rating: 0+x


my age
==== 29

my diagnosis
==== episodic

date clusters started
==== 2005

background - family, location, career, etc.

Diagnosis: your story
Clusters started: Hi everyone.
I am not sure how to start. It's been two weeks since this cycle started, two years since my last one so I was lulled into that false sense of security where you think that maybe they will just never come back ever. Wrong. Two weeks in with no signs of slowing. Sigh.

I started getting terrible headaches in university. Debilitating, multiple times a day, in my sleep, for weeks. I was 19 at the time. On campus doctors told me it was migraines, so prescribed me every migraine drug under the sun, and obviously nothing worked. I was referred to a neurologist who I didn't get to see til months after, and he said my posture was bad and that caused them. Not very encouraging.
Years went by and I would get about one cluster cycle a year. The doctors would initially diagnose migraines and then suggest cluster headaches, only none seemed to have an idea of how to treat them. At one point I hadnt slept in weeks, and my doctor prescribed tylenol 3s naproxen, a prescription strength muscle relaxant, and beta blockers. So for a month every year I was a drugged out zombie that STILL found no relief for the pain. I would ask be at the doc office every day begging for something else that would work but nothing did. I remwmber taking too mamy tyelonol 3s and thinking "stop it Joanna, you can't take any more of these, you will OD" and then the other part of my traumatized brain saying " but maybe if you take one more it will work…". Yikes.

So 7 years went by of this. Then two years of being headache free and I forgot about them. Then the day before I was to board a plane for a 7 week solo trip to germany, they came back with a vengeance. I had no medication, I had no time to get medication, I had to either cancel my trip, or dose myself to high heaven and try my luck with the european healthcare system.
I chose option 2, and to this day I can't believe how lucky that was. I spent two weeks in agony going to walk in clinics in Amsterdam and begging them to give me more than 2 imitrex nasal sprays at a time.
I made it to Berlin just as I ran out of pain meds.. Completely. I had nothing. I got an attack, a 10 on the kip scale. I had all the symptoms, drooping eye, red face, blocked nose, hysterical crying and hyperventilating. My dear friend Laura decided enough was enough and called around and found a doctor thepifh the American embassy website, called them, told them my symptoms, they told me to come in immediately. This doctor was a pain specialist. One look at me and he immediately diagnosed me. He asked what my Canadian doctors had prescribed me for 7 years. When I told him he was horrified. He said that if that had happened in Germany I would have grounds to sue for causing unnecessary pain and suffering. I remember weeping for joy that finally I had a doctor that understood this condition. He prescribed enough imitrix nasal and injections to last me a month, as well as Valium for the muscle spasms and anxiety, and started me on verapamil. He told me to find a new doctor and see a neurologist when I returned home.

That was two years ago. I have a neurologist who specializes in headaches. I am his only female patient, apparently being in my 20s, non smoking and female is quite rare for this condition.. Lucky me.
So this is the first time I've had a cluster cycle actually being prepared with my prescriptions and my oxygen tank. It does make it better, but this is still hell. When you get 4 attacks a day and you can only take the imitrex twice, what then? The oxygen works some of the time but I find the attack will go away but then just come right back after an hour

Date Event
Jan 2003 sample event


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