Hello I new 😊

[tillytimebomb]

Anybody here with encephalopathy I just feel so alone and scared for the future.

[StrawberryCream]

Hi. If I understand encephalopathy correctly - it means brain disease?? I think there can be various causes and I am wondering what has caused yours. Also be helpful if you could tell us a little more about how it is affecting you because I think it can be anywhere on the spectrum from mild to severe??

[tillytimebomb in reply to StrawberryCream]

Hi. I developed wernickes encephalopathy from being preg, very rare, I collapsed unconcious at 13 weeks preg and when I woke up I didn't know my husband , my children, given thiamin iv and sent on my way with my diagnosisafter mri and ct scans a few days later even thou I still couldn't walk properly or talk properly, 7 months after being hounded by my husband he took me back to GP, who no messing put me on oral thiaminand bcostrong, my symtoms haven't got worse or better they have now levelled off, before this I was going downhill so quickly, I cannot walk I use sticks a frame and have a wheelchair, I cannot dress myself my left side is ridiculous, and I cannot talk properly I speek slow sometimes most of timei just slur and the wrong words come out, I have panic and severe anxiety the list goes on

[StrawberryCream in reply to tillytimebomb]

Gosh I think that pretty rare to develop it as a result of pregnancy! Were you experiencing a difficult pregnancy?? Am also wondering if you were able to successfully get through the pregnancy to term and deliver a healthy baby. What you have been through is truly awful and has left you with brain damage that is affecting you very badly. Should you not have been put on ongoing thiamin after the it was given? Not sure if my understanding of your condition is correct so I sincerely hope I am not saying anything wrong?! Do you still get reviewed by a specialist or is it left to the GP? As a family you have all been through a horrendous time and I can appreciate your fear about what the future holds. I guess it is impossible to find anyone in a similar situation as you to be able to talk together to support and have mutual understanding. My thoughts are with you x

[StrawberryCream in reply to StrawberryCream]

Am so so sorry I have just read your reply to Cat after I sent my last one and I know know you tragically lost your baby. That will have been very traumatic especially for you and your family.

[tillytimebomb in reply to StrawberryCream]

I have hyperemisis with all 4 of my children, the 5th just tipped me, I did not ever get to see my 5th, yes my GP said i should of been on thiamin from that time but wasn't, we have struggled and battled for past year, my husband has just given up work, I see a neurologist now, I have an OT, she comes every week, I see my GP once a month, and a physcologist ,

Thank you so much you have made me glad

[StrawberryCream in reply to tillytimebomb]

Gosh all of your pregnancies have been a tough time with hyperemesis!! How old are your other 4 children? That is so so sad that you didn't get to see your 5th child. How old was the child when you lost the pregnancy?

Am relieved to hear that you are now receiving some help from relevant professionals. Life sounds unbelievably difficult especially for you but also your family.

[tillytimebomb in reply to StrawberryCream]

I was 13 weeks, its hard, my children are now 6,16,20,21. My youngest is a star always says let me get that mummy so you don't drop it etc, tough thing is I am yet to find anybody who has the same experience who it wasn't fatal for.

[cat3]

Hi Tilly. Sorry to hear you're feeling so low. Can you tell us a little more about how your brain damage was caused ? x

[tillytimebomb]

Sorry if I am not making things clear, my memory is bad and I have to keep going over and over everything o put

[cat3]

Your reply to Caroline has made your situation perfectly clear Tilly. This has been such a rough time for you and I hope that we can get to know you better and maybe help you come slightly more to terms with the awful deal you've been dealt.

How long ago did all this happen ?

[tillytimebomb in reply to cat3]

It was end of July 2014, I lost my baby, I was home 12th of June my husband said. I just keep feeling like its someone else. Not me, they have it wrong or anything I don't know. Inside I still feel like me, but I don't look like me, I don't sound like me and I don't act like me , that's the best way to describe It, thank you for taking the Tim to talk to me.

[cat3 in reply to tillytimebomb]

I'm so sorry about the loss of your baby Tilly ; and you've lost so much more haven't you. What you've suffered must require enormous physical and mental strength to cope with & must be exhausting, and I hope you can take a little strength from knowing that you're amongst folk here who will always want to listen.

We can't always help in practical ways but this is a good place to be for companionship and moral support. I hope you'll stay around Tilly and find comfort here. Love Cat xx

[EleanorS in reply to tillytimebomb]

This is exactly how I felt from the off . It is a very distinct thing. You have done well to nail its description. It took me some time to put into words. Going on my experience it gets better Tilly. I couldn't hold my head up to begin with and was blind. Any questions please ask. We are rareish but not that rare. My gp saw it before, 3 solicitors o know of dealt with wernickes cases and I know of 2 other people who had it including yourself. I know how hard it can seem if you have a child or children in your care. It gets easier I promise. I will try to get back to you if you had questions etc. take g reat care.

[tillytimebomb]

Sorry I have dates wrong way round, I lost baby end of June was him for 12th July. Sorry .

[SAMBS]

Hi Tilly, you've certainly not had a great time of things, especially last year, I'm sorry to see of your loss. From having a quick peek online, seems some or all of your pregnancies you had persistent vomiting through them, is that right? A bit like Kate Middleton with her 2nd! Your last being the worst. I've also just been looking at a good medical website drugs.com - it is an HonCode website, which means the info on it conforms to medical regulatory standards. I'm guessing you've looked online at the wernickes condition or was told what it is. I understand why the mri's. That gives them a good look at your other organs in case of complications there.

I hope you are able to eat and sleep now, if not well and properly, and even if only little and often, because of the dehydration your body will have suffered with the pregnancy sickness complications over the years. Good Vitsupplements may help also. Neural and physical effects can be s**t to cope with, as we know here from our own experiences of BI.

Sounds like you got a good family there, especially your 6 yr old, at that age she probably only understands her mummy is ill. Hang on to what you've got including us here on Headway. I know my BI has got me looking into other conditions that came on heels of it. Keep well.

[tillytimebomb in reply to SAMBS]

Hello and thank you, I am thinking that I may also have developed ME as my symtoms are so similar but maybe a bit more severe, if anybody here has any info on claiming benefits pip I would appreciate some advice, as we are currently going through this process, its so good too know I have somebody to talk to I've felt so isolated

[cat3 in reply to tillytimebomb]

The after effects of any type of brain injury can mimic ME, if only for the overwhelming exhaustion we feel. I don't know whether mine has improved or if I've just learned to cope with it better, but at the 12 month point there's plenty of scope for improvement. xx

[SAMBS in reply to tillytimebomb]

Hi Tilly, yes I agree with Cat, and there are unfortunately too many different conditions that have same or similiar side effects, but doesn't necessarily mean you have them. your pregnancy sicknesses are physical and you say doctors checked you out with the tests last year and gave you their diagnosis. Are you still having regular blood tests?

As to the benefits, can't help there as I don't live in UK now, but it might be worth a phone call or visit to a Citizens Advice Bureau. If Soc Services can't help - have you spoken to them? It all sounds very stressful for you at present and that doesn't help physical or mental health either. Give the C A B a ring Monday morning.

[cjjaks]

Hi Tilly,

I am sorry for your loss. Sorry since my saH in march, l find it hard to type things.

I hope you find a happier road,(want for a better word). And you find, yourself being strong again.

I have... a little at a time as they say. Hope my message makes sense.

Take care

Jakki x

[angelite]

Hello Tilly,

I am so sorry to hear about all you have been through. We have all types of people on here with brain injuries from various causes plus their carers too : )

You will find that many of us share similarities in symptoms and are happy to help and support you. I was suspected of having Encephalitis nearly 3 years ago but never got a definite diagnosis - joining this forum has helped me enormously : )

Kind regards, Angela x

[EleanorS]

Tilly i also had wernickes encephalopathy. I hve the anxiety and memory issues also. I learned to walk with crut hes.iknow someone who developed it from chemotherapy hyperemesis. I know of 3 other people besides this lady who had it. I also had another type of brain dmge from diabetic keto acidosis.i m exhausted after wernickes . Wernickes can sometimes damage the cerebellum. This can make a person ataxic, has your nejurologist described you as ataxic.? I am on 300mg of thiamine a day but this has to be counterbalanced by other b vitamins this is very important otherwise your other b vitamins can drop below range causi g problems.. I find the thiamine takes some of the exhaustion away. In year 1 following the illness i was still extremely exhausted i improved at the end of year 2 into year 3. When you fill i benefit forms describe every single symptom and challenge and continue onto separate sheets of paper if you need to.Go to benefitsandwork.co.uk register get their handbooks, also google fightback 4 justice organisation. Pip is a points system . If i remember correctly the guide to filli g in pip from benefitsand work.co.uk explains how the points system works and guides you so you can get the right amount of points. Any questions just ask illdo my best to get back to you.