New to all this.

[Jdubs]

Hi everyone,
I'm Jess.... and my boyfriend at the time (now fiance!) was diagnosed with auto immune encephalitis with about 6 months ago. I know your probably thinking wrong forum but his body could not handle all the sickness and decided to shut down. He dropped at work one day and had his first 5 seizures on that day. In the first month of him being in hospital he had about 50 seizures putting him in intensive care on life support. Because of the frequency of the seizures his brain couldn't heal and swelled up to the size of a watermelon. He lost all of 2012 and parts of the rest of his life and childhood. He couldn't walk or talk at one point and didn't know who I was. He is 20 and I'm 19. We had been together for only bout 4 months but had been friends for about 5. At the end of his first 2 month hospital stay he'd had nearly 70 seizures which left permanent scaring on the brain which caused epilepsy. But we didn't get the final answer till about a month ago. His case was so rare that a company in the US ( we live in Melbourne )bought his blood for $20,000 which got him some life saving medicine. He improved greatly and regained the ability to walk and basically function again.... still only at about 70%. Some of his seizures are pschogenic and are caused by deja vu and over stimulation whereas others are epileptic tonic clonic seizures.But to his family and I we had the old him back for the most past. Slowly but surely he has getting there and was finally released. He came home to me and it was nearly the greatest moment of my life. But after about 2 weeks he started to go downhill again having between 3-4 seizures a day. This was unbearable to see him like that, trying to work to support us but look after him at the same time. I'm not asking for sympathy just sharing my story. Anyway we ended up losing our house and moving back in with my parents. And are still trying to get out of debt. He is actually on the mend now fingers crossed after going in for EEG video monitoring they seemed to have got the meds right, only having a seizure every now and then. On his last day of monitoring he asked me to marry him. That was the greatest moment ever. After travelling to the hospital everyday to see him the only way in his mind he couldever repay me was that and I couldn't be happier. Some days are good some not so much but I couldn't of got through this without him and I hope he feels the same. Thanks for listening to my story and look forward to hearing yours x x

 

[Chaz1]

Warm welcome to CWE.

Wow Jdubs, That’s one heavy hand of cards your boyfriend was dealt and what a shock this must all have been for you too, but you can feel the love u have for him as you speak and you two are to be wed, so there is a silver lining thank God , you have each other and sound so very much in love... Houses can and will come and go, but true love as you both show - can conquer all. He is going to need your support and who knows down the line, you may need his...


De ja vu is a seizure, not a T/C seizure but it’s still a seizure. Temporal lobe seizures, Focal (partial) seizures

http://www.epilepsy.org.uk/info/seizures/focal-partial


Suggest you two (you if your boyfriend is unable and I do all the research for my Son) educate yourself fully about epilepsy; my Son is 27, diagnosed with E at 23 after 2 T/Cs but had partial seizures before diagnose, only we did not recognize them

Suggest you keep seizure dairy, noting all seizure and anything out of norm (as he starts with and continues with E medication). It will help find potential triggers and help when you go to see the specialists. I always go to my Son’s appointments and take notes, because his memory fails him often so we play tag team ..simple notebook can be used or the epilepsy foundations all have diary samples that can be used…..its been a Godsend for us looking back over the years..

Sure do hope the seizures are kept at bay with the right medication/healthcare. He is very lucky to have YOU at his side and don’t forget to look after you, because you can give all and leave nothing for yourself, or it will affect your wellbeing,

Keep us posted.

 

[Nakamova]

Hi Jdubs, welcome to CWE! What a strange and difficult journey has brought you here. I hope your fiance can stay on an even keel, and both of you can start putting the pieces back together.

As Chaz says, a seizure diary can be very helpful for isolating individual triggers and tracking whether seizures are changing and/or responding to the meds. Often there can be dietary or environmental stressors play a role in seizure onset. I don't know if this is a factor for your guy, but a recent study suggested that auto-immune disorders can be more severe for folks who have a fair amount of sodium in their diet.

You'll find all sorts of information and support here at CWE -- hope you feel free to explore the different forums.

Best,
Nakamova

 

[jyearta]

Just wanted to put my welcome mat out.

I keep saying this to new people, this forum helped me so much.

Look in all the forums, I wish I had this forum all pasted years, but I thankful that I have it now. The best way to help you finance and yourself it to educate yourself on E.

 

[Jdubs]

wow.

Hi all, wow I was not expecting amazing replies so quickly. Thank you all means a lot. I do have a seizure diary which is very colourful indeed. And yes we do the same thing at the doctors, a tag team. Thanks for the helpful suggestions. I will look into that sodium thing.