Sleeping....Well not sleeping

[Lovesfurbabies]

Hi all, I recently got diagnosed with FND after a few years of constant unexplained pains,passing out and falls. I finally got diagnosed with it after i was rushed into hospital with a suspected trapped nerve. Taking tablets for pain relief and setraline that's become part of my day to day life. Now I'm wondering if anyone has found a way to actually fall asleep at night, it's not by no means because I'm not tierd believe me I'm shattered. I've tried meditation, sleep hypnosis, sleeping tablets. Nothing seems to work to enable me to go to sleep. I'm lucky if I get 4 hours a night most days. My memory and concentration is going down hill fast. My grandads memories better than mine and I'm only 28.

So what I guess im trying to ask is, any ideas how to help me sleep ideally without taking me tablets coz I'm sick of taking the things 🤨

Thanks in advance and thank you for taking time to read and hopefully reply

[Runvirgo]

I had the same issue for 6 months. Even NyQuil bothered me, out of desperation I tried Unisom and it's the only thing that helps and doesn't cause seizures. If you haven't tried that yet, maybe it will help you too. I know how horrible lack of sleep is, especially when also dealing with FND.

[Lovesfurbabies in reply to Runvirgo]

Thanks for the reply, I'll give it a go. It's driving me insane. What stopped you from notbeing able to sleep in the end if you don't mind me asking? Did it just sort itself out?

[Runvirgo in reply to Lovesfurbabies]

I'm sorry, I completely understand your struggles. I'm still doing the unisom before bed; been using it for a little over a month now. Before that I was maybe sleeping 2 good hours a night. I also try to do progressive muscle relaxation when I get into bed. I meditate to help my symptoms throughout the day and really find the body scan helps. Breathe deeply in your belly, breathing in through your nose and out through your mouth, trying to find where your holding onto tension and breathing the tension out. I have horrible neck and shoulder pain and that does help calm it down to an extent. Unfortunately, nothing is a cure, just finding what works and doing it. I hope you can find a way to sleep soon!

[CreativeCraftyCats]

You could try taking level 1 reiki then you can lie in bed and focus on yourself and hopefully it will help. Try reiki first and see how you feel afterwards I always fall asleep after but that could be just me. If you find someone that is a master to give you treatments first so then you can work with the same person for level 1 if it helps you.

Hope you find something that helps you soon. 😺

[Lovesfurbabies in reply to CreativeCraftyCats]

I'm abit sceptical about using reiki. My mother in law is a master in it but I have my own beliefs about the spiritual world and I really don't want to be calling the wrong kinda of spirt. My mother in law used to use it on herself and her health has gone down hill since using it. But thankyou for the suggestion.

[CreativeCraftyCats in reply to CreativeCraftyCats]

Hopefully you find something that helps you soon. 😺

[Junebeatle]

I used TMS + Valium..Valium helped my shaking to sleep til 3 or 4am. Transracial Magnetic Stimulation helped my sleep until 7am and memory, concentration. I still have FND, but it’s more manageable than it was.

[Lovesfurbabies in reply to Junebeatle]

Are there any side effects of the tms? Altho this is something ive never heard of I will look into it. For some strange reason my body gets used to tablets very quickly, I started in amitriptyline and went from 10mg a day to 100mg a day in the space of a few weeks. It all seems never ending. Thank you for the reply tho. It's lovely that people are taking time out of their day been dealing with all this on my own so lovely to help a little help. 🤗

[Junebeatle]

Lovesfurbabies headaches & fatigue can occur during treatment, but resolved afterwards. It’s helped me a lot. It corrects neurotransmitter levels in the brain to allow it to operate more appropriately. Also brings blood flow and additional glucose into areas of the brain that are working less efficiently. It’s done with a good psychiatrist, I wouldn’t go to a large center.

[Junebeatle]

By the way it stands for Transcranial Magnetic Stimulation

[Lovesfurbabies]

I'll definitely look into that. I've been on antidepressants for a good while now. I don't know if the fact I've gone from one tablet to the next but sleeping is something I've struggled with for well over a year, it just seems to get worse.

[Penguin33]

Hello

I get reiki treatments every other week that has helped a lot with sleep

I hope that helps!

[thinkin]

Hi,

I've had FND for years and I'm recovering now. I did find that poor sleep can make symptoms worse that in turn lead to poor sleep. It can be a horrible downward cycle.

I ended up copying my husbands CBT. He was referred by the GP, but I was too ill to go so I just copied. I googled all about sleep habits. I do need to keep a strict regime. I no longer need tablets and I sleep a lot better. It's not nice having to force yourself awake at first, but persisting works. In fact I do better on less sleep now.

A strict sleep regime and habits. Getting enough daylight outside (windows block out too much light). Turning down the lights in the evenings. Milky drinks and a banana before bed. I get into my PJ's early as part of a wind down as I have to do quite a lot before be for my eczema so I get it out of the way and leave myself time to wind down after. Light filters on my phone and no computer screens past 9pm. I listen to audio books from my local library online. Find what works for you.

Sounds like the sleep regime of an OAP, but it works. It also helps symptoms. If you have migraine consider a mouth guard as it can affect your breathing in your sleep too. So see if you can get a referral for CBT or look into doing your own if you are too unwell to go.

There's too much to put on here, but CBT is the most effective treatment for insomnia.

I hope this helps. I can get better. xx

[Lovesfurbabies in reply to thinkin]

I've been referred to CBT by my doctor and awaiting contact from them. I seem to be getting alot worse, my partner had to lift me out the bath the other day, I'm slowly loosing my independence. I've tried getting into a routine at night, hot chocolate and no screen time, meditation, listening to calming music, but yet i still find myself staring at the walls at 5am after getting into bed at 10pm. It's horrible for a person at my age like this, altho I know there are children that have it worse and I feel for them. I'm more worried about how my partner is going to cope as I've always looked after him and now the tables gas turned. Sorry off subject abit, I havnt really spoken to anyone about this as have no family. Half the Medical professionals don't even know what FND is and it's tedious explaining it to them aswell.

[thinkin in reply to Lovesfurbabies]

Hi,

Yes it's far from easy. I know where you are coming from. I was lucky to find out what was driving my FND after 5 and half years. I rely on my husband who ended up with chronic fatigue from pushing himself too much and then flu polished him off. He has insomnia too and has to sleep in a different room now. FND is not great for relationships. I'm used to being the coper. It's hard to get your head around it all. And as for my family, well I don't have one either, just hubby and my best friend.

Take care, xx

[Lovesfurbabies in reply to thinkin]

I'm very worried the relationship is going to go down hill, last thing I want is the be a burden to anyone. Seriously considering a care home the way things have been going. Surely there more to life than tablets and pain etc. It's lovely that your husband was there to help you, sorry it dragged it out of him. Don't think I'm lucky enough for my partner to go out his way that much (he gets grumpy if he has to wash up a spoon) I've moved away from all my friends and not allowed to speak to them so it's made sure I rely entirely on my partner. Did you find it easy to explain to your hubby what was going on with you as mine just thinks I've got a screw loose and addicted to pain relief which is most deffinetly not the case

X

[Hidden]

I know this is a late reply but think it's worth submitting. I have severe insomnia which will last for several weeks on and off. The only thing that has worked for me (including Ambien etc) is listening to audio books. I get them thru an online application from my local library for free. The application has a timer you can set in various increments to automatically turn off. I hope this may help someone else. It's a great non pharmaceutical....and yes I use Biofeedback/deep belly breathing also when my insomnia isn't bad.

[Brear29]

I have problems of sleep? Some nights I go later then up a couple of hours later and during the day I,m a sleep because I stuffer with CFS , I,m on 200mg of Sealine day and not working on me . I stuffer with Musculoskeletal system has well plus in pain 24/7 and the FND ?