r/Epilepsy_Universe

So last yearish I was at my neurologist and she used to work in the medical field with neurology in the military (this is very important). So she dealt with the head trauma stuff like that. And when she was reading my papers and I was telling her she looked me dead in my eyes 100% serious and said “i genuinely have no clue how your alive after all this”. I wasn’t offended at all more in like “damn that’s new” and shocked because no one has ever said that nor did I ever think it was.

But this isn’t the first time people have been shocked im still alive. I just have generalized epilepsy. I’ve been having grand mal seizures since I was like 3 thankfully they don’t happen often. It might be because I had a 10 minute long one and I fell backwards and bashed my head.

Idk i just wanted to say that because it’s kinda funny knowing I shocked someone/ several neurologist who worked with stronger people then I come in and poof

How was your weekend? How was your week last week? How are you doing today? I just want to be a close-knit community and make sure that everyone is feeling good here and overall. Weekly roll call time, how's it going? Any seizures, achievements, good news or bad news that you'd like some support for late? We as Moderators are here for you for you here at r/Epilepsy_Universe and any questions can be answered with a DM or modmail. I hope that you have not just a great day but a great week to come.

I don't really know how to write this without making it sound like I'm asking for sympathy so I'll just tell it as it happened

When I was 12 I had a bicycle accident and hit my head hard enough to black out

A man whose house I was lying outside saw me and brought me inside. When I came around I couldn't see properly but I could answer questions. He happened to know my father and called him

We went to the hospital and had an MRI and CT scan. Nothing unusual showed up so we didn't think much of it

Two years later when I was 14 things started getting strange

I started having what I eventually learned were aura seizures

They are difficult to explain because they weren't like simply passing out. They would begin with this overwhelming flood of emotions that I couldn't understand completely It felt like Fear, Guilt, Sadness, over sensation all wrapped Together. Then I'd get an intense feeling of deja vu about whatever was happening around me

Everything would feel like it had already happened

Then came this horrible sensation in my stomach followed by violent coughing and sometimes vomiting

I still remember the first one clearly

I was in 10th class during mathematics. We were learning geometry and suddenly i started feeling a massive wave of fear making my chest heavy. I looked at the teacher and had this incredibly strong feeling that he had already taught this exact thing before and the sensations on my skin felt like it had been turned to a 1000. My nose started feeling heavy and the tip aching in a weird way.

It was so intense that I couldn't sit upright. I put my head down on the desk trying to make it stop and then the coughing started

I ran to the washroom without even telling anyone what was happening

I ended up vomiting and ruining my uniform

As the seizures became more frequent I got good at hiding them

I would sweat like crazy but I learned how to sit through them and pretend everything was normal

But people noticed anyway

I had to stop swimming because of the seizures i loved swimming so much i could spend hours playing in the water. I became less social. Other students started giving me names like Sweaty Sam, Pukey Pande and sometimes would even ask me hey have seen me do this before.

I don't really blame them for not understanding what was happening

But it changed me

Over the years I became more and more confined to my house. I lost interest in a lot of the things I used to enjoy and became extremely introverted

One of the biggest things epilepsy took from me was freedom

I couldn't just decide to go somewhere by myself without thinking about what might happen

But I eventually learned something that made a huge difference

The buddy system

After 10th standard when I went to college I managed to find two friends who knew what I was dealing with

And honestly it didn't matter to them

Our vibes just matched

They didn't treat me like I was broken or like I needed to be kept away from everything. They simply knew what could happen and what they needed to do if it did

I would give almost anything for those two friends because they gave me something I desperately needed

A little bit of freedom

I learned that I didn't necessarily need someone watching me every second

I just needed at least one person with me who understood what was happening

Then i enrolled for architecture after 12th.

The sleepless nights made everything considerably worse

One day I was at home lying in bed playing Fortnite when I felt another seizure coming

By that point it was almost routine so I thought I'd just wait for it to pass

Except this time it didn't

It kept getting stronger

I started feeling like something was approaching me or standing just outside my peripheral vision. Whenever I tried to look at it directly it seemed to move further away

Then everything went black

My mother noticed something was wrong and came into my room

I was having a full grand mal seizure

She later showed me the video she had recorded while trying to keep me on my side. My heart just dropped that day thinking my Mom had to see me like that

I regained consciousness maybe 30 or 45 minutes later

Everything felt completely different

My mouth had this strange feeling, everything tasted a bit bland and tasteless that day and the sweatness of anything would feel really sharp and my head was pounding like hell

That eventually became one of the reasons I dropped out of architecture

At my worst I was having around two grand mal seizures a month along with aura seizures almost every week

And I've noticed a pattern that has been pretty consistent with me

I get the aura first

Then if I'm unlucky the aura turns into a grand mal seizure

That knowledge has actually helped me prepare for the possibility of one happening

Technology has helped too

I use the emergency information and emergency contact features on my Android phone

I've put my condition in the medical information section and written instructions about what people should and shouldn't do if they find me having a seizure

For example I specifically say not to put anything in my mouth and not to try to make me smell something a common belief in india to make the person having seizures smell a shoe sole or onion

I also have my parents and brother listed as emergency contacts so someone can get to them from my phone without needing to unlock it

On my Samsung phone I also have the SOS feature set up

If I'm alone somewhere and I feel a seizure coming I can trigger it and have my location sent to the people I need

Then I try to find somewhere safe and dry

It doesn't have to be somewhere comfortable

I've literally thought about the possibility of ending up on a sidewalk or on the floor of a shop

I just need somewhere where I'm less likely to hurt myself

I can then open the medical information section from the emergency screen and keep the phone somewhere visible while I wait for help

The biggest thing I've learned is that freedom doesn't always mean doing everything alone

Sometimes freedom means knowing that if something goes wrong there is a plan

Recently my doctors also gave me a rescue spray

I believe it's either diazepam or lorazepam but honestly I need to check which one it actually is

I'm supposed to use it when I feel the seizures starting

For me it basically knocks me out and the hope is that it stops the aura from progressing into a full grand mal seizure

That's something my doctors prescribed specifically for me so I'm not suggesting anyone else should do the same

It's just another part of the plan I've built around my condition

The funny thing is that through all of this there was one thing I never really lost

Computers

Being stuck at home meant my PC became my way of exploring the world when I couldn't really go out and do much else

Eventually I studied computer engineering and somehow managed to graduate with distinction and started worki g from home

The seizures haven't magically disappeared and my life isn't some inspirational movie where everything suddenly gets fixed

But something strange started happening about five months ago

I started having extremely vivid dreams

And I mean really vivid

Every two or three days I dream about things that are completely impossible

Entire situations and worlds that obviously couldn't exist but somehow felt incredibly real while I was in them

And unlike my normal dreams I started remembering almost all of them when I woke up. Today i was standing in middle of a collapsing building the earth shaking beneath me and i still made it out alive by running jumping dodging and parkour funny thing is i am not at all athletic.

At first I just thought it was weird then I started writing them down and eventually I thought why am I just letting these things disappear

So I started learning creative writing I'm still learning and I wouldn't call myself a writer yet but I'm trying I've started taking some of these dreams and turning them into actual stories

Then I discovered I could use the computer I've had for years to actually bring some of those ideas to life

I'm making images, experimenting with animation, editing everything myself and slowly turning some of these strange dreams into videos

I even started a YouTube channel for it for me it's just something I wanted to try I've spent a huge part of my life feeling like there were things I couldn't do

So now I'm trying to find things I can do Maybe these stories will go somewhere Maybe they won't

But at least the strange things happening inside my head are finally becoming something I can create instead of something I just have to live with

I think that's probably the biggest thing epilepsy has taught me you don't always get your old life back

Sometimes you have to figure out how to build a new version of it

I wanted to share my journey with this subreddit as over the years I have had so many doctors, neurologists, anger, near death experiences, and nobody would listen to me. This week I was proved correct and I feel the need to spread awareness and hope.

Before I begin; there is NO genetic history of epilepsy in my family, ZERO. I started having Absence seizures at the age of seven but nobody quite knew what was going on until we met with the first neurologist of many. Then we found out I was having at LEAST 250 absence seizures a day and he was worried about my life and brain damage because of this. My wonderful mother tried a million different seizure meds all of which had AWFUL side affects. You name it I have tried it; the week before my first ever period I had my first ever grand mal seizure. Obviously my parents were freaked out and rushed me to the hospital where they sent me to Mayo Clinic where I was in and out for the next 2 years. They tried a million different things and combos of meds until we landed on Ethosuximide and Lamotrigine at age 14-15 I believe. This stopped the seizures however the side affects of lamotrigine made me very depressed and not wanting to be here. But my neurologists said it was either this or I would die from a grand mal. So we did that for a few very hard years. At age 19 I had my own place with my fiance and one day I felt something change in my brain and body. I do not know how to describe it but my brain felt awake for the first time I could remember. I felt amazing and my gut told me the seizures were gone. Obviously just to be safe I kept taking my meds and scheduled to see my neurologist next month. He advised against stopping the meds of course but I wanted to try. I weaned off of them very slowly and for the next 4 years I never had a grand mal seizure. I watched fireworks and horror movies, stared at lights and had no seizures. At this point I realized my period stopped the same week the seizures did. Then 2 months ago my period came back and the week before it came back (my ovulation and estrogen spike week) I had 3 back to back grand mal seizures lasting 3 minutes each twice in that same week. I was rushed to ER and went to a million doctors almost yelling at them saying it’s connected to my ovulation and all of them said I was wrong. Nobody had EVER mentioned catamalenia epilepsy to me before until I saw a Reddit post here about it. Since then I have spoken to my new female neurologist and said if you do not help me I am getting a hysterectomy because I will not live to see 24 if you don’t. I am now on birth control and clobozam and I feel confident I will be seizure free from now on. If you are going through this, where the neurologist isn’t listening to you, where nobody is helping you, DO NOT STOP FIGHTING. You know your body they do not. Obviously always consult with your doctor first, but trust yourself first too. It IS possible. Thank you so much to this subreddit for saving my life. I love you guys and I love this community. If you have any questions please ask ❤️❤️

I have TLE and sometimes when I’m feeling emotionally heavy and like my head is going to explode, having a seizure actually feels like a way to clear my head. Anyone else experience this?
Having a tough week!

How was your weekend? How was your week last week? How are you doing today? I just want to be a close-knit community and make sure that everyone is feeling good here and overall. Weekly roll call time, how's it going? Any seizures, achievements, good news or bad news that you'd like some support for late? We as Moderators are here for you for you here at r/Epilepsy_Universe and any questions can be answered with a DM or modmail. I hope that you have not just a great day but a great week to come.

So I used to have another account and I posted several things on this Reddit community through that account. But considering that I don't have it, I thought I might reintroduce myself. My story began with my birth which ended up being a prenatal stroke. As a result, I had hemiplegia which basically means I have cerebral palsy in my left arm and partially in my left leg. when I reached the age of 10, My hormones began to kick in and thus I had my very first Grand mal seizure after which I have struggled with these on and off throughout the rest of my life. Luckily enough I had a great support group within my family. My father and I share the same bed as a buddy system so that if I end up having a seizure I can have someone by my side, My sister is always there to sit and talk to me whenever I am having auras, and my mother who is a nurse, specifically an RN helps me on a daily basis even after her twelve hour shifts. I also have a great support group with my neurologist and primary doctors. I have my share of problems from day to day but I manage. It's good to be here and listen to and talk to people and know that I am not alone.

“One supportive hypothesis proposes that ß-endorphins released during exercise inhibit epileptic discharges”. Numerous studies show no change, or even a decrease in seizure frequency during 4-12 week aerobic exercise programs. Clearly not enough studies done to reach a conclusion that influences our neurologists to encourage exercise as a treatment. Bummer. Anyone else want to document your own journey? Take notes on how our seizure frequency, severity corresponds to exercise (how often, what activity) and educate our own care team! Hoping if one of us takes this to our doctors, someone might get them proud of their patient and have a positive influence for someone else’s care! Epileptics will still manage greatness 🤗
 
https://www.sciencedirect.com/science/article/pii/S1525505010000181

Any opinion on shrooms an epilepsy? I’ve done them a few times before I got epilepsy. I was thinking of doing them again.

Sad but someone asked me, and now I’m asking all of you, he said that he’s went as far as packing up and planning an escape.

Long before I developed epilepsy I had some back issues and arthritis was getting worse, my pain dr suggested that I try floating. I read a little about the procedure and looked for a place near me. I found a float spa around 40 minutes from me, almost to Center City, Philly. I tried it and was hooked. It's similar to what I knew growing up as sensory deprivation tanks, except those were actual enclosed metal tubes that divers used to treat the bends. The spas now have private rooms, with a large tub.

Floating is a process where you fill the tub with a great amount of Epsom salts,in the case of the one I'm currently using, 1000lbs and water. The salt will keep you afloat, and in a weightless

I was away for almost a year and forgot how much good it had done for me. The following year, I was away for 3 months and there was a spa there and I would go every week.

Fast forward a few years and the seizures started.

Just recently a float spa opened in the town I live in. My wife made a deal with the owner for half price, and I'm going almost every week now.

But aside from pain relief, there's many other benefits including relieving stress and better sleep.

I have had a few week period where I am feeling a lot of stress. During every float the stress floats away, your entire body is engulfed with relaxation.

Try it if you can. It's great for your body.

I did but I'm curious about all of you here experience it and how'd that go for you.