Just Saw It. Interesting film


I watched this film on Netflix.

It was a very strange film on a personal level.

I have epilepsy. Luckily it is controlled with medication. Some of the stories and experiences are slightly similar to my own condition but a lot of them are way off from what I experienced. The film sort of played out like a dramatization of a neurological condition.

1) The links between common words.
This is quite common in my condition. After a petit mal or grand mal seizure I would have very very similar experiences. Right after its over, you would look at something, an object or something, and it's something really really basic, like for instance a yellow object, and you look at the color "yellow" and you know what it is that you are looking at but you can't figure out how to say the word "yellow". But you know what it is. It's a very strange experience.

2) Visuals.
In my case there is no issues with vision. But the trippy alternate reality would happen when I had a grand mal -- just before it starts and also just after it finished. It would be like you have entered through some sort of strange reality and you are outside yourself looking back at yourself and everything in the room and everyone in the room. If feels like it lasts for hours and hours but it actually only lasts about a minute. I taught myself later on to look at my watch and keep an eye on it and try to write down the exact hour and minute. After it ends, you look back at the time you realize only 2 minutes have passed. It's a very strange experience.

My condition affects my hearing and the sense of smell. When I was first getting epilepsy and I didn't know that I was getting it I would constantly go through these episodes where I would smell strange smells like rotting vegetation. I would be walking round in the middle of the city in smog, or be in the subway, or at a club and all of a sudden I would smell this strange freshly cut damp rotting grass smell. And I would look around trying to figure out where it's coming from.

I would also hear this strange metallic grinding clanking noise. The noise it impossible to describe. It's a sound like its very very familiar to you and you know intimately what it is but you can't find the right words to describe it properly. It start off really quiet and gradually keeps getting louder and louder and either culminates in a grand mal where you pass out or it just subsides and everything goes away. Some call it auras. Some call it seizures. My neurologist claims there is no such thing as auras. They are all seizures of different intensities. His words. Not mine.

As far as my opinion of the film. It was a well done documentary. It's a little odd because I felt like it was a bit over the top dramatization of what it's really like to have a neurological condition. As I said, I never had a stroke and I have epilepsy and I know that everyone has different degrees of the condition and everyone's experiences are very different who have it. I found it a little over the top that the symptoms would manifest themselves with someone seeing extreme color imbalance and almost fractals in their vision. But I guess it's possible. Best of luck to the person who is going through it.

Anyways. Luckily my condition is controlled by medicine. But thought I would share with others just for the hell of it and let them know this stuff really does exist in real life. :-)




Can this really be the end..to be stuck inside of mobile
with the Memphis blues again.

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Wow its cool to hear from someone who really experienced these things. ( not cool that u have to go through this) but its good to hear from someone else that these things really do happen. Its very interesting to me. It just sounds so scary. I would hate to have that happen to me.

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The thing that isn't cool about it is that it's not all just visual and auditory. A grand mal also may affect muscles and body functions. One possible worst case scenario is all the muscles on one part of the body would stiff up solid like a rock and the person would fall down to the ground and possibly hit their head on concrete or something and get very badly injured. You won't know that it happened until after the seizure has passed and you would have to deal with the consequences of the injury.

The other really bad one is the slight remote chance of SUDEP. Basically, thats when you don't ever come back from the seizure.




Can this really be the end..to be stuck inside of mobile
with the Memphis blues again.

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: o That is so scary! I couldn't imagine going through that. The things the mind and body can do to you is crazy. Thank you for sharing.

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There is nothing to be scared about. I have been living with it for 30 years. Statistically speaking, you have a much much greater chance of dying from going on a highway or freeway and getting into a car accident than you do from dying from SUDEP. So its sort of pointless worrying about SUDEP.

You just keep moving ahead and living your life as normal. I live in the burbs, have a family, two children, go on vacations, cut grass on weekends and regularly go running in parks and neighborhood three to four times a week. I am just a regular middle aged guy who works in the city and lives in the suburbs like everyone else around me. I just have a seizure disorder and take pills. I am sure other people have different medical conditions and take different pills. Just because you have a seizure disorder does not mean you have to hide indoors and live like a hermit.

The bright side of having a seizure disorder is it makes you take a little bit better care of your self because you already know you have a disorder. So you don't do things like excessive drinking of alcohol or drugs or high risk things like rock climbing. A lot of my uncles sort of died from liver and heart problems because of drinking too much alcohol (according to my aunts anyway). So the seizure disorder sort of prevents me from going down that same route.





Can this really be the end..to be stuck inside of mobile
with the Memphis blues again.

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I'm 33 and I have Transient Ischemic Attacks. I had my first one in 9th grade at school. To tell it from the start it was the most bizarre experience. That I was capable of completely losing my ability to form words that made sense just felt.. it felt almost sacrilege. Like something that isn't possible.
When I think of consciousness, normal consciousness, I base it off someone who finished high school with above average grades. this normality is someone who can think about things and express those things. My first TIA lasted for hours... now the attacks change. It was amazing that I couldn't speak, I couldn't see well, I was very confused, and I was having a great deal of pain (the worst headache ever) and pain that would come and go up and down my left arm. Some of the worst pain besides that was my cheeks were numb and stingy and my tongue felt like no blood was getting to it. But, yet, I was able to hold myself up in my chair and sit. I tried to speak up but for whatever reason stayed quiet, didn't try to attract attention. I made it down to my next class.. and finally asked to go to the nurse. Nothing unusual happened as by this time speaking was coming back.. but my aunt picked me up.. I went home. Fell asleep for two hours and when I woke up all I had was the splitting headache. I could speak and think and describe and see without having blindspots and rainbow prisms.

I can induce a TIA by drinking red wine or almost any kind of black coffee. Aspirin is also a no no.. it has the worst effect on me.

Stress seems to be a real factor in my TIA.. but it might be days after being stressed that the TIA will happen. I've went a whole year without having a major one before. And then I've had it happen again within weeks or sometimes within days. Sometimes if I'm very physically active it happens. I chalk it up to blood rushing to my head.

There is not much they can do about it. I'm so young and the insurance (these things use scans that are so expensive) have been really blocks I've had to get around. Because I can describe the process so vividly I've often had doctors not trust me. Weird that.

I had one in March of 2015 I didn't think I'd survive. I can always tell the difference between a regular headache and a TIA headache or complex migraine as some people experience it.
So I tried to write a letter to my family telling them that I loved them, etc. I wrote the letter and when I slept and started to recover.. days after when I was fine I read the letter and it didn't make any sense. I saved the letter and It gives me a good laugh. I knew what I wanted to tell them.. but as I wrote it, it was just as Lotje said.. *beep*

The thing about the film that really bothered me was that more than anything that scares me during my TIA's the PAIN is the most incredible thing. That I can experience so much pain during a TIA is just so hard for me to fathom.
Doesn't seem like Lotje had a lot of pain even with her fits after her stroke.
Besides the weird prisms I see mostly out of the right eye.. there isn't anything beautiful about TIA. It's so scary. I fear one day I'll have one and I won't be able to speak.

It's that loneliness. The fact you're experiencing something so rare and you can't explain it to anyone who hasn't had it. Also after each one I do lose things.. like vocabulary, memory, short-term memory is the worst. I'll have an idea and it's gone. I used to be one of the biggest trivia buffs. I no longer remember all the little things that made me so smart at trivia. I used to speak spanish and write latin.. and all that is gone.
Learning new things is so hard. I feel like I'm unable to learn anything like a skill that is new.. and what I do know i need to hold onto with both hands.

It's affected my religious beliefs in ways. Because religion involves a lot of thinking.. when I'm having a TIA I just pray.. but I am in a place so beyond religion, I think. I'm just an organism fighting to get my abilities to "organize" back. That's all I can do. That's all I am at that time. But I do thank God I haven't had a major one in public.. well I have.. but not like in transit from a bus or in a shopping center or staying at a friends house.. or during a major event. But to be honest I've really limited what I do.. how far i go. And if I do go far I always carry a note I can hand to someone to get me help.

I didn't want to watch this movie because the subject isnt something I like to dwell on.. as my TIA's are unpredictable.

But I am glad she is telling her story and I am glad that people like me who don't hear these stories can relate.

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The film is very fascinating. The girl (aside from her mole) is very cute and adorable.

But it's not very cohesive and her faults are not explained very well at all or just glossed over entirely never to be mentioned again.

They seemed to focus very heavily on the fact that she couldn't talk or read well, but she seemed to do just fine in her many selfie videos. She can't find the right word sometimes, but hell, she spoke better than a lot of other people in the video. It was pretty bad in the very beginning, but after the first couple weeks, it was pretty good.

She also had trouble with writing, but never explained what her trouble was.

They also mentioned (I think her brother) that she was rendered basically unable to do math at all. But then never mentioned it again whatsoever. She could still talk well and read (albeit slowly), if math was that bad, why wasn't that rehabbed and/or why didn't they show it?

Don't take the criticisms to mean I hated it, it was still fascinating, but I thought it could have been presented much better.

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