Hello

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

Thank you Nana1 - Im sure I am probably just beating myself up too much and my boys are probably not even noticing that I nap when they get home from school as they are too busy with their games , tv programmes etc
I will indeed be upfront with them once I have spoken with the neurologist - I need to know all about it myself first , as really do know very very little at the moment ... but thanks to such lovely people on here ... I am learning fast :woot:
 
Hello angie,
A friend told me about a program she watched about a suger substitute called Aspatame, it was causing all sorts of abscences and FT in kids.
Ben used to drink nothing but Pepsi Max so I have stopped him having anything with it now.The diet pops are the worst, the only fizzy pop it is not in is Vimto but it is in sqashes and all sorts of things. we were already on the meds by this time so I don't know if it would have made any difference. They have stopped putting it in Asda's own pop. Because I have had to stop Vimto for Ben[ to many carbs] I have found Morrison's own sqash doesn't have it in either.

It takes me forever to shop and I need reading glasses now so I look like a mad woman going round glasses on glasses off reading every pkt, bottle ect ect. luckily not in a supermarket near you ha ha.

You sound like a pretty fab mom yourself [ we must just be naturals].

Keep Happy:)
 
I must be a mad woman too, however, everyone in the store that I shop in is reading labels. We are the pioneers of healthy eating...just you wait.
 
Good luck with your shopping it sounds like a chore and a half - but if it works the rewards will be worth all the effort !!! I think fizzy drinks have a lot to answer for - they seem to be full of absolute rubbish ! I drink nothing but tea and orange juice now - even that is probably not great but better than coke so its a step in the right direction !

i think we must be naturals at motherhood too - and we will learn many valuable lessons from them (as well as lots of hair pulling out no doubt)

Its very nice to chat to you , and if you ever need a rant at someone I will always be happy to listen

Keep smiling xxxxx
 
Hi Angie! You have described my seizures to a T. I always had mine while in the shower, just washing my hair or whatever and out of the blue I would have one. I don't remember feeling an aura but I had the deja vu and the vomiting and shakiness. My mum also didn't like the word epilepsy and was very defensive about my diagnosis but she came around. I think it is just fear of the unknown! As you can see, this is a great place to be!
 
Hi Kelly ,

Its SO nice to hear from someone who is suffering from the same problems ! As you have probably read , I have had these "things" forever . I am a little bit wacky anyway (as anyone who knows me would tell you ) and I kind of got so used to them I just put up with them ....well until recently ....they have got so bad for me that I am unable to just ignore them anymore .

SO how long have you suffered with them ???
Are you diagnosed now ???
Are you on meds ???
Has it made a difference ???

Sorry for all the questions I am quite excited to hear you have the same and yes your SO right - this is a lovely website and I only wish I had found it sooner

xxxxx
 
that's ok, it is exciting to know you aren't alone! I only found this website after my son was diagnosed 3 months after i was and I wish I had found it when I got my diagnosis because it would have been very helpful. I was diagnosed in June 08 and had suffered them for probably 18 months prior to that. I knew I was having them but thought a dr would think I was crazy if I went in with those symptoms and they really didn't interrupt my day to day life so I chose to do nothing about it. I ended up having a grand mal in my sleep one night and it was actually my best friend that put the 2 together and said maybe this is the next step to those weird episodes and she was right. I have been very lucky in that the 1st medicine I took (Tegretol) worked for me straight away and I have been seizure free since. I have recently changed meds though to Lamictal as my husband and I are considering adding to our family and this is the safest drug to be on. I hope you get some answers for yourself soon but in the meantime feel free to message me if you have any questions or just want a chat!
 
So glad to meet you, ANGIE, ANDY, AND BEN'S MOM!!

I, too, was THRILLED when I finally got a correct diagnosis by my neurologist.

For some reason when I quit smoking, got my diabetes under control, and really have been watching my diet and exercise - plus, regular neuro checks - even under the most extreme stress - I'm doing ok - it seems, many weird, little, freaky PC's, but no more CP's.

My aura is a feeling of "just not right" or my eyes cross or gotta go to sleep NOW or my walking gets like a drunk or when I lay down my whole body stiffens up like a board just for a split second or my one foot will start moving on its own. Totally awake. I know to get prepared quickly and lay down fast - if possible. I have zonked out cold on a bus one time and someone had to hold my head - just O U T - like a sound sleep - weird.

Enough about me.

Each of us is different -but we care and make yourself at home.

Ask questions.

The moderators here are super and so are everyone else.

Coke?? I like Pepsi and my companion's yucky coffee - but, defeats the effects of the meds, I reckon. I don't know. I reckon, I'll have to try caffeine free, too. Only then, I sleep all the time.

Hope you can find help here - also to any other newbies - welcome.

I've been kinda in a funk for a while and not responding to others - sorry.

Getting a wee bit better, thanks for all the support!!

Hugs to everyone!! Especially the newbies!!
 
Hi Kelly
Thanks for the reply . it certainle is lovely to know there are others out there especially after living with it thinking it was just me - and everyone has been so very lovely to me too . It sounds like you have had a tough time with it - it must have been even tougher for you finding out your son has it too - but you sound like you deal with it all remarkably . I know exactly what you mean about trying to explain the symptoms to a doctor , thy sound so strange and although I can explain most of them but not all of them .
It must be very exciting planning another child - I love babies they are lovely - but I have given up having my own babies so just admire everyone elses now . I have a 15 month old great niece and she wears me out just looking at her . Thank you so much for adding me as a friend ... you are officially my first and thanks for the offer of a chat .. you might live to regret that one hehe !!!
Keep Smiling xxxx

Hi Ziggadypoo (great name )

Its lovely to meet you too . and thank you for the taking the time to reply. Its lovely to hear you hav got your epilepsy under control and sounds like you had to work hard to get there .. so well done you :)
My epilepsy terminology is a little rusty at the moment and only found out the other day that the funny little feeling I get when its all about to start is an Aura ... but my aura is warm and tingly and starts in my stomach and normally gives me about 20 seconds notice before the rest kicks in - but is quite a handy thing as it gives me chance to get away from people - only a select few people know whats happning with me and seeing as my lastest thing is a huge cheesy grin that a cannot remove from my face mid seizure - I tend to just hide away until it subsides as I think people may think I am being a bit weird with them !
I hope to speak with you all more in the future - and thank you for your kindness xxxxxxxx
 
I wouldn't say I dealt with it all that well but there are certainly a lot more people that have it worse of than us so in many ways I count ourselves lucky. We are lucky that we have a great dr for our son that takes great care of all of us!
 
Hi Angie,

I just had to respond to your post...I used to have what I called my "can't move minutes" or CMMs. They sound a lot like your FFMs.

I had them for years. I was in the middle of puberty and everybody told me that all "kids" feel weird when they're going through puberty. But at sixteen, I was finally diagnosed with epilepsy.

Anyway, that explained my years of "CMMs" that I had. It was like I had deja vu, then my stomach felt like it was coming up (called epigastric rising), then I felt detached from things around me, and even though I was conscious, I felt "frozen" during these spells.

So, there is my ramble. :D I'm glad to meet ya. Welcome to CWE. We are really good at leaning on one another here for support and advice...and we love to laugh and learn. :agree:

Take care! -Julie
 
Of course! We stop at the grocery as a side benefit to the guys in our homes.

And, since we're talking about grocery stores, I've heard that we should avoid all the middle aisles. Only go around the outside aisles...dairy, meat and produce. That's it!
Skip the unhealthy stuff.

I am guilty of being a caffeine queen myself. I've completely quit 2 times. Last year, and this year. If you stop caffeine suddenly, it could give a nasty headache.

Shopping...gotta set our priorities!
 
Hi Andrea

I am 40 and have had partial seizures all my life. I have a febrile seizure at age 4 and not another grand mal seizure until age 16. I have been on Tegretol over 25 years and, for the most part, am controlled. I remember trying to explain all my feelings to my parents how I felt but could never explain the feeling of the dejavu or the cold flash and then hot flash that ran through my body.

This is a wonderful place where there are no judges, only friends who care. Give us a shout if you need us. Wonderful research here too. I have enjoyed the site and have grown to love the people here.

Take Care,
Carla:dancing2:
 
Hi, hello

and how do you do?

Somehow, I missed greeting you the first time around, so please accept my apologies on that.

I'm sure you'll like it here at CWE, and that you will learn quite a bit, too. There is plenty of information to be had here..........we even have a Library for Pete's sake. :)

Stick around, put up your feet, and check out all the nooks and crannies.....I'm sure you're going to like it here. And I'm sure that Buckeye or Eric will be around with some coffee soon (theirs is HEAPS better than mine).

Take care!

Meetz
:rock:
 
You must log in or register to reply here.
Back
Top Bottom