If you need urgent support, call 999 or go to your nearest A&E. To contact our Crisis Messenger (open 24/7) text THEMIX to 85258.
Read the community guidelines before posting ✨
Options
Epilepsy and me
One-in-a-million
Posts: 599 Incredible Poster
I was diagnosed with west syndrome as a baby which can lead to a number of disabilities in child and adulthood.
I was cleared at the age of 5 but was delayed on my development compared with the rest of my peers.
I've since caught up and with minor issues with reading and writing (although to dyslexia) I have no other problems.
I started to have funny sensations when I was about 14 I would feel anxious and scared for no reason, have a metallic taste, feel floaty and spaced out. And a few other problems. The worst being becoming confused and forgetting what I'm doing and how to do it (this doesn't always occur.) I am aware if these happening and can normally tell someone what is going on with the occasional slured speech
Anyway it took them 5 years to diagnose me as they kept saying it was migraine related and even telling my mum they thought I was making it up for attention.
Until I had what is known as a tonic seizure where I raised one hand in the air. Talked jibberish and had no recollection of it happening (nan witnessed it)
I was then tested and diagnosed with epilepsy. Don't get me wrong I'm ok with it but it's so frustrating when there are things I'm not allowed to do without waiting 12 months after my last seizure and get halfway through my time and then have one which restarts my time again. I had 3 on Sunday and now have to wait another 12 months!!!! And to be honest they are not very nice and feel horrible.
I also find that when I have had previous attacks in the street which lead to confusion. People will stare at me, give my funny looks and/or avoid me as if I'm dangerous.
I mentioned a woman in a previous thread who saw me looking around while in a cafe and asked me if everything was ok. She was really understanding and helped me. These seizures last aprox 30 seconds to a minute but she carried on talking to me until she was sure I was ok.
It's never really bothered me before but it's so annoying when I have to restart my 12 months clear before I can think about doing certain things like driving.
It will also effect on pregnancy as I will need to plan 2 months before trying as I will have to go one some more medication and have other things to ensure that it will be a safe pregnancy for me and the baby.
It was also mentioned that I would need to consult my doctor on contraception when I become sexually active to ensure I am completely safe. Of course this may feel a lot awkward when it comes to that time.
Just seems so annoying that all this will have to happen.
I was cleared at the age of 5 but was delayed on my development compared with the rest of my peers.
I've since caught up and with minor issues with reading and writing (although to dyslexia) I have no other problems.
I started to have funny sensations when I was about 14 I would feel anxious and scared for no reason, have a metallic taste, feel floaty and spaced out. And a few other problems. The worst being becoming confused and forgetting what I'm doing and how to do it (this doesn't always occur.) I am aware if these happening and can normally tell someone what is going on with the occasional slured speech
Anyway it took them 5 years to diagnose me as they kept saying it was migraine related and even telling my mum they thought I was making it up for attention.
Until I had what is known as a tonic seizure where I raised one hand in the air. Talked jibberish and had no recollection of it happening (nan witnessed it)
I was then tested and diagnosed with epilepsy. Don't get me wrong I'm ok with it but it's so frustrating when there are things I'm not allowed to do without waiting 12 months after my last seizure and get halfway through my time and then have one which restarts my time again. I had 3 on Sunday and now have to wait another 12 months!!!! And to be honest they are not very nice and feel horrible.
I also find that when I have had previous attacks in the street which lead to confusion. People will stare at me, give my funny looks and/or avoid me as if I'm dangerous.
I mentioned a woman in a previous thread who saw me looking around while in a cafe and asked me if everything was ok. She was really understanding and helped me. These seizures last aprox 30 seconds to a minute but she carried on talking to me until she was sure I was ok.
It's never really bothered me before but it's so annoying when I have to restart my 12 months clear before I can think about doing certain things like driving.
It will also effect on pregnancy as I will need to plan 2 months before trying as I will have to go one some more medication and have other things to ensure that it will be a safe pregnancy for me and the baby.
It was also mentioned that I would need to consult my doctor on contraception when I become sexually active to ensure I am completely safe. Of course this may feel a lot awkward when it comes to that time.
Just seems so annoying that all this will have to happen.
0