New to this forum, hello! I had a seizure in the car so was very lucky to survive that with no injuries, nothing like this has ever happened before I was discharged from hospital 18th October with no further symptoms but frustratingly there is only a working diagnosis of HSV encephalitis as the initial lumbar puncture/PCR test came back negative, then I got a blood clot on the lung in hospital so they couldn’t redo the test. Had two MRI scans in hospital and now so have in a waiting game to have a further MRI- 6 weeks they’ve told me. I’d love a full diagnosis so I can try and get on with things, to hedge their bets the neurologist has had to tell me that there is a possibility it could be a brain tumour which is stressing me out. But I’m feeling pretty good and back to myself, just a bit tired but otherwise back to my old self. Any help or thoughts from anyone would be great to hear.
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Tiger11GW
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Hi Tiger, I'm amazed that you managed to survive a seizure in your car. Well done I must say. I generally don't know I'm having a seizure till I wake up in hospital. Waiting for test results can be pretty nerve racking. I think I had four lumbar punctures before they decided on a cause, steroids, anti-biotics etc. seemed to be the treatment. Enc symptoms of great fatigue, memory loss, taste and smell, unusual behaviour, hallucinations etc. - it's a mixed bag. Blood clot on lung .... have you had the vaxx?
If it is Enc it may take a couple of years to recover most of your faculties it's a slow process. The Enc can cause scarring of brain tissue which can be revealed by the MRI scan. This can cause crossed wires in the nerves that transmit data. When I came home I couldn't recognise my house, clothes, tools or remember how to shave. My face looked unfamiliar too.
All sorts of things cross your mind, you have to see the funny side. Good luck with the scan.
Thanks Gandalf2, I am very lucky to have survived the car crash- I’ve never had a seizure before and had another whilst I was being admitted to hospital. As you say now it’s a waiting game to find out the diagnosis.
I must say I also feel lucky given that now I’m home I have very few symptoms so seems a mild case!?. I was interested in hearing other stories too about how long it can take to get diagnosed properly, as that is the biggest worry. I had my vaccination months ago so can’t see how it could be linked to that, the blood clot they thought was because I literally was bed bound for 3 to 4 days. Who knows- more questions! Thanks Gandalf2
Welcome to the forum! Thank you so much for sharing your story.
It sounds like you've been through so much and this is a place where you can learn a lot about encephalitis and also meet others affected.
I'm so glad you are okay after suffering a seizure whilst in a car, that must of been really traumatic followed by the uncertainty of your diagnosis things must have felt really overwhelming. I found it hard to get a diagnosis and I found this really upsetting and I spoke to a counselor/therapist to help deal with some of these feelings and I wonder if this is something you would be interested in?
Wow, that seizure and crash was frightening to read about! It sounds like you are doing well with recovery, though. You are quite right; the waiting game is the worst of all.
In my case, I was in a coma for the first 3 days of my hospital stay. Initially, they thought I had sustained a drug overdose. Many, many tests proved that to be the wrong diagnosis. Lumbar punctures, MRIs, blood tests finally pointed to the true cause of my illness.
The thing is, it took many tests to finally get it right. Some of them suggested that I might have had other problems/conditions, but they proved to be false. The prospect of a brain tumour is very frightening. However, I'd wait for real tests and data to come back before getting too worried. This might be a fine ideal, but you might still worry quite a bit. After all, we are only human.
Hoping you get some real tests and data as quickly as possible!!
Thanks OldGnome, some great advice there and I’m getting some counselling help to help me not fear the worst I’m this situation. Reading that you were in a 3 day coma also sounds horrendous so your resilience to get through this must be very high! It’s also reassuring to know that there are others out there who were not given a straightforward initial diagnosis and maybe I was asking for too much right away, and I’ll need to be patient.
Welcome to the forum. Thanks for sharing your story.
I can well imagine that it must have been EVER SO frightening for you having a seizure in a car. Aww .
I was diagnosed with viral encephalitis and status epilepticus just after my first birthday and apparently I had my first seizure at home.
I believe that I was shaking, vomiting, wouldn't take my bottle, my Mum thought I had the flu and I had a high temperature. However as soon as my Dad rushed home from work in an emergency I was rushed into hospital and I believewas in for 6 weeks I had all the tests bar MRI because they weren't out in the 70's you see..
It's only since 2018 when I looked at the Encephalitis Society website and saw that if someone comes into contact with someone who has a cold sore they can
get Herpes Simplex Viral Encephalitis so I asked my Dad if he knew if I had had a cold sore or come into contact with someone who did and it turns out I didn't have one but someone at my party had one and like all babies, I got passed around from person to person, everyone was hugging and kissing me saying 'aw isn't she beautiful' and this is how I picked a virus up so now I know it was HSV Encephalitis and throughout my childhood I was often hospitalised with generalised repeated seizures that sometimes lasted twenty minutes to half an hour, and some less. I often used to wonder what was going on until I got to at least 6 when I asked my Mum what I was taking medication for and in the end she told me.
Then when I was about 10 she told me that I had had encephalitis which apparently was why I was epileptic and it was only when I picked up a bug/virus/infection and a fever that "used to" trigger my seizure off (at the time). I have had none sine about 1994.
Sorry that I can't empathise about hoe you felt after your first seizure and being back to your old self. Well because you see I had no idea what was going on at the time and I can only remember anything from the age of about 2 or 3 like most people, so although this might sound a bit strange to other sufferers on here, that I am still the same person even after having encephalitis but thats just a "so-called" normal life to me.
But I do completely understand where you are coming from and trying to imagine myself if I were in your position what would I do, well knowing me I would have most probably try to find a hobby or something to temporarily take my mind off my worries even if it doesn't take them away completely but it's better than dwelling on them constantly and I would have returned to them when it was/is necessary, and if I found myself doing otherwise, I think I might stop and think, write down my worries/thoughts and maybe talk to a family member or something.
I hope to goodness that you get a concrete diagnosis as soon as possible!
Best of luck with your MRI in 6 weeks!
Please feel free to ask me any questions anytime I'm always here to help everyone! 😊
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