Lux sleep light & amber glasses at night - Functional Neurol...

Functional Neurological Disorder - FND Hope

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Lux sleep light & amber glasses at night

Junebeatle profile image
8 Replies

Hi,

I was wondering if anyone had success managing sleep issues from FND with light therapy? My sleep is the worst it’s ever been and I’m too sensitive to medications and supplements (tried them all) I’m having difficult time cognitively (which usually i’m ok)!

Appreciate feedback

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Junebeatle profile image
Junebeatle
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8 Replies
BuntyP profile image
BuntyP

Hi, I found turning the brightness down on the TV in the evening, getting an IKEA mattress topper, using CBD Brothers purple cannabis paste and having a relaxing lavender scent all help me sleep. I went from 4 hours a night to over 7. I always have Radio 4 Extra on overnight so that when I do wake up, instead of getting really stressed that I'm not asleep, I remember that lying nice and relaxed in the dark is nearly as good, and listening to the radio distracts me so that I drop off again

quite quickly. Good luck!

GentleFlower profile image
GentleFlower

I have had FND for 22/23 months and all my symptoms run in cycles so I am stuck in a vicious cycle and at the moment I have insomnia not being able to sleep at night and having sweats too I have to move to another bed to get a comfortable dry area. It’s crazy. I take cocodamol (only when my pain is intense) which makes me very drowsy and used to knock me out but now Nothing helps so will try and see what others have to say here. Thanks for posing the question. Looking forward to feedbacks 😍

thinkin profile image
thinkin

Hi,

I'm five years in. I had terrible sleep to the point I gave my husband problems too. He was sent by his GP for CBT which is the best treatment for insomnia (my husband has CFS, we're a right pair). I was too sick to get out for CBT but I followed what I already knew and his CBT info.

It does take a while of plugging at it to get yourself back into a rhythm and I've slipped off the wagon occasionally, but it's only a set back. It does really make a difference to my FND. I know that it helps to sleep in a regular pattern. Even, and it will be something that you will think is crazy, but you have to sleep less.

I think that light therapy is expensive. If you can get out into the daylight for a daily session it will be a cheaper alternative. You can get vitamin D through a supplement. I use sublingual sprays as I don't absorb enough through my gut. Daylight will also help you make serotonin.

As for supplements there are some you should keep with even though you can't see any difference and they are vitamin B12 and D. Personally I'd add vitamin B6 and the rest of the B complex as they work together as a complex. Maybe if you have been taking the D and B12 orally it could be that you are not absorbing enough through your gut and consider the sublingual sprays. There are a few to choose from on Amazon. I didn't see any benefit from tablets. It did take several months before I could see any benefit.

Anyway, your GP should be able to refer you for CBT, otherwise it's trolling the internet and taking up tips for sleeping.

Good luck. x

Junebeatle profile image
Junebeatle in reply to thinkin

Thanks, I’m already doing CBT for anxiety & depression that showed up with this last flare. My doctor said it could be my ldn I take for Autoimmune & to back it up to day dosing. I work & drop off kids at school so getting sunlight is not feasible. I ordered the lights I’ll report back how they go

thinkin profile image
thinkin in reply to Junebeatle

I suppose if you are sharing a household then amber glasses might help too. I have blue light filter on my phone - nightshift - you can set a timer so it comes on to suit your needs. Also turning the lights down in the evening will help. I have to say no screens past 9pm is a good rule. Lots of old fashioned books or an old style kindle. Lots of tips out there. Good luck.

Junebeatle profile image
Junebeatle in reply to thinkin

Thank you! Appreciate the feedback. Nice to have FND friends

Junebeatle profile image
Junebeatle

I’ve been using lavender essential oil for awhile..my sleep was excellent for a long time on my Autoimmune medication ldn, until I got sick with 2 viruses in one week and FND was re-triggered. I’m using acupuncture and started infared sauna this week too. The lights should be delivered today. It’s better than sleep medication that my doctor suggested (those all have side effects and make you feel zombified, which I already feel spaced out most of the time with this illness)

Junebeatle profile image
Junebeatle

Well the lights and glasses seemed to do nothing to help...my family even thought maybe they were making me worse. I’ve discontinued them for now. Sleep is still unrestful (such darkness & bags under my eyes) but I’m more afraid of the prescription sleep drugs. It doesn’t seem like those get you actual restful sleep either and lots of side effects.

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