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Brain injury with no cause or diagnosis

My 26 year old son became ill a month ago. It started with slurred speech and him saying ‘I feel out of it’; he had come home from work poorly. Anyway by morning he was confused, slurring his words and couldn’t move, that was the Tuesday, by Thursday he was in a ventilator, in an induced coma in Critical Cate where he remains sleep for 2/3 weeks.

He is on a Neuro ward now but still poorly. He can just about feed himself although describes ‘eating like an animal’, can’t walk, can’t see properly and can’t talk properly. He can use his arms but not hands properly.

All tests including bloods, EEG, MRI, CT and 2 lumbar punctures have been negative so there is no explanation and no diagnosis so doctors aren’t treating but doing rehab.

I am just shocked. I sit with him and have to stop myself crying. He suffered with low mood before and didn’t think his life was up to much and know if he can’t work or drive it will destroy him. I can’t stop thinking about what the future holds and he is ibvuluiusly constantly thinking about it also. Think I just need to talk but with likeminded people who are going to understand but no just give the ‘he Dan do other things’ option.

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I experienced something similar. Though not exactly the same. It seems that with brain injury that is often the case.

I had a seizure 7 years ago after. It occurred after a bout of severe food poisoning. Muscle spam, slurred speech, confusion, fatigue.

My speech and cognitive processes where adversely effected in the weeks there after. I had constant headaches. My Mobility was reduced.

I had all the same testes but without any conclusive results.

I have recovered to some extent but I remember exactly what it’s was like.

The shock. The horror. The suffering. The anxiety. Feelings of helplessness.

It’s extremely difficult, I know. There are many people who know exactly how you feel. You are not alone.

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may i suggest you find your nearest headway group, its for people whove suffered a brain injury.

you will meet people whove been in the situation youre sons in now and how their journey is going and more importantly from your perspective youll meet the darlings who put up with us.

good luck and dont be a stranger, even if it is to sound off

steve x

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Hi,

This sounds exactly like my experience.

I was I’ll on and off for about 3 months following a flu vaccination. My symptoms were always flu like accompanied by headaches.

The GP just kept sending me away saying it’s a virus, you’ll be fine, but I wasn’t. Eventually I was getting ready for work one morning and I overbalanced but could not get up.

To cut a long story short I ended up in hospital that day and in a coma within 24 hours.

I was diagnosed with viral encephalitis, in a coma for 3 weeks, in hospital for 2 months and then 5 weeks in rehab.

I could not move initially responding only by moving my tongue. By the time I left to go to rehab I could barely feed myself but had been having physio to help me stand and walk.

Rehab was brilliant, they taught me to feed myself and wash and dress and consequently walk unaided again.

It is now 6 years on and I am the best I have ever been since that awful day, but it has been a long hard road. I had to give up work and I stopped driving.

My sight was affected, I have lost some peripheral vision and my night vision is terrible.

I was 59 at the time and my family were told if I survived I would be in a permanent vegetative state, but that was not the case.

They never found which virus was to blame despite lumbar punctures.

Your son is still young and providing he really puts his mind to it he will improve his outcome. Brain injury is devastating, changing lives beyond recognition but the brain is very”plastic” and can relearn many tasks. But you have to think back to how children learn and mimic that. Practice, practice, practice repetition until you could scream.

I started with baby jigsaws, learning to write again with the practice sheets used in schools, I couldn’t read properly because of dyslexia. But it gradually came back, I kept trying beyond the frustration!

I can’t promise to what extent how your son will recover but I’m sure he has the potential to progress.

Yours

Janet x

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Well explained Janet! A good story that will undoubtedly help all who read it!

I went to bed feeling tired/exhausted to the extent my wife called the Doctor who arrived very quickly. Having examined me he asked if we could get to the Hospital as Ambulances were struggling to deal with the calls for their service.

My wife took me to Hospital where I was admitted to intensive care and looked after very well. I was seen by a number of Doctors during the following day and moved to sideward.

I was moved to a general ward where I was seen by more Doctors, at this point I was feeling better and allowed to receive visitors. I was unable to walk but otherwise, I felt O.K. I had no idea about my condition.

The Doctors wanted to keep me at Hospital to see a Neurologist but no date could be set. I asked to be discharged. After proving I could walk with the aid of a walking frame, and that the facilities at home were acceptable, it was agreed I could leave provided I attended the appointment they would make for me to see the Neurologist, and have a scan the following day and receive an O.K. report.

All was good, I left Hospital and went home with medication. Returning to honour the appointment with the Neurologist who diagnosed Ataxia, a degenerative brain condition which could not be cured, although it could be treated and slowed.

That was about four years ago. Recalling the night the Doctor was called to the house when I thought my body was shutting down and how my body is now, today, June 2018 I feel I have escaped, have been reprieved, and I have been lucky, The Neurologist got it right, medication included B12 injections quarterly, and visits by a therapist to exercise for brain re-training.

I can work in the Garden, Garage, on the computer doing various tasks and I feel good with my output!

I attend a physiotherapy course twice a week which I recommend as it teaches: Breathing, muscle building, and Brain re-training, an exceptional training programme.

It requires practice, practice, and more practice.

I have a great Medical team who I thank sincerely for the care they give.

Hoping this may help others,

Stedman.

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Viral encephalitis can be low grade or straight to hospital & into coma, it can be acute or chronic. Doctors need to update medical education and catch up instead of labelling undiagnosed, unexplained etc etc. A lumbar puncture is literally a stab in the dark destabilising brain pressure at an already stressful time for the body. It simply tells the doctor what they already know, there is a virus! What if the virus could move from the mouth via the sinus and back of the nose into the brain? Undetected to todays tests it seems.

Herpes virus - common to humans rewire.news/article/2015/11...

- comes in 8 different types. medbroadcast.com/channel/in...

There are numerous other viruses also.

My guess: Your son's low mood may have been due to a virus encroaching into his central nervous system in a low grade way over a long period of time, body trying to function without the right vitamins and nutrients and eventually the virus gets free rein. A stressful event at work was the trigger to the virus moving into an acute stage.

A great book to combat viruses and build immunity (it may come calling again in stressful times like food poisoning or vaccination) is by Stephen Buhner - its called Herbal Antivirals.

Good news is by changing the diet, boosting immunity, the brain can rewire, what has been lost can return. Albeit with weaker nerves. How much it returns and how strong it is down to the individual, down to determination, dare I say it resources to invest in recovery, and support systems. NHS is just waking up to how diet plays a part in health and especially viral management.

Learn all about anti-oxidants and eat / supplement as many of those as you can day to day, increasing dosage when moods are low = viral activity.

Best thing you can do is remove all fizzy canned and bottled drinks that the hospital peddles, insist he doesn't buy chocolate or sugary snacks from the hospital shop (that is food for the virus driving the urge for sugar) and bring him some refreshing homemade drinks and tea bags with anti-viral properties.

buddhateas.co.uk/teas-herbs...

What do you mean by " eating like an animal " - he is hungry or his coordination is bad?

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His coordination is bad so he grabs at the food.

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Might be easier to eat raw - bowl of radishes or a few carrots, or depending on his chew, go into soups, mashed potato with garlic, baby foods so he gets nutrition but is light on digestive load. Its been just a few weeks. It is a shock for him and for his family. It will get better with determination to eat the right foods, get sleep, enjoy quiet to heal, get regular exercise, even if its sitting up in bed and swinging arms on the hour every hour for 3 minutes! It relaxes breathing which manually calms the vagus nerve. Good luck, he is in my thoughts. Best.

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Have they cultured for infections, including fungal. Im only throwing this out there because my hubby was ill and ended up being a fungal infection. Have they had infectious disease see your son?

Prayers for you and your family. ❤

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Thanks for the reply. Yes they did cultures and had course of antibiotics just in case.

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They did on my husband too but not for fungus until after his surgery.

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Hi

Keep positive I had tbi 24 years ago. Unconscious for 4 months then ICU for not sure how long. Receive rehabilitation therapy for a few years. Now I am able enough to live in my own house independently. I cannot walk far or drive which took me years to accept. Loosing my independence and my job was my main issue also loosing my memory. I have a good family which has helped me cope. Unfortunately my husband cannot cope with my moods so he is leaving me know so I will have to employ staff to help me. Yes I realise I will never be the person I was and it has taken me 24 years to understand my situation. Talking on this site has helped me understand I am not alone. So encourage you son to communicate with people like him on this site so he does not feel so much alone with his issues😀😀

Good luck

Be available for your son and love the new person he has become.

Best

Wishes

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Kirk5w7 advice about the brain having the ability to reconstruct itself is spot on, it is a long process they say 1 - 4 years to achieve what's possible. You do need to do a lot of what is initially apparently pointless practice but persistence can sometime achieve what may seem impossible and it's something everyone with a TBI as to do

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Call me Janet Sealiphone, that’s just my sign in, I’d rather be known by my name.

And thank you for the endorsement, I’m nearly back to me but it’s been a long hard road, and I still do jigsaws daily, and play games on my iPad interminably, got to keep that brain working!

Janet x

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I'll try my best but even before my TBI names were difficult to recall.

Once I started working at a new agency and wrote everyone's name down, with a brief description of them (some weren't flattering). When I lost the sheet of paper great embarrassment ensued.

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