Tuesday Round-up for Friends

2008 November 26

(Even if it is Wednesday again.)

Yesterday I had my three-times-a-year review from my pain specialist. As expected, things are not looking good. The epilim (sodium valproate) looks like it’s reducing the severity and duration of the pain phase of my migraines. But it’s doing nothing for their frequency, or for the severity and duration of the aura and postdromal phases. And nothing for the persistent aura, as it turns out. So while the actual pain is lessened, the overall impact of migraines on my life isn’t reduced that much.

Anyone not familiar intimately, first hand and in person with migraine probably can’t appreciate this. So a quick recap. Migraine comes in four phases, that may overlap somewhat (skip this bit if you already know!):

  • Predromal. This is the build up to what others may think of as the main attack. It can lack any symptoms, or have subtle symptoms (such as depression, a craving for a particular food, irritability, etc.) What happens depends on the person. As I’m not aware of this phase, I don’t know how it affects me.
  • The aura phase. Not all sufferers have this phase. It can overlap or even extend beyond the pain phase. Typical aura include flashing or strobing lights, tingling or numbness. Rarely, and sadly not so rarely for me, this can include more severe symptoms such as partial paralysis or (in my case) affects on consciousness. These can include loss of language, jamais-vu (where familiar faces, objects or places become unfamiliar), confusion or other forms of hallucinations. For me this phase usually precedes the pain phase by half to one hour. Though as I have persistent aura, I get less clear warning of an impending attack than I used to have. In some cases for me, the pain phase can start a day later.
  • The pain phase. The level of pain both differs from in form and exceeds the pain of a normal headache. Untreated, it is often accompanied by nausea and/or vomiting. Sources such as an article published in New Scientist liken the pain level as exceeding natural childbirth or a gunshot wound. My own pain varies, but even the mildest severely limits what I can do. The most extreme includes stabbing pains in one or both eyes with even the slightest movement. But it is this phase that the epilim seems to be reducing. On epilim, it appears so far, I typically get three hours of pain phase per week, tending towards the milder end (which still exceeds what I would call a “bad headache”).
  • Postdromal. This can be a feeling of wellness or even euphoria. Or, as in my case, it can be an extended period of confusion and physical weakness and tiredness. Again, the aura and pain phases can overlap with this. The postdromal phase can be as long as, or longer, than the pain phase. Nothing yet tried has changed this, and this phase for me can last beyond the pain phase anything from an hour to twenty four hours.

In the case of my complicated migraine, both the pain and postdromal phases affect what I can do. The attacks range from “mild” to “severe”. Think of it as ranging from combining being very drunk with a normal hangover to beyond the worst hangover you’ve ever had and being beaten about the head with a brickbat while someone stabs your eyes with red hot needles. You get the idea. Well, so far we’ve started to do away with the brickbat and the red hot needles. But not, sadly, the worst hangover you’ve ever had. Or the being drunk. Or how often they happen.

So why are things not looking good? My specialist says that most medicines used only treat the pain phase. There aren’t that many that are used to treat the postdromal and aura phases. Then rattled off some names too obscure for even this humble wordsmith to forge into a belated Tuesday post. So he’s going to write to my GP to suggest upping the epilim dose and review me (for the last time I suspect) in May. In May. Half a job done in two years. What about the rest then? I’ll have to have a chat with my GP if the higher dose doesn’t make any impact on the postdromal and aura phases about what extra things we can try.

For me this is a problem to be solved. The physiotherapy, such as there was he could suggest, on the underlying cause of damage to my neck hasn’t helped much. The pain phase is improved. We’re getting somewhere. So if there’s medication out there, why aren’t we adding that to my regime to try to now make an impact on the remaining problem? But the best part he saved till last…

“The problem with being away from a working environment for so long is that is starts to make an impact on one’s quality of life.” He said. Obviously I’m paraphrasing as I don’t recall the exact wording. “Things have improved on how they were. In August when off the epilim for a while, you were having daily migraines. Now they’re about two days per week. At some point you need to test the water.”

Test the water!!!?

What employer would take me on while I will still be off, without predictability or warning, an average two days per week? And how is it reasonable to expect one to? What I need is the job completed, the problem solved so that I can get back to work and be there every day of every week again… bar the odd day here and there as before. Not to mention the unimportant point about how the social isolation of this illness is affecting me as a human being.

How about we test an extra medication regimen?

I’m angry.

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