If we with epilepsy could drive, imagine, we would be called on at any time, day or night, come drive me, my kids, my dogs, here there, everywhere, and we would have no peace, no time to have our meals, always at he beck and call of family and friends to come and go to their wishes and now as it is, we just wait to be taken somewhere sometime......oh, awesome........
Why it's best to have Epilepsy...
- Thread starter Loudmouth
- Start date
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!
I've read all the wonderful, funny, quirky and outrageous (in a good way) things said in this string, laughed out loud and had a tear or two. It made me realize how much I've overcome, how far I've come. Epilepsy is a life long challenge that makes you have to dig deep and deal with things that you just wouldn't have to deal with otherwise. I'm lucky, my seizures are under control, for a long time now. I have a level of personal fortitude that most people don't have, because of my epilepsy and the constant challenge to perform at a normal level. I suppose it defines who I am and for that, I'm grateful.
My very 1st neuro was an Indian gentleman who I found very difficult and condescending. My next was an Indian lady that was vverry nice. My current one is American and not too bad to look at.
I have Never used E as an excuse for anything. I take care of my 2 yr. old grandson and my son's disabled sister-in-law during the week. I drive and live alone. My friends know I have E but have never really experienced me with it. The only ones that have witnessed it were my sister-in-law that lives in Budapest, my husband, who is dead, my good friend that lives 70 miles away and my 2 sons and their wives during my worst Christmas following my husband's death. But they seem to think all is well. Which it is, for now but who knows what the future holds.
Sorry to have made this so long. Got carried away.
M
I have Never used E as an excuse for anything. I take care of my 2 yr. old grandson and my son's disabled sister-in-law during the week. I drive and live alone. My friends know I have E but have never really experienced me with it. The only ones that have witnessed it were my sister-in-law that lives in Budapest, my husband, who is dead, my good friend that lives 70 miles away and my 2 sons and their wives during my worst Christmas following my husband's death. But they seem to think all is well. Which it is, for now but who knows what the future holds.
Sorry to have made this so long. Got carried away.
M
alivenwell
Veteran
- Messages
- 1,604
- Reaction score
- 0
- Points
- 156
I'm so sorry to hear about your husband's death. Stress like that alone can aggravate a seizure.
It sounds like you have a good attitude about all those other issues in your life. Personally, I just take life one day at a time; one hour at a time and cannot worry about the future. It prevents us from living in the current moment.
It sounds like you have a good attitude about all those other issues in your life. Personally, I just take life one day at a time; one hour at a time and cannot worry about the future. It prevents us from living in the current moment.
suebear
Veteran
- Messages
- 1,180
- Reaction score
- 123
- Points
- 188
wow.. that makes me think of the pink floyd song
suebear
Veteran
- Messages
- 1,180
- Reaction score
- 123
- Points
- 188
It's always great to challenge the doctors and neurologists
There has always been a certain like in showing documentation when I find something that is not quite right when questions come about. :rock:
suebear
Veteran
- Messages
- 1,180
- Reaction score
- 123
- Points
- 188
Yes, it sent me into a whirlwind for 20 plus years then the answers slowly stared coming about as a neurosurgeon at Univ of Nebraska in Omaha was willing to take the chance and do some mapping to see if he could make a difference.
We discovered the use of the Deep Brain Stimulator actually does work. There has been much testing done throughout Europe and Canada that has proven this stimulator does work on epileptic patients who cannot use medication, cannot get benefit from other surgery, and cannot get benefit from the Vagus Nerve Stimulator.
Since this procedure my seizure level has dropped from five or six seizures a day to one seizure every other month and there are times when I have had none. I actually just had a new DBS stimulator put in as of June 2014 and feel wonderful with everything working.
If you are in a situation where your seizures are still severely active still and nothing is helping perhaps this is something to further research? I would be happy to provide you with the neurosurgeon who takes care of all his patients off list. Feel free to contact me should you like this information.
Regards,
Sue
suebear
Veteran
- Messages
- 1,180
- Reaction score
- 123
- Points
- 188
There are a lot of things that can cause seizure cases, no one particular matter. I am far from a medical professional but have read enough symptom cases to have heard there are certain medical cases of patients that do experience your situation.
I highly suggest speaking to your neurologist regarding this matter as s/he would best be able to provide a direction on your medical treatment. It could be a simple matter of exercise when feeling the stress, to changing your diet briefly, to a small medication change. There is a variety of things that can be done I am sure but the medical professionals are the best persons who can give this issue the best attention.
I hope the above will give you some guidance on where to begin with your situation.
Regards,
Sue
- Messages
- 759
- Reaction score
- 1
- Points
- 0
I think we're missing the point of this thread..
It's best to have epilepsy coz it reminds me of the 'Kindness Of Strangers' - every time I collapse on the pavement, a stranger sees me and will call an ambulance and stay with me to make sure I'm all right. A complete stranger.
One time an old gent that was dressed up in a suit jacket to take his wife out to have his discount lunch at a local cafe found me seizing on the pavement in a pool of blood.
Without a thought he took off his best jacket and put it behind my head and it was instantly soaked.
That's why it's best..
It's best to have epilepsy coz it reminds me of the 'Kindness Of Strangers' - every time I collapse on the pavement, a stranger sees me and will call an ambulance and stay with me to make sure I'm all right. A complete stranger.
One time an old gent that was dressed up in a suit jacket to take his wife out to have his discount lunch at a local cafe found me seizing on the pavement in a pool of blood.
Without a thought he took off his best jacket and put it behind my head and it was instantly soaked.
That's why it's best..
Last edited:
If your pre-teen is being aggravating and won't stop bouncing the basketball in the house, you can just tell him, "That noise makes me feel like I might have a seizure, so please don't do that again." Works every time!
(sometimes it's true)
(sometimes it's true)
sarah hill
New
- Messages
- 42
- Reaction score
- 0
- Points
- 0
HEY I LIKE THIS....... NEVA SEEN ANYONE TRY BE POSITIVE BOUT THEIR EPILEPSY B4! Its amazing to find the good in everything..... one day ill get there 2! for now I think ill just stick to reading your posts keep posting..... im awed by all of you!
keep posting..... im awed by all of you!Chin up ! Always helps to look for the positive in things! My most positive reason (I've posted this before) is that if I didn't have epilepsy I would have never even considered adoption, and would therefore never have become a mother to my son.
We adopted him from birth and he is now 12. I love that little guy - and I keep thinking how amazing it is....if I didn't have epilepsy, he wouldn't be mine!
Yes, God has a plan. There is a reason for everything, and once we accept our trials, in time, we will come to know that reason as we experience His plan for us unfold.
We adopted him from birth and he is now 12. I love that little guy - and I keep thinking how amazing it is....if I didn't have epilepsy, he wouldn't be mine!
Yes, God has a plan. There is a reason for everything, and once we accept our trials, in time, we will come to know that reason as we experience His plan for us unfold.
Last edited:
I'm glad I have epilepsy because it taught me that it's ok to say that I can't do something. I am always asked to volunteer for different things, babysit, etc. having epilepsy changed that! I love babysitting, but I can't put others lives at risk, especially little kids! And now, I spend so much of my time having seizures, I need a chance to be a kid and have fun. I'm glad for my epilepsy because it has made my faith grow in leaps and bounds. I'm glad I have epilepsy because it made me realize how fortunate I am to have access to healthcare when I need it. Epilepsy has also showed me who my true friends are.
The fact that my seizures are nocturnal has probably made me more selective about who I choose to wake up next to. Probably saved me from getting a few other nasty diseases over all these years. Sleep is a very precious and very personal thing for me. My dog gets half my bed but I really trust him.
Highlander
New
- Messages
- 38
- Reaction score
- 0
- Points
- 0
Absolutely loved Crazychick's answer about the maths class and the maths exam. This actually happened to me. For years I felt mortified about a seizure I took during a maths test. I didn't take many seizures in school time, mainly at school discos and in the toilets where my pals usually found me unconscious. The lights got to me - but the doctors said I wasn't photosensitive - now they say I am, It's only taken 30 years...
I was at a party (without a disco...) and a guy who was in my circle of friends at school was there with his wife. We got chatting about school and some of the teachers. We both started talking about the maths teacher. I was surprised when my friend complained about him because he was very good at maths. 'We all felt really rotten for you when you had that seizure..' I just wished the floor would swallow me, 'but if you don't mind me saying so I was so glad you did because that was a hideous test'. I've felt better about the situation ever since I was told that.
Also, loved that one about the jerk...must try it...SLAP!!!
I adore the phrase 'medically exempt from driving', it sounds so official. People shut up and don't pester you on why you don't drive. I've had my clear years before, I object to driving because it is environmentally disastrous, fundamentally the single most dangerous thing people do on a daily basis and I'm sh*te at it.
I basically blamed a year of inappropriate comments that I made on a Keppra - on reflection, it seems Keppra was to blame. But some people truly deserved what was said to them and I secretly smile when I remember their faces.
Why else is it a great medical condition - well it can be controlled. Yep with crappy meds but it can be controlled.
After 2years of medical science, I realise there are an awful lot worse things that you could be diagnosed with; sometimes it really gets to me a bit when I see people posting and the just of the content is 'Oh I really don't want to /don't want my son or daughter to have this awful disease.
Whilst it is appreciated that the people posting are very scared and this isn't exactly a gift; there are different ways of approaching any possible diagnosis which may reflect more positively on the outcome and it would be nice if occasionally the feelings of those already obviously living with the 'awful disease' who were expected to reply with compassion were considered. Possibly I'm just being inconsiderate and lacking in empathy.
Free bus pass - yay! you have no idea how much it would cost me every month just to see my family from uni if I did not have that. Also, travel about town, it works out cheaper than a student pass.
Free prescriptions in the UK - for life.
I know a very attractive male GP, and two female neurologists, that the men I know seem to rate - basically come to Scotland!
An awful lot of assistance at Uni regards equipment to combat fatigue for recording lectures etc.
Yeah so Keppra and all the infections I got, increased seizures and syncope ruined my business, but I like uni and I could always teach again sometime, it's not like it's ended forever.
Regards us all being awesome, I like this
http://www.cafepress.co.uk/mf/60189...72698967970-pid-579687929&productId=579687929
I was at a party (without a disco...) and a guy who was in my circle of friends at school was there with his wife. We got chatting about school and some of the teachers. We both started talking about the maths teacher. I was surprised when my friend complained about him because he was very good at maths. 'We all felt really rotten for you when you had that seizure..' I just wished the floor would swallow me, 'but if you don't mind me saying so I was so glad you did because that was a hideous test'. I've felt better about the situation ever since I was told that.
Also, loved that one about the jerk...must try it...SLAP!!!
I adore the phrase 'medically exempt from driving', it sounds so official. People shut up and don't pester you on why you don't drive. I've had my clear years before, I object to driving because it is environmentally disastrous, fundamentally the single most dangerous thing people do on a daily basis and I'm sh*te at it.
I basically blamed a year of inappropriate comments that I made on a Keppra - on reflection, it seems Keppra was to blame. But some people truly deserved what was said to them and I secretly smile when I remember their faces.
Why else is it a great medical condition - well it can be controlled. Yep with crappy meds but it can be controlled.
After 2years of medical science, I realise there are an awful lot worse things that you could be diagnosed with; sometimes it really gets to me a bit when I see people posting and the just of the content is 'Oh I really don't want to /don't want my son or daughter to have this awful disease.
Whilst it is appreciated that the people posting are very scared and this isn't exactly a gift; there are different ways of approaching any possible diagnosis which may reflect more positively on the outcome and it would be nice if occasionally the feelings of those already obviously living with the 'awful disease' who were expected to reply with compassion were considered. Possibly I'm just being inconsiderate and lacking in empathy.
Free bus pass - yay! you have no idea how much it would cost me every month just to see my family from uni if I did not have that. Also, travel about town, it works out cheaper than a student pass.
Free prescriptions in the UK - for life.
I know a very attractive male GP, and two female neurologists, that the men I know seem to rate - basically come to Scotland!
An awful lot of assistance at Uni regards equipment to combat fatigue for recording lectures etc.
Yeah so Keppra and all the infections I got, increased seizures and syncope ruined my business, but I like uni and I could always teach again sometime, it's not like it's ended forever.
Regards us all being awesome, I like this
http://www.cafepress.co.uk/mf/60189...72698967970-pid-579687929&productId=579687929
Last edited:
I didn't read through so I might be repeating. But I find that epilepsy means you can NEVER be asked for any ride. Epilepsy is the reason I quit smoking and almost never drink. So it's probably saved my life.
Sent from my SM-G950U using Tapatalk
Sent from my SM-G950U using Tapatalk