Change in condition

[_Emmasaurusrex]

Hey guys,

I was diagnosed with epilepsy 18 months ago and have always had seizures in my sleep.. until last Thursday. I had a seizure during the day, which terrified me. Obviously I don't know whether my medication may need changed or whether my epilepsy needs to be reexamined entirely.. I really don't know. I have tried to contact my consultant and my doctor and I am having no luck with either, I was told the message had been 'passed on'. If it wasn't something that directly effected my work I would be happy to wait but I'm very aware of being.. a safety risk in all honesty. Could I please have some advice on what I can do to be seen quicker, or, someone else I can go to?

Thank you

[EpilepsyAction1 Partner Epilepsy Action]

Hi Emma

I hope you hear from other on this platform as sharing information can be a great idea.

It must have come as a shock to have a day time seizure out of the blue.

If you have an epilepsy nurse the may be a good point of contact until you can speak to consultant. But I know that not everyone has an epilepsy nurse. Unfortunately, I don't have any other suggestions on how to be seen quicker.

However, it sounds like it would be a good idea to speak to your employer about your recent seizure. They can go through a health and safety risk assessment with you. Epilepsy Action have a risk assessment template your employer can use.

If this assessment finds any risks, your employer should look to see if they can put in reasonable adjustments for you to keep you safe at work. We have more information about this here.

If we can be of any more help, please feel free to contact us again, either by email, live chat or the Epilepsy Action Helpline freephone 0808 800 5050. Our helpline is open Monday to Friday 8.30am until 5.00pm and Saturday 10.00am until 4.00pm.

Regards

Jess

[_Emmasaurusrex in reply to EpilepsyAction1]

Thank you very much for getting back to me with your advice, it is really appreciated and helped immensely 😊

[car67]

Hi Emma

Sounds really scary, unfortunately like everyone, getting an appointment with a Dr or a neurologist is a nightmare, log all your day seizures ( I hope there’s not many) do you have any rescue medication? If so what’s the advice from your Dr/Neurologist on taking them?

I wouldn’t risk going out anywhere alone, if your day seizures are not good especially if you are not used to having them during the day, do you have an aura? Jot every thing down so when you eventually get an appointment you have all the info ready. I hope everything works out for you.

I used the epilepsy action risk assessment for work, it’s really good , detailed and simple, just what I needed. Take care.

[_Emmasaurusrex in reply to car67]

Thank you very much for getting back to me, I have spoken to my neurologist but I'll be entirely honest.. I didn't really get any advice in regards to my seizures now occuring during the day, how it could effect work etc. I was told 'it can happen' and that was about it. Which I understand that definitive actions couldn't be advised, but a bit of advice in regards to life style, home life and work would have been appreciated. I was told to regulate my sleep pattern as best as I could and that was about it - and I was advised to query it with this organisation.. Which again, I totally understand as it's a marvelous resource that has been so helpful for me. But I do wish that my actual neurologist could advise me, even if it was a series of things that could potentially help, rather than stating the obvious in regards to sleep. Sorry for ranting, I just feel very much in limbo at the moment.

[car67]

Hi Emma

Trust me, you’re not ranting , I have ranted on here so many times, probably essay longs ☺️, it’s good to rant, better out than in. It seems we are sign posted to organisation or have print outs from drs and sometimes left to our own devices to research our conditions. Lucky for us epilepsy action is fantastic, you can call them and they will help you as much as they can. Document everything from your neurologist , if things don’t improve try to get another appointment, Im probably not being much help either, 😞. Speak to your GP tell them your not happy with your answers , after all if anything happens please God it doesn’t questions will need to be answered. I think you might have to push and push for answers , we are living in a world where we have to do this or the quiet ones get left behind. You have a condition and require medical professional answers to , currently you are not happy with the answers you have received so pursue this or you will get lost in the system. Sorry, now I feel like I’m ranting. Take care and best wishes.