Health & Fitness

Epilepsy

Health & Fitness

Posted by: jewels

3rd Mar 2009 11:47pm

Hi im epileptic and would like to get to know others who have it .I was diagnozed 20 months ago and it was a bit of a shock to say the least!!! I am still not stable yet and the doctors ca not work out why ,


Comments 19

Deepika
  • 3rd Aug 2017 10:44pm

Hi Jewels, l had Epilepsy when I was 6-7 which occured after being abused repeatedly by a carer. It was treated with medications for about 4.5 years and no symptoms till now at 31 years of age. I am living an absolutely normal life and doing everything l would want to. Initially I was not able to drive till cleared but now I drive as well. You just have to take precautions from trigger factors which your physician will explain. All the best with your recovery. Yes an active lifestyle, healthy eating habits, optimism and support from friends and family makes a good recipe.

Nefertari
  • 3rd Aug 2017 10:16pm

Hi jewels....I can only echo what Cas says in her reply....Don't despair and don't give up...there are so many other people who know just what you must be going through. I was diagnosed with epliepsy when I was 14 and at the time I remember thinking that it was 'the end of the world" ! However with the right medication and also a supportive family I overcame any fear I had and now consider my epilepsy just a nuisance. I have never had a driver's licence and I guess you could say that is one of the downsides to it but apart from that I have lived a very normal life. I am now in my 60's and am married and a grandmother of two beautiful little boys.

aussiegirl
  • 3rd Aug 2017 07:17pm

Hi. I have had epilepsy for over nearly 20 years. I got mine from a head injury. My medication is Neurontin. I take 4000 mg per day. I have no side effects frpm these meds at all. 3 in mprning. 4 at lunch. 3 at dinner. I do have the occasional seizure but not very often. Stress and extreme tiredness can set me off. I wasnt allowed to drive for 2 years when 1st diagnosed until it was under control
I can honestly say that i have never once driven while taken off the road.
I never go swimming unless someone is with me just in case.
You can live with this. You will learn what triggers you.
Good luck.

AnneS
  • 3rd Aug 2017 06:52pm

I don't have anyone in my family or friend group who suffer from epilepsy but I always hope that those who have this condition can live a good life.

Jezemeg8
  • 3rd Aug 2017 06:26pm

It could be simply a case of your system taking more time than normal to respond to the medication you're using, or it could be that the medication prescribed is not suitable for you as an individual. Like many other disorders there is no "one size fits all" treatment, and sometimes it takes longer than expected, even though one is following doctor's instructions to the letter.

Irene30655993
  • 14th Apr 2017 08:38am

I have had Epilepsy for almost all of my life.
During adulthood, it has just been a matter of taking your anticonvulsant medication as directed and avoiding other drugs that interact with it. I once went blind from an antibiotic that caused my anticonvulsant ti be toxic - it was the fright of my life!
If you're seizure free and stable don't let your anticonvulsant s make you dopey or sedated, except at night. If this happens change your neurologist.

jjdrer
  • 7th Apr 2014 01:02am

I would be interested to know if your has stablised now

jjdrer
  • 27th Jan 2014 12:52pm

I first started having seizures when I was 15 and diagnosed when I was 16.
I have tried several medications over the years. My epilepsy was like yours, a bit instable for awhile. My first one was Dilantin and it was proven by research a few years later that it leeches the calcium and minerals out of your bones. Some medications have worse side-effects than others. One made me permanently drowsy, one caused depression, one actually made me less stable. Everybody has different reactions if any. For a few years now (I am now 62) I have been on Lamotrigine twice a day. I was told never to go swimming or have a bath (there is too much risk of drowning). If I sense one coming I try to lie down on my side with my arm under my head to act as a pillow. My pet spot was the toilet so Mum had the door alterred to open outwards into the laundry. At a relative's place a few months ago, I had was vomitting a lot so I was sitting on the toilet floor with the door open, part of my time leaning against the wall when I had a seizure. Luckily I left the door open as their toilet is so small that they wouldn't have been open the door any further that ajar or it would have hit me. On that occasion I had a high temperature and spent a night in hospital on IV antibiotics. Tests revealed a bladder infection and I had no previous symptoms.
My epilepsy is now under control - except if I get sick, then it flares up again. Over the years I have fallen to the floor suddenly and had a few minor injuries including a broken nose, split my foreheard open on another occasion, skun down my spine when I fell against down against a door, but fortunately nothing that needed stitiches. On one occasion I didn't sense it quick enough, fell off the toilet, with my head stuck between the wall and the toilet cistern. My Mum was sound asleep and didn't hear me calling out so it took me awhile to manouvre and crawl out of there. On another occasion I had a really bad headache. When blood test results came back it showed I definitely had a cold or virus which I hadn't felt the symptoms of (except the headache was probably connected to it). I couldn't breathe through my nose after I broke it anyway so didn't know what the initial cause was....I also have never driven as I never last more than 2 years without a seizure. My reflexes are starting to slow down too, so I wouldn't feel safe learning now even if I was allowed to.
A child I know was diagnosed at 5 y.o. If she falls and hurts herself then feels OK apart from that, she sometimes walks a few metres then collapses, but is OK again within 15 - 20 seconds. She told her Mum she felt like she needed to have a sleep once before she walked across the lawn then collapsed a few mwters from her. Fortunately her Mum is a Nurse and been told what vital signs to check immediately after she regains consciousness. On the last occasion she told her Dad she felt sick, he was actually ahead of her on a path beside their house (still under construction), he told her to sit around, turned around to check her immediately and she was unconscious laying face down in the dirt. She hadn't managed to sit down properly. She was OK and walking around within about 25 seconds. On that occasion she wet pants which had never happened before.......Like me she just collapses on the floor, she shows no other signs that many others do. If you didn't know you would think borh of us were asleep on the floor.
I feel for those who get no warning of one coming, especially as it can result in serious injuries, which I have seen the results of in hospitals.
I hope by now your causes have been discovered and suitable medication to control your problems.
Some children actually grow out of it. I am not convinced that some times it is not genetic. I have 2 cousins and a niece who suffers from it. My 2 cousins were diagnosed when they were young children and have "grown out of it"

Anonymous
  • 24th Jan 2014 09:07am

I was diagnosed with absence epilepsy when I was 6 it took 2 years before my teachers realised I was having seizures and not being silly , I spent 5 years on a drug called epillem and was lucky enough to basically grow out of it.

cas
  • 21st Nov 2011 11:45pm

Hi jewels. Don't despair. I was diagnosed with epilepsy when I was 15. I am now in my early 60's and have led a wonderful and exciting life. Firstly, there is a lot to be gained by contacting the wonderful epilepsy associations in each state. they can help with brochures and someone to talk to to understand it more. It may take a while to be properly stabilised, but you will get there. I changed my various medications a few times, but these days there are so may good drugs on the market and your doc would be able to tell you about them and explain how they work. Don't give up - look forward. I think the only thing I couldn't do was get my drivers licence and that was possibly a good thing. Cheaper not running a car!! Good luck

Ruby1955
  • 4th Aug 2017 04:30pm
Hi jewels. Don't despair. I was diagnosed with epilepsy when I was 15. I am now in my early 60's and have led a wonderful and exciting life. Firstly, there is a lot to be gained by contacting...

Oh we are about the same age when diagnosed as we are now. I have had a few changes in medications too. Epilepsy has not stopped me from living my life to the full though one does has to be sensible like not putting oneself where there is flickering lights etc. It took me 5 years to get my drivers licence then I had to have a medical review every year. Never have had an issue with driving but I possibly am one of the lucky ones.

Irene30655993
  • 14th Apr 2017 08:48am
Hi jewels. Don't despair. I was diagnosed with epilepsy when I was 15. I am now in my early 60's and have led a wonderful and exciting life. Firstly, there is a lot to be gained by contacting...

It's great. I'm eligible to drive now. I will get my license for identity reasons. But, like you, why bother with your own vehicle? Especially if you live close to public transport. I will only drive to help others from time to time if they can't I can take over.

arneis
  • 3rd Apr 2011 02:29am

Aspartame could be the problem. Cut out all diet drinks, foods, extra chewies, anything with additive 950,951, 952. Google aspartame and read the horror stories.

kfactor
  • 15th Mar 2011 12:09am

I have been having seizures for the past 7 years and the doctors say my tests for epilepsy are inconclusive. Some have even implied that the seizures are all in my head, even though I have fractured my left wrist twice in the past 3 years during an episode. I don't know if anyone has heard of DYSTONIA, but it is worth asking your physicians about. I am about to see yet another neurologist at the end of the month to see what his opinion will be. There are 52 differing diagnosises for epilepsy, and even though I had a turn whilst in the middle of a eeg, the test was inconclusive. I understand how frustrating and debilitating this problem can be - but to everyone - hang in there - you will find the right person to help. And when you do, please forward his/her name to me!!

jjdrer
  • 7th Apr 2014 01:00am
I have been having seizures for the past 7 years and the doctors say my tests for epilepsy are inconclusive. Some have even implied that the seizures are all in my head, even though I have...

I know a child who has a similar thing. She had all types of tests, her also inconclusive. They can't find the cause of hers either. They have called hers epilform.

Mizz
  • 1st Mar 2011 03:12pm

That really sucks that you're still not stable at the moment, but don't give up! I was diagnosed with epilepsy when I was about 15 (Im 20 now), and although it does suck, you just persevere and make the most out of life. I don't let it get in my way. I take my medication regularly and 99% of the time I am able to lead a normal life. I work, I study at university, i have a huge social life (going clubbing and stuff with flashing lights even!). The best of luck to you. If you want a friend to talk to about it, hit me up on facebook.. my name is Miriam Rabbetts :)

Goulah
  • 27th Jul 2010 10:55pm

I would highly recommend that you get in touch with one of the excellent epilepsy organisations in your particular State. They will be able to help you with emotional and information support and make you realise that epilepsy should not chanage your life, only make things a bit different.

Don't worry Jewels as epilepsy is "manageable".

Irene30655993
  • 14th Apr 2017 08:40am
I would highly recommend that you get in touch with one of the excellent epilepsy organisations in your particular State. They will be able to help you with emotional and information support and...

I agree they helped me too.

queenie
  • 4th Mar 2010 02:49pm

hi i got 22 year old grandson that only found out couple weeks ago that hes epileptic if you want to make a friend you can send me an email i will pass on to him if you put ph no he will ring you and u can take from there his name is dwayne hes also slightly interlectually handy capped but hes easy to make frends with my email adress is aug_ust@live.com

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