Not sure what to do

[Girlontheterrace]

Hi everyone,
This is my first time posting here and my sister's suggested I do this just to see what people say.
I was in an accident a year ago and began having seizures. I had to resign from my job and lost many friends.
I'm having seizures every single day, sometimes up to 6 in a single day. Either I have them alone in my flat, which is terrifying as I live alone and have no family. Or I have them in public, where an ambulance is called, I'm taken to A&E, made to wait and then told there's nothing they can do because they aren't life threatening.
I'm having once weekly appointments at the hospital to learn to "manage" the seizures because they don't think they will stop. I've been taken advantage of and stolen from while unconscious.
Yesterday I was discharged from hospital and on the bus home I knew I was going to have another. I got down a few stops early and lay down in the park. It was very late and really cold. I was all alone.
I just wanted to tell someone, this is so scary and awful and I can't figure out what to do next.
Thanks for reading all this.

Oh I'm sorry. I have nothing to offer except to say I've heard you. It must be awful to live with x

That’s awful OP I can’t believe this is happening to you, I’m shocked there isn’t more of a solution for this. I don’t know how it feels but I would rather me on a bus at least you are safer. I’m worried in a park late at night you could be assaulted

That’s awful OP. Outside A&E have you seen a neurologist or someone for thorough investigation and diagnosis? This doesn’t sound like a ‘learn to live with it’ scenario as it’s highly dangerous in and out of the home.

Have you contacted the Epilepsy association? They may be able to advise you.

That sounds very difficult OP. What does learning to manage them look like? Are they giving you strategies for if you are out and about and can tell you are going to have a seizure? Is medication being discussed? Are you under a neurologist?

Consider getting an assistance dog. It will keep you safe as well as alert you of the upcoming seizure much earlier than you would normally be able to feel one coming on. My friend has one as she also experiences non-epileptic seizures and the dogs been a lifesaver. Literally.

I have listened to you and I am so sorry for what you are going through, OP.

At the hospital or in your local area are there any charities or organisations which might be able to offer you some human support?

I've seen a neurologist, he told me sometimes after accidents or severe illness people start having something called functional seizures. It's not epilepsy, but it's very similar.
I have been assaulted, more than once, and they note it down but don't take action. The GP says 'keep doing what you're doing'. I've had three ambulances in the past week. They have all been very kind and stabilised me but there's no long term solution.
In addition I'm not safe at home, I don't want to go into why but they referred me to safeguarding, who just discharged me as well because they don't want to interfere in medical stuff.
My sister wants me to be admitted in hospital until they can come up with a better plan.
I keep thinking I'm alone in the park again and no one will ever see me again. I never want to have another seizure again.

Have you received any support from psychiatry?

I can't believe you haven't been offered seizure prevention medication

That's shocking if not - you need to push to see thd neurologist again

If you are unsafe at home for reasons other than your seizures could you none in with your sister for the short term while you try to come up with a better solution?

I've had an assessment for counselling because I became depressed after having to leave my job. I absolutely loved my work. But that was rejected too, because they are not equipped to work someone who has seizures to this degree.

Are they considering FND? If so, there are FND specialist services who may be able to offer further support.

Gosh OP, this sounds awful. I don't have any medical advice but couldn't read and run.
I sincerely hope someone can give you some answers soon

My sister doesn't live in the UK anymore and I've got no other family.
I did ask the neurologist for medication, but he said it wouldn't work for seizures that aren't epilepsy.
It's very interesting about the dogs because my friend's dog knew when I was going to have one before I had any idea and I can usually predict mine. I wish I could get a dog, I would so love that. But I wouldn't be able to care for one as ill as I currently am and I couldn't do that to a poor dog.

I think they've noted FND on my file but I will have to check. It's complicated because I have other medical conditions too.
I am not really looking for answers, just wish I knew how to solve this, and feeling very bad physically and mentally as well.

Just to say we are still here and still listening OP. I’ll have a think for you but hopefully someone wiser comes along with a suggestion

That sounds so scary for you. Can you ask your local council for an Occupational Therapist assessment? I know they put in seizure alarms and safety equipment.

Thank you all. I'm so scared. It just keeps happening. Even in my sleep now and everyone just keeps telling me I'm doing well but I'm not. I've torn muscles in my shoulders from the seizures. I don't want to go to sleep. I don't want to make a fuss but I'm so scared. Why do people keep saying I'm doing well?

What if you get an appropriately trained assistance dog as Girlontheterrace suggests? You'd have a loving companion as well as assistance.

What you're going through is so distressing. It surely can't be allowed to happen.

That sounds very scary. I wonder of the council might be able to house you in some kind of supported living environment, even if only temporarily while, hopefully, doctors can work out what is going on. I hope that things improve for you

I feel like I've done literally everything. I'm sorry if it sounds like I'm being stubborn or difficult replying to all your suggestions saying I've already done this. But I have spoken to the council, they sent in a carer who saw me have a seizure and panicked, screamed and shook me. If I could afford an alarm I would want one but as I'm not working I can't, and I'm not a citizen so I can't apply for benefits.

This is horrendous.
As you had an accident were you able to make an insurance claim. This should cover the expense of you having full time care, someone with you when you have the seizures. It's impossible for you to continue like this without proper care. Sorry if this is not possible but you cannot be left along..its too dangerous.
A supported living environment is a good suggestion.

I am so sorry you are going through this - no one should have to deal with this alone. Thinking of you tonight and hope you are able to get through it OK, Your GP must help you - can you go back and see a doctor at the GP surgery and tell them what you have said here. You definitely need properly qualified care where you live, whether in the home you are in now or in an assisted living place. Please insist on seeing a doctor tomorrow, preferably early in the day so they have time to arrange something for you.

I am alone, except when I get out to see friends. Up until recently I was able to work with accommodations, and I had a high risk job.
The accident was when I was visiting friends in another country.
I think if I can just get a plan together I should be okay. I have to figure something out but I'm just so tired.