Very scared, the doctors think I now have epilepsy. About to have tests at Royal London hospital

Hi, at the moment the type of "fit" I am having is either part of me jerks but I am more and more having whole body jerks where my whole body jerks at the same time. Since seeing a neuro they have got worse. Yesterday I had the worse one to date. After it happened I got a overwhelming feeling of fear and I was in tears. I tried to write a note but I couldn't write at all nor could I text and I wasn't making any sense when I was talking. I then spent the rest of the afternoon and all of last night asleep. I got hold of my daughter who was so worried she got the doctor round.

The doctor who seems to think I did have a fit and has told my family I can't be left alone anymore is this true. I would hate to have to be with someone all the time and my daughters (21 & 18 yrs) have there own life

Is it right that everyone with epilepsy has to have someone with them and if this is so do people do this . Does everyone have big families who can help out or is there help out there.

I am already unwell with fibromyalgia along with other things. I get ESA but that's it so I don't have the funds to pay someone.

I hope someone can give me some advice

Thanks Caroline

6 Replies

  • Carolinee71 - obviously, I can't say whether or not you actually have epilepsy - there can be many different reasons for having seizures - but if they turn out to be caused by epilepsy, then please try not to worry about this idea that you can't be left alone. Certainly, in my own experience, that doesn't have to be the case. I was living totally on my own when I was diagnosed and had no choice about how I dealt with the situation. I was having several major seizures a week plus lots of smaller "episodes" at that point and it took about 4 years to find the right medication to get things under control. Like you, I certainly had no funds to pay for any help - developing epilepsy had meant I had to give up my job as it was completely impractical, despite my employers being very patient and supportive, for me to carry on working. Of course, being on your own is not ideal, it isn't what most of us with epilepsy would choose, but it is perfectly possible to live alone. I had several "alarm" systems fitted ranging from something simple like a coded key box at my front door so that "authorised" people could get in if some problem was suspected (like me not answering my phone etc). I also had a system connected to my phone line which worked with a gadget I wore on my wrist and if I went suddenly from vertical to horizontal, it set off an alarm at a control centre and they could set up any help required. I never locked the bathroom door either so that I wouldn't be "trapped" inside if I had a seizure while I was in there. There are lots of little bits and pieces you can organise to make things a lot easier and you and your family can work out what you personally need to do. Hopefully it won't be long until you get a proper diagnosis and can start to get help and treatment for whatever it is found to be wrong. I think you will find that logging on to this forum will give you a lot of both practical and emotional support - I know it certainly does that for me. I have now been free of daytime seizures for about 3 and a half years (I still have the odd nocturnal one but that doesn't interfere with my life any more) so, never feel that there is no light at the end of the tunnel. Just come onto the forum and yell very loudly when/if things get on top of you - you can be sure we all understand how you feel!!

  • Hiya try not to be worry i no its really hard when i first starting having seizures i was 26yrs old after a brain infection no one ever told me anything it wasnt until many years later after tryin loads n loads of tablets that they told me they were absence seizures and when they came in clusters dont use the cooker have a bath go up the stairs go out have someone with me at all times well not once did i ever let it stop me doing anything i still work n all the other things normally even crossing the road but i took a big step last december the 12th and had brain surgery and i have been seizure free for six months its not been easy but worth it very worth it the surgery was ok just getting back to fitness is the problem but i am back at work already. When your having a seizure just go with the flow and i would go and see the neurologist again for different tablets coz they should stop u having seizures if not at least cut the amount your having down everytime u have one your brain gets damaged as quoted by the neurosurgeon good luck :-)x

  • My 38yr old son has had epilepsy since he was 18, and had brain surgery in London where part of his brain rwemoved and replaced with a titanium one. They could not put back the part they took out, as it was infected, so he was a year with half a skull. Seizure free since, and what a difference to his family life aas he has a 6yr old daughter. I am 63 and epilepsy since 11yrs old. My father had it as does my 38yr old niece. So glad the op went well

  • Very hard I know I felt the same when I got diagnosed but try to not to worry I have epilepsy and can be left alone but each is different

  • Please it is frightening at first but as others have said you can be alone if you are sensible. Organise a life line,where you wear a bracelet or locket connected to a centre so that if you feel unwell you can press it and speak to someone in case you require an ambulance. My daughter has had epilepsy since age 13 and now works 4 days a week is home alone on Wed.but uses her lifeline. Also once you medication is sorted you may find seizures are less frequent. Join Epilepsy Action,which has a monthly magazine and Help lines so you can talk to someone for information. Good luck , there is life with epilepsy. I developed it aged 47 and take regular medication and after 2 yrs regained my driving licence.

  • Hi Caroline you are feeling like this because your nervous system has been shook up and needs to settle! That is why you are very emotional and will feel insecure until the nerves settle. Also your brain is affected due to the electric sparks that trigger it off, so you won't be able to function very well until you come to, gradually! Most people do get terrible headaches afterwards.It is frightening and fearful, just hope you recover soon. I also have chronic fatigue as well but the lack of sleep does not help it, because with epilepsy you need plenty of sleep!

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