Hello everyone. I’m hoping to find some answers or I should say, similar stories to my own and honestly just to tell my story... fair warning, It’s a long story!
On Dec. 11, 2019, I was at work (healthcare worker) and felt so ill I kept going to the bathroom to throw up and i felt so confused with a huge headache. I suffer from migraines so I assumed it was a really bad migraine! . So, I didn’t go to the hospital until the following day after still not feeling well. My husband at age 16 had meningitis and knew what the symptoms were, he was the one who forced me to go (god bless him). I was admitted and my husband kept telling them “I really think she has meningitis” but they kept giving me pain meds for half a day. Until finally, they did a spinal tap. But, they never gave me any meds and sent me to one of the recovery rooms. (yes, i know. Unbelievable). So, now it’s been 48 hours since being admitted and out of nowhere I started having tonic clonic seizures (per my husband as I have no recollection of any of this. I lost all of my memories, my last memory was the spinal tap). For a whole day I suffer from seizures on and off while on anti-seizure meds and medications (yay finally got it lol). But, I was not improving I believe that’s when I entered the “Encephalitis” part. I was transferred to a hospital an hour away. (UCSD) and I am extremely grateful for them! They saved my life I tell you. Was put on a ventilator induced coma for a week to help control my crazy seizures and save my life. I was put on all bacterial, viral, fungal meds they could think of and multiple seizure meds. Unfortunately, I had numerous tubes of blood drawn and 5 spinal taps and not one test showed what type of infection I had. Till this day they are claiming Viral for now. (How weird is that? It is a complete mystery)
Well I finally got back to my beautiful girls and husband on Christmas Day and that was my best present ever. I had to learn how to walk and breathe again and a bunch of other things we take for granted. I developed asthma and many other symptoms. I went back to work and have had multiple infections on and off and now have had to quit because of it. How long did it take you to recover? I’m reaching a year and still fatigue and had a recent seizure because of a medical procedure that caused it. I’ve not had ANY seizures since Dec. so it’s really frustrating to see this happen.. I feel like I’m backtracking. My immune system is crappy and now with COVID it’s really hard to do anything.
Well thanks for listening to my story and I hope you guys are doing better than my current situation.
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vloaiza09
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Hi well I had auto immune encephalitis three years ago I still have memory lapses lost my taste and smell but between these episodes which seem to relate to poor sleep or viral infections I am mostly ok I was advised I could go onto epilepsy medication but if it does not get worse I want to wait and see I am not expecting miracles just glad to be alive
Hello! I was also advised to go on meds as well but declined as it made me feel very weird and I’d rather wait.. i hope you are doing better. Thank you for sharing.
Hi, thank you for sharing your story. I was diagnosed with autoimmune encephalitis about 2 years ago. The doctors also had difficulty figuring out what was wrong with me. They did all sorts of tests, spinal taps, lumbar punctures and even did a brain biopsy. They gave me antivirals and a lot of other meds but nothing worked. Finally they got a test result for the brain biopsy from the Mayo Clinic. The Mayo Clinic determined that I had a rare form of autoimmune encephalitis that had only been identified 2 years before. Then I got treatment that started working. I also had to re-learn how to walk, how to use a knife, fork, and spoon and even how to use a straw without getting wet!
My recovery is now just past 2 years and I'm much improved over the last year. It is so helpful that my wife points out how much better I am doing now. I don't mind asking her and my adult children to keep telling me if they see improvement and that I'm doing well! I still have aftereffects including fatigue and memory issues but I feel that I am still improving. I do some positive imagery and try to keep as positive as I can. When staying positive becomes very difficult, it is a sign to me that I'm getting tired and need a rest.
I was hoping that improvement would be a straight line going upward as quickly as possible, but I've found that there are ups and downs, some days are more difficult than others, some are better but the overall trend is up. COVID makes everything more difficult. People without other issues are having trouble. Seems like everyone is having trouble. I hope you are doing better and better every day!
Hi! May I ask what led to the initial symptoms of autoimmune encephalitis?? Do you get occurring seizures? You are right positivity helps! It’s so easy to go down the negative path. I’ll take your advice about realizing that I’m probably tired and need rest when I feel a certain way. I’m sorry you had to do Brian biopsy. I’m sure that was even tougher than my bone marrow! But I’m glad you found your diagnosis and treatment. I am actually doing better! Just the after effects of the recent seizure. I noticed my left eyesight has been since almost like a blurry, starburst halo thing going on. Idk weird. But my bone marrow results came back and they were negative for cancer! Yay. Only minor things with a names i can pronounce and not significant enough to warrant anything right now and very low iron.
I had seizures falls headaches Was very lucky the neurologist here ex dunedin diagnosed it within a week and the cat scan picked up the teratomaThanks for sharing Its a big help to hear other stories from other sufferers
My initial symptoms were a bit unusual. I started getting headaches that did not go away after taking tylenol, etc. I started hiccuping and I couldn't stop. I'd try drinking some water, holding my breath, swallowing sugar, biting on a lemon, even trying to scare myself... basically any suggested cure I could find on the internet. None of them worked. I had trouble sleeping. It would take hours to fall asleep then it was very difficult to wake up and I had to take several naps during the day. Then I started forgetting things, first small things, then bigger things like the date, my phone number, etc. Sometimes I would feel very anxious and not just scared, but *terrified* without having a reason for it. Small seizures were next, beginning with just twitching and shaking then getting worse.
The brain biopsy was an experience I still remember part of. Basically the doctor had to climb up on the table and rest his knee on my head to make sure I didn't move then took a huge needle and pushed it into my skull to get a sample. It didn't hurt much, just the pressure of his weight on my head was very uncomfortable.
My eyesight on my left eye was affected. I didn't have much peripheral vision on that side but it is improving. I remember my neurologist telling me that the eyes grow out of the brain or something like that.
I'm glad you are doing better and got those good test results!
Hi Archer! Sorry to hear you went through all that! I think I’d rather do a bone marrow biopsy over a brain biopsy any day. But you are doing better yes? Funny that you mention left eyesight. With my latest seizure episode my left eyesight was acting so weird! Very blurry and a starburst type of halo. It’s still blurry.. I have an MRI today, hopefully nothing shows up! Doubt it. By the way happy holidays! I hope you are staying safe and healthy 🙂
Hi Vi,It's really hard to say how long it was until I was back to normal, as I was a child with puberty ahead of me. Looking back, I thought I had recovered during every single stage of my life. Sometimes it takes for a new normal to be your life. I'm afraid you can just take it one day at a time, one victory at a time. I work incredibly hard at getting my sugar levels in order, which isn't easy, as my tablets push it in other directions. Work on one aspect of your life at a time. I can't promise that it won't change something else, but you'll need to work on whatever changes. I hope that's not confusing. Remind yourself that you're a wonderful, beautiful person, who was amazing enough to get through the illness. Keep going one day at a time. Congratulations on getting back home to your family xxx
Hi MasterBaker! Thank you for the encouraging words!! I will be reaching my one year since the whole incident. I’m definitely thanking the stars for my recovery. You are right i have to find my place in life with this new “normal” version of myself! Thank you. Happy holidays! ❤️
Hello Vioaiza.Thankyou for your very kind words, they really mean a lot to me. I do bake and started a business baking biscuits, called, "Pixie's". Unfortunately, due to my health I had to close, after only doing one festival. I stop myself from feeling down about it by remembering that I completely sold out, that's a wonderful memory to have. If I'm honest calling myself"Materbaker" is a bit naughty. I love to play around with words and have written a number of short stories and poems. People keep saying im really good at it, but I'm a massive procrastinator, so I never finish books that I start writing, maybe one day I will finish. I'm glad you're more positive and if you need any more help I'll do what I can, so please ask, I'd be very happy to help xxx
I'm so sorry to hear you've been so unwell and have been through so much. Your story is truly inspiring and you're incredibly brave and strong! Thank you for sharing your story, I can relate to so much of it and I'm sure many others will too which will help people feel less alone.
Well done on recovering so well.
I can sympathise completely with returning to work and having to give it up due to ongoing infections and other things for me like fatigue and headaches. I'm working on returning back to work at a slower pace, part-time and with the possibility of working from home as much as possible with Covid. I'm working with a vocational therapist who my doctor referred me to. Its great to have that support so I'd highly recommend linking in with a occupational therapist or vocational therapist if you'd like to return to work in the future.
I returned to work too early after I got autoimmune encephalitis and I learnt the hard way that I returned too quickly and needed to learn how to manage the after-effects of encephalitis.
I completely understand how you feel like you're backtracking in progress. I've had many setbacks and its very frustrating. Its great that you're taking part in this forum and linking in with others that will understand and help to support you. It can be incredibly difficult understanding all these new challenges but it is possible to learn to live alongside encephalitis. It can be a 'new normal' and things will get better. If you're finding it hard, I'd definitely voice this to your doctor. I personally saw a therapist for a couple of months whilst recovering. It really helped me to better understand myself and how to manage my new difficulties.
Also, I find it helps connecting with others who understand me. The encephalitis society have great resources. I read the book 'Life After Encephalitis' - It's a short book and also very comforting to know your not alone. Heres the link to the book: encephalitis.info/shop/life...
I know personally, sometimes with headaches and fatigue it can be hard to concentrate and read so I sometimes look at a few videos on the encephalitis societies youtube channel. Heres the link: youtu.be/VHmf0hTGbo0
All the best and remember how far you have come! No matter how hard things feel right now; everything passes!
Hi Ocean!Thank you so much for the beautiful words!!!! That means a lot. I’m definitely much more at ease knowing there are other people who are coming to terms with their “new self”. I will definitely download that book. I was thinking of seeing a therapist.. but I’m on the fence. My moods have been better and don’t feel as bad as i did a few months back.. I think it helped to see other people on here and explain their stories and their lives after encephalitis. Quitting my job was definitely one if my best decisions for my health. I hope you are doing well and Happy Holidays!
I'm so pleased it helped in some way and I completely agree exchanging our stories and experiences of encephalitis definitely helps me and makes me feel less alone in this journey and recovery!
It sounds like your doing so so well! I actually did see a therapist for a couple of months and I pop back to see her whenever things feel a bit too much and I'd highly recommend but everyone's different so see what works for you! One tip I found when looking for a therapist was to look around and see who suits me and understands me.. it might take one or two different therapists to find the right one for you!
I agree, quitting my job was one of the best decisions for my health both mental and physical!
Thank you so much!! Definitely, it's great to support one another, it makes me feel less alone too!
Me too, I check back in with my therapist too! I find it great to have that support whenever I need it! So true, I have since changed therapists and feel like we are much more suited.
Me too! I'm now planning on returning to work in some capacity! I'm looking for something that suits me!
Hope you had a lovely Christmas and Happy New Year!
Thank you all for sharing your stories. There is so much variation in how things present and types of encephalitis. I am most curious about recovery as mine has taken some downturns and it has been confusing to myself and I can't seem to get a neurologist with any clinical experience. But, we soldier on and keep the faith. I woke from a dream last month when I was having a tough time, saying this mantra out loud: 'I am strong, I am healing'. It's my new focus.
Thank you for sharing your mantra. These stories help so much when I'm feeling alone in this experience and wondering what will happen next. I forgot where I read it, but this stuck in my mind: "The most important story you hear is the story you tell yourself." My neurologist described my experience as an "ORDEAL". Yes! Having this illness and recovering has been an ordeal but we have survived. We are strong and we are healing. I wrote up my story for me to remember and review whenever needed. It is a story of survival, a story of beating the odds, a story of recovery with the next chapters being a story continued healing and success.
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