Living with epilepsy

[elsieadams]

I was diagnosed with grand mal epilepsy in 1972 at the age of 15. Back then there was not a lot of info for medical treatments and went through a lot of experimental treatments. Today there are so many different options and more public awareness. I am still on two medications which have worked well for the past 15 years. Unfortunately previous treatments have left serious effects such as reflux disease and stomach and liver problems. I am finding new ways to control these symptoms through healthier diets and watching for any additives. Long term meds do really play havoc with your body but as an epileptic we do not have other options.

[Angiebaby0121]

Hiya it must be been awful for you especially as awareness of epilepsy was not spoken about. You are right though because of the awareness of it now people are more accepting of it and it's starting to not even be considered as a disability anymore.

I find that taking the meds plays havoc with me losing weight, I have gall stones and they won't operate to remove them until I lose more weight I try to explain to the doctors but they just see my weight not the problems. Any I like you have had to change my diet I am no longer able to eat any fat which as you know most foods contain fat I'm living on steam fish and skinless chicken breast. Sorry I'm moaning now it's very difficult for me especially when cooking for the family and I only have those few options.i was 16 when I was first diagnosed and thought it was the end of the world but that was 26 years ago.

With epilepsy I think it's still a put up and shut up cos as you say we have very few options.

Good luck and I'm sorry to hear about your problems keep your chin up and feel free to message me.

Angie x

[elsieadams in reply to Angiebaby0121]

We need a support group a visible group like the diabetes association to help make more people aware of conditions faced with this curse. Being very much like arthritis, epilepsy is not a visible condition until someone actually has a seizure in public and everyone freaks out. People need more info and how this can be such a disability that many can not hold down jobs, continue schooling , or even just go out to the movies. Parents of children diagnosed need much more positive info concerning their childs condition. In many cases eventually seizures can be controlled and they will be able to be successful and independant. Yes it is a curse, but at the same time it an be managed and local support groups are a necessity. This site I hope will be a great start for many.

Hope all is well.

Elsie G.

[Angiebaby0121 in reply to elsieadams]

Hi yeah I absolutely agree I am one of the lucky ones. Whilst it took s number of years for me to accept my epilepsy I am able to keep my job and my epilepsy is well controlled.

If there had been some support back when I was first diagnosed i believe4things would have been very different for me.

People also need to know that it's more common than they think and not be so freaked out when they see someone having a seizure.

I hope you are keeping well.

[elsieadams]

Hope all is well with you also. Take a look into history and see how many famous people had epilepsy. It is really quite amazing and to think how these people changed the world of science and music. How did they deal with epilepsy? Many of them were looked upon as being freaks of nature and lead life of solitude but still continued to accomplish many great things. There is still so much we need to learn about our biological make up.

Elsie

[gillyhan68 in reply to elsieadams]

Beth was reading her teenage diary book from young epilepsy and julius Caesar and Napoleon had epilepsy too

[elsieadams]

Hope Beth is doing well and reading up on how being determined and having a positive attitude can and will make a great difference in her life. She will become a very strong and successful individual. My son was diagnosed with Asperger's syndrome , a type of autism when he was four. He faced many challenges as well but being a trained teacher I gave up my career to guide and be there for him throughout his journey. He turned 31 on xmas day and lives about 19 hours away from home . He is totally independent and is a controller for a company. I am so very proud of him. Beth keep reading and study lots life is a great journey regardless of our challenges. We are all so special in many different ways. Happy New Year to all.

[Hidden]

Hi Elsie, welcome! Yes, as an older person with epilepsy and due to experimental problems, medication has also caused havoc on the stomach and I now have gastritis... My epilepsy meds work though!

[Hidden]

I run a page on Facebook for epilepsy support, and am Admin to many groups.... If you wish to join in, feel free to contact me. Keep strong and well.

[gemma26 in reply to Hidden]

Hi could you add me ti the face book support group please x

[Hidden in reply to gemma26]

Hi gemma26,

Please do me a favour and send me a friend request on Facebook... There are many groups we can join in... It's amazing when one finds friends and discusses with others, what knowledge can be found... Do me a favour too... On Facebook I need to know your real name as we get lots of spam.

[gemma26 in reply to Hidden]

Hi my name is gemma thomas i will have a look on facebook to add you thanks

[gemma26 in reply to gemma26]

I cant find you on face book ?

[Hidden in reply to gemma26]

Hi gemma... facebook.com/lesmal

[Lj08]

I think it’s great how everyone is so positive and that is way it should be I have said so many times, epilepsy will not become my label, I hate that so much. My medication doesn’t control my fits , but I will not let them stop me. I have done ok so far bringing up my little boy I haven’t pulled my hair out yet 😂😂 . I am and will always stay positive and keep trying

[Hidden]

Congratulations for having a positive attitude... We are all human and must stay together... Epilepsy is a complicated health condition, but being positive is a great help... DO NOT QUIT is my motto!