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My story

Sun, 10/21/2018 - 08:25
I feel massively depressed today, so I thought maybe just trying to type out something I don’t understand, to people who may, might help. My first ‘episode’ was in 2007, I worked for an insurance company and I’d got back from lunch and all of a sudden I had no clue where I was or what I was doing, people told me I just kept walking around the office and ignored them. Looking back at it, this was a very stressful period in my life. I had anxiety/depression (diagnosed in 1999) which, ultimately, saw me lose my job in 2003 and my house (which I still haven’t got over) I moved in with my grandmother, who was diagnosed with dementia and things could get difficult. Where I worked was sales oriented, so there was a lot of pressure and I had a Mother with chronic depression & an alcoholic boyfriend, who could only turn to me for any problem. I think ultimately, all of that combined possibly ‘triggered’ episodes I met with my mother in a restaurant and she saw my eyes roll into the back of my head and I fell backwards off the chair. Round a friends house I had a seizure, she witnessed me shaking & eyes rolled back into my head, all I remember is a lot of vomiting and a lot more shame Incidents like this were very rare, at the time I’d say maybe three a year? Fast forward to today and I’d say I’m on a few a week, starts off as this horrendous wave a feeling of dread/anguish in my stomach that then spreads up through my body, giving me deja vu symptoms, nausea, don’t know where I am or who anyone is. Sometimes the wave from stomach, doesn’t completely engulf me & I can ‘escape’ it, with just slight confusion, nausea. The other week I had about 8 of these in one days and I’m sorry to say I was left feeling very suicidal, care I’ve been given through doctors on that front has been great, I’m pleased to say 2 days ago I had a bad one while eating food (it’s happened a few times while eating, possibly a trigger) since then it’s left me very depressed as everything is disjointed and nothing in the world seems or feels the same, my own home seems foreign to me and there’s a massive feeling of emotion in me and I don’t know why I’m scared to leave the house, in my confusion I’ve been hit by a car, as I couldn’t tell which were parked and which were moving, it was going VERY slowly, so sounds more dramatic than it is. I’ve fallen in the street, fallen down stairs and I’m just at the point at 38 years old where I’m scared to leave my own front door Since my first seizure, I’m very much alone, my grandmother, mother & alcoholic boyfriend have all since passed away. Thankfully, my father, stepmother & some close friends have been there for me and continue to keep me going Specialist believes it’s temporal lobe epilepsy and after looking into that, I agree. They did an EEG which came back fine, but as I live on my own capturing these episodes aren’t easy Well that’s me bored everyone to death, I try to just take it day by day, so it doesn’t set the depression etc off, but sometimes it’s too overpowering and it all just gets to me I’m hoping this horrible disjointed/uncomfortable feeling will soon pass and I can feel a bit more relaxed

Comments

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Hi Darren1980.Reading your

Submitted by jblfavre on Mon, 2018-10-29 - 17:50
Hi Darren1980.Reading your story is exactly like I'm listening to my daughter, Jo. I am really sorry you're experiencing so many awful symptoms and feeling depressed is a very understandable reaction.  Do you have access to any support groups, either in person or online?  Jo spent the first several years after diagnosis (at age 16) going thru the classic 5 stages of grief - not necessarily in sequence, and revisiting some, especially anger, repeatedly.  She found a local support group which meets monthly and that has been extremely helpful to her.Are you under the care of a neurologist? taking any meds?  Jo's had some success with a couple of meds, has tamped down the TC sz for the most part, but she has a lot of 'activity' and the associated fallout.  Her neuro and his staff is a major support for her and helps her feel less isolated and helpless.I hope you are able to get some effective help.  Keep reaching out and don't give in to despair - challenging, I know.  Cheers, Julia

Hi @Darren1980 I'm so sorry

Submitted by MalWill on Fri, 2018-11-02 - 16:02
Hi @Darren1980 I'm so sorry to hear about all of the terrible things that you've experienced. I certainly know the feeling as I was in your state not long ago (depression, suicidal, afraid). I've purchased the Embrace Watch by Empatica. It detects convulsive movements then notifies my caregivers via text or call, that I seized. It also sends my exact gps location. This has been a lifesaver for me. I now can do things on my own, walk my dog, go to the store and do things without the fear of seizing. The cautious side of me still walks by grass or makes sure that everyone understands my condition and can help if needed. I also was taking Keppra when I was depressed and it made matters worse. I was going to end my life until my neurologist made me promise not to harm myself. I never break promises. For me, being happy just took constant work to turn from negative to positive, fearful to fearless. I changed my mindset and took control of my life. You can do it too. I believe you can. I will pray for you. xoxo, Malory

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