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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.

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Peter

Peter

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Hello my name is Peter i have had epilepsy for about 15 years thought for years that i was on my own. i have twitching effect as a warning but sometimes nothing happens then i start getting confused and forgetting what i was doing then the next thing i remember is coming round depends where i am i have wokeup in work, home & the back of an amblance then it takes about 20 minutes before i remember what i was doing
 
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Nope, Peter

you're not on your own. There are plenty more of us like you out here this big wide world! :)

Welcome to CWE! Mr B has made an awesome home here for us, so feel free to chime in whenever you want. Check out the nooks and crannies, too....there are plenty of them.

Put your feet up and stay awhile. I'm sure Buckeye will be around with his yummy coffee soon.

BTW, what type of E do you have?

Take care.

Meetz
:rock:
 
Hello Meetz

i have got grand mall. thank you for making me feel welcome how long have you had E for and how have you found it living with it.
 
Hi Peter, welcome to the forum. :hello:

Make yourself at home here. :)
 
Hello Bernard

Thank you yes i would like to help support because i think YOUR site is a good idea i do voluntary work for a local charity which i am nearly finished setting a website for so hopefully there could be ways that i can help in the future and hopefully help other people with simaliar problems find answers a lot eaisier and quicker and the help and support they need
 
Hi again

I, too have the tonic clonic (grand mal) seizures, and have been living with them for 43 years now--I was diagnosed at 13 months. As long as I take my meds, get plenty of rest, and eat the correct diet, I do very well.

I don't however, advertise that I have it. I do tell people that I think need to know.......but other than that, I keep it to myself. I'm not ashamed of it, mind you, but up here, there are some........IDIOTS who really think that people like us need to be locked up.

I do hope you will like it here........
 
i hope i do enjoy it, it will just take me a bit of time getting used to where everything is i do feel a bit ashamed about having it its not to bad round family and friends but if i have one in work then i get a bit nervious about going back but work has been very good with me and understand
 
Hi Peter,
My daughter also has tonic clonic seizures. She is 17. We have been dealing with this for 2.5 yrs. She has had difficulty in High School with people understanding the disorder.

It is much better now that she is not longer taking medication. We have been treating it with nutrition, vitamin and mineral supplements, and neurofeedback.
 
There is

no need to feel ashamed for having E. It was given to you for some unknown reason........so you just learn to cope with it, PERIOD. No ifs, ands or buts about it.

Yes, it CAN be very depressing. Yes, it CAN be very annoying. Yes, it CAN be very injurious at times (ask my back about that). I won't disagree about any of those things. And honey, there is no DOUBT it can be embarrassing. Have you stripped naked, and sat rocking back and forth on your front lawn (save a shirt) for the whole world to see after having a seizure? Trust me, I did. All I can say is thank heavens for best friends.

But DON'T ever feel ASHAMED about having E. Just be WISE about whom you discuss it with....and ALWAYS keeps your emergency contacts current...
 
Hello Robin

i have got 3 children they havent got it yet but i am expecting they might get it because it is in my family. i never got told i had it untill after i left school
 
I don't have E, but I have had a history of migraines. I take magnesium and now have not had a migraine in over 3 yrs.

You might consider nutritional changes, because that can certainly show signs of being a genetic predisposition. I read once that depending on where your ancestors came from , could make your body more likely to be sensitive to certain foods.

Also, there are toxins in our environment that could cause similar reactions in family members too. Keeping the liver healthy and processing these toxins is of the utmost importance.

Remember, E is only a label. The cause is still undetermined in your case.
 
i does get me down sometimes because i cant do what i want to do i get alot of head injuries falling on my computer table and if i am out landing on the payment then i get asked if i have been fighting then i have to explain to them what happened
 
Yes, I think that is true with many here.
It is a rotten disorder, and one that we all are determined to figure out.

I hope you join in the conversations, and perhaps consider some of the alternatives that others are finding useful
 
Hi Robin

good point but they have never said to me what causes them the tablets i take dont help i was clear for about 5 years then a couple of a few things happened and they where worse than what i had before
 
yes I understand.
It was our experience also that they simply do not either have the time, the $, or the experience to figure out what the cause is. I learned that if I was going to help my daughter it was my job to do this. That way I can relay the information back to the doctor and they can request tests, or sign referral requests.

Most of the time the referrals were useless, since those doctors had no knowledge of seizure disorders. Specialists do not treat the whole body.

I decided to go back to basics, since my daughter was seizure free for 14 yrs of her life. I began with nutritional changes. I learned quite a lot in two years, and the information is almost overwhelming that nutrition plays a huge role in our neurological health. As does the health of your liver. The toxic overload can most definitely cause more seizures.

I decided the nutritional changes would not hurt, but the medication did.
 
Hi Peter,

Welcome to CWE :hello: I hope you make yourself at home and take advantage of all the information that can be found here. We're here to support and encourage you. Feel free to chime in with any advice, questions, or just to vent.
 
Hi Peter! Welcome to CWE. :) As you can see, a lot of friendly people. :) I have grand mals also, though no warnings. You were clear for 5 years? Wow! So I guess I'd have to ask, was there anything that specifically changed? Weight, diet, amount of sleep and stress, etc? If you were clear for that long, then maybe you can get back to that state again. I went about 20 years with great seizure control...and then all of a sudden they started back up. For me, I think it was that my meds had quit working for me. Yes, that can happen. It's no unusual for meds to either quit working or for other meds to be added in order to help a med be effective. I agree with Robinn and LF...check out all the info available here. Check out the alternative treatments thread too. You may find that certain vitamins or a dietary change will help you regain control. Feel free to ask questions, chime in , or vent in the padded room (Heaven knows we all need to at times...).
 
Hello Skillefer

yes there was changes i met my ex girlfriend in 1998 moved to wales settled down had 3 children then in December 04 my son was still born which i still havent got over but that is another story. from then i had a rubbish christmas that year i was so depressed split up with my ex in jan 05 then in april 06 she stoped me seeing my children and i am still fighting to see them now
 
Hmmm...sounds like you're going through a lot of stress. By any chance loss of sleep too? If so, you'e got to do what you can to get those two things under control.
 
i have tried but everytime that i get back on my feet something else happens started doing voluntary work to help take my mind off things it helps a bit but the hospital that i go to is round the corner from my sons grave i havent slept propaly since this all started tried different things the only thing that helps me sleep is sleeping tablets but i dont want to be on them for the rest of my life, i also feel down when i make appointments and cant keep them.
 
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