Hello, all!  First, I would like to say that I am already enrolled on this board.  A few years ago, I had a car accident, and there are several message boards that I try to join, only to see that I am already a member.  I apologize that I really don't remember much about my last visit, but I am glad to be back.

I've been having CH since I was young (my mom guesses 11 or 12).  I went to eye doctors, ENTs, and anybody else my parents could think of.  At first, we actually thought it was a brain tumor or something, because it was always behind one eye.   I had MRIs and all kinds of tests before they decided that they were "just migraines".  But, these were unlike migraines that anybody else in my family experienced.  They always occurred behind and around my left eye.  They'd wake me up almost like a clock around 1:00 AM (to the point that my dad set an alarm to come wake me up, thinking it would stop them).  At first, I was given Zomig.  Then, at 16, my mom lost her job.  My dad was unemployed.  So, no medical insurance.  They used to tell me to lock myself in my bedroom so that my brother and sister wouldn't get scared.  I eventually found out that if I took a thick plastic coat hanger and put it around my head like a hat, then sat in my grandma's rocking chair and rocked as hard as I could, it would stop.  One day, they just stopped.  But it was kind of always like that.  The first episodes (or cluster, I guess), lasted for four months.  They always hit between February and April.  Then it went away for a few years.  We just treated them as bad migraines until college.

When  I was a sophomore or junior in college (my memory is pretty fuzzy past like five years ago, on many things), they hit with a vengeance.  I was on student insurance, working four part time jobs to help at home, because both of my parents were still basically unemployed.  I went to the student health union, and all they gave me was Zomig and Hydrocodone.  For almost three months, I was there at least once a week.  I kept telling them the pain killers weren't helping.  They thought I was a drug seeker (I actually have a phobia about taking opiates due to my mom, but that's another post).  They eventually sent a letter saying they wouldn't treat me.  I couldn't go anywhere off campus because of insurance, so I just had to wait.  After three months, they stopped.

Then, in 2008 or so, I was in a pretty horrible car accident.  I was hit in a T-bone collision (Camry vs. semi).  I wound up with pneumothorax, 10 staples in my head, broken sacrum and pelvis, dislocated knees, and a smattering of minor injuries.  The doctors thought something was wrong with me because whenever they'd ask for a pain scale, I'd only ever say up to 7 or maybe 8.  They asked why it wasn't a ten.  I said that I get migraines that are WAYYY worse than the breaks.  I don't know if they believed me, but they never pushed it.

Then, in 2010, I became a kindergarten teacher.  I adore my job, and I am darn good at it.  I had a minor bout with headaches last February, so my GP sent me to a neurologist for tests.  He was the first specialist I ever saw for that.  After ten minutes, he told me that I had CH.  In fact, because I was between headaches, I had Horner's sign in his office.  He prescribed Verapamil, more Imitrex (inc. injections, which are awesome), and oxygen.  I thought he was crazy about the oxygen, but he swore it would help.  So, I was given three oxygen tanks.  They did help, but were unwieldy.  The other problem was that the mask would slide off my face as I moved during an attack.  I later found out they didn't give me the non-rebreather mask, just the little strip that goes over your nose.  I'd hold onto it for dear life, and try to breathe through my nose, but sometimes it would just fall off and I wouldn't notice it until it was over.

So, this year, in February, the headaches came back with a vengeance.  I've never had them this bad before.  They wake me up every day, no matter what, at 3:00 AM.  Sometimes I throw up, sometimes not.  Sometimes they are over by 6:30, so I can go to work, though I feel awful.  Sometimes I can't work.  My coworker knows the signs, so I try to get out of the building ASAP if one happens (usually before 11:00 AM, then again at 3:30-5:00).  My face gets red, the eye swells and tears, and I start sweating like crazy.  I know a lot of my coworkers think headaches aren't a big deal, but I tell them these aren't regular headaches.  Advil won't help, so please quit asking!!!

My boss has been super awesome.  Though I've had to use almost 90 hours of leave since February (I've been working half days as much as possible, with a few full days thrown in), she's understanding.  She's offered me a curriculum developer position to move into if I can no longer be in the classroom.  I desperately want to stay in the classroom, but I'm not sure I can right now.

I have let this go on for three months, and I feel like a bad person.  I thought it would stop, because they always do, but it just won't.  Today, I was given a course of Prednisone to try because the Verapamil is just not stopping it.  I finally got an appointment with a cluster specialist at Duke Neurology in NC, but that won't be until July.  Sometimes, I think I won't make it that long.

Sorry this is so long, but thanks for reading.

Very good news about Julyl. But in the meantime, be sure that the Pred. dosing is sufficient. Ofte starting at 90mg with a taper down to zero.

If that reduces some attacks, the Verap at sufficiently high dose may help.

I checked the dose.  They started me at 80 mg to taper down, but only because I have a history of being sensitive to steroids.  I feel soooooo much better.  Only two headaches today, and both only 20 min, so much better.  But, my face is puffy, low grade temp, and my checks and neck are flushed bright red.  That's my usual reaction, so I hope it will calm  down tomorrow.

At the same time you started the Pred, you should have also been starting Verap, increasing the dose. Not unusual to end up with Verap as high as 800mg before you get full benefit.

Print the PDF file, below, and use it to discuss options with your  doc.

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