Living with Dysautonomia and EDS – Chapter 4 “Grog the Head”

What living with dysautonomia and EDS feels like – introducing…”Grog the Head”

A friend of mine who made a daily appearance for 6 months, stopped for 2 months and has now come back again is Grog, as I have now named him (aka bear with a sore head).  When he’s in full swing he’s like the hangover (with full on banging migraines) that won’t go away and, over the last 12 months, has become a pretty consistent member of my crew.  It seems it’s all part of the delightful bag of tricks this weird condition brings.

When it flares, I really can’t work out how to improve it. Partly because I’m not really sure what causes it.  Is it the blood pressure or the adrenaline surges which causes it?   Is it a dehydration thing?  Hmm perhaps.  Or as my rheumatologist said it could be the fibromyalgia. All I need to do to trigger it, it seems, is have a busy, fun or stressful day the day before or to have found myself sleeping too flat overnight (sleeping on 4-5 pillows usually keeps it at bay).  Which is where I find myself today!  Ironic that it’s after a visit to Spesh where I triumphantly exclaimed my migraines had pretty much gone. [Note to self – beware sweeping statements when you have a chronic ilness -nothing actually buggers off permanently!].

It leaves me with a thick hangover head and an enduring headache that is not touched by anything, and, when it’s bad, repetitive migraines. I’ve had to completely cut out the alcohol since it just makes it so much worse.

Florinef, at the start, seemed to help reduce the intensity of what I was dealing with but because it ended up making my blood pressure go way too high, and my headaches got so much worse, we stopped it and, like a switch, the worst of Grog toddled off!  So perhaps it was to do with pressure in the head and adrenaline surges?  Who knows.  I thought perhaps he had gone for good (silly girl, why on earth would you think that?) but last couple of weeks he’s come back into my life again – why now and not the other times I have not the foggiest (pardon the pun).

This thing really baffles me some days.  Oh well just hide under the duvet today lovey and stop thinking about it. The head hurts enough right now, you don’t need another brain ache.

Newsflash  – after having had totally enough of my morning migraines and nausea for the last month, I decided to put my super sleuth detective abilities to the test. Rheumatologist asked me what my Bp was like in the morning when I have a headache – it was 127/90. On the face of it ‘normal’ but in the context of other measures I’ve done when I have woken up fine (95/65) not so ‘normal’. So I tested it out with another dose of beta blocker at night and what do you know the blighters have reduced in intensity.

Conclusion – overactive adrenaline is literally doing my head in!!