Sleep Study and Polysomnography and nowhere to turn?

General Discussion
#1

So my GP referred me to a hospital that has a sleep unit about 15 miles from where I live in the UK.

Was referred back in May 2020 so I have been involved with them for just over a year .

I’m interested to hear what other peoples experiences where from doing sleep studies…

I basically did two actigrqphy studies (wearing the watch) and then did a full Polysomnography back in May where I did not sleep at all .

Of course I was actually pleased at that , as I wanted them to see me on a bad night and see what it is I go through .

3 months after my Polysomnography and they finally call me today as I had been waiting to hear the results and they say to me over the phone - you didn’t sleep at all during the PSG what happened?

I’m like ….you’re asking me what happened ? That’s what I want to know from you for crying out loud!! Isn’t this your job to tell me why I’m not sleeping !

Of course as you can imagine they didn’t suggest anything further except doing online CBTi courses for insomnia . Great.

So now I’m at a further loss on what to do as I have now wasted nearly a year and a half going to a sleep centre to have them tell me I need to sign on and do a fucking CBT course .

I mean generally Mirtazapine has improved me ….but I still get the odd night of zero hours every two to 3 weeks and they seem to be picking up in frequency again .
Shall I try going for a private neurologist or as this is a neurotransmitter issue perhaps a functional MRI scan ? Thoughts please , cheers in advance

#2

I am sorry to say this, but you need to re-book another PSG and this time take whatever that you take for sleep. You need to be asleep for the study to rule out things like restless legs or sleep apnea, etc.

Personally PFS has altered my sleep breathing and made my sleep apnea dramatically worse. I don’t know if my sleep apnea has improved over the years, but what PFS has permanently done to me is made me intolerant of higher pressure settings on my CPAP machine so that unless I decrease the setting, air would make its way into my stomach, pumping me up like a tire/tyre at night.

So my advice is go take the study again and this time make sure you get some sleep with the help of sleep aids.

Yeah, I assume our neurosteroids are fucked. They can’t really help you with that. Chances are, doctors don’t even know what that is.

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#3

Ah thanks for the info ! Perhaps I could dig into a Zopiclone for the night to make sure I’m asleep…I’m trying not to use that stuff but it does help me nod
off super quick .

Yeah that’s what I guess they were getting at today , they couldn’t measure any of the brain waves etc during the Polysomnography . They have offered a retry of the PSG and I’m in the UK so it’s free thank goodness if I do.

How have you been getting in lately ? Any breakthroughs??

#4

Sorry, I forgot to reply.

I want to give you hope but I don’t want to jinx myself as I am sort of on a downswing now. I had severe insomnia before PFS so you can imagine how much worse PFS made things for me. I also have made my PFS insomnia worse with supplements throughout the years. For much of the last few years, I consistently could only stay asleep for like 3-4 hours at a time thanks to PFS and these subsequent worsenings either with supplements or endocrine disruptors through other sources. It was unthinkable that I could ever sleep for 7-8 hours at a time again.

Anyway, my insomnia naturally improved months to a year following the initial onset of PFS and these subsequent worsenings. I am now at a year and 2 months after an accident that cause a rebound of PFS symptoms/insomnia. I made my biggest mistake with a supplement yet since getting PFS very recently, but that’s another story. At the moment my sleep, while far from optimal, actually feels better than even pre-PFS. I still have awakenings every night, but they are brief and I am no longer sleeping in segments anymore or rarely. My energy levels are still not very good, but at least my body doesn’t ache of exhaustion like before.

I believe your body can surprise you just as positively too. My biggest regret was playing with supplements and not staying disciplined with mind-body solutions like meditation or even trying CBT-I which from what I’ve read is the gold standard treatment for insomnia and is supposed to be cause-agnostic/helps no matter the cause of the person’s insomnia.

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#5

Thanks for your info here, so perhaps you think trying CBTi might not be that bad??
Definitely gives me hope hearing you are doing better, I have followed your struggle since I joined this site and I know you suffered really bad at times .

Mirtazapine has really taken the edge off of things for me. It doesn’t give me that drowsy feeling (it did for the first week then wore off ) but it just seems to reset things a little. Hopefully at some point I can transition over to Magnesium and Taurine ….I have a feeling that will help as magnesium was pretty good before. I’m also counting on that hope that my body will suprise me as you say , :crossed_fingers: