Back down to 4mg for the past 4 weeks and nothing has changed.
I had an initial consultation with a neurologist this morning as the latest attempt to get to the bottom of my chronic fatigue and shaking/sweating/nausea episodes. He confirmed there was no sign of neurological problems, which was reassuring but not unexpected. From a steroids point of view, his explanations were much clearer than my rheumy's.
First, he said that it was unlikely that my episodes were vagal attacks, as he would expect them to be accompanied by low BP and bradycardia - whereas they are normotensive and tachycardic. Second, he agreed with my rheumy that a disturbed adrenal system was not obviously implicated. This is because the episodes peaked while I was still on a higher-than-physiological dose of steroids and because the full body scans I'd had showed no adrenal tumours.
The conclusion was that for now, he could only suggest further attempts to improve sleep "architecture". But his suggestions were precisely opposite to my rheumys - to cut down the amitriptyline and not to start the gabapentine he prescribed. Instead, SSRIs might help reduce dream sleep in favour of increased deep sleep. So it was good to have been checked out, but I am no closer to resolving things. Endocrinology is next!
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whisperit
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Further down the medical rabbit hole I'm afraid, old chap. I do hope you get somewhere soon. I haven't heard of SSRIs helping with quality of sleep ( certainly didn't for me) If you get any prescribed, do some heavy duty research. In my opinion, some are the devil's brew x
From a quick search, it looks like SSRIs decrease the amount of REM sleep - which is often elevated in people with depression - and people on SSRIs apparently report better sleep quality. However, there are lots of caveats, not least that objective measures of functioning seem to show that people on SSRIs are actually sleepier during the day and have more interrupted sleep. So the perception of better sleep may be an illusion produced by better general mood.
My sleep is certainly jam-packed with dreams, and this is I think what the neurologist was suggesting - taking SSRIs could reduce the amount of REM sleep and possibly increase more refreshing sleep.
There might be something in this. So glad you didn't take the gabapentin. As you know, that gave me 24/7 "dreams". To balance out my bipolar disorder, I take a small dose of an anti epileptic med. On starting that, I had technicolour, glorious dreams. If I'd had a camera in my head, I'd be in Hollywood.
Synapse tinkering may be of help for you. Sounds like you really are in need of decent quality sleep. Can only send a hug x
Well done Mike. Getting down to 4mg is a great achievement!!
I know this might sound a bit odd but I've tried every sleeping tablet in the BNF. Some have worked with minimal effects others haven't touched me. The thing that works for me is almond milk. Its literally like propofol for me! One glass and I'm out for hours. Just an idea, maybe give it a go? Works for my cousin too so its not just me!!
Thank you happyt. Now that is a suggestion that I can get behind 100%! Especially as my daughter is insisting on vegan milk these days. I will try it immediately! x
Careful, I tried it in a breakfast smoothie once and had to go back to bed for 4 hours! The ironic thing was that it was one of those days when I had actually woken up with that stuff called energy!!
Noted. Oh, the other thing I dodn't mention yesterday was that during the examination, the neurologist said, "Your neck glands look swollen...oh no, that's the steroids". Even though I can see the effects in the mirror every day, it's still a downer when someone else points it out! x
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