Bickerstaff brain stem Encephalitis

[Bickerstaff]

I am Chris, I was diagnosed with Bickerstaff Brain Stem Encephalitis in December 2019 together with a stroke. I wrote an earlier entry but not have had a reply, I hope to try again and would like to hear from anyone who has had a similar experience and if they got over it. I am left with pain mainly on my left side from head to my leg. I am incapable of doing any DIY except write this on my pc. I am in despair about the long term effects and how long I can put up with the discomfort

[kitnkaboodle]

Dear Chris,

It sounds like the rare nature of your illness has made it difficult to connect with someone who has had the same disease course. I’m sorry about that. Unfortunately, that is true for most E patients, as far as I can tell. Our inflammatory events and recovery arcs differ, depending on pre-illness factors, the nature of the inflammation such as infectious or autoimmune etiology, and the parts of the brain particularly affected.

I didn’t have Bickerstaff; we don’t actually know the origin of my E. I didn’t have a stroke. But, my neuro-immunology team thinks I had brainstem inflammation during and after the hospitalization, based on MRI. I also had vision problems for many months and still struggle to walk. I have a “zombie” walk, hyper-startle response, moderate to severe involuntary movements, and occasional (non-epileptic) convulsive fits, all of which are better described in my post on “flooding”. I also have every type of chronic pain, migraines, fatigue, numbness (especially as I type now), and more.

I say all of this not to compare our suffering but to let you know you’re not alone in it. I can’t tell you how this will play out for you, even if I were ahead of you in recovery time. I got sick in October 2020, so I’m very early in recovery—as are you, actually. (OldGnome contributed a long comment on my mouse thread about the question of recovery length that’s worth a read.)

From what I can tell, most patients do recover in many ways eventually. I've regained much: can walk (albeit poorly sometimes), eat, pee, speak clearly, think fairly well, sleep more. Over the past year, I've had to completely change my perspective on illness, injury, and recovery. Our brains and nervous systems have been (severely!) damaged. Our bodies and minds have been traumatized. There is no set recovery timeline or arc. Everybody—every body—is different.

I doubt this is what you want to hear. It’s not what I wanted to hear. Like everyone on here, I’ve lost a lot. The suffering can seem cruel and useless. Anger at God can seem justified. Hope can seem lost. But light burns brighter in darkness.

Recently, I read this column ( theatlantic.com/ideas/archi... ) from my favorite pastor, Dr. Timothy Keller. He is dying from stage-four pancreatic cancer. This quote from the article jumped out at me:

“But if there is a God great enough to merit your anger over the suffering you witness or endure, then there is a God great enough to have reasons for allowing it that you can’t detect.”

I have no idea if any of this will be helpful to you. I hope so. But it’s okay if you slam your laptop shut in frustration and don’t respond. I understand. As do we all. You’re not alone.

Take good care,

Kit

[Bickerstaff in reply to kitnkaboodle]

Thank you for your reply.

[kitnkaboodle in reply to Bickerstaff]

You’re welcome! Let me know if you have any questions I might be able to answer.

[kitnkaboodle in reply to Bickerstaff]

Chris, do/did you have trouble with movement? Just wondering if my brainstem inflammation is the main cause of my involuntary movements, poor walk, exaggerated startle response, convulsive fits, etc. You’re the only one I’ve encountered thus far with brainstem E.

Thanks,

Kit

[NebraskaTexas]

Dear Chris,

I'm sorry to hear about your illness. I can only imagine how frustrating it is for you. I am a caregiver for my husband who came down with Anti NMDA Receptor Encephalitis in August 2019. I know it's not what you have but one thing I have learned what has brings people here are different diseases but the similar aftereffects.

My motto for helping my husband is "Repetition, Time Patience and Love". His short term memory is just coming back slowly. He has lost 10 to 15 years of his long term memory. I thank God everyday that he does remember me since we were just married 10 years ago.

At the beginning of his recovery he was very angry because he could not remember things or do anything. He was the cook of the family and Mr. Fix it. He handle everything around the house. He is still questioning at times why this happened to him. I was angry also. I missed the husband that I knew and was upset that I had to constantly repeat everything and now handle everything.

Through this website and counseling we both have grown to accept his limitations. Does this mean neither of us gets angry anymore...no but we're not angry all the time. There are times we can laugh at his bloopers.

I look forward to reading from this website everyday as everyone understands what we are going through. I receive experience strength and hope from here. Very few of family and friends understand anything about our daily life even though we have explained. They expect us to live our life like before and I have accepted that may never happen.

My husband needs a nap every day otherwise his brain gets overloaded by night fall and he will not make sense. We have developed a daily schedule for him which helps immensely.

My husband has been doing physical, occupational and eye therapy on and off for the last year. Even though process is slow it has helped him immensely. Have you ever tried any therapy for your pain?

We celebrate every win. For example when he wakes up in the morning and remembers what we need to do, when he remembers what he did a couple of days ago. etc.

I pray this brings you some hope to know that you are not alone in this battle.

Nebraska/Texas

[Bickerstaff in reply to NebraskaTexas]

Thanks for your reply

[Gandalf2]

Hi Chris, I'm sorry to hear that you have so many problems at once. Enc on its own is a lot to cope with and your physical incapacity must be a double blow. You may have had feedback and guidance from your doctor or consultant on your condition or not. In my case it was pretty much zero. Not even a three fold leaflet.

We had to hammer on quite a few doors before rehab etc. arrived - and it took 18 months. There is a fair bit now and that coupled with daily walks (I had to relearn to walk), reading (Ancient Middle Eastern history and James Joyce at the moment), exploring the Web and taking things one step at a time seems to be working.

I had a walk and a bath on the same day recently and it took me two days of rest to recover. Naps and plenty of sleep seem to help. I suffer from auto-immune encephalitis which means I have to avoid infection and mental stress. I am mobile but not to the extent I was previously, walking is OK, cycling and sailing still to return.

Finding the Enc. Soc. was a big help and there is a lot of information on your condition on the internet, although the language used is very clinical in style. There may be a stroke society that can help with that side of things. I had to relearn to walk and get used to the unfamiliar environment that used to be my home. and that I was married.

I have suffered several spine fractures during my last admission, I've had seven or eight seizures, each needing hospital admission. So I am usually in a fair amount of pain if I try to be active and have been prescribed morphine and paracetamol for that, either as a maintenance dose or to just take when needed. You seem to be in a lot of pain, have you been prescribed any pain relief at all?

I spend a lot of time trawling the net for international news and old music videos from the 60s. I can't shop so Amazon and Ebay are a big help. You don't say if you have any support or aids or whether you are at home or in some sort of support environment. My wife is my main support and tackles most of the admin stuff now. My short term memory is very poor now and I can forget what a sentence is about before I have finished saying it.

I was looking for an active retirement and this hasn't been my cup of tea at all! A slow recovery from Enc seems possible but in terms of years not months. If you've only suffered from colds and flu and the odd sprained ankle in the past, then months and years of incapacity can be a hard pill to swallow.

I hope this has been of some help and not too irrelevant.

Best Wishes, G2

Baby donkey

[Bickerstaff in reply to Gandalf2]

Thank you for replying

[Ocean96]

Hi Chris,

Firstly, thank you for sharing your story and you are so welcome. I haven't heard of Bickerstaff Brain Stem Encephalitis, however, a lot of people haven't heard of my type of encephalitis too! So I relate to you on how rare our conditions may be. I have Anti-NMDA Receptor Encephalitis and I am about four years into my recovery and one thing I have learned is recovery is not linear, it comes in waves of ups and downs and that's completely okay!

I know I found it difficult to come to terms with some of the physical and mental changes after getting encephalitis however, I like to think rather than thinking I'm at a loss, I think to myself I am just differently-abled. It is really hard to accept we might not be able to do the things we could before encephalitis and I think accepting that comes with time but I have found reaching out to others affected helped me feel supported and less alone so thank you for taking that big step!

After my encephalitis, I kind of had to figure out who I was now that I wasn't able to do certain things anymore. I found talking to a counselor helped me come to terms with what had happened to me and also find new things I would like to do.

I join the encephalitis societies zoom gatherings and I find them so helpful and I have met some lovely friends along the way. Here is the link - encephalitis.info/blog/virt...

I also found it helpful to hear other stories as it helped me feel less alone. The encephalitis society have a great youtube channel - youtu.be/Rgco3aiIVMs(Not working as expected?)

[Bickerstaff in reply to Ocean96]

Thank you for replying, I have had a good response.