Encephalitis and Sleeping

[Cesar68]

I am approaching 1 year with Viral Encephalitis, and my biggest issue is sleep. Either my brain does not shut down and I cant fall asleep, or I wake up around midnight with Insomnia and can't go back to sleep. I have tried many medications, but still struggling with approximately 3-4 hours per night at best.

Just wondering if others are going through similar issues, and what they are utilizing to sleep.

Take Care

Cesar

[HSE_Survivor]

I fall asleep instantly, but then I wake up in the night and can’t get back to sleep. Reading some of my old favourite books from the 1980s and ‘90s on my Kindle or iPad helps. Using the Kindle means I don’t have to turn the lights on. Those plots of those books are still in my long term memory , so reading them is do-able, but the effort of remembering the plot wears my brain out and makes it ‘switch off’, so I end up falling asleep with the Kindle on my chest. It doesn’t happen instantly, but I get at least 5 hours sleep a night doing that . My golden rule is not to look at the clock.

I hope you find a solution, too, Cesar, as insomnia can be really tiring .

[Wygella]

I’m 6 years in from HSVE and unfortunately sleep is still an issue with me too. Like HSE survivor I usually fall asleep quickly (not always) but then anytime between 2 and 4 I wake up. Or I wake up every hour or so which is actually when I feel more tired. I usually give myself half an hour as sometimes I do go back to sleep. Otherwise I too read a book and try not to watch the clock. I’ve found I actually function quite well on about 5 hours sleep. Then every couple of weeks I get two or three decent nights. Then off we go again. I don’t know if you’re married but my husband sleeps separately but then he comes back to bed when he wakes up so we do have some time together. Otherwise I don’t think either of us would sleep at all.

HSVE affects all brains differently. But I think we all have increased anxiety which in some of us seems to lead to this particular over active brain issue. I think the secret is to accept it and relax your body and brain. haven’t quite achieved this myself yet but am getting there. I hope this makes you feel less alone at night knowing there are others awake too!

[Archer6]

I've had trouble sleeping and I learned some things that may help. First, the blue light emitted from screens may be tricking your brain into thinking it is daytime and making it more difficult to fall asleep. I avoid screens before bed. Second, I take melatonin a natural substance an hour before I go to bed, I think it helps and was recommended by one of my doctors. Third, I use an app on my iPhone called "Sleep Cycle" that listens to me sleep and shows me how much sleep I actually got when I thought I only got one or two hours it may turn out to be six or seven. Fourth, I read somewhere that just laying there quietly and calmly is almost as restful as sleep. That helps me to not stress as much about how much actual sleep I got. Hope this helps.

[Gandalf2]

Hi Cesar, I'm sorry to hear of your situation - lack of sleep quickly makes me very unsettled and panicky. Noisy hospital stays can be a nightmare.

I have auto immune Enc. so may be different to viral Enc. I can only suggest the usual recommendations - don't watch TV, laptop, reading etc. so the brain can slow down. Exercise before bed is good. I use a rowing machine and can walk a mile or two. Avoid caffeine. Fatigue is sometimes a big issue and I am only able to do a bare minimum of tasks. I'm in my fifth year of recovery and progress can be slow.

I have a severe spine injury so I take 2 paracetamol and 10mg morphine sulphate for pain relief when active during the day and also when going to bed. This may make a difference, some medications make sleep difficult, some help. I take medications for anxiety and panic attacks too. Drugs.com gives lots of info and patient reviews - worth a look.

Last night I had a hot bath, took the paracetamol and morphine along with my usual meds and slept for 12 hours. When I woke up I felt as though my brain had been doing some repairing. I spent the day doing some DIY and normally would have to bail out after a while but I was able to keep going and didn't get confused as I would normally do. It's a massive change and I hope this continues.

All in all, I find recovery can come in spurts and you may stumble on something that works for you. I couldn't have expected today's improvement in my mindset and don't really know what brought it on. Fingers crossed it continues.

Best wishes for your recovery, G2

[Tuesando]

Hi Cesar. I understand your difficulties and frustrations. My partner had encephalitis 4 years ago and struggles badly with sleep. So many people seem to have so much advice and we often feel that it’s difficult to listen to the ‘why don’t you just…’. It’s a real struggle that colours you whole day. My partner tries to adapt his life to his situation. Trying a more fluid approach to the day. Don’t know whether that will help you but we feel your pain and frustration