Wernickes encephalopathy : I'm looking for anyone... - Headway


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Wernickes encephalopathy


I'm looking for anyone who has any info regarding this brain disorder (wernickes encephalopathy )??

My husband was diagnosed 5 months ago which included symptoms of nystagmus, ataxia, hypothermia, confusion, hallucinations, stuttered/slurred speech..

He was so bad he couldn't walk or talk and had 21 bags of iv pabrinex in 7 days..

Now he has brain damage...memory loss and an inverted foot with loss of sensation down his left side and can't walk unaided...constant headaches and speech can be slurred and stuttered... some days are worse than others..nobody knows much as apparently uncommon...but he is now registered as disabled and im his carer...

All due to lack of b1 vitamin (thiamine) which his dr did not prescribe...

15 Replies

Hi Poggla, and welcome I wish we were meeting under different circumstances.

I don't have knowledge of Wernickes Encephalopathy but suffered from viral encephalitis almost 4 years ago and it has been a long hard road to travel.

I was in a coma for 3 weeks and hospital for 3 months, the last 5 weeks in rehab. I was told I have recovered extremely well considering I wasn't expected to survive at all, my major organs, kidneys and heart were about to fail because of the low level my brain was functioning at, but I rallied .

I am left with short term memory issues, which are improving, balance, fine motor skill problems, visual problems, lucky here as many are left blind or severely visually impaired, fatigue, and other minor issues.

Have you contacted the Encephalitis Society? They can be a real help as is the Headway helpline, details pinned on this site.

Encephalitis is not known about generally as only about 20 percent of sufferers survive, the swelling can overwhelm the whole brain and be so devastating ,and so many are left with far reaching problems.

I have mainly devised my own rehab programme, the unit helped me learn to walk and care for myself, but I have aided my recovery with jigsaw puzzles, my brain struggled with these at first, I started with toddler ones and progressed to 1000 piece ones, I knit and crochet and paint by numbers.

I find reading less pleasurable now, I can't remember the plot of a book once I've put it down, but audio books are good. I like to garden too when the weather is warm.

I think sometimes it is more difficult for many men as they often have less hobbies to fill their time with but your husband needs to fill his time and keep practising and trying if he finds things difficult.

The brain needs repitition to establish new pathways to replace the old damaged ones, as a child does when learning, and the brain will continue to make these new pathways while you keep trying all through your life, just don't give up.

I find swimming great too, you don't fall over when in the water, and this year I intend to go along to the gym and see what regimes might suit me. I have a treadmill at home as I can hold on when using that.

Sorry for the long diatribe, just a few pointers, come back again if you need more support or any questions, I'll try my best to help.

Acceptance and patience are what is needed, two attributes that are so hard to come to terms with, but you will find us wry welcoming on this forum and very eager to help. We have all either suffered brain injury or are caring for a loved one and understand what you are going through.

Much love Janet xx

poggla in reply to Kirk5w7

Hi janet....Thankyou for your reply....its just so frustrating when no one can tell you prognosis....we have been told that after 21 bags of thiamine there should have been a change in mobility....speech and eyesight within a few hrs or days....just seems that maybe treatment was alittle to late as had an ambulance from home and was dr that admitted him to hospital....my husband is 36 so this is hard for him to deal with...what with a 4,11 and 12 yr old aswel...

They have said he may permantly be left with some inpairment or could take anything for a yr upto 10 yrs...

I haven't thought about encephalitis society....I am in contact with young dementia....am awaiting to see specialist in may....but that will be 9 months after diagnoses...

He did too much yesterday...went for a walk and lastnight was in alot of pain when walking and struggled...I am vigilant but also a worrier...I have been told if he loses his speech, mobility and is dizzy I am to call an ambulance. ...now awaiting an appointment to see nuero about possible epilepsy...He already has a benign essential tremor which is controlled with medication....he's lost all independance but I try not to do too much for him as he isn't completely incompetent. ..and needs some independance for his own sanity...driving licence was surrendered too cos weak left leg....

I hate seeing him upset and there's times I cry...but just glad that his memory isn't complete in paired...that is his main worry...

Sorry for long post...ive had to research his condition and it kinda keeps me going....Some of it I don't like reading but it is what it is...

Xbox is what keeps my husband going at mo...but he likes to get out but after yesterday he won't be going out for couple days because of his leg...can't seem to win either way...and I don't drive. 😕xx

Kirk5w7 in reply to poggla

Hi again, I know how hard it Is but your husband has his age on his side. I'm now 63,I was 59 when this happened. It's so frustrating to deal with the impact of all the issues. I no longer drive because of my slower reactions, the world is a very fast moving place and I no longer react quickly enough, but I negotiate buses and trains just fine.

It must be hard too with a young family, I find noisy children difficult to cope with, I have been known to go out with my earphones in as if listening to an I pod as it reduces noise input and helps me cope! I have had to come in from the garden when neighbours children are out playing, I must seem a miserable old fogey at times. Not so, I assure you, I just remove myself from situations difficult for me to deal with.

I have no intellect impairment either which is good news. Make sure your husband learns as much as he can, you also, about his condition.

Physical impairment is much easier to deal with, there are usually ways round most issues, and think out of the box.

Put his energies into doing those things he can do and look for other things to stretch him.

When he has recovered from his problem, walking will help. I like to get out when the weather allows. I've been known to take the bus into Manchester and walk home along the canal, only done it once, it's 4 and a half miles and I underestimated how exhausted I would be, but I shall do it again when the weather picks up.

I, luckily, have not developed epilepsy, it was never mentioned to me, but I am hopeful it won't rear its head.

I find my GP very approachable too, I am the only one in the practice to have suffered from this and they are learning from me, so I share all my concerns and the way I deal with them with the practice.

No one could have foreseen this happening so we just have to get on with it. I am very lucky to have the loving, supportive family I have. You will all be ok, just remember time, patience, perseverance and acceptance.

My love and thoughts are with you

Janet x

Hi. I too was going to suggest contacting the encephalitis society. I only have Epilepsy, but am interested in the brain.

Hi Poggla,


Frustrating as it is, since the correct , timely treatment can restore function, it is a rare disease and obviously not suspected at first in your husband's case. Thank goodness it was finally realised and stopped in its tracks.

I was suspected of having Encephalitis 3 years ago but sadly, due to a clear MRI ( which can happen in early stages ) was sent to Psychology instead of receiving any medical follow up/rehabilitation. There was also the possibility of another concurrent neurological process ( MS ) at the same time. I am left with a number of things: memory and concentration issues, tinnitus, spasticity etc. I am v. lucky, after 6 months I regained enough function to go back to work part time. After what appears to be a recent relapse ( following UTI/sepsis ) I am once again on the up and hoping to get back to work again, if possible.

Damage can heal, it takes time, lots of it sometimes depending on the location and severity.Patience, gentle exercise/mental stimulation. The brain and body is designed with an inbuilt programme to fix nerve pathways( neuroplasticity ) to the best of its ability. Maybe not to a perfect standard but a good compromise can often be achieved.

Have you asked about physio ? Alternative medication for headaches ? Sadly, as funds are so tight in NHS you often find you have to be repetitively firm to obtain the follow up services you are entitled to.

Do you have a local Headway group ? Perhaps you and your husband would like to join and meet similar people, for support and fellowship.

From the way your husband was at the height of his illness, to how he is now, he sounds to already be in a much better position. He can walk, albeit aided and talk, albeit slurred/stuttered at times. I have only just weaned myself off constantly using a stick again for 3 months and still have stutter days. It is okay, I am okay, maybe not the perfect specimen but still me : )

Accept things as they are for now - get whatever help you need and most importantly, remember to do things you both enjoy, with whatever adjustments are needed, rather than just waiting in limbo for improvement. It will happen in its own good time.

Lovely to meet you,

Take care,

Angela x

poggla in reply to angelite

Thankyou angela....Wernickes encephalopathy /korsakoff was suspected immediatly by the Dr that sent him to hospital. They started iv pabrinex within couple of hrs of being in a and e.. they have told me he is brain damamged. Although no lesions have appeared on his scans....but as i understand it ..it can take upto 6-8 wks for lesions to appear and ct scans dont always pick them up...He was only discharged because he was able to walk with a zimmer frame and was assessed with occupational therapist and physio...and as he had improved was allowed home with 24 hr care.He had physio at home but after 6 sessions there's nothing else they can do....they refered him for a foot splint...but have said it's looks to be permanent...

With regards to medication because he takes medication for his tremor and at risk of falling they will not allow him to take anything else but paracetamol because of stronger pain relief making you feel drowsy which makes my husband at risk of falling...they have suggested ibuprofen with ant acid for the headaches but that's it...I have found a specialist in wernickes with thanx to young dementia who found him...ive arranged another referel for his fits...doing everything I can....

I have accepted things...but it's the not knowing what's normal....prognosis...whether he will develop kosakoff as 85% of wernickes patients do...to think that only 20% fully recover is very poor...so u see y I worry...especially as wen u research it....there is no one u can compare or anything about prognosis. ..believe me ive done so much research and what I find is upsetting and I seem to know more than the Dr's. .

Janet....im awaiting a call back from encephalitis society...

Just answers...what's normal and what's not would be good...9nly person who seems to know more was the nuero physio....xx

poggla yes youre right it is caused by a vitamin b1 deficiecy and yes he should have been prescribed thiamine.

treated correctly it can be cured.

not sure if your husband is was a drinker but this is sometimes associated with heavy drinkers


poggla in reply to steve55

Yes steve my husband started getting headshakes and was told by optician to see Dr. ..He was drinking 20-30 cans lager a wk....He started to cut down a yr ago and everything was fine.....dropped to 8 a wk....He was only dependant...needed to have a can every evening to chill/relax....withdrawel started....mainly shaking....Dr decided to detox him sooner although the alcohol and drug misuse centre were supposed to with daily injections whilst on librium...a wk on librium the Dr passed him off as intoxicated due to the librium and told me take him home...same morning my husband fell and hit his head....I requested a home visit and dr immediatly said wernickes/korsakoff...

21 bags of pabrinex over 7 days....unable to walk....talk...hallucinations...

.double vision.....confusion...tremors.... had 8 falls in 48 hrs in hospital as they gave him zimmer frame...12 days later was released and on 300mg thiamine and vit b tabs for at least a yr after being admitted....now being tested for epilepsy in Nov and has a essential tremor....5 months and he feels no change in his mobility at all...speech is up and down...

Sooo hard but u just keep going!!

I've done so much research on the condition and know so much about it....but only thing is there's is so much to this condition....it hard to know what is connected to wernickes and which is because his tremor and possible epilepsy. ..


when i had my stroke i was given thiamine .

id take your husband back to the the hospital because the diagnosis is wrong...maybe not but their could be a traumatic brain injury as a result of his fall and banging his head.

this could be causing the double vision confusion. has he changed in anyway ? mood swings becomes aggressive for noreason noise intollerant to name a few ? the reason i ask my stroke left me with a brain injury with the above plus a few others

please let me know and dont be afraid to argue .


poggla in reply to steve55

He does have brain damage due to wernickes...He fell wk after detoxing and 7 days of his thiamine levels dropping which gave him his symptoms....ct scans and mri done...He passed his cognitive test and did all the heel to shin tests and all the others they do for nervous system...they said he was lucky as if left he wud be dead and his thiamin was so low...

Only changes are mobility...speech and constant headaches...nystagmus has cleared and eyes are fine...

Noise is not good as headaches are severe but doesn't get angry...just doesn't want to believe and let it sink in that this cud be permanent and he has brain damage....

We have app 4th Feb for epilepsy and a specialist app for wernickes....but that's thing with brain damage so many diff causes...they did check for a stroke at 1st because of his symptoms resembling a stroke but was ruled out..

Paula x

steve55 in reply to poggla

the damage caused by wernickes is memory. the serious injury i the fall that caused the tbi .


He had ecg and was clear...All symptoms are that of wernickes as was alcohol dependant and detoxed without thiamine thanx to Dr. .

Before diagnosis everything was fine and worked full time...korsakoff is more to do with memory more so than wernickes...wernicke's is confusion then progresses to korsakoff which affects 85%of ppl...thiamine replenishment helped with some of the ataxia and nystagmus...

Encephalopathy in itself is that of global brain injury and is not just located to one part of the brain...but im on it and he has not progressed to korsakoff as passed the memory test...and strenghth tests so there's nothing to suggest that it is anything else...damage has already been done by lack of thiamine leaving the nervous system no choice but to shut down...there is so many links to other symptoms etc


flowflow in reply to poggla

Hi Poggla,

I have just seen your post about your husband and was wondering how things have been since? I know a bit about the condition so if I can be of help please message me. Is his speech ok and did he have any S&L input? Have you got good support from a GP and has any further help been offered? 

Hi flow flow....we have a specialist in 4 wks time...but in meantime theu ruled out epilepsy, but have said he may have NEAD instead which mimics epilepsy....since having bells palsy his speech is better but as Dr said it's prob cos he has no control over his mouth...speech is going back to up and down since his feeling is coming back in his face....its just the pain in the leg as has peripheral neuropathy...but with his mobility we don't know if he has ataxia or if to do with peripheral neuropathy and drop foot....His essential tremor is being treated...but just got to wait now for consultant about his seizures...specialist soon...Dr requested an appointment to talk about eeg results which were clear as was ct and mri....I don't understand how theu tell me brain disorder/damage when scans are clear. ..we have another referel for physio. ..He walks with a 3 wheeled walker can't walk unaided...surely after 21 bags of thiamine by iv and 12 days in hospital 8 months ago there wud be progress but I'm tod if not progress in 6 months then it's likely it's permanent. ...no one can give me answers co no one knows about it...ive done so much research...ive the one telling Dr's now about it ...more need to be educated on the condition  ...

poggla in reply to poggla

Just an update....diagnosis of non epileptic attack disorder...10 months after wernickes encephalopathy ....majority of his conditions are phycological due to a bad case of wernickes encephalopathy....nuerophyschiatry is next and intense physio for mobility issues...

Still no change in mobility....and more scans reveal no other damage...

Still having memory problems due to NEAD....

Anyone else had other conditions with wernickes???

Essential tremor still under control, bells palsy still problem, weakness left leg nerve damage and drop foot is still severe. ...

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