What it's Like Having Epilepsy

Part 1:
I started having seizures at the age of 34. I was told that I had developed temporal lobe epilepsy. No cause or reasons were ever offered. I have tonic-clonic seizures that occur once or twice a week and come with very little warning. What triggers the seizures remains a mystery although MRI scans indicate an area in my left temporal lobe has a 'hemangioma' (that means some deformed blood vessels)

Category:

People & Blogs

Tags:

• Epilepsy

[Niceboy3377]

r seizures painful

[tegid247]

@Niceboy3377 Thanks for writing that comment - and a very important one that people don't often dare ask. I have total amnesia during seizures, so I don't remember any pain. I'm told that I don't appear to be in pain during the convulsions, despite the strange yelling and foaming at mouth. For a few hours afterwards, it's like I have a natural anaesthetic which wears off. Pain then becomes apparent - bitten tongue, bruises and zero energy. I guess everyone is different in that respect.

[tegid247]

A huge, huge thank you to the people that have kindly left messages on this video. I have found that I have to spend a lot of time using public transport and hence do not get much time to answer people individually - much as I would like to. Nevertheless, your comments have been very inspiring: I feel very grateful for them.

[milojams]

I'm 44 and I just started having seizures. I have been having dejavu auras for the last 10 years. I have had a total of 3 seizures, in the last 5 months. The last time I stood up next to my bed and fell against the wall. I hit my noseHARD and woke up in a big puddle of blood.I had an MRI and EEG and they showed nothing wrong.Now I'm on Keppra. Pretty scarey

[tegid247]

Thank you for taking the time to write that message to me. I appreciate that it is a frightening experience, being diagnosed with an illness where you lose control of your brain - your memories and thoughts being 'switched off' for a time... More frightening I think is the way that other people respond to this and then having to take on board THEIR fear about something that you have done when you have utterly no memory of that event or any 'say' in the matter.

[tegid247]

The more I find out epilepsy, the more I appreciate that we know very little about it. Medics want to prescribe an instant 'cure' and do so through pills which can work very well in some cases - and for those cases, I am very pleased. However, in about 30% of cases, these pills do NOT work and have abysmal side-effects. I was one of those. Please have the courage to talk about your experiences and don't allow fear to overcome your condition. It IS scarey - share this, discuss it and stay strong.

[15charlee]

I know how you feel man I have had epilepsy senses I was 6 years old and it got worse after I hAd a tumor taken out of my left temporal lobe. The scaring caused damages and now I have larger episode. Like the saying goes life sucks then you die

[sippikatz]

Hi, First of all well done to you for making a good video and explaining about your Eplilepsy.....not many people would do that!! I also have it and have done since I was 17 and listening to you was like listening to my own story as I do exactly the same. The only difference is I do take medication even though it hasn't fully controlled them. I just hate the way it affects my life so much especially with regards to things like work and driving BUT I try to enjoy life. Keep smiling!! x

[WeaponXXIV]

I'm 23 and have had epilepsy my entire life. I feel exactly the same and it makes me angry that there is a long span of time that I don't remember. Once I had one while I was in the shower and my body covered the drain and my face was in the water at the bottom of the shower. I'm lucky my sister heard me.

Everytime I have one it's like a punch in the face. I have to go back to square one.

[Niceboy3377]

@tegid247 ohhhh i dont wanna have one especially tonic-clonics

[TheDarkhorse228]

hey im 13 and ive had siezures since 2nd grade . when i have seizure i cannot use my arms. i cant talk. and i can barely move . but i only have seizures when i am asleep and my my family knows when i have a seizure bc they can hear me making moaning noises and hear me bumping into the walls while im trying to walk to their room . but the siezures stopped about 3 years ago and i havent had one since . i also got pills. i had to take tham after the siezure ended

[NSDFbyTerrificTonya]

Terrific Tonya offering you support and love from America. I was born with a rare brain abnormality resulting in over 150 seizures a month for 43 years. Nov 2010, seizures stopped altogether for 5 months(reason unknown). I appreciate this video and your bravery in coming forward in telling your story. Hold onto Hope and know you are not alone. - Terrific Tonya Heathco, National Seizure Disorders Foundation , Tennessee USA

[duvexy]

@tegid247 I hear you. However in our society epilepsy is treated as a disorder, but what if it is not a disorder? What if epilepsy has a true benefit. I have heard i n some cultures epileptics are viewed as shamans.