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[whisperit]

Hello, I've been posting on the Lupus UK site for a couple of years now, but have reached a state of desperation over one particular symptom - chronic insomnia.

I've had a sleep study done ("you have chronic insomnia"), and as a result am being seen by a psychologist for sleep-CBT. So far this is not going too well! Neither melatonin nor zopiclone has helped and of course I've been doing all the usual sleep hygiene stuff for ages.

So if anyone has any ideas, no matter how off-the-wall, unorthodox or wild, I'd love to hear them! Thanks

[WestysWifey34]

For some odd reason, no gp will give me melatonin & they refuse to tell me why they won't. All I get is that people my age (I'm 34yrs old) can't have it, so that's been out of the question for me.

I have however tried every other sleep tablet going, ones that are specifically designed to aid sleep & also ones that are made for other illnesses, for instance to treat depression or epilepsy, to relax all your muscles etc & some of these only worked for 1 night then I was back to square one again & others didn't even knock me out for an hour let alone a night. I have come to the conclusion that I'm not going to bother with these again as they are extremely addictive & also can't be maintained long term so are pointless.

I also suffer from depression, mixed sleep apnoea and also chronic pain & I have read quite a few articles that have all said depression does mostly cause people to get insomnia & it is also a side effect of a lot of antidepressants as well which does impact a depressed person's sleep massively.

I got given a ASV machine after I had a sleep study done with my sleep consultant thinking that my sleep apnea is what causing my my insomnia but also the extra reason why I am always so exhausted & don't ever feel refreshed when I wake up even if I manage 3hrs sleep was because I don't go into any of the different sleep stages like REM, light sleep etc, that others do, if I manage to fall asleep I go straight into deep sleep & that is the only stage I have.

He told me that the normal amount of deep sleep was 20% that people should be having & that my score was so abnormal that he has never seen anyone with a deep sleep score of 84% throughout his whole career! So the sleep apnea and the abnormal amount of deep sleep I have is what's causing my insomnia & by putting me on the ASV machine which is basically like a cpap machine except for an ASV being for people who have mixed sleep apnea but mostly have central apnoea & that will solve my insomnia problems that I have had now for almost 2 & a half years.

Well it didn't & has in fact made my insomnia so much more worse than I even thought was possible, which has left me waiting for my appointment to come round so I can see him to discuss what other options there are for me.

The only thing I can really suggest to you is that you should always make sure that your head is completely empty by the time you get into bed & either listening to real white noises if you can or via a white noise app can help some people or by listening to guided meditations, even just normal meditations or sounds from some insomnia apps that have the sound of rain falling down, ocean waves, birds singing, crickets chirping etc & then trying to picture yourself within that setting (if you chose the ocean waves while you are laying back watching all your problems float away & u now don't have a care in the world or any worries of life & you can just lay there, start to feel weightless & free while listening to the calming sounds of the ocean waves for example.

With depression I think a lot of the time the insomnia is aided by our minds being so busy & overwhelming (even when we might think that they are clear). So try your best to get rid of your usual thoughts & especially the thought of "I'm not going to sleep again tonight & I'm gonna be so exhausted & unfunctionable come the morning because of last night's lack of sleep again (that's the worst of them all that is.) But also remember to check your antidepressants to see if sleep disturbance/ insomnia is a side effect of them & if it is then go back to see your GP & ask if they can change you over to another antidepressant that won't have any effect or impact on your sleep & hopefully that will help.

Also make sure that you are still under a consultant at the sleep disorder clinic that you went to as you should be until they manage to get your insomnia either much better or gone.

Hope my advice helps you in some way & I wish you all the best with getting plenty of amazingly decent, long & restful nights sleep & waking up in the morning feeling refreshed every night from now on. 😊

[whisperit in reply to WestysWifey34]

Thank you WW34,

I will have a think about all you've suggested and see what I can do.

As far as melatonin goes, my GP explained that the local protocol is that they will only prescribe it at the request of a consultant neurologist/sleep specialist. My consultant said he was happy to give it a trial, but that - as you say - basically no drugs improve sleep quality. Even those that make you fall asleep lose their potency after a while and you are left with nothing but a nasty dependency. This is not what I wanted to hear!

The only other thing I havent yet really looked into is CBD oil? x