Encephalitis

The encephalitis effect

Lucy Dawson

I experienced my first migraine in the summer of 2014 – a sharp and blinding pain to one side of my forehead, which felt like I was being stabbed. My brain was screaming at me, and I couldn’t shake the nauseating feeling that came with it. These migraines continued sporadically for the next couple of years, often occurring a couple of days before THAT time of the month, so I put it down to simply that, they were just menstrual migraines – potentially the result of the contraceptive pill I was on.

However, by 2016 I was experiencing pain like never before. Migraines that stopped me from leaving my bed other than to be sick, having to skip lectures and seminars because I physically couldn’t stand the light. The pain didn’t just stop in my head, it travelled down my neck and through to my wrist, and no amount of ibuprofen, paracetamol, deep heat or cooling gel would make any difference. By the summer holidays I was experiencing these migraines every single day but just kept putting it off as the hot weather or a bad night’s sleep.

When I began my third year of studying Criminology at the University of Leicester, things were seemingly fine. I enjoyed a few nights out in fresher’s week as normal student, and had begun planning Halloween costumes with my housemates. I have vague recollections of the semester beginning, and arriving to seminars extremely tired and struggling to stay awake during these. On reflection, I have no idea how I managed to get to and from university safely.

Although the next period of time is a complete haze to me, I know that I suddenly became very secluded from my two housemates and spent the majority of my time locked alone in my room. I avoided meal times and socialising – something that was very out of character for me as I was always the life and soul of the party.

On the 13th October 2016 in the early hours of the morning I woke up and began screaming the name of my housemate at the top of my lungs. “BECS, BECS, BECS,” I cried, but nothing else would come out of my mouth. I was extremely agitated and panicky and no one was really sure what to do. My housemate contacted my mum who told her to send for an ambulance, and I was taken to Leicester Hospital. Once there, they suggested that I had simply had a panic attack and sent me back home. How wrong they were…

I rang my mum later that day and struggled once again to speak to her, constantly apologising to her for no reason. During this time I sent some bizarre text messages to my friends and sister which made no real sense. The next morning I had deteriorated more and my parents came to collect me. When they found me I was sat sobbing on my bedroom floor. I was surrounded by clothes I had torn to pieces, and other belongings. When asked what was wrong I cried to my dad “I’M FAT, I’M UGLY, I DON’T HAVE A BOYFRIEND, I DON’T HAVE A JOB, I CANT DO MY DISSERTATION.” My eyes were wild and I was shaking, but no other words would come out. I have no recollection of any of this – all I remember is a bright shining light in my face. I later found out that this was my dad’s phone as he filmed me with the flash on to show to the doctors.

I was put into my parents’ car and they drove me to various hospitals – Lincoln, Louth, Grimsby etc., none of which would take me due to a bed shortage. During the car journey I could not speak but was robotically singing along to the radio. I also attempted to escape from the car as it was in motion.

Eventually, I was accepted into Boston Pilgrim Hospital and then at a later date Lincoln County Hospital, where I stayed for three months. During this time I went completely insane. I stripped completely naked and ran through the ward, as well as screaming random things such as “ORANGES, ORANGES, ORANGES.” I became completely childlike and aggressive, completely out of control of my own emotions and actions. I had completely lost my mind.

The doctors all thought I had suffered an extreme mental breakdown, and sectioned me immediately – giving me a bed on the Pete Hodgkinson Ward.

I had no idea what I was doing or saying, and have no recollection of any of this period. There are minor flashbacks of my dad, sister and uncle sat by my bedside, despite the fact I had many other visitors than this practically every single day.

Later, I went into a catatonic state characterised by muscular rigidity and mental stupor or appearing to be in a daze or stupor; unresponsive. I was living off multiple tubes and no one was sure whether I would survive, or what state I would be in if I did wake up. I also experienced numerous seizures, including five on my 21st birthday.

After being in this state for a long period of time, my mum and dad were informed that they had to make the decision whether or not to sign papers which would allow the hospital to perform Electro-Convulsive Therapy (ECT). This was a procedure in which electric currents are passed through the brain, triggering a brief seizure. Amazingly, I came around after just two rounds of ECT. Usually this takes double figures and huge amounts of steroids being pumped into the body.

During my time in hospital I fell out of my hospital bed and onto a radiator pipe for 30 seconds which resulted in a 10cm third degree burn to the same level as someone who’d been in a fire. Also, when I finally came round my left leg was in absolute agony and my foot was completely limp (foot drop) meaning that I could no longer walk. It is unclear as to whether this was a result of the fall or of the illness itself.

When I was eventually discharged from hospital a couple of days before Christmas, it is safe to say that I was not myself. My memory of the previous months was pretty much non-existent. I just remember being scared of the other patients around me as they were all also suffering with varying illnesses and saw me as somewhat of a novelty, being much younger than them. It was as if each day in hospital was only three seconds long and in those seconds I would either be handed medicine, or turned over in my bed and then everything would just go black. I had vivid and confusing dreams which made no sense and were often scary. My speech was impaired and I struggled to complete a sentence or find particular words. The thought of typing, writing or reading was completely foreign and I couldn’t even sit down and concentrate on a TV programme. I found it hard to stay awake for any period of time and found myself spending most of the day asleep. I got around using a basic splint and zimmer frame, and had to use a commode downstairs in my house as stairs were a huge problem.

In January 2017 I was diagnosed with Anti–NDMA Receptor Encephalitis, which is a disease occurring when antibodies produced by the body’s own immune system attack NMDA receptors in the brain. NMDA receptors are proteins that control electrical impulses in the brain. Their functions are critical for judgement, perception of reality, human interaction, the formation and retrieval of memory, and the control of unconscious activities (such as breathing, swallowing, etc.), also known as autonomic functions. This is the reason that I seemingly went insane.

The damage in my leg was later revealed to be damage to my sciatic nerve which may or may not heal itself after 2 years. Walking is now a huge challenge for me and I am awaiting a bespoke splint which is being made for me to replace my current one that I use alongside a pair of crutches. I am in constant agony with my leg, despite having tried various pain medicines. I am also on various other drugs to help control my seizures.

Although we could not have foreseen this illness other than being more vigilant in getting treatment for my migraines, on reflection there may have been multiple factors leading up to it. Namely, I had been extremely anxious and depressed for numerous years as a result of being abused and raped in my late teens. Furthermore, for many years multiple fake accounts of me had appeared on the internet on websites such as Facebook, Instagram, Twitter and even Plenty of Fish. Someone had also sold a fake magazine article about me. It was later revealed that this same person had been doing the same thing every 3 months for 3 years with various publications, and had even tried to sell a story that I was having an affair with Katie Price’s husband. This caused extreme stress and on top of this the everyday stresses of student life were applying a lot of pressure on me.

Because of missing three months of university I was unable to finish my degree this year and because of my impairment I will not be able to pick it up again next year. However, I am hopeful that by the year after my condition will have improved enough that I may finally get my BA in Criminology.

If you had asked me to type this seven months ago, or even five months ago, I wouldn’t have even known how to turn on a laptop. I am extremely lucky and grateful to be in the position I am, despite my life having taken a turn that I would never wish on anybody.

Photo 29-06-2017, 19 34 19

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Published by Lucy Dawson

Disabled model and advocate

43 thoughts on “The encephalitis effect”

  1. Hi Lucy, it sounds like your ordeal was terrible. Good job you had loving family and friends for support. My nephew had encephalitis a few years ago and he was lucky to survive it. So happy you are getting your degree sorted and things have improved now for you.

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  2. Good luck with your recovery Lucy. My mum had HSV Encephalitis and is now in a care home.. Its very hard and I am so pleased to see someone getting back on track after such a devastating illness struck.. Thoughts are with you

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  3. Wow Lucy, you’ve really been through hell over the past few years. I really hope you can continue to improve and get your health back to where it was before all this happened to you and get that degree you worked so hard for.

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  4. I had this but in 1998 so they had never heard of it as it has only been defined as NMDA fairly recently. They just used the blanket “viral encephalitis” definition then. But your experiences sound very similar to what I’m told mine were (I luckily don’t have any memories!!) Hope youre managing ok now and you manage to get your degree.

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  5. My eldest daughter Rebeccah has got viral encephalitis,she was rushed into hospital on the 31st of January this year,she spent 6 days in the intensive care unit,11 days on a ward and then 10 and a half weeks in a rehabilitation centre,they had to learn her to walk again,she’s now got brain damage to her frontal lobes which stores the memory in the brain,she still to this day cannot walk properly,what we have been through and still going through in the past 6 months,I would not wish it on anybody,it’s absolutely heartbreaking to see someone you love so much to go through what she has been through. I wish you well Rebecca with your recovery and hope that you do return to uni to finish your degree xxx

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  7. What a brave girl you are. My daughter had NMDA Receptor Encephalitis two years ago aged 19. She had very similar reactions to you but is now improving all the time and I have my fingers crossed that you have a very bright future ahead of you. Very best wishes and thank you for sharing your experience.

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  8. Thanks for sharing your story Lucy, such a brave lady, I hope you finally get to take your degree! I had autoimmune enchephalitis in 2011 with pretty much the same scenario. Ended up being sectioned for 5 months and my little girl was 9 months old. Fortunately not had a relapse and I have a two year old little boy now. Onwards and upwards honey 😘

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  9. Lucy you are amazing. I had Encephalitis in 2014 hit me like a bus, bang I was gone woke up in hospital with no memory of the previous 8 to 6 months. I genuinely feel I was luck I would have hated to have gone what you when throw. I still have issues but with the love and support of those around me I am slowly getting there! I wish you the best going forward and hope your story helps others in the future.

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  10. Lucy you are amazing. I had Encephalitis in 2014 hit me like a bus, bang I was gone woke up in hospital with no memory of the previous 8 to 6 months. I genuinely feel I was lucky I would have hated to have gone what you when throw. I still have lots issues but with the love and support of those around me I am slowly getting there! I wish you the best going forward and hope your story helps others in the future.

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  12. My daughter was hospitalized with meningoencephalitis for 2 weeks. She also tested positive for ANMDA. I am thankful that it’s been 4 years and she is back to herself. she had no memory, didn’t know me was like a small child and was asleep alot of the time because of the seizures. I am so glad she made it still dont know the cause but it’s helpful ready others stories. You were meant to be here you are a fighter and stay strong and healthy. Good luck.

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    1. so pleased to hear of your daughters recovery, it must have been an extremely challenging time for you all and you will have come out so much stronger,
      thankyou so much for sharing<3

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  13. HI Lucy,

    I came across your story and I just wanted to wish you, your family and friends all the success with your recovery. I can somewhat relate you what you are going through as I had HSV Encephalitis seven years ago, and got my life back on track over the last few years and was lucky to graduate from university last year. It took me a few additional years to graduate so do not let this put you off and remember you will be still so young.

    Everything was going great for me until six months ago, when I started taking several seizures and I have continued taking them. My memory, confidence, word finding, concentration etc. have all been greatly impacted and it is hard at times for me to push myself to improve these. But with the great support team I have around me, I know I will get back to myself. For me it is just like I am starting the journey again but I take great motivation when I read how other people are overcoming a similar illness.

    Good luck with your recovery,

    Rory K

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    1. thankyou so much for your comment and i am sorry to hear that you have had further set backs but you are stronger than you can possibly think and i’m sure you can fight this and come out on top<3

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  14. Lucy that’s a nice story I know how u feel I had mine from 2006 and got really bad memory I hope u can keep safe and get alot better soon xxx

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  15. Hi Lucy, I suffered from exactly the same form of encephalitis 7 years ago. I was in my second year of college but due to this had to take a sabbatical, don’t worry right now give your brain a break, school will always be there. When I returned from the hospital and it was a slow recovery. I went to lots of yoga classes, PT, and Drew and painted a lot to regain movement and my hand eye coordination. I would get frustrated at times, but the year off was worth it and helped me get back to school fresh and with a different perspective. I finished my BA and MA. Now just looking for a job lol, but that’s a different story. Take care
    Andrea

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  16. Wishing you all the best Lucy and hope that you continue to go from strength to strength. My 11 year old daughter was diagnosed with NMDA in April 2017. She, like you, was misdiagnosed for some time and that has had an awful affect on her. She doesn’t remember much about the actual illness, which is both a blessing and a curse, as she doesn’t understand what all the fuss is about. We are yet to know the full extent of the damage it has caused and know that we still have a long way to go, but hearing others stories gives us hope. Thank you x

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    1. thankyou so much, yes in a way i am glad that i don’t remember much of what happened as im sure it was an extremely traumatic time
      wishing you and your daughter all the best xx

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  17. My daughter was 14 and was hospitalized from jan 20- June 5. She was diagnosed with acute necrotizing encephalomyelitis. She has the genetic gene ranbp2. It is reacurring. It has reeked havoc in every aspect of our life!

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  18. Lucy your a fighter and I’m so glad you are on your way to a great recovery!! I’m so sorry you had to go through such a horrible thing and I to would not wish this on anyone!! I have a 17 year old son who has Limbic encephalitis auto immune disease 3 months ago he went by ambulance, he was falling over getting sick and we rushed him to a children’s hospital and he became worse each day an seized for 3 days straight and hardly woke up finally he was rushed for an emergency MRI because his right side of his body stopped moving and did spinal tapes and we were blessed to have had a dr who spent her days researching with a team and 10 days later he was awake after a strong seizure medicine, it took him a day to remember us and his name, he made a full recovery and we are so blessed. Reading others stories like yours i pray for each person that has been through this and will continue to pray for you to Lucy

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  19. Hi Lucy
    I also suffered from Encephalitis around 2 years ago with similar symptoms to the ones you mentioned above, especially the one about running down the hospital ward naked shouting random words ! Im just glad i have no recollection of that but my family day and remind any chance they get. lol

    Anyway its a really insightful blog and I wish you a speedy recovery.

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  20. Thank you for sharing your story, it is very powerful and by sharing you are educating people into a little known condition that’s need awareness raised. I too had AE (mine was LGi1), I was able to return to work (a nurse) after 4 months however it has taken me if I’m honest 2 years to recover fully. Try and be patient, stay brave. You can find me on twitter @champagnebird I support the Encephalitis Society x

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  21. So sorry to hear that you’ve been so ill Lucy. You seem more positive about things so I applaud your courage…Best wishes for the future and thank you for sharing your experience. It’s valuable to know about this condition

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