Tiredness: this is a long story but think some may want to pursue the same medical line.

[Balenciaga]

2012: I'm 51. Diagnosed with ET in 1995; know I had it in 1986. My son was born in 1990: felt exhausted, horrendous & about 100 from that day on.

Before my son was born, I'd always needed at least 10 hours of sleep; always suffered nightmares, anxiety dreams & instant dreaming. After my son was born, I had extreme difficulty with getting a good night's sleep, no matter how tired I was & would go for weeks at a time on 4 hours or less a night. Obviously, it now seems clear that MPDs cause fatigue but for all those years no-one would take me seriously & I KNEW it had to be something more fundamental

Last year, I insisted on being referred to a Sleep Centre (there aren't many about: the only 2 I know of are East Grinstead & Southampton): this took many months to come to fruition as they deal with masses of patients with sleep apnoea. I finally went in overnight & it was fascinating: it took 45mins to stick all the wires on me & I looked hilarious. Weirdly, for me, I actually had 'quite' a good night's sleep!

The results did not show the instant dreaming (the consultant was sceptical about this as he's only seen it in narcoleptics but when I got slightly fierce with him, he clearly accepted it!) &, indeed showed normal REM. However, they did show that, on average, in an hour I had 49 limb twitches & 40 microarousals: effectively, I wake up (though I don't know it) every minute & a half; most people only have 9 microarousals! I have taken the opportunity to say to every single doctor "see I told you I was tired" (sort of paraphrasing Spike Milligan)!

The consultant tried me on 2 different forms of antidepressant that they've found help people with sleep problems but they didn't help me; at the beginning of this year he put me on Gabapentin which is used for neuropathic pain & epilepsy, & which they've found helps some people with sleep: obviously I don't want to take any more severe drugs than I have to (I'm on a few meds) but being desperate for a decent night's sleep after 22 years, I am taking it because it is helping. Nonetheless, because of my constant microarousals & anxiety dreams, we agreed I would go for sleep psychology: again this has taken many months to come to fruition but I've now had 2 sessions...

I've had a complicated health life &, being a tolerant person, have struggled to deal with nasty people: the psychologist says this is all coming out in my vivid dreams & poor sleep (this is me putting it in a nutshell). After the first appointment, I was impressed & after yesterday's even more so: obviously, I hope to come off the Gabapentin but that may not happen; if I can stop all the dreaming & feel like I've slept that will be such a bonus.

There is no question that MPDs cause fatigue but it doesn't happen in everyone: I don't want to swamp the [few] sleep centres with patients but if you can, in any way, relate to some of what I've written it may be worth insisting your GP or haematologist refer you. There is so little knowledge about both sleep & MPDs; so who knows, there could be a connection. If you do go, don't be fobbed off with "well, it is a vicious cycle with insomniacs of thinking you won't sleep, so you don't" etc: I fought against that with the consultant & then the psychologist at the initial meeting; when they took me seriously, they changed tack & I honestly think we are now on the right path.