new boy

[petrie]

hello im 48 and have recently been diagnosed with epilepsy,ive been in the fire service for around 20 years and it looks very much like im going to be retired on ill health grounds.It would seem ive had epilepsy for a number of years starting with odd black out and then nothing for ages but things got a lot worse and i had to get it sorted,i never thought that day going to the GP would result in their findings.I must admit im finding it hard to cope at times,the no driving,no cooking,no bathing unsupervised,i get tremors so bad we are nearly out of cups, plates and glasses,memory loss is a joke,im sure people think im rude because they tell me some tit bit of info and when asked about it later ive no idea what their talking about.Im sorry to come on here and bring you good people down but as you know unless you have it you cant understand,my partners a lovely girl,kind and patient,her new nick name for me is rain man,we try to deal with things day to day and just hope the meds will one day bring me back to normal.

[huskymom]

Hello and Welcome It is tough having this happen later in life...I was 45 when I was told. (now I am 50). It must be terrible having to give up all the things that you loved, but believe it or not, you will find a whole new set of activities! What meds are you on? Hopefully once you get that all straightened out, you will be able to continue some of your previous life. All the best to you!!

[epileric]

I'm sure people see me the same way because my memory (or should I say lack of memory) seems similar to yours.

As far as "bringing us good people down" goes, trust me..... it actually brings us up to know that there are many others like us.

Make yourself at home, check the place out & get comfy.

[Endless]

Hi, Petrie,

Welcome to the forum!

I'm so sorry about your seizures, tremors, memory loss. Epilepsy is very hard - there are so many things in life that change for us and that we lose. I am so happy you have a good person in your life to help you through.

Please take your time and read through some of the posts in here. You'll find you belong to a big, happy, memory-impaired family here. Everyone understands what you are going through and is here to support you.

[mel239]

Hello-I too was diagnosed at 45- 2.5 yrs ago-my hardest part is not giving things up but being single with 3 young kids at home and some older ones and finding out everyday that I lack memory to recall alot.thats scary.What is our life but memories.I dont even recall a moment of my twins graduation party which was a huge pigroast with over 200 people and I cooked over 30 items and huge dessert area bigger than my living room with cotton candy,snowcones,chocolate fountain and outdoor movies and yet-NO MEMORY-thats why my doc originally thought I had a nervous breakdown.Feels all i have to look forward to is my little ones growing up and who knows what Ill remember of that.I take alot of pix but its still not the same

[petrie]

thanks for replying,the worst thing i find is that for a 12 hour or so period before having a big seizure,im vile and moody and scared its going to ruin my relationship,im going to have a word with the doc to see if its the meds,im on epilim 1000 in morning and again at night,have you ever heard of others affected this way

[petrie]

nice meeting you thanks for the welcome

[petrie]

im not to bad with the distant past as far as memory goes its short term thats killing me,ive missed various appointments so i got a massive calander to write stuff on but forget to look at it.must be bad not having memories of your kids though i suppose the best you can do is film them at every chance in the hope it may jog something later

[joan]

Welcome and I hope you are feeling better. There are a few things you can do to help and it does take time to get yourself adjusted to it all. Use a day planner. Many people do. LEave it in the open so you remember to check it. It will help you remember things. Diet.. check you diet and get a healthy diet. That helps. Try and sleep well, I know thats hard. Lower your stress if possible. Also you will not find a better resource or support group than CWE! You are in good hands.

Hang in there,
joan*

[tase37]

wish you strength in this hard time with adjusting to epilepsy.. and I hope the meds will help you very soon!

[petrie]

Thanks for the advice,i will try to keep a lid on my mood swings but trouble is i believe its other people and not me and i dont realise im doing it

[mel239]

I always blame others too,Ive been on a couple meds but i guess my anger and rage is seizure related not med related.Everything pisses me off so bad!!Ive thrown sweepers out the front door and redial harrassing bill collectors to flip out on them.Alot of times Ill have a sweet talk with my boyfriend the whole time thinking in my mind "shut up I dont want you to talk i want you gone forever" Some way to live huh?

[Nakamova]

Hi petrie, welcome!

The Epilim (also known as Depakote or Sodium Valproate) could definitely be affecting your moods. You can read here about what other patients have experienced on it:
http://www.askapatient.com/viewratin...&name=DEPAKOTE

Definitely bring up the moodiness with your neurologist and ask about potentially trying a different med.

Best,
Nakamova

[valeriedl]

I was diagnosed with epilepsy about 9 years ago at the age of 25. No one wanted me to cook (unless it was in the microwave), take a shower, go outisde or anything else like that unless there was someone there with me. The neurologist has me on meds now where I'm pretty much able to do everything without someone being there to watch over me and the family doesn't worry so much. Still not being able to drive drives me crazy.

I have bad memory problems too. Almost everything from my jr year of highschool is lost. The memory has gotten better through the years but things do slip away.

I don't know if you have something like my cell phone? It has a calander in it and I can put something in it with an alarm that goes off so it will make sure to remind me about it. That's also how I remember how to take my meds too.

I have alot of problems anger. I've told off the managers of all sorts of different stores, called companys for things to complain about for the product they make. I think if you can name the place I've probably told someone off at it.

Try to keep your stress level down. Stress it a real triger for me. My husband and I know that if something happens or is bothering me then I am due to have a seizure withing the next few days.

My husband is very loving and understanding. Sometimes I wonder how he could stay with me because of all the problems that I have but I know he's not going anywere, I guess that's true love.

Feel free to ask all sorts of questions on here, you'd be suprised at how many people are dealing with the same issues that you are dealing with and can give you good advice.

[petrie]

hi and thanks for the the reply,have you ever found that you just dont care about anything.ive been told by work im going to be dismissed from work in 12 weeks on ill health grounds as i cannot perform in my roll as a crash rescue firefighter any longer,i should be well upset but i just dont care,i owe the bank £2000 which i cant pay back,my car which i cant drive is in my friends garage and needs an mot and tax,my ex wife refuses to sell the house and the list goes on and on,quite frankly i feel so far up the creek it wouldnt matter if i had a paddle or not

[petrie]

hey mel,omg you sound like me lol,i know its no joke but if you dont laugh what can you do.ive sat down and talked to my girlfriend and told her that even though its me being a pain in the ass,in my mind i think its her(just aswell she loves me)i have found that when im in that state you can be sure ill have a major siezure that night.lucky weve both got partners that care for us because trying to cope alone for me would be impossible.

[neil129]

Welcome Petrie,
Im on the same dose of Eppillm as you,im also on Tegratol so with side effects i know how you feel,been moody,short fuse and weight gain.Its a pain in the ass,whenever i ask my doc can i come of Eppillim he just freaks out,anyway just thought id give you post.ive lost jobs to,it sucks,u can always PM me if u want to talk more.
I took a company to court and won because they laid me of because of my epilepsy,but its a bit much to go into here.
All the best Neil129

[petrie]

hi neil,damb right it sucks and to make it worse i think my girlfriend is getting to the point where shes had enough,lastnight we went to bed together and i could feel major tremors coming on,this is normaly followed by an all out siezure and i heard her say for f... sake not again she turned away from me and thats the last i remember,as with before she would comfort me,i dont blame her i suppose she never signed up for this shit,when i met her i was her super man a tough as nails firefighter,now im just a guy with epilepsy.

[neil129]

Petrie
Your not just some guy with epilepsy for starters none of us are where either we are boy,girl,woman or man,we are just the same as the next person,fair enough we have a few more hurdles to jump,thats all.Is Eppillim the first anti-epileptic drug u have been on? Perhaps the dose needs to be altered slightly or a new med,thats all things u can bring up with your doc/nuerologist.
Thats pretty low what your girlfriend said,it certainly doesnt help your condition,another thing to stress out over,stress brings on my tonic clonics,but things will get better slowly but surely,and from what you have written she sounds like a nice girl,probaly a bit confused because in my experience its those who dont have just dont know.Keep your chin up
Neil

[petrie]

hi neil,i suppose its hell of lot for her to deal with,im 48 and shes 34 and a caree girl managing a large fashion store so the last thing she needed was me body popping in the middle of the night when she had work in the morning,it still hurt to hear her say it though.trying to get my meds ajusted but no ones getting back to me.