I've been diagnosed with encephalitis recently but haven't been told anything about it.
The hospital gave me a sheet of paper with information about the virus and told me to visit my gp, I went to see my gp who told me they dont know anything about encephalitis and if anything gets worse to return to the hospital.
I've been told there's so many different types of the virus. How would I find out what type I'm suffering with? Do they go by the symptoms?
Before I got rushed to hospital I suffered with headaches that I can't even start to explain what they feel like, when I get these headaches now I can only explain the feeling I get around my nose that feels like a nose bleed coming on but this doesn't happen. I feel sick from the headaches and also I'm becoming forgetful.
When speaking, I feel like I got the words on the tip of my tongue, but just say them. I stare into space when people are talking to me, but I don't even know I'm doing this. The headaches are starting to feel like a pulsing feeling around the back of head but can come around the front sometimes. If anyone could help me with any information I'd be very grateful.
Much love to you all ❤️
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Mooney1989
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Hey there. I'm sick right now, so this will be short, but I saw it in my email and was shocked: Did the doctors really diagnose you with viral encephalitis then tell you there's no treatment? THAT IS WRONG. You might need IV antiviral medication (acyclovir).
Do you know which virus? You said "many different types." Are you referring to herpes simplex virus? Type 1 of HSV is the most common viral cause of encephalitis; it starts as a cold sore and can come from anything: kissing, water bottle, utensils, etc.
Please get help and support ASAP from doctors and family. Encephalitis can become life-threatening literally overnight.
The hospital told me there's no treatment for the virus. They even told me they spoke to other professionals in the hospital who said the same thing. On the sheet of paper they gave, it mentions IVIG but nothing else. I'm going to A&E today to ask about this. I don't know what type what virus I've got unfortunately, they only told me I was positive for encephalitis. I've never had a cold sore in my life and the last cold sore my partner had was 3 years ago that came on just after recovering from meningitis herself, we didn't even know each other at this point. Appreciate the reply
Bullsh*t there's no treatment. Intravenous immune globulin (IVIG) is a treatment option for autoimmune encephalitis, which is when the immune system mistakenly attacks certain parts of brain cells, causing inflammation and injury. Viral encephalitis is when a virus gets past the blood-brain barrier and into the brain, causing inflammation and injury. Have you had an MRI? If you really do have viral E, you need a proper diagnosis (did they test your blood and CSF for all known/possible viruses related to E? what are your CSF white blood cell and protein counts? did they send both serum and CSF for autoantibody testing to rule out AE?) and prompt treatment (acyclovir!!).
Do you live in a rural area? You may need to go to a hospital in a bigger city for better care. No time to waste, especially if you're developing new or worse symptoms, like confusion or seizures. Get your partner and family involved.
And thanks -- I'm on my second round of COVID in less than three months 🙄
This is where I'm confused as the MRI came back clear as well as the bloods, the only thing that showed the infection was from my lumbar puncture.I'll be going to a different hospital for this tomorrow so hopefully I'll get more answers.
I'm lucky as I've got alot of support from family and friends who are pushing me to get seen. It's horrible relying on other people for lifts when there's a perfectly good car outside but feeling the way I do there's no possible chance of me stepping foot in there.
I've only had covid once and that was enough.. take care and wishing you a quick recovery
Sorry to hear you have COVID again. I miss your writings. Here's a picture of the Noah Ark I made for my grandkids. You asked to see this a long time ago... Sorry I'm soooo late to respond.
Hope your are ok and have managed to get some help from the hospital. agree with Kit defo treatment out there and anti viral drip I had viral e and literally went from having a dull headache to being in ICU. Not sure where you are in the UK but if near London, St George’s hospital defo know about it as that was where i was.
Bloods and ct scan came back clear, even though I'm getting these symptoms the hospital has once again discharged me and told me they think I've come to the end of the virus and I'm recovering. I explained how I was feeling, but after doing reflex checks, he was happy to let me go. I've been told to regularly take paracetamol and try and get my life back to normal. Am I being over reacting by saying I think there is still something wrong? I thought another L.P would of been the best way to check.. maybe other tests? I'm feeling abit annoyed as I've again walked away with no answers. Please tell me if iam.
Sorry for the rant but I know how I'm feeling and I don't think the correct tests were done
Unfortunately I'm not near London. I'm from South Wales. I'll definitely be going to A&E this morning to get answers after the information I've been told.
I’m so sorry to hear about your experiences. I had encephalitis and meningitis in February 2018. The cause for me was viral (VZV) and was treated in hospital over 18 days. GP’s generally know very little about the condition or consequences. Please consider seeking help and advice from The Encephalitis Society, they are wonderful. No one person will exhibit the same symptoms but please seek help as you have an acquired brain injury!
I’m happy to talk with you if you’d like a shoulder.
Hi Kieran. First of all I’m really sorry to hear you have been ill. Recovery from encephalitis is a long journey but things do get better. As it is a brain infection it often leave small or large brain injuries and forgetfulness and difficulties retaining information is a very very common issue. Again this also get better. The encephalitis society has a number of excellent information sheets about different types of encephalitis. Some are viral and some are autoimmune and they leave diffferent marks. My husband suffered from autoimmune encephalitis 2.5 years ago and things are much better now but I’m the beginning we were really struggling both memory wise and with his mental health. So I understand your frustration. I think you need to see yo hospital consultant again and this time please bring a friend or family member who can help you remember that they say. Big hug - it gets better.
All I can do is echo all the above comments. I had HSV over 4 years ago. My headaches weren’t as bad as you but I wasn’t sleeping or feeling right. Thought I had flu. Then seizures so in A&E straight away in a small local hospital who didn’t know what it was to start with so I was blasted with both antibiotics and anti virals. There’s so much they can do now to prevent this getting worse. Really hoping and praying you get proper treatment and support at your new hospital. I think you can tell we’re all shocked and supporting you so please when you can let us know how you get on. And yes. It gets a lot better over time.
Hi My daughter has recently come out of a 3 month stay in hospital after Auto Immune Encephalitis. She had similar symptoms to you and then had a seizure. Her type was diagnosed after a lumber puncture. Thankfully they were able to treat her immediately and she is recovering well. The fact they have sent you away after a diagnosis is horrendous. Good luck today and let us know how you get on x
I am very sorry you are having problems being diagnosed. I would encourage you to take a family member or a trusted friend with you to the doctor or hospital. When I took my husband to the doctor he thought he was ok. He did not know he was forgetting things. He was also having bad headaches. Please go to the hospital or doctor immediately.
My husband was diagnosed with Autoimmune Encephalitis in August 2020. At the beginning of his hospital stay his MRI was definitely indicating Encephalitis which is swelling of the brain. There are many causes of Encephalitis. Once they saw he had encephalitis they put him on antibiotics, anti viral meds and steroids. They were treating him for all causes of encephalitis. He would get better then go down hill again. The lumbar punctures (2) came back clear. It took a brain biopsy to determine he had NMDA Receptor Encephaitis. It took the doctors in the hospital 2 1/2 weeks to find out what type of Encephalitis he had.
Whoever goes with you to the hospital, please encourage them to write what the doctors says down. Notes are very helpful during this time to keep things straight.
Please keep in touch and let us know how things go.
I'm currently at the hospital after ringing 111. I thought it was best to ring to get an appointment to be seen quicker. How wrong was I! My father took me to the hospital to told me to go to, and then I get told they cannot see me due to no appointment. The advised me to ring 111 again, after being on the phone for over an hour they told me to make my way to another hospital that's slightly further away. I came here and got seen within 20 minutes.. they have sent me back to the full waiting room and told me to sit by the door incase I infect anyone. No pain relief or anything has been explained to me. They told me I caught it as I need to wash my hands more? I wash my hands religiously so really don't understand how they can say this.
Hi Mooney, sorry to hear about your Enc problem. Can't really add much to Kit's replies. Are you in the UK? That makes a difference. The NHS website has a lot of info and also the Mind one. Diagnosing enc is difficult. Hashimoto's encephalopathy can be brought on by thyroid deficiency. Auto Immune Enc is when your body's immune system attacks your brain by mistake. So there are no blood symptoms in some cases.
You will need epilepsy seizure meds plus steroids to dampen down your immune system. This will leave you open to everyday infections so avoid crowds. I had covid - and pneumonia along with the enc. I haven't been vaxed and would definitely not recommend it. Rely on your own defences. That's about all I know.
Exercise, good diet, vitamins, no alcohol plus rehab support via a social worker. I get suicidal so am getting Psychology, psychiatric, speech therapy, counselling helpers and Attendance Allowance, Carer's Support, Blue Badge and a Hidden Disability badge and lanyard, plus bus pass - I'm 73 and still recovering. I had several epileptic seizures treated with Intensive Care, drips and an induced coma. Lost a lot of memory and couldn't recognise myself in the mirror or remember how to shave etc.. No sense of taste, all foods taste the same.
Some hospital staff were great and lovely, others vile. You will get better gradually but it takes months and years. Keep going
How are you, Mooney ? I’m appalled the hospital sent you home after diagnosis without any treatment other than paracetamol ! The Encephalitis Society charity can offer your family support and advice if the hospitals continue to send you away. The charity is supported by some great NHS Drs. Ring them on +44(0)1653 699599 from 9am to 5pm Monday to Thursday, and 9am to 4.30pm on Fridays. Definitely refuse to be ignored.
To be honest, I'm not feeling the best, 3 times I've been to the hospital and once to the doctors and been told the same thing.. come back if it gets worse. I will definitely give them a call today and try to get some advice. My partner ordered some leaflets that got delivered yesterday, so I'll have a read today.
Encephalitis treatment is a real postcode lottery here in the U.K. I was lucky being a patient of The Walton Centre which specialises in the care of illnesses affecting the brain, but that treatment is not given in all NHS hospitals . The Encephalitis Society charity recognises, so they can give your family advice if you’re not being given the medical support you need. The group on here have all experienced encephalitis and know how hard the recovery journey can be, so we’re all here for you, too.
How are you doing, Mooney1989 ? I am reading the thread and getting angry it has been so hard for you to get medical attention. Have you gotten an MRI, LP, serum and CSF autoimmune and viral panels, etc.? CSF stats? Any evidence of seizures, then EEG as well? Have you actually talked to a neurologist who specializes in—or at least knows a lot about—encephalitis? Has that person actually diagnosed you officially? Are your symptoms getting worse? Any new ones?
The worst part is that you might not get what you need until you’re almost dead—morbid but true for me and many other E survivors. Please keep your family in the loop and have them advocate for you when you can’t do it for yourself.
I've had 2 ct scans that showed nothing, 2 lots of bloods taken that also came back as normal, one LP that came back as a positive result for the virus.
As for the seizures I believe I may of had a small one but may be wrong, I say this as Ive Stare/zone out, twitching in my right leg since this but mainly when I'm relaxed, confusion when talking to my partner and trying to get my words out but struggling even though I can feel them on the tip of my tongue. The hospital checked my reflection and reactions and they were happy with the way I acted. I rang the encephalitis charity today and spoke to Jon who was amazing and has sent me some stuff over email. I really want to say what we spoke about sunk in but unfortunate I can vaguely remember the conversation. The support I have from my family has been amazing but the support and help I've had on here has been greatly appreciated 🙏
Really sorry for the late reply, I haven't been feeling the best lately. My headaches are getting quite bad again unfortunately. I've been given a month off work now but worried about bills as I only get SSP so that's around £99 a week. I pay child maintenance every month and that's £560. I been in contact with maintenance and been told it will be sorted by April.. I'm unable to get benefits as I'm getting paid SSP so the stress from this isn't helping. I have no idea what the CSF number were and no idea of the virus name. I'm still being kept in the dark. I'm really fed up of trying
Hi Mooney. Kitnkaboodle’s advice to keep your family in the loop and to let them be your advocate is really important .
One of the problems with encephalitis is it can affect your short term memory, and you can easily forget important advice you are given. After I was diagnosed, a member of my family always attended meetings or joined phone calls with me to make notes on what I was being told by Drs.
At first I felt my family were being over protective, as I didn’t realise how badly my memory had been affected . But their notes became really valuable when I had to meet my employer to review my long absence from work. Keeping notes also helped me to see my gradual improvements as time went on.
Your close family might find talking to the encephalitis charity themselves might help, too, as it can inform them of the best way forward to supporting your recovery .
Thank you for the reply and sorry for the late reply by myself. I will definitely start taking family members to any appointments coming up but unfortunately with the way I've been treated lately by the doctors/hospitals I just feel what is the point anymore as people are not listening. It feels like they are waiting for me to get alot worse before they actually do something.
There’s definitely no apology needed - I know how hard the first year of recovery is . It can be very distressing .
If your hospital is not providing you with a decent treatment, you have a legal right to choose which hospital or service you go to and you can choose your consultant. If you want to be referred somewhere else in the country, you can ask your GP. I only learned this through a friend’s son’s treatment with cerebral palsy, as she chose to have him treated at a hospital in a different city.
Your family could try asking your GP to refer you to the Walton Centre in Liverpool for a second opinion . It is the only specialist hospital trust in the UK dedicated to providing neurology. One is Dr Benedict Michael, a neurologist who specialises in encephalitis.
This NHS link explains how your GP could refer you there:
I’ve just realised Dr Michael probably does Encephalitis research rather than sees patients . All the consultants have changed since my diagnosis in 2013, but I have asked my friend who works there who the current encephalitis specialists are . I’ll let you know as soon as she replies . 😊
That's amazing thank you so much , I had a possible seizure yesterday again. My partner got a few seconds on video to show the doctors as they want proof that I'm ill and suffering 🤔
Professor Tom Solomon was my wonderful encephalitis specialist consultant at the Walton Centre, Liverpool. Apparently he still does monthly clinics. You could ask your GP to refer you to see him. He did online appointments during COVID. You could ask if that was possible for you in Wales.
Thank you so much for the information, I've already spoken to John if I remember correctly, he was amazing. Unfortunately my partner could not be there through the whole conversation so I forgot most of the things that were actually said. I'll be contacting them in the near future again.
Oh he is amazing!!!!!! I have been to him about lots of things in the past. I’m so glad he was helpful - if he knows that you may forget things, he will email you too just in case your partner can’t be there next time. Take care and keep us updated 👍👍👍
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thank you so much. I've signed up to a few things to do with the condition. 
so the stress from this isn't helping. I have no idea what the CSF number were and no idea of the virus name. I'm still being kept in the dark. I'm really fed up of trying 
