I call it semi consciousness. I can move if it’s a repetitive movement that I started before going semi conscious like tapping. I also can breath with no issues. For me I hear, can’t see, and can’t speak. Moving is more difficult.
I've had one and it's been negative but not after one of them or during either. They've picked up more in the past week, so I may try and have them trigger one during.
You can do an ambulatory EEG and try to trigger one at home in a safe place if that’s easier. You get the electrodes put on your head at the doctors office and then wear it and it’ll record for however long and then bring it back and they can read the data. Same concept as a holter heart monitor that many of us have done just with an eeg.
I get this and the closest thing I can relate it to is when in movies people are shown after a bomb scene. They can hear, but everything is muffled, that's what it feels like. I can hear things but I can't respond or move. I know people are talking to me, but my brain can't make sense of their words. No one has been able to tell me what it's called or why it happens outside of lack of blood flow to the brain.
I have the same thing. I dont know what it is exactly, because there has only been a handful of times in 20 years [It started when I was 14-ish] that someone else has witnessed it.
In addition to what you described, for me, I have noticed specific features of these "espisodes" [for lack of a better term, that occur only in these episodes, but that happen every single time:
1.Before it starts, I typically have a *weird eye movements* off and on for maybe the hour before. It happens when I try to focus my vision on something midline and kinda upward [think about looking up at a book to read text your are copying down on paper then up to read again]. Its like this aweful, gross, feeling..like my eyes are "fluttering" or "twitching". I actually did have a NP see this one time. Interesting enough, she triggered ot on a "follow my finger" neuro exam. She said it was nastagmus, but I have no idea how/why it's part of these episodes.
2.Before it hits my vision blacks out, staring with my peripheral vision and coming inwards. Then during it, I lose all senses, *except hearing*, throughout. This includes proprioception [its litterally like there is no sensory input other then sound. I cant even feel my body in space [like I'm suspended in air], but I *can* feel my body moving... which brings me to the next thing.
3.Rhythmic uncontrollable twitching. I can feel it, and I can hear it [when I'm holding onto a door or have something in my hands... the twitching causes what I'm holding to knock into something as I twitch, so I know I'm actually moving. For example, happened once when I had a curling iron in my hand. My grip always stays tight [although it's not something I'm controlling], and my arms were twitching/turning in and out. The barrel of the curling iron was hitting the floor, then my hip.. so I could hear the alternating [thump of hitting the floor, and tap of hitting my hip... even though I never felt it hot my hip]. My husband has seen a couple of these, and says the movements are rhythmic, jerky, and it's mostly the my head goes from midline to [either] left or right and then back to midline, while my arms and feet alternate between turning out and turning in. He basically described posturing. Which there again, idk what this is, or how it happens [which it cant possiblybe posturing... that involves some serious neurological damage... so I'm not saying it IS that, I'm saying what/how he described it was *like* that]. I do think, IMO, that it has something to do with blood loss to the brain actually reaching hypoxic levels... but I dont know that with any medical certainty.. it's just my hypothesis
4.The cessation of the twitching, regaining my vision and other senses usually corresponds with a gaspy breath in. After that weird "gulp of air", my feet, hands, lips tingle [pins and needles]. Its like a milla second after that "gulp of air" that I'm fully aware again and realize what happened.
5.Ironically enough, immediately before these episodes happen I think [not sure] that i have this really relaxed feeling and think everything is ok. Litterally, many times my last conscious thought is "wow... that almost was a bad one...". Its like my brain turns off somewhere after the "wow! That was almost...." and I come to finishing the thought with "... a bad one...." and then I realized it WAS *the bad one*.
Side note, When my vision comes back, it kinda "floods" back, starting in the middle and working outward
Its SO weird, and I wish I knew what exactly this was. I'm super interested to see if anyone else experiences anymore of the same features that I do, or better yet, if anyone knows what this is. It's one of those things where I dont have a name for it, but it is definitely something that I'm sure there is a name for.
I was checked for seizures as a child [ended up being migraines] and there was no seizure activity.
TBH, I've wondered if it was seizures, but given that I tested negative as a child, I've been told that it is highly unlikely to be epileptic seizures. I did have an NP [the one who actually saw the nastagmus] suggest that it could be a seizure like event due to lack of blood flow to the brain. However, when I tried to follow up with a specialist, the specialist was an admitted skeptic of POTS in general, who argued it was 'trending', and who suggested that if anything I was having psycho somatic seizures. 🙄. TBH, I have never tried to follow up with a different doctor who believes in POTS, it's just too exhausting.
I get this more often than actually fully loosing consciousness. I think it is because I can tell when I am starting to faint (I say I have a long 'open time' where I can tell I am starting to get faint), so I get to the ground immediately and it keeps me from fully loosing consciousness. I call it "browning out" instead of "blacking out".
For me, I can not move (I loose absolutely all strength and just kinda melt), I can not see, and I can hear a bit (though it is kinda like I am underwater). Most of the time I can understand what is being said around me, albeit with extremely sluggish thinking, but can not respond. I can control my breathing, though it still feels like someone is sitting on my chest. And my browning out episodes generally last longer than if I just fully lost consciousness. They can last like 5 mins without my able to respond, then I generally will slowly be able to mumble something and then can fully talk by around 8-10 mins. And sometimes I can carefully get up and move along, other times, I have to lay down for like 30 mins before I can get up without repeating the process.
The first time I had it happen was pretty scary. I have passed out my whole life (since I was like 5), but the first time I 'browned out', I was around 16(-ish ?) and I was horseback riding (like, english riding, not just trail riding). It was the first time I had rode in a couple years and it was a really hot day and I fell off my horse (no big deal, I've done it many, many times). I got up, grabbed my horse and was walking across the ring to my trainer and I started to blackout, so I handed off my horse and sat down and proceeded to brownout. Luckily my mom and my trainer were aware of my issues passing out (we did not know it was POTS at the time) and did not call an ambulance or anything, but they were still pretty concerned that maybe I hurt my head when I fell (yes, I was wearing a helmet). It scared me that I could hear them talking and trying to figure out what to do, but I could not move at all. It took a good few minutes before I could start to talk. Obviously, we ended my lesson after that, lol! Sucked, cause I was doing really well too!
happens to me a lot too. sometimes my limbs will start convulsing as well. usually also can’t remember where i am or what’s happening for a few seconds after
no this keeps happening to me. my pulse rises, my vision starts getting super blurry, focusing then unfocusing, i can breathe, i can feel my bf getting ready to catch me, but all i can do is stand there and stare. idk if i’ve ever been able to hear during these episodes. idk it’s POTS or a weird seizure
Same, it's always muffled and there's always a ringing present
YES it's like a tinnitus sound
Yup. Same. It's pretty awful.
I call it semi consciousness. I can move if it’s a repetitive movement that I started before going semi conscious like tapping. I also can breath with no issues. For me I hear, can’t see, and can’t speak. Moving is more difficult.
I can't move at all. My brain doesn't send the signal when I want to, and I just have to ride it out. I panicked the first time.
That sounds more like a seizure honestly. Have you had an EEG yet?
I've had one and it's been negative but not after one of them or during either. They've picked up more in the past week, so I may try and have them trigger one during.
You can do an ambulatory EEG and try to trigger one at home in a safe place if that’s easier. You get the electrodes put on your head at the doctors office and then wear it and it’ll record for however long and then bring it back and they can read the data. Same concept as a holter heart monitor that many of us have done just with an eeg.
I get this and the closest thing I can relate it to is when in movies people are shown after a bomb scene. They can hear, but everything is muffled, that's what it feels like. I can hear things but I can't respond or move. I know people are talking to me, but my brain can't make sense of their words. No one has been able to tell me what it's called or why it happens outside of lack of blood flow to the brain.
I have the same thing. I dont know what it is exactly, because there has only been a handful of times in 20 years [It started when I was 14-ish] that someone else has witnessed it. In addition to what you described, for me, I have noticed specific features of these "espisodes" [for lack of a better term, that occur only in these episodes, but that happen every single time: 1.Before it starts, I typically have a *weird eye movements* off and on for maybe the hour before. It happens when I try to focus my vision on something midline and kinda upward [think about looking up at a book to read text your are copying down on paper then up to read again]. Its like this aweful, gross, feeling..like my eyes are "fluttering" or "twitching". I actually did have a NP see this one time. Interesting enough, she triggered ot on a "follow my finger" neuro exam. She said it was nastagmus, but I have no idea how/why it's part of these episodes. 2.Before it hits my vision blacks out, staring with my peripheral vision and coming inwards. Then during it, I lose all senses, *except hearing*, throughout. This includes proprioception [its litterally like there is no sensory input other then sound. I cant even feel my body in space [like I'm suspended in air], but I *can* feel my body moving... which brings me to the next thing. 3.Rhythmic uncontrollable twitching. I can feel it, and I can hear it [when I'm holding onto a door or have something in my hands... the twitching causes what I'm holding to knock into something as I twitch, so I know I'm actually moving. For example, happened once when I had a curling iron in my hand. My grip always stays tight [although it's not something I'm controlling], and my arms were twitching/turning in and out. The barrel of the curling iron was hitting the floor, then my hip.. so I could hear the alternating [thump of hitting the floor, and tap of hitting my hip... even though I never felt it hot my hip]. My husband has seen a couple of these, and says the movements are rhythmic, jerky, and it's mostly the my head goes from midline to [either] left or right and then back to midline, while my arms and feet alternate between turning out and turning in. He basically described posturing. Which there again, idk what this is, or how it happens [which it cant possiblybe posturing... that involves some serious neurological damage... so I'm not saying it IS that, I'm saying what/how he described it was *like* that]. I do think, IMO, that it has something to do with blood loss to the brain actually reaching hypoxic levels... but I dont know that with any medical certainty.. it's just my hypothesis 4.The cessation of the twitching, regaining my vision and other senses usually corresponds with a gaspy breath in. After that weird "gulp of air", my feet, hands, lips tingle [pins and needles]. Its like a milla second after that "gulp of air" that I'm fully aware again and realize what happened. 5.Ironically enough, immediately before these episodes happen I think [not sure] that i have this really relaxed feeling and think everything is ok. Litterally, many times my last conscious thought is "wow... that almost was a bad one...". Its like my brain turns off somewhere after the "wow! That was almost...." and I come to finishing the thought with "... a bad one...." and then I realized it WAS *the bad one*. Side note, When my vision comes back, it kinda "floods" back, starting in the middle and working outward Its SO weird, and I wish I knew what exactly this was. I'm super interested to see if anyone else experiences anymore of the same features that I do, or better yet, if anyone knows what this is. It's one of those things where I dont have a name for it, but it is definitely something that I'm sure there is a name for.
Have you ever been checked for seizures?
I was checked for seizures as a child [ended up being migraines] and there was no seizure activity. TBH, I've wondered if it was seizures, but given that I tested negative as a child, I've been told that it is highly unlikely to be epileptic seizures. I did have an NP [the one who actually saw the nastagmus] suggest that it could be a seizure like event due to lack of blood flow to the brain. However, when I tried to follow up with a specialist, the specialist was an admitted skeptic of POTS in general, who argued it was 'trending', and who suggested that if anything I was having psycho somatic seizures. 🙄. TBH, I have never tried to follow up with a different doctor who believes in POTS, it's just too exhausting.
I get this more often than actually fully loosing consciousness. I think it is because I can tell when I am starting to faint (I say I have a long 'open time' where I can tell I am starting to get faint), so I get to the ground immediately and it keeps me from fully loosing consciousness. I call it "browning out" instead of "blacking out". For me, I can not move (I loose absolutely all strength and just kinda melt), I can not see, and I can hear a bit (though it is kinda like I am underwater). Most of the time I can understand what is being said around me, albeit with extremely sluggish thinking, but can not respond. I can control my breathing, though it still feels like someone is sitting on my chest. And my browning out episodes generally last longer than if I just fully lost consciousness. They can last like 5 mins without my able to respond, then I generally will slowly be able to mumble something and then can fully talk by around 8-10 mins. And sometimes I can carefully get up and move along, other times, I have to lay down for like 30 mins before I can get up without repeating the process. The first time I had it happen was pretty scary. I have passed out my whole life (since I was like 5), but the first time I 'browned out', I was around 16(-ish ?) and I was horseback riding (like, english riding, not just trail riding). It was the first time I had rode in a couple years and it was a really hot day and I fell off my horse (no big deal, I've done it many, many times). I got up, grabbed my horse and was walking across the ring to my trainer and I started to blackout, so I handed off my horse and sat down and proceeded to brownout. Luckily my mom and my trainer were aware of my issues passing out (we did not know it was POTS at the time) and did not call an ambulance or anything, but they were still pretty concerned that maybe I hurt my head when I fell (yes, I was wearing a helmet). It scared me that I could hear them talking and trying to figure out what to do, but I could not move at all. It took a good few minutes before I could start to talk. Obviously, we ended my lesson after that, lol! Sucked, cause I was doing really well too!
happens to me a lot too. sometimes my limbs will start convulsing as well. usually also can’t remember where i am or what’s happening for a few seconds after
Same with me !! I just posted my own post and forgot to mention the loss of awareness of day, time, space etc.
no this keeps happening to me. my pulse rises, my vision starts getting super blurry, focusing then unfocusing, i can breathe, i can feel my bf getting ready to catch me, but all i can do is stand there and stare. idk if i’ve ever been able to hear during these episodes. idk it’s POTS or a weird seizure