbing into my eye, like a brainfreeze that didn't go away, lasted for about an hour before I was able to fall back asleep.  When I woke up I went right to the doctor's.  They took one look at me and told me I most likely had an onset of cluster headaches.  I had no idea what those were.  They put me on 100% oxygen at a setting of 12 for 15 minutes with no effect.  They consulted with a near by neurologist who agreed with the diagnosis.  Then I was given an injection of steroids and sent home with a prescription for a 6 day treatment of Methylprednisolone 4mg and 2 boxes of 2 self administered shots of Imitrex. 

I gave myself the two shots and took the pills.  Things were getting more manageable last night.  The pain was decreasing and I was able to get a good nights sleep.  I woke up this morning and was perfectly fine.  No tears, no pain.  I thought great the worst was over and went to work.  Now 5 hours later my eyes have been watering for 2 hours and the pain is starting to come back slowly.  I went and bought a case of redbull and drank one quickly as I have read that that may help, and maybe it did, as the pain has not gotten worse. 

I have no idea how long to expect the cycle to last and I'm selfishly hoping that I will be one of the lucky ones that will never see a second cycle. 

This has all came out of nowhere and caught me completely by surprise and I am still trying to cope with the ordeal or how to explain to my kids that daddy isn't crying because he sad. 

It is reassuring to see that I am not as alone as I feel.

Mark

While I have no serious reservations about the meds your doc gave you, but the package a little underpowered. And I wonder if they plan to continue to see you for a long time, on the assumption that the Dx of Cluster is on target.

Basicallyl, Cluster is not a short term disorder. Most of us have been treating it as chronic condition which regularly continues until well into your 60-70s. We really appreciate working with a headache specialist with whom we have a long working relationship.

Because Cluster has change in its presentation, changes in treatament is not unusual (and doesn't mean a serious impact on us) and benefits from a doc who is sophisticated in working with this elusive condition.

So, if you have the option.....
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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. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or On-line screen to find a physician.

4. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or 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. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or 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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I'd seriously encourage you to not try and diagnose yourself or try moving from one treatment to another becasue you've read about something here. If you are going to work with a doc, he has to know what you are doing and be in charge of treament. Makding changes can confuse the picture for him and, thereofore, for you.

First step is to confirm the diasnosis with a skilled doc. Secoond, be patient while working out a treatment plan. (During early stages of a new case, the symptoms often change. May take months or longer before a stable picture of our experience develps. Not serious, if frustratsing.)

That's good news, I'd suggest starting a headache journal in the meantime. When they start, how fast they build, how high the pain builds, (the KIP scale is a useful tool for measuring pain): Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or ;   How long the pain stays at peak, how fast it goes away, any secondary symptoms you experience, the type of pain, where you experience the pain, any potential triggers you can identify, the more detailed the better. The correct diagnosis tends to be in the details and a decent diary can make the neuros job easier, more so if it is CH as a CH diagnosis primarily involves eliminating most everything else!! Wishing you speed in your diagnosis.

Joe

It's not selfish to hope that this cycle is an isolated "one off". We all wish the same for you, and we all pray that our current cycle will be the last. Sadly, few of us are that lucky but we learn to live with it and live our lives around it. I don't know when, but your cycle WILL end eventually. When it does - treasure your painfree days, but always stay prepared because this thing in our heads can come from nowhere like a bolt of lightening.

I really hope this is your one and only cycle, and it's a short one.