[Yismymindblank12]

I want to start off I survived a sleep seizure that last almost 2 hours. I have a small history of epilepsy and have neurolical diagnosis of stiff person syndrome.

I'm angry and upset how I will die one of these days because I realized no one will help me because they don't see me as not ok and when they do they treat me and play down until they actually see me I'm pain or medically in trouble.

I'm sad because why was all my life I'm never getting help I needed and people ask me why I don't get good help because they don't try. Medical professionals psych Dr's all of them gave up on me.

I secretly want a best friend or a person I do and up dating knows how to best respond in the moment situations where I can die from shock and hurting myself or suffocating like I almost did earlier.

Like I can't tell you how helpless I feel. I called off work to be safe and like I had people help me.

I'm too scared to sleep.

[winter4me]

((((((((((((((((((((((((((((((hug)))))))))))))))))) Don't give up on getting help, this is such a rare diagnosis, ---maybe contact a major center like John Hopkins?/mayo?
Of course you are frightened. Who wouldn't be? Do whatever helps you to relax...
so sorry for what you are going through...

[Yismymindblank12]

I gotta go again to the hospital later to get reevaluated on epilepsy again. I'm telling you my head is throbbing and it hurts alot sleep deprivation caused this because of my work schedule.

One of these days before my parents become grandparents not by me but I would probably have to require assisted living requests or a friend to take care of me. I hate the idea of it, but at 22. I really have to consider the reality is definitely likely.

[divine1966]

Sorry you are going through this. Please get detailed info from your doctors

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[Yismymindblank12]

Originally Posted by divine1966

Sorry you are going through this. Please get detailed info from your doctors

Sent from my iPhone using Tapatalk

I am tonight my dad is taking me soon

[mama pajama]

What about a service dog? One that can warn you if they sense a seizure coming on?

[Yismymindblank12]

Originally Posted by mama pajama

What about a service dog? One that can warn you if they sense a seizure coming on?

Probably not happening likely. I cannot even see a neurologist ever regularly. I'm expecting to die young from whatever neurological issue I may have and man I don't care to live like this.

[winter4me]

This is such a rare condition, you might be able to find a clinical research/trial that you would qualify for and not have to pay for----
Having a pet would not be bad either, unless you are adverse to that---even if not a service dog--
Watch the expectations....next thing you know you might be aging...time is a funny thing.

[Prism Bunny]

Sorry that you are going through this, Yis. And I do hope you can get help soon.

You are not alone, though. I doubt this will help you at all but I have seizures as well. The smaller seizures will leave my body and face spasming for almost an hour, and I am left dazed, confused, and tired. The bigger ones sometimes make me lose consciousness for a mere few seconds to a couple of minutes. I have them in my sleep, as well. A week ago I suffered two major seizures in my sleep that lasted quite a while, and I woke up with my body bent like a pretzel and hurting horribly. I know your pain and fear, and I wish I could do more than just give you an e-hug, but please know that you are not alone.