My wife was diagnosed with encephalitis following at my insistence that she have a MRI scan following a seizure and collapse.
This was just over 3 weeks ago and she has received a 3 week course of anti-viral antibiotics. 16 days intravenously and another 5 days in tablet form. She also received daily injections of blood thinners until release from hospital. Her daily medication also includes anti-seizure & anti-sickness tablets and paracetamol.
She will receive her first out patients appointment via telephone with a Consultant Neurologist on Tuesday. What questions and what can be done to safely get her back to driving independently .
She’s never had a seizure before and does not suffer from epilepsy. What can one expect to happen. Constructive advice would be greatly accepted.
Following her collapse, she was taken to A&E via ambulance . It took 3 days of being release, then returning to A&E before at my insistence she have the MRI and the viral infection was discovered. It took another 3 days before a lumbar puncture and a further 5 days before a face to face with a Consultant Neurologist, who immediately requested a 2nd MRI (I’d been asking 5 days earlier for this) at this point the MRI showed the swelling had increased.
Written by
Maverick777
To view profiles and participate in discussions please or .
Hi, I am sorry to hear about your wife's recent diagnosis. We may be able to help with some questions, if you haven't already been in touch. Our helpline number is +44(0)1653 699599 or email support@encephalitis.info
I’m sorry about your wife. This is a scary time for your family. Is the virus known/identified? What are her other symptoms? Encephalitis tends to affect every body part and system—in its severe form.
I will likely never drive again, but I know others who can, but it took them a long time to get to that point, especially if they had seizures in the beginning (not everyone who has seizures from encephalitis goes on to develop epilepsy, but some do). A little patience will go a long way right now. Measure progress in terms of months and years, not days and weeks.
But I don’t know your wife’s case. Maybe it’s “just mild.” The timeline and after-effects are quite different if that’s that case. It will still take a while to ascertain the extent of the inflammation (my brain was inflamed for months) and impacts (mine caused severe damage and permanent conditions and disabilities and even new rare diseases).
From what we have be told by the NHS….very little. My understanding, is that the viral infection can only be found using a MRI scan and a lumbar puncture to confirm the virus, we were never informed that it could be identified.
Mere blood tests and urine test will not detect the virus, one assumes those will show an imbalance. Shortly after her seizure, she illucicnated and thought all people looked similar or related.
How did you know that your brain was still inflamed? We have been told that the NHS do not carry out further MRI scans. Which makes me wonder how they know it’s cleared up etc????
All the best and thanks for your reply. Were you ever given a list of what you should and should not do?
Yes, the particular virus can sometimes be identified using blood and CSF fluid panels. For example, herpes simplex virus type 1 (cold sore) is often cited as the most common viral cause of encephalitis. I am not saying that's what your wife has, just that identification is sometimes possible. For me, it wasn't. We don't know if mine started as an unidentified virus or has been autoimmune the whole time. Acyclovir is the main antiviral treatment option, regardless of virus type, but different viruses can affect the brain in different ways, so it is useful to have as much information as possible.
My follow-up MRI showed (continued) brainstem inflammation a couple months out of hospital. And NHS wouldn't know that without further testing. Ask for what you want and need. Be annoying. Get satisfactory answers.
And no, I never got a list of what to do and not do. I got sick at the height of COVID, and I was an ICU patient who was pushed out the moment I could stand for longer than two seconds. All of my knowledge comes from fours years of advocacy on my own behalf and help from family and a few competent medical professionals. But, early on, I couldn't advocate for myself, let alone think, speak, write, or walk. It was a hellish process. Give it time. And it sounds like I was sicker than your wife, so that's good... in a very macabre way haha.
Hi Maverick, I'm sorry that yourself and your wife are going through such a difficult time. Sounds like it's also been frightening, too.
My husband had an incident of encephalitis at the opening of this year, accompanied by focal seizures. His brain situation is different to your wife's, but some things we totally relate to:
His E took several weeks to diagnose (the things you describe, lumbar puncture, MRI, EEG, full body CT scan, various specialist blood tests). He also had a hospital stay with IV steroids and came away with rattling with about 5 different medications, inlcuding for epilepsy. Since then, he's been stable and made initial strides of progress, followed by some excruciatingly small wins.
Our consultant has been open-handed with us throughout. He says that, for my husband, the NHS won't do another MRI unless there is change (bad change). We will know that he is getting better because he will be stable, not having seizures, and gradually gradually gradually becoming less tired and the swelling goes down and the brain recovers. When the fatigue drops off. At some point after that, they'll do an MRI to look for permanent changes and scarring, but while he is still recovering, he didn't feel there was any benefit to it.
The type of E my husband experienced is due to an autoimmune disease, Hashimoto's Encephalopathy. There's not much data around for what happens next, so the consultant has broadly suggested 3--8yrs for things to settle down. That was a surprise!! Some people seem to recover from E and resume their previous life - but we've come to understand that our life is going to be very different and are grateful for each step forward in memory and skills.
If your wife has viral E, you might be on a different track to us and not waiting 3--8yrs
My husband misses driving most of all. Such a lack of independence. We daydream about him driving again -- the epileptic seizures have been stable for the past 6 months, so in theory he could reapply for his licence, with GP support. But we also know that he is still liable to forget where he is and get lost because of his E. So it's a dream at the moment.... but hopefully at some point in the next 3--8 years
Anyways. Enough about us. My message to you two is, hang in there, it's early days, be strong, each day is going to be different, there is hope of recovery... Be brave.
P.s. I should probably add, he also had no epilepsy before he had E... the swelling triggered the seizures. And since he's been on medication, he hasn't had any seizures either. So if it weren't for the other effects of his E, he would probably be looking at driving again fairly soon. There is hope
Sorry to hear you are having such a rough time. Diagnosis of non-viral problems is pretty difficult. Mine turned out to be auto immune Enc. so there was no infection to be found. I'm on immune suppressants, plus anti-seizure, plus others.
I get infections easily so life can be hard, I get in hospital with sepsis symptoms and go on antibiotic drips for a few days. I'm in my 5th year and have recovered enormously. I can walk and talk and handle a fork. Mental and physical exercise is key, plus rest and sleep and a good diet. The internet is great for following things and reading.
I reckon I'm almost back to normal - but who knows? I go walking, and have returned to my sailing club (tentatively). I avoid crowds, noise, bright light, and due to a spinal injury have to take morphine and pain relief. I have to lie flat till the pain goes. With help your wife should make a good recovery. Love really shows at times like these.
My best source of support was through a social worker via our GP. She organised speech therapy, psychotherapy, psychiatric help, physio, it all helped enormously. My consultant neuro doctor was hopeless, false promises and laziness. Bless the both of you. Best wishes G2
I had 3 seizures in rapid succession but none after that. I was incredibly lucky, as I realise now, that the ambulance arrived literally in 5 minutes and there was an amazing team in A and E looking after me. Plus Dr who knew exactly what was wrong and treated it instantly. I had HSVE but also on my GP letter it said meningioencephalitis so they blitzed me with Acyclovir and antibiotics. They nearly let me go to soon but my neurologist stopped them. I had 2 lumber punctures and an MRI. I know from reading so many posts on here how absolutely blessed I was.
Ive written about my road to recovery a lot on here before so suffice to say I had no more seizures, was on Kepra anti seizure drug for 3 months, had to relearn things like walking, words, reading, , eating the right way. And of course incredible fatigue. That was 6 years ago. Its been a slow and steady progress since then with some big and little bumps in the road, but now i can do almost what I could before. Drove within 18 months too even though E had damaged my eye.
So I’m sorry, it’s early days but as Kit said everyone’s progress is different. The big big thing is to pace yourself, don’t push it. Remember your wife’s brain has taken a right pounding and like any bruised and battered organ needs time to recover. And finally please read Lettee to my Brain on the Encephalitis society website. It’s a really valuable guide. Good luck.
The treatment has remained the same and she has nearly finished her course of antiviral antibiotics.
I had previously requested (30/08/2024) a face to face meeting with a Consultant Neurologist. On 09/09/2024 the consultant visited Julie on the Ward and immediately requested a 2nd MRI. Which revealed that the swelling had increased.
On the 3rd Sept 2024, she received a text appointment regarding a Neurology appointment for 10:00 hours 17/09/24 and a further one 13th Sept 2024. Neither of which mention that this was a telephone appointment only. NB: We never received a letter.
1 hour before the scheduled appointment, it was cancelled, as the consultant thought it more prudent to have this appointment following a second MRI scan. At the time your department could give no time frame for this. I immediately telephone the consultant’s secretary and requested that the scheduled appointment me reinstated…..it was and a lot of questions we had were answered.
We now have a 3rd MRI booked for a two months time with a further telephone appointment with the consultant. Which we have accepted as they have not offered a face to face appointment. Which I am disappointed with, as we wish to be shown the scans and these to be explained. I also feel that a face to face will allow a more informed diagnosis of my wife.
She has nearly completed her antiviral antibiotics and will remain on anti seizure medication. Other than that we are totally in the dark.
I'm so sorry to hear that, Maverick. 💔Hopefully third time lucky that your wife gets a face to face appointment with her neurologist soon.🙏 .
It's good to know that your wife has nearly finished her antiviral treatment, and it's ok to remain on anti-seizure medication like I have been on all my life and will be forever.
However, it's only early days for Julie. I would wait a while before she thinks about overdoing things, i.e doing what she did before she was ill. I understand and sympathise that life will never be the same again for you both, but slow small improvements can take some time, and I think being patient with your wife, and if she tries to be patient with herself, and try to live in the present.
I'm thinking maybe find something your wife can do to distract her even for a short time each day, it could be anything from listening to some relaxing music, looking at family photos and/or maybe get her a colouring book and she could maybe do some colouring or something.
However I didn't have a before experience so I can't emphasise.
Recovery and/or medication/treatment is different for everyone at different stages of their encephalitis journey.
I'm more or less near the end of my Herpes Simplex Encephalitis journey because I had it the day after my first birthday.
So the first thing I would focus on is yiur wife's health, that's priority over everything else, you can think about other things later.
I wish you and your wife the best of luck with her third MRI scan, fingers crossed for both of you.
Well done on pushing this. Keep going. Ask for a face to face. Do what you can. Post E recovery advice will be invaluable. Although do use the Encephalitis Society support too.
Everyone’s recovery is different, Maverick. Some people do successfully drive after having encephalitis . The best advice I could give would be to wait at least 2 years after a seizure before attempting to drive again. It is important to see how your wife’s brain copes with daily activities , first .
I had my first seizures during my first 4 weeks in hospital , but they stopped with the right meds. The seizures reoccurred 6 months later . They coincided when I was stressed, having to meet my employer for a job review.
My consultant advised us then that I would have to wait at least 12 months after that seizure until I drove again. But then another seizure then occurred unexpectedly at the end of that 12 months , and I realised that I just can’t risk driving . My seizures most often occur after I’ve had to concentrate talking to lots of people in a noisy environment, like a family party . For me, driving would require too much concentration to risk being at the wheel .
Hi, my major seizures happened when I was sleeping (I had 3). Initially I was told that I had a seizure ‘episode’ that counted as 1 and that it is 6 months from a single seizure until you can drive again. Then I had another couple of major seizures in November, making it 12 months from that date (if you have more than one seizure it is 12 months until you can drive). I then continued to have mini seizures - it felt like a nausea and loss of focus, couldn’t speak, etc. - and these last happened in May this year. I’ve now been told that it is next May at the earliest that I can drive due to that. Annoyingly, one of the meds to accompany the steroids I was taking had seizures as a side effect, so it could have been that which caused the seizures. What they don’t tell you until later is that if they then change the medication levels it is then another 6 or 12 months from that change as the concern is that you could have a seizure due to the med change. I have my next appointment this month and I’m hoping I just stay on the same anti-seizure med levels and combo so that I can drive. I suspect, however, that they will change the dose and I’ll be October next year as the earliest. i sometimes sit in my car imagining driving as I miss it so much - I love driving, it’s a hobby as much as a means of transport, but I’m also glad to be alive, so will just have to wait and see what happens. Basically, don’t get your hopes up too much, don’t commit to a date in your head, just stay healthy and hope that one day you get the license back - that’s what I’m doing.
Upon admission on the 25th August ‘24 I was diagnosed with Viral Encephalitis. I have asked several times as to what virus was found. I had a lumbar puncture, still no definitive answer.
Following discharge I remained anxious with the worry that it could have been autoimmune encephalitis or another cause.
Despite many requests from myself and my husband, we could not obtain a face to face appointment with the NHS Consultant Nuerologist
Due to my concern, my husband arranged a face to face appointment with Consultant Nuerologist on 3rd Oct at the Nuffield hospital (private)
We asked that all my scans be checked by him and preferably be brought to the appointment by the consultant to help me understand what has happened.
The consultant told us this was not possible, however 4 days AFTER the appointment I received an email telling me to sort this out myself. The nett result of this was that the consultant must have been speaking to us without the scans and from his memory of an earlier look.
I explained about my concerns re cause to the consultant and who was able to explain to me how the results of the many blood tests would have ruled out my immune system attacking itself, however I then asked about the encephalitis possibly being caused by undiscovered tumours within my body ( as I had read that this is indeed sometimes the cause)
The consultant advised that yes it could, but that the full body CT scan would have been checked to rule this out when diagnosing upon admission. I couldn’t remember having this scan but as I was drowsy I took it at face value.
I wasn’t convinced that my wife had received this scan either so wrote to the private consultant to confirm.
Sadly the consultant has replied that he made an error and that a full CT scan had not been done. Therefore I do not understand how a full diagnostic can be given as to the possible cause and I am left with the worrying doubt of possible tumours.
I am Emailing the NHS consultant requesting a full MRI body scan to use this out. Obviously I don’t want another more harmful CT scan, This could have been avoided had it been done the first time!
I’m sorry to hear that. It’s bad enough to have to go through this. My wife has carried the brunt of the seizures and my illness as she remembers going though it and all the worry whereas I can’t. I empathise massively with what you are going through as a partner of someone with this. We’re lucky to be in Glasgow where the NHS neurology department is amazing. TBH, after my seizures the hospital bombarded me with so many treatments to clear whatever it might be that, by the time they tried to find the cause I had no infections, hence the AI diagnosis being most likely for them. I had a plasma exchange and everything just to be sure. I’ve also had multiple MRIs and am seeing my neurologist again this week to get an update on progress. I am also seeing the Nuffield as we think that it might have been a sinus infection that caused it and they have been great too. I hope that you get the support you need.
My wife is having her third MRI next week. It has been changed to a Contrast MRI. She is however concerned about having metal injected into her.
What are the pros and cons to this procedure please?
I have now received a reply from my wife’s consultant. His response somewhat contradicts the private consultant. He has said that there is only a small suspicion of viral encephalitis. Which leads me to believe there must be another cause and as the autoimmune cause was ruled out. Therefore we have a possibility of a tumour. Hence my request for a full MRI.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Hello all- new to the forum! 
Meningitis/Encephalitis- My Journey
How long to heal?
Meningitis / Encephalitis Recovery
