#life with non epileptic seizures

[honeycombhank]

I have suffered so much in life and feel again as if I have just been wasting my potential

Tomorrow I have plans to make steps towards a better life for myself.

6/17/24

[writtenroses1813]

Having both epilepsy and non epileptic psychogenic seizures is so crazy and exhausting. Like I can’t even be anxious in peace??? Damn.

[a-totally-reasonable-username]

Sensory issues and chronic pain = not knowing if you have a really low or really high pain tolerance because it could be either one

[chronicallyuniconic]

hey, maybe don't fake having a seizure, you have no idea what that is like & a med professional can tell you are faking, you are harming REAL seizure patients, by being a liar. Shame on you.

I can't believe that even needs to be said, but videos circulating are making me mad. Same level as someone who fakes pregnancy. Just don't

[drafty-castle]

Also? You can absolutely have both PTSD from one (or several) large event that causes the traditional symptoms and CPTSD that does not.

Another fun fact? If you’ve been running on survival mode for your entire life (CPTSD) and suddenly enter a safe environment, your brain may relax so much that it trauma dumps on you so hard you end up with something called Conversion Disorder. This is an umbrella term for when your brain provides symptoms for one thing when something completely different is wrong. Under that umbrella - and common enough for C/PTSD - are Non-Epoleptic Psychogenic Seizures. Literal seizure like activity - syncope/fainting, mental absents, full body convulsions - without the epileptic brain activity. Oh, and amnesia. Can’t forget that.

Why does this happen? Doctors don’t actually know. How can they cure it? They can’t. How do you treat it? Psychotherapy. What is the treatment prognosis? A greater than 60% failure rate.

I feel insane saying that. The doctors, the “experts”, for years recommending something that has such a high chance of doing fuck-all in the long run - something she’s been doing and that’s having no results. It’s like having consumption/tuberculosis before germ theory and medication - “have you considered going out to the country to get good air?” Sure, and should we balance her humors and invest in some leaches while we’re at it?

I’m not against therapy. I love therapy. I think it’s heaven sent for a lot of people. But she’s collected over 200 concussions due to this and has memory problems now and can’t actually remember that therapy sessions! Great advise, doc!

Folks have got to understand that they probably aren't messed up by some Secret Big Trauma that they just can't remember; but rather by a million tiny microtraumas that they do mostly remember but don't even register as traumatic because nobody actually understood that these things would cause trauma, much less stack on each other over the years.

[drafty-castle]

The only diagnosis we were ever given for this was Non-Elliptic Psychogenic Seizures - a form of conversion disorder caused by PTSD. My wife had been told to “do therapy about it” for three years now and otherwise left to collect concussions like Pokémon with no outside support. This, despite the fact that she had been in therapy long before these syncopal and convulsion episodes began, despite her having life-long low blood pressure, despite therapy only having a 40% percent effectiveness rate, despite her trauma therapist having no dammed clue how to help her with this.

Does anyone else experience this? Any ideas who we should turn to for help? We’ve gone through 4 neurologists at this point, some better than others (one who got her MD at the bottom of a cereal box, I swear to god). Her GP is supportive but way out of her depth here.

[exactlydifferentcherryblossom]

Caregiver/Daughter/Sister/Cat Mom/ Friend/ Learner

I am writing today to let others know they are not alone and that caregiver isn’t their identity.

I am 25 yr old and I am a caregiver for my dad, 52 yr old, with Parkinson’s Disease. I am also a Daughter for a 52 yr old ESE self contained middle school teacher. I’m also the sister of a 28 yr old bank teller.

Family life can be stressful on so many levels. My mom and my sister are also technically caregivers. They both have full time jobs, and I have a part time retail job due to Psychogenic Non epileptic Seizures caused by anxiety. My mom and sister are both diabetic and my sister has been diagnosed with depression and has not been very open to getting help with it.

I try my best to help make dinner and keep the house somewhat clean, even to the detriment of my own needs.

Sometimes I feel great that I am needed, but sometimes I feel neglected because I would like help too.

Binx, is my absolute joy in life. She’s a black cat with a white chest and white socks. She has the most vivid green eyes and long white whiskers. She is a cuddler and loves her food. (She will threaten my things on the shelf above my bed if I don’t get up early enough to feed her.) She’s so adorable and I couldn’t imagine my life without her.

I have a few close friends that support me and I support them as well. My best friend got into a relationship with someone about a year ago, that I’ve yet to meet. We used to discuss how dropping off the map when getting into a relationship sucked and that it wouldn’t happen. But, it has happened twice now. I sometimes feel like a placeholder until they get a significant other. I’m not really sure how to describe it because I don’t necessarily feel hurt by it, but sometimes I do think about it.

Also, I’d say I’m a learner because I love learning new things. I am going back to college to get my masters in librarianship and I can’t wait to see where it takes me.

Identities can fluctuate and change, so this is just a snapshot of who I feel I am at this point in time.

I hope that this reaches those who need to know they are not alone in their caregiving endeavors and that caregiving doesn’t define who they are!

[hazeltail]

I had what I think was an absent seizure around 2am. And I'm back on the medication for it and it still happened.

[itscharh]

Big studios diagnosing kids early.

This is not the kind of news we enjoy bringing. This is about the teaser trailer for Disney and Pixar’s Elio, which comes to theaters in March 2024, and is likely to be shown before showings of Elemental, which arrives in theaters this week.

After the narrator and on-screen caption say “In 2024″ (around the 15-second mark), there are 25 seconds of near-constant screen-glitching effects. While they are not as severe as the ones in the first trailer for Spider-Man: Across the Spider-Verse, or the trailer for Incredibles 2, they are still strong strobe effects, and they last for 25 of the trailer’s 128 seconds, almost nonstop.

The picture shown here is the first image shown in the trailer.

Image ID: a view of the Earth from space, with the moon in the foreground and the sun in the background.

[am-i-the-asshole-official]

Am I the asshole for being rude to my friend?

😾 - so I can recognise this

I am the organiser of the friend group. I don’t mind, but Somtimes I do struggle playing a large game of telephone.

I made some very last minute plans to go visit friend A with B, and forgot to tell C until this morning. Sometimes it’s hard for me to be the communicator and tell people what’s going on when.

I told C and appolagised for the short notice and invited him to come visit A with us.

C said he could come along, and asked if they should bring B and D’s stuff with him. I texted back ‘I don’t know, ask them?’

C seemed upset by this and said that they’d hang out by themselves that day.

Issue is - I had a seizure the day before. I have non epileptic seizures, and my brain was completely fried. Hence my fatigue and forgetfulness. I could just about manage yes or no questions, so I genuinely didn’t know. C has their number and Instagram so could ask B and D quite easily.

It’s the first time C has heard of my seizures as I tend not to discuss it openly and only tell people who live with me or look after me. I’ve been trying to be more open about it and to communicate my needs though.

C has left me on read after my explaination, and I feel like a right asshole. I feel like it was rude of me to text that to them. I explained why I was scrambled and said sorry. I am leaving it at that as I don’t want to pester them if they don’t want it, but I am also not a huge fan of the silent treatment.

It is worth noting that C is having a rough time at the moment and I am trying to be very gentle with them as I realise that life is tough for them.

We did used to have a group chat, but C left unprompted. I decided not to dig because it’s none of my business, but I do try to check in with them regularly to ensure they’re ok. It comes off as if they’re isolating themselves.

So. Tumblr - AITA?

[honeycombhank]

I wanted to work out, but as I looked for a pair of socks I began to wonder how a woman with 200 pairs of socks (I’ve never actually counted them lol) could somehow not be able to find even a single matching pair?

As I looked and looked it honestly became so frustrating, I was really starting to feel overwhelmed and then after FINALLY finding some, my brain was so overwhelmed and exhausted that I had lost all energy and motivation to workout and that was what I wanted to socks for in the first place, I know you are probably thinking why couldn’t I just give myself a good pep talk and go for it? Well it’s hard to explain how my brain doing what it was doing makes my whole body feel strange, but it does and so I was worried I might have a seizure and my frustration was hard to handle.. after I sat for awhile and my energy to workout felt completely depleted I decided to ask my partner if we could go out for a walk with our dog, nelly.

He said yes and we waited a bit for me to recover enough to go outside and then we walked 3.53 miles!

It was soooooo good to still get in some movement and exercise!

Nelly was so tired after our walk! lol poor baby

[writtenroses1813]

When it gets so bad that even the fake smile breaks…

[creative-caramel-coffee]

TIME FOR AN UPDATE

Ok I think it’s time I did some explaining…

Basically over the past few months I have been posting a lot less as many of you noticed. Now I am not leaving tumblr and probably won’t ever, but I was taking a break. On one hand I’ve had a lot of work for uni and some health issues.

As I’ve mentioned on here before I was recently diagnosed with POTS. In the months following my diagnosis we believed I had started to have non-epileptic seizures. Anywhere from 2-5+ a day sometimes more than 10. It was making it very hard to get work done let alone write fic and there were days I was unable to do anything due to me being extremely tired which isn’t normal for me.

When I first went to the hospital the doctor didn’t know what POTS was and as a result I was sent for test after test only to get no results. After I did some research on it myself after months of no answers. I realised POTS may explain it better than any theory the doctors had.

I also begun getting tics and it took me a while to be comfortable out in public again and in my classes which means I had fallen behind.

Now I’m booked in with my POTS specialist again for an appointment in a few weeks where I will hopefully get some answers.

Whilst it is rare to have seizure-like episodes with POTS it’s not unheard of.

What I guess the main point I have is, until I am able to manage my studies and health again and I have some ways to manage my POTS it’s unlikely I’ll be posting fic in the next few weeks. HOWEVER… I will be back to my writing once uni is done and I feel a bit better. I have only about one assignment left before I have to move out of my apartment and back home. So I’ll have more time then.

The other thing I want you guys to take away from this is that even though doctors know a lot they don’t always know everything and it’s important to do your own research and advocate for yourself because the person who knows what your going through best is yourself.

(Also the doctor was a major asshole who treated me like a child and kept implying I was just trying to get out of uni work)

Take care everyone and I should be back to my usual fics and shenanigans soon. Thank you to everyone who has stuck around despite my absence on here lately.

Again I’m NOT giving up writing I’m just trying to get my life back in order before I come back.

Drink water and take breaks my lovely people

-ccc

[heartnosekid]

hey friends, i wanted to share some things that are going on in my life right now. mostly for possible support, since it is really difficult going through this right now and i wonder if any of y’all have been through the same.

in july, i had three psychogenic non epileptic seizures (PNES) which required me to go to the hospital. they were caused by extreme nervous system stress, i.e. ptsd and panic attacks combined with the fact i was trying to self medicate with cbd and delta 8. super scary, never experienced a fear and strangeness like that before.

since then, i have had like. no full seizures but instances where i felt like i did before the onset of having the three in july.

i am now coming off cymbalta, the second SNRI i have had to come off in the last three years. i am experiencing pretty intense withdrawals and i was wondering if anyone else has had experience with cymbalta withdrawal as well and if anyone could tell me what their experience was like.

essentially my withdrawal symptoms are feeling similar to how the onset of the PNE seizures felt, and i am kind of just. i guess super scared. i have a support system IRL, but regardless of that, whenever i have these symptoms, i feel so alone and isolated. not necessarily in a lonely way, but in the way that i feel the extremest thing is going to happen and no one will be able to help me, if you know what i mean.

so yeah. i’m sorry to vent here, health problems have really been kicking my hind-end in recent years and now the seizures and withdrawals on top of it has really made things more complicated. and i wanted to know if anyone else has any similar experiences, because if someone has shared my experience, it will somehow calm me down. i will be responding to all comments left on this post btw.

as always, i love you all. very very much. if i miss any trigger tags on this post, please let me know and i will fix it accordingly.

- ish 💕

[chronicallyuniconic]

Genuinely worried about what these seizures are doing to my brain. What if each time I'm losing a little less until I'm not a person anymore. I'm so tired

[the-guilty-writer]

Spencer Reid Masterlist

Oneshots:

Spencer Reid x daughter!reader:

Lazy Genius: reader decides to skip a school assignment, and her dad isn't happy about it.

Statistics, Rubix Cubes, and Waiting Rooms: Your dad, Spencer, sits with you as you wait for your psychological testing to begin.

To Start: you and your dad, Spencer, talk on the way to your first therapy appointment.

Intoxicating Hurt: If anyone knows how intoxicating hurting can be, it’s Spencer Reid. If anyone knows that there’s a better way to take pain away, it’s Spencer Reid.

Big Day, Huh?: (child!reader) Spencer's autistic daughter has an eventful morning at the BAU.

I'd Better Ask Emily: When Spencer goes looking for your school notebook and accidentally reads your diary instead he goes to the BAU bisexual badass for help.

Death by a Thousand Cuts: After you hear about JJ's feelings towards your dad, you tell her the truth about how you feel about her too... and it's not friendly.

Crave and Courage: Spencer comes home from a case to find you torn between crave and courage.

No Matter What: Spencer helps his daughter with BPD through an anger breakdown.

Spencer Reid x teen!reader:

The Washington Tales: Spencer's busy schedule leaves you feeling lonely. You run away, finding company in an old friend.

You're Real: As you get deeper and deeper into a depersonalized state, your dad doesn’t need to ask- he already knows the best thing he can do for you.

Spencer Reid x reader:

Perfect Anyway: (GN!reader) Wounds don’t always heal perfect, but Spencer makes sure you know just how perfect you are.

Valid: After experiencing a non-epileptic seizure, Spencer refuses to leave your side.

We Need You That Way: (GN!reader) Spencer reminds dyslexic reader that they’re a valuable part of the team.

---

Series/Multipart:

Thirteen: (mostly platonic!reid) reader waits by the river and reflects on a time in their life filled with love, loss, and sacrifice. Completed (Part One)(Part Two)(Part Three)(Part Four)(Part Five)

The Happen Anthology: (Spencer Reid x daughter!reader) Spencer's daughter was kidnapped And then she was saved But what happened then effects what happens now.

---

Headcanons:

Spencer Reid x daughter!reader:

Getting an autism diagnosis

Helping you with your eating disorder (ft. Garcia)