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.

I did that too, I even had my sister speak to my GP. But she said seizures weren't her area and to talk to my neurologist, who just brushed me off again.
I don't want any solutions, just someone to talk to if that's okay please. What happened yesterday in the park really scared me and I just don't want to be on my own.

Are you claiming all the benefits you are entitled to?

www.turn2us.org.uk/

www.fndaction.org.uk/disability-information/

Have you been in contact with any support organisations like www.fndaction.org.uk

From a practical level, have you updated your emergency info on your phone and do you wear a medical alert bracelet?

www.fndaction.org.uk/fnd-toolkit/

Please don’t go into an area like a park alone if you sense a seizure, that’s more dangerous than being near people.
You can say you want a second opinion regarding medication, that’s every patient’s right.
Is it possible to share your flat with someone trustworthy?
You could contact Adult services at your local social services department. They may be able to help or at least know of other sources of help.

You need some sort of necklace or bracelet which tells people you are having a seizure. Although yours are not epileptic seizures if you contact the epilepsy society they will advise. You also need some sort of alarm in your flat.you say you are not a citizen..do you have full access to support in the uk?

You can contact Quarriers. They are specialists in helping people with seizures live as independently as possible.

This is awful for you op. I can't imagine how that must feel. I'm sorry you have been robbed too while so vumnerable as well. Do you live in a city? This may not be for you at all, but I've lived with both rurally and in the city and found that out in a very small village, community tends to be much tighter and if you can fit in and make a few friends you're always going to be looked after. Even if not it is generally at least, much safer.

I sustained a bad hip injury which ended me doing something I love, dance in case you're interested. I was very angry about it for a long time, I felt robbed by this injustice, but slowly I've realised that instead of focusing on the things I can no longer do, I can put extra focus on other things that I can and do still enjoy.

We're listening OP.

I loved my work so much. I worked in a care home. I miss my clients so much. I used to be able to drive as well, but I obviously can't now.
I do have a bracelet that states I have seizures and what to do.
I've only just finished my course at uni. I live in a city, I know some lovely people but no one I could depend on in the middle of the night to come pick me up from hospital.

I want to be able to go back to work. My neurologist is very optimistic that I will eventually, but doesn't seem to know how I could actually do that.
I'm more worried about my mental health at this point. I did try asking for help with that too but just got told to keep at it. So frustrating and scary that this is every day.

Hello. I’m sorry to hear you’re having to go through this and what an awful impact it’s having on your life. I’m a psychiatrist and have done quite a lot of work with people with FND. Medication is not usually helpful but therapy is. Usually neurologists should have links to psychological therapies. More than half of people seeing neurologists have a functional disorder so they should have some practical advice for you on how to address what’s happening. I’m sorry if that’s not been the case for you so far.

I am really sorry you’re going through this.

Our eldest started having seizures at 20 and was diagnosed with epilepsy, they have continued to increase in frequency and he has had to move back home with us due to the frequency, his consultant says he can’t be alone. He can’t work, or drive, and life is very much on hold until they find the right dose of medication to stop it (or at least stop it from continuing to get worse). The last year has been really stressful.

I am shocked though that there isn’t medication out there to help you.

Your situation sounds horrific and I hope you get answers soon.

Sorry I don't understand the not a citizen and can’t claim benefits for you disability comment? Was all this diagnosed in the Uk?

Depending on your route of entry into the UK and which visa you came here on, one of the restrictions is "no recourse to public funds" as you're expected to be self sufficient under the terms of the visa. So OP wouldn't automatically be entitled to any benefit help in the same way a UK citizen is, even now she's not working due to illness.

Edited to add for OP, depending on how long you've been here and how much you've contributed, you may be able to access some contribution based benefits if you haven't already. Worth speaking to a benefits adviser to double check.

The OP might not have recourse to public funds.

OP have you spoken to the Citizens Advice about any benefits? Do you have recourse to public funds? That can be overturned.
The Keto diet helped my son in law who has seizures (not epilepsy).
Have you contacted these grouos:
https://fndhope.org/
https://www.fndaction.org.uk/

Thanks. Wasn’t aware of that but makes sense what might be happening with OP.

You said you have no family but you mention a sister, can she offer more support? Can you ask directly?

Did you have travel insurance when on holiday? Maybe you can claim help on that?

I am sorry to hear this, this is such a awful thing for anyone to go through alone.

If there is anything I can help you with please let me know. Where do you live ? Do you have access to social workers who may look into providing a care worker to check on you at home?

The guide dog is such a good idea too. Please let me know where you live ? I will look into it for you.

Something certain trauma can set them off. After our dad died of cancer, my brother was involved in taking care of him with me, he started suffering with the exact same thing as you after our father passed away. They did eventually stop.

Have you been referred to the community mental health team?

Good question 🙋‍♀️

Thank you all of you. I really appreciate the solutions and questions but am not looking for answers. I just wanted to tell someone.

Stil here OP, if you want to talk.