My story

I was diagnosed with elipesy after having my son in 2011 I was already had an under active throyid and anemia before this. My partner said I screamed then tonic clonic seizure I don't recall any of it. I was on sodium valporate but switched to lamongitine as we wanted to have more children in the future. Then I was seizure free for five years then 30th of June this year I had six seizures that started from temporal lobe the focal then went tonic clonic for the first one it was just me and my son at home it scared him and he tried to get help. My partner luckily came home from work when I had the 2nd seizure I was then in hospital and now on kappra 500mg twice a day my lamongitine is 150mg twice a day and my throyid med is 125mg once a day along with my iron tablets and allergy tablets. I am now scared of travelling alone with my son in public in case I fit the school are teaching him speed dial. What is the best way for me to get transport for my son to and from I have applied for pip .my partner said I showed fear before he went to work. But because I had been seizure free for so long and I had no real warnings it all came at onceach any advice would be appreciated

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  • hi really sorry to hear that your little one got scared, i have 2 children one at 21 who has left home and one at 9, i put phone numbers up on the fridge door so he gets the phone and types it in but he knows how to use a mobile phone nokia are the best because you can put his dads number on the front and he can then just press it if you have a fit. i have always tried to laugh about my fits around my son and i told my daughter when she lived at home with us not to take him out of the room when i had a fit to let him see it so he could see it was mummy having a seizure and making funny noises he used to think i was burping and ask me to say pardon, if see's your not scared its normal it will help him yes he will get upset but be less scared meaning less stress for you, i promise it works its just me and my little boy at home he knows i liked to be lefted alone and not fussed over he moves things out of the way and follows me to the bathroom, im not saying your son should do that just saying he will get used to it and laugh at yourself , now sorry that was long winded have you checked your other medication is not effecting your meds as that can happen, im on the same meds as you and i cant even take heyfever tablets, i take b6 and magnesium with zinc that did wonders for me and my fits someone else on the site said they drink turmeric and milk at night with there medication try it. as for getting your school you can ring the council and if they think you have a disability they will come and get him. dont give up on yourself its just me and my son i get the bus i walk him to school we go on holidays and its just the two of us laugh at yourself and take advice from people on here they try strange things but sometimes they work!!!!!

    goodluck to you and your whole family xx

  • Am54

    Hi Helen.

    My son of 39 started seizures age 11 after he was hit by a car when he was 10 years old. .He suffered a severe brain injury. The seizures were managed very well over the years with Sodium Valproate and Lamotrigine, but when he was 37 and after the death of my husband the seizures slowly got very bad. In 2014 he had 6-7 seizures a day. In and out of hospital and his neurologist tried Keppra with very poor results as the doctor had taken him off Lamotrigine completely!!! He was very bad for 4 months until I asked for a second opinion as I believed he should be on Lamotrigine. This doctor agreed that he should be back on Lamotrigine! It is not always easy to find the right combination of medicine that works for each individual but the new neurologist put him on: 750mg Keppra twice a day, 150 mg Lamotrigine twice a day and my son was also on 1200mg Sodium Valproate ( this was not changed) twice a day. The result was fabulous!! He now has the odd break through seizure but he is Coping very well with life again and most of all enjoying his life. I am his mum and full time carer and after 4 very bad months we are smiling again.I understand that you worry about having a fit but I believe if your son understands what happens, he will be able to do what is needed to help you and not get stressed. Transport is not easy in your case as I assume you may not be able to drive, but maybe it is possible to get a bus pass and in the event something would happen, you would have people around to help you. If the school is too far or not on a bus route, maybe a friend can drop him off and pick him up. I hope things will get better and easier for you and find the confidence again to travel with your son. My very best wishes for you and your family.

  • Hi,

    I tried several medications to control my epilepsy. Unfortunately the only one that works at all is sodium valproate. Of course this is rubbish because I wanted to have children.

    I was seizure free for 7 years and then all of a sudden they started again. Luckily I managed to get down to a low dose and got pregnant and had a son recently who is very healthy but now he has been born and my husband is back at work we have increased my dose dramatically as I had several seizures while pregnant and just after Jack was born.

    It is really horrible when you think you are past epilepsy and then all of a sudden it comes back. I had actually just applied for a learner driving licence when it started again! Now I have decided I will never drive even if I go through a long period without seizures again. However, you are entitled to a bus pass from your local council and a rail pass from national rail in the uk if you have a disability which means you can't drive, so take full advantage of that.

    Don't let your epilepsy trap you in the house. It is probably actually more dangerous for you to have a seizure when you are home alone than out and about in public. Get yourself a wristband with an emergency contact number on it (mine has my husband's mobile number on). You can get quite stylish ones now.

    I hope you find a way to get on with your life again, and don't worry too much about your son, children take things in their stride much more than adults!

    All the best,

    Amy

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