I grew up saying episode (started getting symptoms at 12, diagnosed at 24) but the last few years it’s been flare because I have more symptoms now and it just seems to fit
I have explained POTS in depth enough to most of my friends, colleagues and family that I just say stuff like "my nervous system is really trying to F me up today" or "my nervous system wants to go on strike again."
Usually I describe the particular symptom if I'm trying to be serious. I'm nauseated, overheated, dizzy, fatigued, etc. because what happens during an "episode" can vary widely. "My heart thinks we're doing a 5k right now" is another thing I say often. I sometimes call POTS "brain need blood disease" to my friends and one of my best friends will ask "brain need blood?" when they think I'm having a bad time.
I use that straightforward "episode" or "event" for individual events with orthostatic cause, and then explain how those happen and present to other people..
Sometimes I have to run through it quite a few times.
Then it's "flares" for those prolonged periods of heightened likelihood of episodes or events, with or without worse symptoms or a few extra symptoms that don't resolve when lying down.
Things like a sense of motion sickness or nausea or even brain fog. At the moment, post covid and in full flare, they're not just not going away like they were a month ago.
Most of my non-syncope related episodes typically come with “adrenalin” dumps so I refer to them as that, dumps. The looks we get when a friend in public asks if I’m “having a dump” in public is also hysterical
I passed out the other day in front of my lawn care guy, and trying to explain it was WORSE than hitting the floor in front of him. I tried to say “it’s just something that happens”, and “I have a condition & this happens sometimes”, but he was freaked out. I call them black out spells sometimes. When I stand up, EVERY TIME I see black and have to grab something. That time I had been standing for probably 30 minutes outside, and I guess it was just too much. But I say black out spells, or episodes. It’s easiest lol.
"It's normal! I mean, it isn't supposed to be normal. But I swear it's normal and I'm fine." literally all the time.
At the airport a couple months ago, I was standing on the hot jet bridge and started getting pre-syncope feelings. I crouched down real fast and the woman in front of me was like "hey are you ok???" and I was like "oh yeah I just felt like I was gonna pass out but it's normal. Don't worry." She looked at me like I was nuts and my mother in law went "it's normal for her. it's not *supposed* to be normal but she's fine."
It’s crazy how it’s OUR normal. I remember thinking EVERYONE saw black or almost dropped to the floor every time they stood up when I was younger lol.
But I’ve learned my lesson. I’m no longer going to stand and lean on something when that feeling comes lol. I need to start dropping to the ground before my body does it for me.
I say I’m having a “bad POTS day” if I’m headachey , fatigued etc or a “POTS attack “ if symptoms come on suddenly, because it feels like what I imagine a heart attack would be like !
Non-epileptic seizures are the medically accurate term but if it helps I’ve instructed my friends and family to inform medical personnel that I have non-epileptic seizures due to POTS. In our day to day life we just call them seizures since that’s what they are but in an emergency they know to relay the seizures are non-epileptic so they don’t give me the same meds they’d give a patient with epilepsy.
I’m also trying to find the right language to use for my daughter. She does have epilepsy as well but she’s been having what her Dr and I think could be POTS related symptoms not always seizures so when she’s walking and starts to feel off/near collapse I have called it a spell. I think she reacts better to the word because she gets bad anxiety, too.
I usually just call it an episode. I can have POTS flare ups without having an episode, so I don't use these terms interchangeably. Seizure is definitely misleading and I don't really think this term should be used tbh. If you want a medically accurate term you could use pre-syncope episode, but family and friends might not understand this. It would be a good way to explain it to medical professionals though
Here is an analogy from ChatGTP: a PoTS blackout can be compared to a sudden power outage in a city. Just as a power outage causes a temporary loss of electricity, a PoTS blackout leads to a temporary loss of consciousness and postural control due to decreased blood flow to the brain.
For more detail:
Power interruption: Imagine a bustling city with lights, appliances, and electronics operating normally. Suddenly, there is a power outage, and everything goes dark. Similarly, during a PoTS blackout, an individual may be going about their daily activities, and suddenly they experience a loss of consciousness, resulting in a brief blackout.
Loss of functionality: When a power outage occurs, all the electrical devices and systems in the city stop functioning. Traffic lights go off, elevators stop, and electronic devices become unresponsive. Similarly, during a PoTS blackout, the individual loses control over their body and experiences a temporary loss of consciousness, leading to a loss of functionality and inability to maintain posture or stay upright.
Temporary disruption: Power outages are usually temporary, and after a period of time, the electricity is restored, and everything returns to normal. Similarly, in a PoTS blackout, the loss of consciousness is usually temporary, lasting for a few seconds to a few minutes. The person eventually regains consciousness, although they may feel disoriented or weak afterward.
Potential consequences: During a power outage, there can be consequences such as disrupted daily routines, inconvenience, and potential risks due to darkness or malfunctioning systems. Similarly, a PoTS blackout can have consequences like an increased risk of falls or injuries, disrupted activities, and potential limitations in daily life.
I just use syncope, and pre-syncope. I also live with two former nurses. My partner doesn't really call them anything, he just catches me when I go down lol
I grew up saying episode (started getting symptoms at 12, diagnosed at 24) but the last few years it’s been flare because I have more symptoms now and it just seems to fit
I have explained POTS in depth enough to most of my friends, colleagues and family that I just say stuff like "my nervous system is really trying to F me up today" or "my nervous system wants to go on strike again." Usually I describe the particular symptom if I'm trying to be serious. I'm nauseated, overheated, dizzy, fatigued, etc. because what happens during an "episode" can vary widely. "My heart thinks we're doing a 5k right now" is another thing I say often. I sometimes call POTS "brain need blood disease" to my friends and one of my best friends will ask "brain need blood?" when they think I'm having a bad time.
I use that straightforward "episode" or "event" for individual events with orthostatic cause, and then explain how those happen and present to other people.. Sometimes I have to run through it quite a few times. Then it's "flares" for those prolonged periods of heightened likelihood of episodes or events, with or without worse symptoms or a few extra symptoms that don't resolve when lying down. Things like a sense of motion sickness or nausea or even brain fog. At the moment, post covid and in full flare, they're not just not going away like they were a month ago.
Most of my non-syncope related episodes typically come with “adrenalin” dumps so I refer to them as that, dumps. The looks we get when a friend in public asks if I’m “having a dump” in public is also hysterical
My significant other just says an episode. I call it an episode. lol we honestly don’t know what to call them episodes just sound simple
I passed out the other day in front of my lawn care guy, and trying to explain it was WORSE than hitting the floor in front of him. I tried to say “it’s just something that happens”, and “I have a condition & this happens sometimes”, but he was freaked out. I call them black out spells sometimes. When I stand up, EVERY TIME I see black and have to grab something. That time I had been standing for probably 30 minutes outside, and I guess it was just too much. But I say black out spells, or episodes. It’s easiest lol.
"It's normal! I mean, it isn't supposed to be normal. But I swear it's normal and I'm fine." literally all the time. At the airport a couple months ago, I was standing on the hot jet bridge and started getting pre-syncope feelings. I crouched down real fast and the woman in front of me was like "hey are you ok???" and I was like "oh yeah I just felt like I was gonna pass out but it's normal. Don't worry." She looked at me like I was nuts and my mother in law went "it's normal for her. it's not *supposed* to be normal but she's fine."
It’s crazy how it’s OUR normal. I remember thinking EVERYONE saw black or almost dropped to the floor every time they stood up when I was younger lol. But I’ve learned my lesson. I’m no longer going to stand and lean on something when that feeling comes lol. I need to start dropping to the ground before my body does it for me.
I say I’m having a “bad POTS day” if I’m headachey , fatigued etc or a “POTS attack “ if symptoms come on suddenly, because it feels like what I imagine a heart attack would be like !
Non-epileptic seizures are the medically accurate term but if it helps I’ve instructed my friends and family to inform medical personnel that I have non-epileptic seizures due to POTS. In our day to day life we just call them seizures since that’s what they are but in an emergency they know to relay the seizures are non-epileptic so they don’t give me the same meds they’d give a patient with epilepsy.
you still have family & friends?
I’m also trying to find the right language to use for my daughter. She does have epilepsy as well but she’s been having what her Dr and I think could be POTS related symptoms not always seizures so when she’s walking and starts to feel off/near collapse I have called it a spell. I think she reacts better to the word because she gets bad anxiety, too.
I usually just call it an episode. I can have POTS flare ups without having an episode, so I don't use these terms interchangeably. Seizure is definitely misleading and I don't really think this term should be used tbh. If you want a medically accurate term you could use pre-syncope episode, but family and friends might not understand this. It would be a good way to explain it to medical professionals though
When a sudden thing happens, I call it a crash. When it's a prolonged presentation of worsened symptoms, I call it a flare
Here is an analogy from ChatGTP: a PoTS blackout can be compared to a sudden power outage in a city. Just as a power outage causes a temporary loss of electricity, a PoTS blackout leads to a temporary loss of consciousness and postural control due to decreased blood flow to the brain. For more detail: Power interruption: Imagine a bustling city with lights, appliances, and electronics operating normally. Suddenly, there is a power outage, and everything goes dark. Similarly, during a PoTS blackout, an individual may be going about their daily activities, and suddenly they experience a loss of consciousness, resulting in a brief blackout. Loss of functionality: When a power outage occurs, all the electrical devices and systems in the city stop functioning. Traffic lights go off, elevators stop, and electronic devices become unresponsive. Similarly, during a PoTS blackout, the individual loses control over their body and experiences a temporary loss of consciousness, leading to a loss of functionality and inability to maintain posture or stay upright. Temporary disruption: Power outages are usually temporary, and after a period of time, the electricity is restored, and everything returns to normal. Similarly, in a PoTS blackout, the loss of consciousness is usually temporary, lasting for a few seconds to a few minutes. The person eventually regains consciousness, although they may feel disoriented or weak afterward. Potential consequences: During a power outage, there can be consequences such as disrupted daily routines, inconvenience, and potential risks due to darkness or malfunctioning systems. Similarly, a PoTS blackout can have consequences like an increased risk of falls or injuries, disrupted activities, and potential limitations in daily life.
I just use syncope, and pre-syncope. I also live with two former nurses. My partner doesn't really call them anything, he just catches me when I go down lol
I just say im having a bad pots day, or a flare up/ episode. Ppl close to me know that means my symptoms are bad and i won’t be doing much moving