When were you/your loved one diagnosed with encephalitis?

[EncephInternational]

Hello everyone! To get the ball rolling, lets have a question.

When were you/your loved one diagnosed with encephalitis?

What was the trigger for diagnosis? Share your experiences and interact with other members in the comments below!

[RED1224]

I was diagnosed with encephalitis mid way through 2003. I was 16 years old and much time has passed so the events are a bit vague. My diagnosis is also not entierly clear so I have recently sent off a request for my medical notes, in the hope of some clearer answers.

[EncephInternational Partner in reply to RED1224]

Thanks for sharing with us about how and when you were diagnosed, RED1224. Wishing you the best of luck finding some clearer answers about what happened back in 2003 in your medical notes! Has anyone else had trouble getting clarity on their diagnosis?

[RED1224]

The trigger for my diagnosis from reading a few reports and what my parents have told me was. Coming out with chicken pox or Varicella Zoster Virus, this promted test for; blood, MRI, CT, EEG and Lumbar puncture. These showed high levels of white blood cells and inflammation of the brain.

[EncephInternational Partner in reply to RED1224]

Thanks for sharing more about the trigger for your diagnosis, RED1224. So coming out with chicken pox spots was the trigger for the further investigations that led to your encephalitis diagnosis?

[RED1224 in reply to EncephInternational]

It meant the investigation started to move from psychological and drugs tests to looking at other possibilities. So yes I think coming out in chicken pox spots could have saved my life.

[EncephInternational Partner in reply to RED1224]

Wow, who'd have thought those awful itchy little bumps could be lifesavers?

[Paula-38 in reply to EncephInternational]

That's what I thought. It sounds like a terrible situation for getting a diagnosis.

[Hidden]

I was diagnosed with viral encephalitis in 1977 and was rushed into hospital in an isolation ward of Intensive Care. I was there for six weeks and it left me with severe epilepsy which since 1994 I have been seizure free

[EncephInternational Partner in reply to Hidden]

Amazing that you've been seizure free since 1994, paula191! In your experience, what helped managed the epilepsy?

[Hidden in reply to EncephInternational]

Phenytoin and Clonazepam

[RED1224 in reply to Hidden]

It is good to hear you have been seizure free since 1994. Has this lead to positive changes?

[Hidden in reply to RED1224]

Yes it has made a big difference.

[Paula-38 in reply to RED1224]

Thank you RED1224☺

[Hidden]

Well I can't post you my whole life story in a post because there wouldn't be enough room. I'm so much better now and it wouldn't do me much good to dwell or focus on the past so much because it's a bit late in the day for that now. But it's a great resource for those who have had a diagnosis of encephalitis in recent years because there is so many more brilliant resources out now for them whereas years ago there was nothing like this out and nobody knew what was going on with my paranoia, panic attacks depression and that where I couldn't absorb a storyline quick enough was put down to a huge lack of understanding which I never had and was also put in a school where they didnt have separate classes for different abilities and was in a class with retarded children when I didn't have those problems I was able to do mainstream work so it was a waste of time being there even the headteacher said that but it was the law.

[EncephInternational Partner in reply to Hidden]

Not to worry about sharing your whole story, paula191 - please never feel any pressure to share anything you don't want to! I'm so sorry to hear about some of the challenges you faced with your education as a young person with encephalitis, following your diagnosis in 1977. It is good to hear that there are so many more resources for people affected out there now, though I am sorry they weren't available to you, after your diagnosis. Changing that is what this trial is all about! Finding what helps people the most, and how to get it to as many people as possible. Thanks again for being a part of it

[RED1224 in reply to EncephInternational]

Hi I also experienced difficulties going back into education after Encephalitis. The secondary school as was at did not accept me back. In hindsight it was probably a good thing but as a teenager, loosing all your friends and not been able to return to the same school was a big deal.

[Hidden in reply to RED1224]

Hi RED1224, sorry to hear that you had problems returning to secondary school and they didn't accept you back . I had the same thing when I started primary school, I was taken away from the first one because I fell off climbing frame and babged my head on the concrete had a big lump on back of my head then was rushed into hospital I was in a coma for a week then when I did come home I couldn't return there so I was sent to a second one which I loved but because there were no nurse/matron I couldn't stay there either but I could do the work at both these and had different classess. Usually people who attend these schools were not off sick as much as I was. Every time I picked something up it triggered my epilepsy off and was nearly always in and out of hospital til 1987. By the time I got to secondary school I had improved and couldnt wait to get away from the last one. Secondary school had separate classes and better teachers and I made one or two friends there. I did much better there. What year did you have encephalitis then?

[RED1224 in reply to Hidden]

I can empathise with you in regards to a lack of understanding at school. Teachers did not know how to adapt their classes and I did not have the awareness to ask for help.

[Hidden in reply to RED1224]

Thanks RED1224

[Paula-38 in reply to RED1224]

I was too paranoid to ask for help so I just waited til I was asked then I would stand by teachers desk and do it discreetly which is pretty 'similar' to your experience isn't it?

[Hidden]

You are welcome anytime.

[Ilovemyjag4ever]

Diagnosed with Limbic Encephalitis, that started a year ago next month with partial seizures at first, and memory loss. Since then behaviour and personality changes.

Very lucky to have a supportive family!

[EncephInternational Partner in reply to Ilovemyjag4ever]

Thank you so much for sharing, ilovemyjag4ever! So the partial seizures and memory loss were the triggers for your diagnosis? So wonderful to hear you've a very supportive family! <3

[Paula-38 in reply to EncephInternational]

Of course it is!! I totally agree.

[Paula-38]

Well I didn't know until I atarted researching online only in the last couple of years. Apparently it was at my first birthday party when I was getting passed around everyone was holding and kissing me, so I asked my dad and he said there was somebody there who had a cold sore. Then the next day, I believe I was being sick, wouldn't take my bottle, had a fever and was shaking non-stop 'I now know was my first seizure', my mum and nan were worried sick . My dad was at work, so my mum rang him up and he rushed home then they called the GP out and they rushed me into hospital and said they didn't know whether or not I would make it..? Then I was put in an isolation ward in an ICU and my parents were allowed in 'but had to change their clothes and put gowns on' but they sent me to the Countess of Chester Hospital for a few hours to have a Lumbar Puncture, allsorts of blood tests, and all brain scans they had out then. I was then diagnosed with viral encephalitis, and Status Epilepticus and started me off on Diazepam, Tegretol and Mysoline 3 times a day then sent me back to my local hospital again by ambulance. I was always one for pucking up infections etc like children di but this triggered my seizures off and I had to go to hospital every time this happened until I was ten. But then after my first year free, then I had another one and a repeat of this again. Then I was thirteen when I had my next one but was allowed to stay at home for once. Then my final one was when I was 17 in 1993 and that was it! No more ever since!.

P.S when I was ten I had the flu and tontilitis together I was being sick and couldn't keep anything down so they said that Diazepam was addictive and changed my medication to Phenytoin twice a day and Clonazepam at bedtime, this was after transferring me to and from Alder Hey Childrens Hospital for the daya while I had my scans and then back to my local hosputal by ambulance again. I'm finding that dwelling on this only makes me depressed just thinking about it and concentrate on how I am now in a positive way. I was alays told by hospital staff how brave I was.

Just look at me NOW ... it just goes to show you that encephalitis "can and does" get better. This is why I wanted to help put because we hear of so many really sad cases and/or they get worse . I thought to have someone like me to prove that this is not always the case and it should be in the next book that comes out.By the time the Encephalitis Society had started out I was fine by then. But was diagnosed witg Profound OCD that same year and I id let you know wgat happened after that and my lifelong journey didn't I? its so weird that nothing like this this wasn't out at the time. I think it's a bit late in the day for talking about reaching out after well over fourty years because I'm in a much better position now so there's no point really. 😕

[EncephInternational Partner in reply to Paula-38]

Thank you for sharing, Paula-38. It is wonderful to hear about how brave you were as a child facing the outcomes of encephalitis, how far you've come, and that encephalitis "can and does get better." <3

[Paula-38 in reply to EncephInternational]

Awh, Thank you and you are welcome anytime. 😊

[GlamondoDC]

My mum was rushed to hospital on Feb 26th 2020, barely responsive and very confused. The evening before, while I was with her, she had been a bit lethargic and off her food. The week before that, she'd had a very severe headache followed by a few mild cold symptoms.

She was finally diagnosed with encephalitis AND meningitis in March 2020.

Please feel free to read my bio for more info. (I couldn't help myself!!)

[tigris1977]

My Husband started having seizures randomly in 2017 and all tests came back normal. Finally after several seizures they did a lumbar puncture in 2019 and was diagnosed with auto immune limbic encephelitis. Treatment was unsuccessful and now has permanent brain damage and strange behaviors. I don't even know him anymore. All his doctors keep pawning him off and telling me they just dont know what to do with him. He is on 4 different anti seizure medications and still has seizures and with every seizure he suffers more brain damage. I am desperately seeking help

[Paula-38 in reply to tigris1977]

Hi tigris1977, I completely understand and I am well aware that repeated seizures "can'' cause permanant brain damage. I am SO sorry to hear that your husband's treatment was unsuccessful. What anti-seizure medications does he take? I will give you some more charities because the more help your husband receives the better. There's Epilepsy Action if you are in the UK, and there is also Epilepsy Foundation for people in other countries, it depends on where you live.

[tigris1977 in reply to Paula-38]

He is currently taking Lacosamide, Topiramate, Clobazam and Lorazepam and a couple other things for sleeping and to help the tummy from all the meds. We live in Canada and struggling to find help. We just got the results from the PETscan and that came back normal. I just dont know what to do anymore.

[VJM19 in reply to tigris1977]

Did they try the corticothérapies? With prednisone? Or infusion of immunoglobuline? I had a Hashimoto encéphalysis and it helped me a lot. I’m good now. From Canada too.

[tigris1977 in reply to VJM19]

They did IVIG and Prednisone the first time and it caused severe migraines and the second time was just Prednisone and that caused hallucinations. Doctors are now doing paper work to admit him for the inpatient ABI program. Fingers crossed

[VJM19 in reply to tigris1977]

I hope it will work!

[Gyosamom]

Last year, I became confused, headaches, randomly vomiting, and ended up in the hospital twice. The second time it was determined that I have an autoimmune encephalitis with both Hashimoto and Graves’ Disease. I ended up in a rehabilitation hospital as I needed to learn to walk, general motor functions needing occupational and physical therapist as well as I had lost cognitively as well. I am out of the wheelchair now and walking on my own. Still have problems cognitively. Last November, they used radiation to take out my thyroid. Hoping for the best!

[Wygella]

I was not well all through the start of 2018. Struggling to sleep. Constant bouts of vertigo and ear ache. Was taking antibiotics regularly for an ear infection. Went on holiday to France with family and had a massively stressful journey home due to our flight being cancelled. We stayed overnight in a rough and dirty part of Paris. 10 days later I was suddenly very very ill while eating tea. At first we thought it was food poisoning, but as I got worse, fever and temperature through the roof and then got very confused my husband rang 111 who sent an ambulance straight round. I was so lucky that a team was waiting for me in A and E including a doctor who recognised viral encephalitis within an hour. I had three seizures the last bad but didn’t go into a coma. I was treated for both meningitis and encephalitis.

[93_5]

Hi. I was diagnosed with auto-immune anti NMDA receptor encephalitis in 2016 when I was 19. I don’t remember the exact trigger, my family told me I lost consciousness in A+E . I was in intubated in ICU for a month and a half, tests were done and a diagnosis made. It has been a long journey of recovery however I have reached my goal of getting to medical school! I am very much interested in brain injuries, I’m not sure yet if I do want to specialise in neurology but I hope one day I am able to do some excellent work with the encephalitis society, whether that be through research or having a patient + doctor / medical student perspective.

At the time, I think I rushed my “recovery”. I was so demoralised at the situation, just when I was about to go into my dream university course, travel and all the other things that make life exciting at 19, encephalitis happened. So I really tried my hardest to overcome it emotionally, I’m really lucky to have come through it without any major physical/cognitive issues however emotionally it does still affect me. If you’re a friend/family member of a patient, then you need to learn patience, and if you are a patient then embrace the emotions and express them with people who are trained to help such as occupational therapists, this is so important so in years to come the trauma doesn’t affect you as much.

Sorry this ended up being longer than expected.

[BeckyRule]

Last year the day before my due date I started having an awful migraine and my talking was making no sense... my partner called the midwife and she told me to go straight to the hospital... my memory of the next 24hours are all up and down but I was taken for an emergency cesarean and my little man was luckily okay ❤❤ 24 hours later the hospital send me to the Walton centre in Liverpool and after some test results came back my family was told i had encephalitis and meningitis and i had a 20% chance of living. But I'm very lucky and still here with a smile on my face today.

I still have daily problems that in still learning to deal with.

This is me talking to my phone as my reading and writing is still a struggle. My short term memory is an issue and still day by day set myself alarms. I no longer seen hot or cold and I cant taste food or drink or every hungry or full. I am now on medication for Epilepsy.

Day by day is still a struggle but I am still here with my little man and my partner was perfect from day 1 bringing him to see me in hospital every day. Even on hard days I am happy I am here with my family 🥰

[Alturas]

I developed an extreme headache on a Saturday night, saw my Dr. first thing on Monday morning, tests ran, and was hospitalized on Tuesday with a continuing severe headache. I was treated for encephalitis without final test results as they do take a few days. I could not give any information as I had no memory at this time.

Three years ago this Halloween is when I was hospitalized and now retired from work that I loved over 30 years. I was not a medical professional but worked for and managed offices of health care.