Unknown Cause Encephalitis

[bluepizza123]

Hi guys! I'm new here

I initially had tonsillitis or strep throat for around 3 weeks before I ended up in the hospital for encephalitis (or meningoencephalitis). The day of, my roommate took me to the doctor and then the ER where everyone thought that I had overdosed on drugs due to the way I was acting. After a few hours and CT & MRI, they presumed viral encephalitis. However, through the night things got worse and we were told that they almost lost me that night. The next day they did a LP and it came back clear for viral and bacterial. Blood tests also came back negative for autoimmune encephalitis.

I was put on acyclovir and prednisone (still on prednisone) and sent home a few days later with little to no information about recovery or what medication I was taking. 2 weeks later, headaches were getting unbearable and did not improve with paracetamol or ibuprofen. We went back to the hospital to do another CT scan which looked almost identical to the one that was done previously (brain swelling had not gone down). The LP apparently showed improvement so they discharged me with a higher dose of prednisone. I am currently struggling with some side effects from the prednisone but will obviously take it as I am assuming it saved my life.

Initially, I didn't think it was a big deal and was trying to get back to "normal" life as soon as possible. I have found myself doing a lot of research and getting a bit paranoid about what could happen. Whether that is that the swelling never goes down, they never find the cause, or that it gets worse and no one will be able to do anything. It feels like i'm taking these steroids and not even knowing if they are helping or not. I am also living in a foreign country and my family is on the other side of the world at the moment. It feels quite overwhelming.

Please let me know if anyone has experienced anything similar!!

[Archer6]

Five years ago I was hospitalized with encephalitis. The doctors did countless tests with no definite results until one of my samples was sent to the Mayo Clinic. The Mayo Clinic found that I had a recently discovered antibody that was causing autoimmune encephalopathy. Apparently, antibodies are being discovered/identified all the time.

They gave me high doses of intravenous prednisone that helped a lot. I was released with prescriptions for prednisone that I tapered over time. After months of this I worked down to no more prednisone and made it back to ‘baseline’ with no more symptoms.

Hope this helps!

[bluepizza123 in reply to Archer6]

Thank you so much, very helpful!

[Gandalf2]

Hello BP, as you are discovering it's a hard road with lots of byways and dead ends. Hopefully not too dead. I had four lumbar punctures and lots of tests came up negative. After that the conclusion was AE - possibly connected with previously undiscovered low thyroid levels. They prescribed steroid medication and an immune suppressant.

I'm 73 and retired on a pension. Fatigue is a big problem, sometimes I sleep all day. Exercise is essential, plus brain work and a good diet. I can walk uphill OK but soon become breathless (gabapentin med?). I take a rest and let my companions go ahead. Nature is a great reviver.

Learning to live with Enc is pretty hard, I live in the UK and have had a fair bit of support (finally) from a social worker and psych, physio, speech therapy. My earlier posts go into more detail so I won't repeat them here. It's a hidden illness so I wear a lanyard.

I have several spinal fractures so I carry morphine, paracetamol and a doctor's note. When I visit hospital I wear a mask due to my low immunity and see lots of people worse off - addicts, amputees, very elderly people etc. Improvement is slow but friends remark on my progress. Best Wishes and Merry Christmas. G2

[Wygella]

So sorry we have to welcome you to our E warriors group. I hope you find help and encouragement here. I had HSVE (herpes virus) encephalitis 5 years ago. Are you in America as you mentioned ER because I went through the NHS system - who were brilliant with me and I was fortunate in having an A and E doctor who knew what it was. Also I think we were all in hospital longer than you have been. It is a scary illness and it is a long slow road to where you feel you can settle and cope as Gandalf says it’s a hidden illness because you look and mostly sound ok. I know I’ve been lucky because apart from what I call crashes and brain freezes and a weird writing habit, I’ve learnt to walk, talk, and function well. Some things I avoid like bright or flashing lights.

You are young, a lot younger than I was, so hopefully your body will be more resilient and recover well. Like you I thought I’d just had like a super bad flu attack and would be better in a few months, but that’s not how it works I’m afraid. So please be kind to yourself Don’t push yourself too hard it will make you feel worse. And use the resources of the Encephalitis Society They are really good, and will have more medical advice and reassurance. Good luck Keep in touch

[bluepizza123 in reply to Wygella]

Thanks for your response!

Im currently in South Africa, where I was treated. I think as soon as they saw the brain scans they knew what it was and started me on all possible medication asap which is a good sign. I was a bit shocked with how little information I was given upon discharge. They told me I could go surfing the next week (unfortunately that was not the case, I couldn’t even walk 200 meters).

I know I was very lucky and they said I had made a miraculous recovery. I’ve heard so many scary stories and am so grateful I haven’t noticed many lingering symptoms other than being easily overwhelmed/overstimulated, headaches, some short term memory loss, and difficulty concentrating.

Thanks so much for your story and advice, I really appreciate it

[Wygella in reply to bluepizza123]

Surfing? I could hardly stand up! I think they were a bit ambitious. However in such a short time you’ve done well already so as I say. Be gentle with yourself. Let us know how you get on or if you need a vent!

[bluepizza123 in reply to Wygella]

I think he was a bit too optimistic 😂😂 thank you so much

[Wygella in reply to Wygella]

😂 . You may need better balance before surfing again though! Take care. I hope you can relax a bit over the Christmas period. And remember you have a group here who really understand.

[RainbowBrie]

Hey,Sounds similar to mine.

When you were on the acyclovir how long were you on it?

I initially had 1 week of it IV and then a further 10 days orally.

I then had a repeat MRI 6 weeks later as I think it takes a while for the brain to recover. My repeat MRI showed swelling had gone but I had scarring left.

Be kind to yourself. It can take a while to recover. It's a really serious illness.

[bluepizza123 in reply to RainbowBrie]

Thanks so much! It was very scary as I don’t remember most of it (was unable to speak or stand and was fighting off all the nurses apparently)

I was getting IV acyclovir for a week and then orally for 2 weeks after. Currently I’m only on prednisone and some pain meds for the headaches. I will have another check up in a month so hopefully then things will have improved. Thank you :))

[cg511cg]

So sorry to hear about your diagnosis. The Encephalitis Society's website has been a godsend to me as a caregiver for my husband, who was diagnosed with Enc. (caused by H1 virus) in May of this year (2023). Part of the benefit of the site is knowing that you're not alone and others are experiencing similar if not identical symptoms, and also finding some small tip that may aid you in your own recovery. And yes, the doctors really didn't tell us what to expect either!

My husband (age 68) gets what he calls 'skull headaches' - they are unlike any headache he ever experienced before he got sick with Encep. Over the counter ibuprofen didn't help. I was frantic on the website trying to find out what others were experiencing and what might help, and sure enough, headaches (as well as fatigue) are common after-effects of Enc. Unfortunately, there is no one cure-all - every person is different. What helped my husband was a drug called Tramadol, 50 MG, which is a narcotic. On the plus side, his headaches are getting less frequent, and this I think is just a function of time and the brain healing. He hasn't had to use Tramadol in a couple of weeks. A non-skull headache and other aches and pains are alleviated with over the counter Advil Dual Action (combinatio of ibuprofen: 126 mg and Acetaminophine: 250 mg). The healing process from Enc. is mind-numbing slow and often I would wonder if he would ever improve. Ench. survivors on this site assured me that we were still very early in the recovery process, which was very encouraging to me. My husband continues to improve both physically and cognitively.

From what we've learned, celebrate the small achievements and try to be patient as recovery is a slow and rocky road. Also, check out the 'Letter from my Brain' which is posted on this site.

Wishing you all the best in your recovery.

Wishing all a Happy New Year!

[sleepless68]

Sounds similar to me however I was on aclovir for 2 weeks then spinal tap and mri again. My headaches present as paraplegic migraines now.....I.e.loose everything except hearing.I carry 900mg of aspirin and an anti nausea drug to take on onset and candasarten 4mg as preventative.I m 3 years on and still experience fatigue but work full time and function normally except for avoiding flashing lights and scrolling imaged. The information on encephalitis is shockingly poor.take care.x