Cluster Headaches · Disability Awareness · Random Musings

Oh! Those Clusters!

I’ve suffered from migraines for a long time and they are excruciating! My migraines start with 6-8 hours of vomiting followed by 3 days of the worst headache imaginable and then a few days of sheer exhaustion.

When I was 19 years old, I felt the need to go to the doctor because I was having migraines type headaches three or four times a day, every day. The only difference was that I wasn’t vomiting. The doctor discussed my headaches and symptoms and checked my blood pressure before diagnosing me with Cluster Headaches. I’d never heard of them before that day. He prescribed me with some migraine prevention tablets and told me to go back in a month to see if they’d worked.

So I went home that day and Googled Cluster Headaches and came across the OUCH UK website. I found the information really helpful for going to work and explaining what this diagnosis meant. The website explained in detail what Cluster Headaches were and what the symptoms and prognosis was.

Cluster headache (CH) always involves pain that is one sided (although it can switch sides) and the main defining feature is the association with one or more of the ‘cranial autonomic’ features normally described as follows:

  • Reddening and tearing of the eye
  • A runny or blocked nostril
  • Droopy eyelid
  • Constriction of the pupil
  • Flushing and facial sweating

In fairness, my managers were really helpful at the time and supported me a lot.

We looked into the possible triggers and found that chocolate, stress and ‘the customary thing with women’ were my main triggers but also Monosodium Glutamate triggered it which meant no more Macdonald’s meals and that I have to be careful which Chinese takeaway I eat from.

My cycle was about 2 years long. I had headaches every day for a year then about a year headache free. My headache period always began with a full blown vomiting migraine then I’d have one at the end of the headache cycle. Over the years I’ve also learned that when I see an ‘aura’, I’m going to have a headache within 15 minutes which means that I need to take my medication. For me, my aura was always like tiny flashes of light in my eyes.

Cluster Headaches meant that when I married Riversystem, I wasn’t able to take the combined pill so we had to look for alternatives for contraceptives. During cycles, my life became pretty difficult because I had to cope with blinding headaches and the problems that came with it and employers who had never heard of them and treated me like I was making it up. This was in the days before disability discrimination was made a criminal offence in this country. It got to the point at one point that I had to take a month off work when my headaches and stress was at it’s worst.

When I began suffering with fibromyalgia, I was in the middle of a cycle. It seems that pregnancy is another trigger… Anyway, the rheumatologist prescribed gabapentin about 4 years ago. The actually helped a bit but I wasn’t able to take my migraine medication because I was on antidepressants.

Four years ago, I was prescribed antipsychotics for depression with psychotic symptoms. The whole time I was on them I didn’t have a single headache! I thought I was cured! I didn’t even have a migraine after eating chocolate. However the side effects of the antipsychotics were horrendous so I was pleased a year ago when my psychiatrist asked me if I’d like to come off them. When I came off them, I had a few migraines with the Discontinuation Syndrome but they went after about 6 weeks.

A month ago, I came off the Gabapentin because I’m now taking Tapentadol which does the same job without the effect on my memory that Gabapentin has! About the same time, RiverSystem handled my food after he’d handled his scampi and hadn’t washed his hands. (I’m allergic to shellfish!) This set off a migraine. I started having Cluster Headaches again after it which culminated yesterday in a headache that was so bad that RiverSystem phoned the doctor to ask for advice. He couldn’t see me yesterday but told him to get me some dispersible aspirin. I don’t take aspirin because I know it has an effect on your stomach. Anyway, it was vile but it took the edge off the pain.

I’ll be heading down the doctor’s on Monday to talk to him about it and see what I can take. I’m allergic to codeine and there’s a lot of migraine medication that I can’t take because of the antidepressants I’m on.

Do you suffer from migraines or cluster headaches? What do you take for it?

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