[Jenn1fer82]

I recently had one of the worst epileptic episodes, I had went into a full convulsion. I was taking my usual walk and talking on my cell phone with my friend. I felt a strong aura coming on and the last thing I remember is telling her to please stay on the phone with me. From that moment on I was at the hospital and it took about 2 hours at the hospital to be able to understand and realize what happened to me. At the hospital I had 2 more mild episodes. From everyone I talked to when I was walking this is what happened to me:

A young boy on his bike found me at a corner of a intersection. He waved down the people whe were driving by to stop and help me. Thankfully someone did stop and she called the police and they send an ambulance to take me to the hospital. The friend that I was talking to called my family and told them where I was at. My younger brother and mom came to the scene. Everyone told me that I was out cold and my eyes were moving so rapidly.

My right knee is so badly cut that I could barely walk. The whole right side of my face is cut and my eye is swollen to where I can't even look out of it. I'm burised all over of my body.

My usual episodes are just me having an aura and I'll have a blank look on my face and I'll either lay down or sit and let it pass through my body. Afterwards I'll be very distraught and not knowing where I was at or time it is. I'll be consumed by intenest muscle weakness.

What just happened a few days ago (Thursday) scares me so much. When I think I understands my episodes and knowing how to prepare for them it gets termendously worst. I really don't want to be alone right now and need all the support I could get. My family are simply not understanding my circumstances ever since I've been diagonised with Partial Complex Seziures. They haven't said it but through their actions and words it is as though they are saying "okay, here she goes again blanking out, falling over again, owell" how can they be so unsenseitive, they are my family. I am so angry, disappointed and hurt by them. I really want to sit them all down, write them a letter and really let them know how much they have hurt me.

My 17 year sister moved out for the summer. She now tells me that she won't move back in unless I leave. Why has everyone made it seem like I asked this for myself to epileptic. The person who is at the lowest point who is scared and uncertain contines to be beaten down.

The simpilest things for asking for a ride down the street, I get lectured, intearegated first and having to listen to each of my family members that how busy they are and that I'm such an unconvience to them. Why haven't any of them consider my situation that I no longer have the same control of my life as before.

My parents first thought that asking me to leave and stay at a spare house of my aunt would be best. Would it make it easier for my family not having to look at me everyday so that they don't have to deal with me. At the time when I need the most support they tell me to leave. Instead of asking me to leave now, they have rearrange the rooms so that I can have my own space. I have the room with my 10 year old sister. My parents moved out to the living room. My brothers which are 19 and 15 have their rooms still and my 17 year sister has her own room where before all the sisters shared a room together. Knowing the patterns of my family, sooner or later it will all be thrown back into my face. "Its all your fault Jennifer that we must adjust to your damn health". To be honest I can't hear those words anymore, its too painful.

My aunt tells me to give it a try with the new living arrangement and if it doesnt work out, her spare house is still open to me.

It hurts so much that in a family I feel so ALONE and now my episodes have been getting worst.

[PasDeDeux]

Hi I am so sorry your family has treated you this way or that you feel they do. That has to hurt you didn't ask for this disease/disorder. You may want to copy and paste this in depression too so others can see it. Someone in my family is epileptic and we try not to make them feel bad when they have a convulsion now you have me wondering if we may be sending the message we don't care or its just another day......Maybe you need a med change. That happens often from what little I know. It may be time to see your neuro again

HUGS

[Loen210]

Goodness,
I reach out for you. I'm so srry you are suffering from these frightening episodes that you do't have control over.

If anyone in my family had those risks, I'd big them NOT to leave the house, and encourage to really takecare of yourself and spend more time even together. So sorry your family has not been supportive, especially your sister. But your sister is likely at that young adult ready-to-leave-for-college age.

I would recommend that you see a psychiatrist/psychologist. And he/she can also refer you to a family therapist, which I woudl highly recommend. Maybe your psyche can even call the house to ask your family to attend rather than YOU having to request, which they may immediately decline to doing. But through a therapist is wen people can express themselves more cleanly, and the threapist can encourage and give ideas on how to give better support and love.

Wishing you luck!
Hana

[Evangelista]

This sounds like such a horrid way to treat someone who is ill..especially by ones own family..I am so sorry you have to endure this kind of treatment, its not your fault your ill..no one chooses to be that way..I hope you continue to post, maybe in another forum too, so you can get added support for what you are going thru.. Take care and you are not the disease that overwhelms your body, you are a human being who deserves to be treated with love and respect..

[FaithisAlive]

I'm sorry they are so insensitive towards you! My father had epilepsy and had frequent seizures every day... several a day most of the time.

I can remember being alone with him once when he had one and I was so scared I called the ambulance even though i knew what i needed to do while he was in seizure's.

Stress makes it worse.. or it did with him.I think it is unfortunate that your family can't be more loving and helpful when you need them to be...

I hope things work out for you. Just hang in there.. maybe there wil be a medication that will help you with your episodes and you can be more independent of them.

Wishing you the best! Faith

[(JD)]

I'm sorry this is happening to you! Yes, stress can make seizures worse and more often... perhaps moving away from them would help you in the long run. No one should have to make such a choice, but alas, many ppl do. Take care of yourself, and quit worrying about what they say or think. (I know, easier said than done.) I think that's in your best interest.

Maybe you can sign up (online) with many of the service dog organizations,and get one who will alert you to a seizure, and one who will stay with you and protect you during one!

[January]

Jennifer,

I'm so sorry this is happening. You have received excellent advice. You need to see your nuerologist and I highly recommend that you consult a t or pdoc. You need help getting through all this.

Hugs,

Jan

[wisewoman]

With all of the great responses above I wanted to add that not only does stress make seizures worse, but you are able to live a full and independent life. I wonder about speaking with Voc rehab and getting services so you have some daily help. I also wanted to add that seizures used to be called "fits" and people were very stigmatized by them. I am well versed in seizures and I would say that it is vital to have a very good neurologist, psychiatrist, casemanager and a therapist if you need. You do not deserve abuse.

((((((Jennifer)))))) Your family sounds horrible. It's so damn cold to treat you like that-it makes me mad to hear about it.

I hope you find a safe place to live with someone who doesn't mind being there for you and the doctors can find a medicine that'll help ease the seizures that are getting worst.