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So I will try to explain. I have suffered with Epilepsy for 10 years and my seizures have never been controlled with several every week and sometimes multiple seizures in a single day. I have tried over 7 different types of medications, which gave me side effects ranging from low blood sodium levels to hallucinations and sleeping for 20+hours a day. I currently take a combination of 3 medications.
It led to my DH losing his job due to the number of times he had to leave work as I ended up in hospital or having bad falls and he became my carer for 9 years.(Yes we were in receipt of a lot of benefits which I hated claiming but didn't feel we had a choice at the time) He has only recently gone back to work for financial necessity. With the changes to disability benefits, I lost a lot of my benefit when it changed from DLA to PIP and therefore my husband was no longer entitled to Carers Allowance. No changes to my medical condition or seizure frequency just the way they calculate the Care Component of the new benefit and we couldn't keep a roof over our heads without him returning to work.
Anyway I know I was blessed to have him as a carer but having not going out on my own since 2011 and not being left on my own, I am now on my own all day and having to do the school run alone as well as everything else (like the majority of mothers of school age children of course). When I have a seizure there is no one to make sure that I am safe and clean up after me etc.
It has been hard to adjust to the change but I am getting there and I understand there are people in way worse situations than me.
However, I am now finding it incredibly scary when I wake after a seizure alone as I am very confused and sometimes in pain due to the way I fall. I'm not quite sure how to cope with the uncertainty I feel. My biggest fear is having a seizure crossing the road or a similar situation.
How do I overcome this fear?
I really feel for you OP. Sounds a bit off the wall, but would you be eligible for a support dog? From what I understand, they know beforehand if you’re going to have a seizure and then get you somewhere safe. That could really help with confidence in going out and staying safe?
Can you get a referral to the National Hospital for Neurology and Neurosurgery? They may be able to explore other options for controlling your epilepsy.
Regarding your fear of having a seizure crossing the road - that sounds completely understandable. Can you make sure you cross only at crossings where possible? Wear clothes that make you very visible to traffic?
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