Help Sleeping paralysis/HES = epilepsy?

[Flau]

So
ever since 2015 I've been dealing with a very specific condition. Something very similar to sleeping paralysis.



It happened as I took a nap during the day, i dozed off on my right side, I was a little bit sick (it was winter) and then i realized i could hear a sound that wasn't there at all. A hallucination of sort, as if a huge swarm of flies is swirling above my head. The sound waa so intense, i was sure it wasn't a dream, I knew i was awake but i couldn't move.



Later on I googled something called "sleeping paralysis" that sounded very similar, but not quite, since I didn't hallucinate visually, didn't see any ghosts and no demons were sitting on my chest.



Throughout the year it got progressively worse (mind I wasn't on any medication and wasn't diagnosed with anything special that time).

I couldn't sleep during the day/night at all. It would happen everytime i drift off to sleep. I get stuck in my own body for a couple of minutes, the sound is raping my ears, i can't move and such.



After 2-3 years it got EVEN WORSE.

Same symptoms but on top of that - constant and persistent migraines, photophobia, cataplexy (light version of it), hypersomnia for weeks and days of insomnia, forgetfulness, mood swings, it was hard for me to focus.



i went to countless specialists in my area: neurologists, psychotherapists, psychiatrists, therapists, i even went to oculists and such. I did numerous procedures and appointments, took a bunch of medecine, nothing helped, every doctor was just shrugging at me, saying: "umm... that's not uh... idk gurl thats hold on let me google that paralysis thing".



Until one day my new psychotherapist prescribed me pills called "Topiramate" (inhibitor medication used to treat epilepsy and prevent migraines).

I was told I needed to take it everyday, 1 pill one hour before sleep. So i did.

It did help, actually! I kept taking it and the symptoms went away, I felt way better. I've noticed that if one time i forget to take a pill - a fit happens.



Which kind of hinted me at something. What if it is actually epilepsy? Should I visit an epileptologist instead?

I told them my uncle had epilepsy for 7 years, my step grandpa died because of epilepsy.

That specialist nodded a couple of times, ultimately did nothing and I paid for no-thing.



Over these months of constant stress, anger and lack of rest/food the symptoms got way worse. I have no medication right now as my parents take it away from me, calling me a vegetable when i take em.



Nowadays i cannot sleep at all. The "seizure" happens daily as I transition into sleep. I feel like my body is being electrocuted, the current goes from my toes straight into my head as the sound gets louder. (The sound is random every time, could be a screaming voice, a train, flies, thunderclap, glitching sound). I cannot move and recently I just feel like my brain is about to explode.





WHICH brings us to a new study people did resently. "Head exploading syndrome". This video shows a very similar sound to what I experience, except for ticking that is



Apart from it just being scary as hell I just feel like I'm about to die. It gets worse, I feel fatigue, I can barely exist on daily basis as my muscles loose tonus.



Any of you experienced similar condition? If so, what helps you to treat it or avoid it? What provokes it?



((Also gotta mention that thanks to bitchy teens on tiktok and shizzle like that noone seems to take it seriously around here, so i dont know who should i talk to anymore))

 

[LostSoul1609]

So
ever since 2015 I've been dealing with a very specific condition. Something very similar to sleeping paralysis.



It happened as I took a nap during the day, i dozed off on my right side, I was a little bit sick (it was winter) and then i realized i could hear a sound that wasn't there at all. A hallucination of sort, as if a huge swarm of flies is swirling above my head. The sound waa so intense, i was sure it wasn't a dream, I knew i was awake but i couldn't move.



Later on I googled something called "sleeping paralysis" that sounded very similar, but not quite, since I didn't hallucinate visually, didn't see any ghosts and no demons were sitting on my chest.



Throughout the year it got progressively worse (mind I wasn't on any medication and wasn't diagnosed with anything special that time).

I couldn't sleep during the day/night at all. It would happen everytime i drift off to sleep. I get stuck in my own body for a couple of minutes, the sound is raping my ears, i can't move and such.



After 2-3 years it got EVEN WORSE.

Same symptoms but on top of that - constant and persistent migraines, photophobia, cataplexy (light version of it), hypersomnia for weeks and days of insomnia, forgetfulness, mood swings, it was hard for me to focus.



i went to countless specialists in my area: neurologists, psychotherapists, psychiatrists, therapists, i even went to oculists and such. I did numerous procedures and appointments, took a bunch of medecine, nothing helped, every doctor was just shrugging at me, saying: "umm... that's not uh... idk gurl thats hold on let me google that paralysis thing".



Until one day my new psychotherapist prescribed me pills called "Topiramate" (inhibitor medication used to treat epilepsy and prevent migraines).

I was told I needed to take it everyday, 1 pill one hour before sleep. So i did.

It did help, actually! I kept taking it and the symptoms went away, I felt way better. I've noticed that if one time i forget to take a pill - a fit happens.



Which kind of hinted me at something. What if it is actually epilepsy? Should I visit an epileptologist instead?

I told them my uncle had epilepsy for 7 years, my step grandpa died because of epilepsy.

That specialist nodded a couple of times, ultimately did nothing and I paid for no-thing.



Over these months of constant stress, anger and lack of rest/food the symptoms got way worse. I have no medication right now as my parents take it away from me, calling me a vegetable when i take em.



Nowadays i cannot sleep at all. The "seizure" happens daily as I transition into sleep. I feel like my body is being electrocuted, the current goes from my toes straight into my head as the sound gets louder. (The sound is random every time, could be a screaming voice, a train, flies, thunderclap, glitching sound). I cannot move and recently I just feel like my brain is about to explode.





WHICH brings us to a new study people did resently. "Head exploading syndrome". This video shows a very similar sound to what I experience, except for ticking that is



Apart from it just being scary as hell I just feel like I'm about to die. It gets worse, I feel fatigue, I can barely exist on daily basis as my muscles loose tonus.



Any of you experienced similar condition? If so, what helps you to treat it or avoid it? What provokes it?



((Also gotta mention that thanks to bitchy teens on tiktok and shizzle like that noone seems to take it seriously around here, so i dont know who should i talk to anymore))

Unfortunately I can't help with your condition as I haven't had similar experience, however I'm quite experienced with brainholed parents that think they have the right to take away medications. I would carry a small pillbox with me which was easy to hide.
If those medication are the only thing that helps you should go through with them.

Have you tried to ask second opinions on epilepsy? If you have family history of it it's very likely to be a form of that, it is also possible that it is getting worsened by anxiety and stress.

Wish you well ❤

 

[Quinlor]

I don't know, I believe you or your parents should get a second opinion about these meds of yours. I am shocked by your suffering, I wish you all the best!

 

[Midgardsorm]

I had sleep paralysis when I was a kid and there was a time that has been accompanied by hallucinations.

As I recall, your body cuts the movement of your muscles during sleep, when sleep paralysis occurs, you transition from the sleep state to a wake state but your body doesn't recover the muscle movement at the same time.
Even worse, you're actually still sleeping, so your subconscious still dreams which can result in hallucinations.

Really scary and more dangerous than it sounds. I'm surprised ( not much ) that the doctors didn't knew about this.

But what you said is even more worrisome. You have parents that suffered from epilepsy and even a parent that passed away because of it.
You should definitely see a epileptologist. You need to be careful. This is really dangerous and definitely unpleasant.

I wish you the best.
Be well.

 

[quakociaptockh2]

I got this, few times per month.

 

[OrcWitch]

I am sorry they are taking meds away, this sounds abusive. I wonder if the doctor that prescribed them could speak on your behalf?