Insomnia

[jmeg24]

Does anyone have trouble sleeping? My mom is one year post-HSV encephalitis and she cannot get more than a few hours of sleep each night. We can’t figure out if it is her ABI or her Keppra. She doesn’t nap during the day. She’s tried all the normal recommendations for better sleep (no electronics, no caffeine, etc). Her doctor has prescribed a few different sleep aids and she has reacted negatively to all of them. Even melatonin is difficult for her to tolerate. As you can imagine, only getting 3 or 4 hours of sleep is taking its toll on her. Anyone else been through something similar?

[Paula-38]

Hi jmeg24, I had the same diagnosis as your Mom, just after my first birthday, I am 40 odd years post HSV Encephalitis so I would have been 2 when I was in her situation.

However, I have suffered from severe anxiety , paranoia ever since, and in the last 20 odd years Obsessive Compulsive Disorder referred to as OCD .

I have often experienced insomnia as a child because I was bullied at school so that made me really depressed and I hated school although my secondary years were a bit better . It was when I was 12 or 13 I had really bad insomnia, I have also had it on and off throughout my adulthood when I kept relapsing with my OCD, and I have had it recently. I have had many of nights where I have only managed to get 2 hours before today and then during my waking hours I couldn't function because I lost a lot of sleep through my OCD and anxiety so it's a vicious circle.

Is your Mom worried or anxious about anything because that wouldn't help, and could be the problem but I don't know everything about your Mom's case. Is one of her after effects fatigue? Some people have that but I don't. It's just that I am going to bed when people are getting up and getting up when people have had lunch.

I don't think it would be your Mom's Keppra because it is like Phenytoin which I have been taking for 35 years, and that had nothing to do with it, it was more anxiety "fear" related.

In my opinion it would be your Mom's ABI but I am not medical, I am a volunteer that's all.

Hope this helps you and your Mom.

Paula _38

[alpappy]

I sleep lightly get about 5 hours when I used to get seven but it's ok

[OldGnome]

Good early morning jmeg24!

As a survivor of viral encephalitis, recovery has been quite a challenge, with many things changing over time. When I was one year into recovery, like your Mom, I was also not sleeping much. I was also told to take a large dosage of Melatonin, which seemed to help mildly, and only for a couple of weeks before it lost its effect. Somewhere in year number two, I began to sleep a lot more. Unfortunately, now I need to sleep for 15 hours to be at whatever peak of energy I will have! Now I am trying other things to try to reduce this sleep requirment.

In a nutshell, it appears that the brain will take time to get back to whatever "normal" it is capable of. For some people, that will take longer than others. But your Mom is certainly not alone in this ordeal. All we can do is wait and hope for the best as time progresses.

Hope you and your Mom have a great weekend. Perhaps some special items on the grill are a good idea!

[so_rogers]

Hi,

I had a different type of encephalitis (Anti-NMDAR) but I do think that keppra affected my sleep. My sleep was a lot lighter and easily disturbed, I would often be awake for long periods during the night. Though I can’t be sure it was all medication related (anxiety re illness definitely played a part) it certainly improved when I eventually came off my meds. She may have already tried but I found a couple of podcasts which were ‘nothing stories’ - literally stories about someone making soup for example. Enough to distract the mind but not interesting enough to prevent sleep! I found them very helpful. The one I used most was ‘Nothing Much Happens’.

I really hope she finds some sleep relief soon!

All the best,

Steph

[AliBBeerDrinkerSing]

Hope she manages to get some sleep soon! I am fairly new to autoimmune encephalitis and have the opposite problem- I sleep a lot and normally nap during the day to make sense and not get grumpy in the evening! I’m not on either of the drugs your Mum is on, but plenty of others 😂 whilst in hospital I used to sleep most of the day and be awake at night 🤷‍♀️