I’ve always needed a good eight hours’ sleep, and would wake refreshed and ready for the day.  But in the last sixteen years I have experienced chronic fatigue and have been able to sleep for twelve to sixteen hours a night and still not wake refreshed.  I have restless legs that move constantly.  There are only a few occasions in the last years when I have had five or ten minutes where I have felt properly ‘awake’ as I used to.  They are so few that I can even remember where I was when I felt them: one was in a queue in Tesco and another sitting at breakfast.  No perceptible rhyme or reason.  But they remind me of the fog I feel the rest of the time.

One of the most helpful things I’ve come across recently has been material by Dr Alan Pocinki.  He reasons that sleep is a major problem for those with EDS whose autonomic system is not functioning.  One of the results of dysautonomia is the unregulated production of adrenaline and irregular heart rates.  At night most people’s hearts are at rest.  Not so those with dysautonomia.  He says most sleep tests do not test for the heart rate variability which coincides with sleep disruptions.  These sleep disruptions happen with such frequency that REM sleep, the sleep which refreshes and heals, is hardly ever achieved.  No wonder we walk around in a daze.  He recommends various ways of trying to control this.  We cannot cure EDS and we cannot alleviate every symptom.  But if we can harness that elusive sleep, the rest may be that bit easier to cope with. I am trying his suggestions already………

The previous paragraph is a very short summary of his findings.  His lectures are worth listening to in their entirety.  I cannot recommend them highly enough.

CSF Ehlers-Danlos Syndrome Colloquium – Dr. Alan Pocinki    https://vimeo.com/35766364

 

Also: https://www.youtube.com/watch?v=9TxKDVkaDFM

I’ve been having trouble getting the above to work online for some reason.  If that happens to you to, try a written transcript of Dr Pocinki’s lecture: http://issuu.com/markmartino8/docs/ednf2014_pocinki_transcription/0

For help with dosages of alpha or beta blockers for sleep problems, see Dr Pocinki’s lecture notes: http://www.ednf.org/images/2013Conference/Presentations/Pocinki_Nonrestorative_Sleep_2013_S.pdf

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