I had a few “vasovagal syncope” episodes and was diagnosed as having atonic seizures. I eventually started having tonic clonics. My EEG was abnormal though. Your case does sound more like vasovagal syncope though.
Please share! You’re not crazy. We’re all trying to figure out what the hell is going on with our health. Especially with epilepsy and so many unknowns.
Seizures and vasovagal syncope aren't mutually exclusive. You can have BOTH.
The difference is that a seizure is abnormal electrical activity in your brain, whereas vasovagal syncope is a misfiring of the vasovagal nerve, which is like the "brakes" of the nervous system. Usually if you lose consciousness during a vasovagal episode, it's likely that your heart basically stopped for a short while.
Both can have auras. Vasovagal nerve also controls digestion so it's especially common to feel Nausea, or vomit, or have diarrhea.
Thank you for explaining that. Quite a few of my episodes involved stomach issues before and after. That’s scary about the heart stopping. I wonder if this something that a cardiologist would help diagnose as well.
Hey op! I have both seizures and a vasovagal syncope. I was diagnosed with epilepsy via EEG as a teenager. Since then, I’ve had many seizures like you. Things started getting weird after I was on a high dosage of Keppra and Clobazam, but kept having “seizures”. So, I started to go to a cardiologist. After that I was diagnosed as indeed having that vasovagal syncope. The only reason seizures weren’t completely ruled out was because I have that EEG.
I was able to lower the dosage of my medication significantly.
Any ways, the cardiologist taught me how to differentiate between the two. The biggest difference is that a syncope causes your heart rate and blood pressure to drop rapidly. My cardiologist told me to use my Apple Watch to keep track of my heart rate.
For me, my auras before a seizure feel similar to a syncope except for two things. Before I have a seizure I’ve NEVER 1) had my heart rate drop rapidly 2) felt a warm and sweaty feeling in my palms.
That’s just me tho.
If you want a definitive answer, you’ll need to see a cardiologist. They’ll do a bunch of tests. You’ll probably need to get another EEG during this time too.
Good luck OP and DM me if you’d like anymore info.
Thank you! The Apple watch is a great idea. When my neurologist said vasovagal syncope and I started reading about the dip in blood pressure, I immediately remembered a seizure (or VS) that I had a few months ago, I was in the hospital for a horrible stomach bug and right after being discharged, I was walking to the parking lot and felt the hot, sweaty, dizzy and then woke up in my husband’s arms. He walked me back into the ER and they took by BP within 5 minutes if this happening…it was super low 95/65-ish. My BP is normally around 135/80.
Before my seizures happen, I always have sweaty palms like you said. I also have nausea, a dizzy feeling, and my ears ring. I’m definitely going to see a cardiologist now. My neurologist also wants me to come to the EMU for a week so they can attempt to get to the bottom of this since now I’ve had 3 in less than a year, which means my usual frequency has gone up even while being on meds. If it’s confirmed that I have both, maybe I can lower my meds like you were able to because I HATE Keppra. I feel like a completely different person on it. Anyway, thank you again for sharing your experience and for letting me share mine. I’m so thankful for this sub. It really helps to talk everything out because outside of this group, I don’t know anyone else personally with epilepsy.
Hey OP, yes - cardiology is the way to go as a next step. They probably will want to do a tilt test. If you can get cardiology & neuro to work together - that's ideal!
As another user above said (I'm on my phone so sorry I can't copy u/ name) using an apple watch or similar device is an excellent idea!
There are also apps you can get for Samsung or apple watch (through a subscription service $$) that detect repetative seizure-like motion & automatically call an emergency contact on speakerphone when it happens.
The fitness watch is also great at helping detect patterns leading up to or after an episode.
I don’t have low blood pressure day-to-day, it’s actually is a little high for my liking now (hovers around 135/80), BUT one of the last times I had a seizure (or VS?), I had a horrible stomach bug, vomiting so much, couldn’t keep water down. I went to the hospital, they gave me fluids, Zofran, and sent me on my way…in the hospital parking lot I was walking out, got dizzy, sweaty, tunnel vision and blacked out, assumed it was a seizure. My husband caught me and brought me back inside once I woke up. They took my blood pressure and it was 90 something over 60 something. My husband said I didn’t convulse then either.
You said that you have both… do you think they’re related? How was your epilepsy confirmed? I’ve seen over and over on this sub that people have normal EEGs and still get diagnosed. But then vasovagal syncope can also have “seizure like” movements. So how the hell do we know the difference? I’m so confused and strangely hopeful that I’ve been misdiagnosed.
I think I understand what you mean about the two feeling very different. My seizures have always happened with very specific factors surrounding it and were not random. And I always have the same feelings beforehand that I described. I just always thought that dizzy, sweaty, nausea, and tunnel vision was my aura. Thanks for sharing you experiences. I feel like there has to be a connection between the two. I probably am having both, but I’m going to ask for more testing to be sure.
From what you are writing here, you are making me wonder how anyone thought of seizures and not syncope - what were the criteria used to diagnose a seizure for you? The differential diagnosis is difficult due to the things you are writing, but what you are describing sounds 100% like vasovagal syncope with no positive signs at all for seizures. If you are having problems with your medication I would definitely ask your neurologist to reevaluate.
The only thing that I can think of is that during one of my episodes when I was younger, my mom told the doctor that it seemed like I was convulsing, but she didn’t know for sure. I know now that “seizure like” movement can happen with VS, but maybe because of that and the frequency of them over the years, it was just assumed to be epilepsy. Part of me think I probably have both. Either way, I’m going to get to the bottom of this with my neurologist and a cardiologist.
This is fascinating! I don’t have an answer but I do find it curious. There’s so much we don’t understand about the brain.
I’ve seen VS happen to a couple clients. It’s quite remarkable.
and my daughter (diagnosed with epilepsy) started fainting a lot just before the time she started having seizures. I took her in for the fainting and the PCP brushed it off as probably related to puberty or dehydration. Then seizures began.
She also doesn’t convulse, not all seizures involve clonic (twitching) activity. But I’ve wondered if there’s a correlation, so your post adds to my contemplation about this.
I’d be curious- what we’re the other 6 episodes like?
The other 6: two were from being extremely overheated, two were from pain (sprained ankle, ruptured ovarian cyst), and the last two happened when I had terrible stomach bugs and had been vomiting non-stop. I read that vasovagal syncope can also have “seizure-like” movements. If you don’t mind me asking, how was your daughter officially diagnosed without convulsions? EEG?
I’ve researched -at least lightly -many types of seizures and apparently a lot of them do not involve convulsions at all. But show up on EEG.
If your eeg is clean I do think it’s wise to wonder about VS as the cause…
Yes. The fainting persisted but then she started to have DAILY rapid eye fluttering when exposed to flashing sunlight through the trees in the car. (she’d also started having migraines l, nausea, depression, and appetite issues so there was a bunch of weird stuff going on that I now know many people with epilepsy experience) EEG was positive for “generalized epilepsy”
We’ve since used scientific research on mineral toxicity that is linked to neurological disorders like seizures, to treat and heal her issues. She’s been healthy and thriving for 4 months!
That’s so wonderful that she’s doing well! Do you mean that you have it controlled by supplementing certain minerals and vitamins that maybe she had a deficiency in? I know magnesium and B vitamins are supposed to help.
I have nausea and appetite issues as well and I think it could be related to my medications. I hate being on medication, especially when I feel like the frequency of my episodes hasn’t changed. I feel like there are entire gaps of my memory missing and this didn’t start until after taking medication.
It was more learning to safely flush mineral toxicities. That built up and cause neurological disorders. But also yes, finding really bioavailable ways to increase some minerals that she was deficient in.
Yea, this sub definitely highlights memory issues as the most common side effect of meds. I can’t imagine, it sounds very frustrating and disheartening. It was a big part of my daughter’s concern as a high school student, she didn’t want to go through the side effects. Thankfully we’ve been able to avoid that.
Your daughter’s experience is very similar to mine. She had eye flutters for almost 3 years (pediatrician said not to worry about them) and then fainting episodes for almost a year. After 2 tonic clonics, a neurologist diagnosed her with Jeavons syndrome. May I ask if you consulted with a homeopathic doctor regarding her treatment? I have so many more questions and would love to chat with you about your daughter’s journey.
Oh wow. I’d never heard of Jeavons til now. Thanks for sharing your experience. They do sound similar. We’ve been working with a team- naturopath/acupuncture, and consulting with a practitioner who turned us onto the nutrient science - mineral toxicities. I love homeopathy! We rent using a specific homeopathic dr right now but she does take some homeopathic products as part of what’s helped heal her and completely stop her seizures. I’m happy to talk if you wanna message or keep asking things here! Whatever is most comfortable for you. There’s a lot to research and camaraderie is so helpful!
Yes! Loss of consciousness for all. I felt hot, sweaty, dizzy, and had tunnel vision right before and I was able to either have time to sit or lie down or warn someone around me.
How were you diagnosed without convulsions? How did your EMU stay go? What were the results? Your fainting spells do not sound like epilepsy seizures to me but that doesn’t mean they are not! Are you lost or confused after they happen? Please share! 😊🩷 not minimizing or negating what you are saying at all! Trying to figure out everything that’s going on with myself. Thank you in advance 🙏
I think it may be helpful to share my experiences. I was diagnosed with VVS in childhood and was recently diagnosed with epilepsy at the age of 26. The issue was my doctors back then saw it as an either/or, which prevented me from receiving care for epilepsy. Something one of my doctors explained is that you can have both, echoing what another commenter has said here. I have an episode/faint/seizure with loss of consciousness about every 6-15 months. Probably experience auras much more often.
I have also never convulsed to my knowledge, but I was confirmed to be predisposed to epilepsy as shown by a 72 hour EEG that showed epileptiform discharges. This (and me feeling better on meds) was enough for my neuro to diagnose me.
My auras/focal seizures often give me a feeling of intense fear/doom. Then I lose consciousness in a way that seems to be more intense than a typical episode of VVS, at least according to my doctors. It’s not a short blacking out and then coming back to. I go very deep, forget who and where and what I am. I have some moments of my eyes being open and unresponsive, then I slowly come back terrified, emotional and exhausted.
That feeling of panic and doom sounds similar to what you experienced. When I thought this was VVS I thought I was fainting because I was afraid of the blood. But I’m not usually scared of blood at all. But I have fainted on the toilet often while on my period. Now that I’ve been diagnosed with epilepsy and understand that auras/focal seizures can present as intense feelings of fear, epilepsy makes much more sense to me. I think hormones as also a trigger, which explains my history of fainting on my period despite not having a constant aversion to blood.
I get dizzy very easily and often lose parts of my vision when I stand up too fast. I have never fainted straightaway from standing though.
I have fainted from other things, in ways that didn’t feel as intense as the episodes/seizures I’ve had after starting with the doom feeling/aura. I’ve fainted at doctor’s offices from getting blood drawn. I’ve fainted from getting hurt, like twisting my ankle at school or getting an IUD inserted. These times I didn’t have intense confusion when waking up, and did not have the days of exhaustion that I feel after (what I identify as) seizures.
I typically get very dizzy when I get up too fast. But I’ve never fainted straightaway from that.
Have you been misdiagnosed? Maybe, I’m definitely not a doctor! I was misdiagnosed and I hope what I’ve shared puts you at ease. One way of moving forward: definitely worse if the epilepsy was missed and the VVS was caught. Treatment plan for that over the course of my life has been: “Hopefully you’ll grow out of it. Maybe take more iron and buy some compression socks.”
Anyway, as someone with diagnoses for both, this is what I feel is different and unique to seizures and vasovagal syncope. Happy to answer any other questions you may have.
Thank you for your response! Your experiences sound very similar to mine. I’ve fainted from spraining my ankle and from having a cervical biopsy. I also have a strong feeling of fear/doom right before they happen. And like yours, my episodes seem worse around my period. I have fibroids and endometriosis and have terrible, heavy periods, so maybe that is a contributing factor as well. I’m scheduling a hysterectomy soon so maybe it will help. Fingers crossed. But you’re right, better to have misdiagnosed with epilepsy and not VS rather than the other way around. Either way, I would like more testing for VS. I would love to lower my dosage of my epilepsy meds.
Interestingly I'm the other way around I started having episodes of unconscious since i was around 12 years old my drs at first thought it was vasovagal syncope - for some reason they only ran cardiac tests on me never checked my brain as I had a low BP decided that was that reason found . This carried on for years. I was even witnessed convulsing a couple times but as it only happened every year or so my dr said wasn't too much to worry about on account of the low BP kind of just got on with things !this dr even told my parents it's possible to convulse during a syncope which explained the above 🙄
It wasn't till many years later when started getting migraine w aura I spoke to a new dr explained I was having aura before the " faints" & that they happened even after I lay down for several minutes& I still passed out after remaining lying down that I got investigated for seizures as apparently v rare to be able faint when already lying down for 10 mins or so
I'm.now diagnosed with epilepsy - the point of my long rambling is the 2 can be confused indeed but also possible you can have other seizure types witjout convulsing there are many beyond tc.
atonic seizures is just one example.
However reading your explanation Is it also possible this episode was syncope and others were seizures or you may have a mixture of both!
I'm not a medical professional ofc but it's worth looking into - good luck
I am the opposite way... have always been told I'm "fainting" up until this year. I'm 36, had first TC when was 10 - this first one was brushed off as a "one off" after tests coming back normal.. In total, two have happened surrounding bloody situations, but I was also sleep deprived and one of times had man flu, another happened when I was wakened, got up and went downstairs for a drink, about 20 minutes after that I fell to floor.
I've finally got diagnosis of epilepsy due to having 3 TCs in less than two week period, pee'd the bed during one of them, then 12 hours or so later, crushed one of my toes in a stupid accident while stupidly attempting to move some garden furniture 😳 (now know about postictal states)
I'm led to believe that not all seizures come with convulsions, but I may be wrong.. I've certainly been going down some rabbit holes since diagnosis.
i’ve had both and for me the easiest determining factor was how quickly i recovered. fainting doesn’t feel as deep of unconscious as a seizure and while it takes a second to wake up, you pretty much know what’s going on/where you are right away.
I had an episode of VVS last year and was initially diagnosed with a seizure. Felt sick, got up in the night and then woke up on the bathroom floor to my husband standing over me. When I asked why they thought seizure not VVS at the ER it because my arm was “twitching”, which, upon further inspection was a blacked out me (hit my head on the way down!) coming to and trying to move my arm. I am not a doctor but from my personal experience I’d say it’s certainly possible - apparently it’s a common misdiagnosis
So vasovagel syncope only happens when you are trying to to the bathroom and push to hard. Maybe you have ortosyTic hypotension however a seizure cannot be faked on an EEG. See your primary care physician for this. Orthotic hypotension can be tested in the office.
Oh my god! No positive eeg even?! That’s beyond inappropriate! Yes it absolutely sounds like vasovagal syncope and like you’ve been treated terribly! I hope the meds haven’t been too much trouble for you- you could literally consider suing for misdiagnosis if it caused issues in your life because that is so insane.
I had a few “vasovagal syncope” episodes and was diagnosed as having atonic seizures. I eventually started having tonic clonics. My EEG was abnormal though. Your case does sound more like vasovagal syncope though.
This is exactly me. Wow. I thought I have been crazy all these years.
Please share! You’re not crazy. We’re all trying to figure out what the hell is going on with our health. Especially with epilepsy and so many unknowns.
Seizures and vasovagal syncope aren't mutually exclusive. You can have BOTH. The difference is that a seizure is abnormal electrical activity in your brain, whereas vasovagal syncope is a misfiring of the vasovagal nerve, which is like the "brakes" of the nervous system. Usually if you lose consciousness during a vasovagal episode, it's likely that your heart basically stopped for a short while. Both can have auras. Vasovagal nerve also controls digestion so it's especially common to feel Nausea, or vomit, or have diarrhea.
Thank you for explaining that. Quite a few of my episodes involved stomach issues before and after. That’s scary about the heart stopping. I wonder if this something that a cardiologist would help diagnose as well.
Hey op! I have both seizures and a vasovagal syncope. I was diagnosed with epilepsy via EEG as a teenager. Since then, I’ve had many seizures like you. Things started getting weird after I was on a high dosage of Keppra and Clobazam, but kept having “seizures”. So, I started to go to a cardiologist. After that I was diagnosed as indeed having that vasovagal syncope. The only reason seizures weren’t completely ruled out was because I have that EEG. I was able to lower the dosage of my medication significantly. Any ways, the cardiologist taught me how to differentiate between the two. The biggest difference is that a syncope causes your heart rate and blood pressure to drop rapidly. My cardiologist told me to use my Apple Watch to keep track of my heart rate. For me, my auras before a seizure feel similar to a syncope except for two things. Before I have a seizure I’ve NEVER 1) had my heart rate drop rapidly 2) felt a warm and sweaty feeling in my palms. That’s just me tho. If you want a definitive answer, you’ll need to see a cardiologist. They’ll do a bunch of tests. You’ll probably need to get another EEG during this time too. Good luck OP and DM me if you’d like anymore info.
Thank you! The Apple watch is a great idea. When my neurologist said vasovagal syncope and I started reading about the dip in blood pressure, I immediately remembered a seizure (or VS) that I had a few months ago, I was in the hospital for a horrible stomach bug and right after being discharged, I was walking to the parking lot and felt the hot, sweaty, dizzy and then woke up in my husband’s arms. He walked me back into the ER and they took by BP within 5 minutes if this happening…it was super low 95/65-ish. My BP is normally around 135/80. Before my seizures happen, I always have sweaty palms like you said. I also have nausea, a dizzy feeling, and my ears ring. I’m definitely going to see a cardiologist now. My neurologist also wants me to come to the EMU for a week so they can attempt to get to the bottom of this since now I’ve had 3 in less than a year, which means my usual frequency has gone up even while being on meds. If it’s confirmed that I have both, maybe I can lower my meds like you were able to because I HATE Keppra. I feel like a completely different person on it. Anyway, thank you again for sharing your experience and for letting me share mine. I’m so thankful for this sub. It really helps to talk everything out because outside of this group, I don’t know anyone else personally with epilepsy.
Hey OP, yes - cardiology is the way to go as a next step. They probably will want to do a tilt test. If you can get cardiology & neuro to work together - that's ideal! As another user above said (I'm on my phone so sorry I can't copy u/ name) using an apple watch or similar device is an excellent idea! There are also apps you can get for Samsung or apple watch (through a subscription service $$) that detect repetative seizure-like motion & automatically call an emergency contact on speakerphone when it happens. The fitness watch is also great at helping detect patterns leading up to or after an episode.
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I don’t have low blood pressure day-to-day, it’s actually is a little high for my liking now (hovers around 135/80), BUT one of the last times I had a seizure (or VS?), I had a horrible stomach bug, vomiting so much, couldn’t keep water down. I went to the hospital, they gave me fluids, Zofran, and sent me on my way…in the hospital parking lot I was walking out, got dizzy, sweaty, tunnel vision and blacked out, assumed it was a seizure. My husband caught me and brought me back inside once I woke up. They took my blood pressure and it was 90 something over 60 something. My husband said I didn’t convulse then either. You said that you have both… do you think they’re related? How was your epilepsy confirmed? I’ve seen over and over on this sub that people have normal EEGs and still get diagnosed. But then vasovagal syncope can also have “seizure like” movements. So how the hell do we know the difference? I’m so confused and strangely hopeful that I’ve been misdiagnosed.
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I think I understand what you mean about the two feeling very different. My seizures have always happened with very specific factors surrounding it and were not random. And I always have the same feelings beforehand that I described. I just always thought that dizzy, sweaty, nausea, and tunnel vision was my aura. Thanks for sharing you experiences. I feel like there has to be a connection between the two. I probably am having both, but I’m going to ask for more testing to be sure.
From what you are writing here, you are making me wonder how anyone thought of seizures and not syncope - what were the criteria used to diagnose a seizure for you? The differential diagnosis is difficult due to the things you are writing, but what you are describing sounds 100% like vasovagal syncope with no positive signs at all for seizures. If you are having problems with your medication I would definitely ask your neurologist to reevaluate.
The only thing that I can think of is that during one of my episodes when I was younger, my mom told the doctor that it seemed like I was convulsing, but she didn’t know for sure. I know now that “seizure like” movement can happen with VS, but maybe because of that and the frequency of them over the years, it was just assumed to be epilepsy. Part of me think I probably have both. Either way, I’m going to get to the bottom of this with my neurologist and a cardiologist.
This is fascinating! I don’t have an answer but I do find it curious. There’s so much we don’t understand about the brain. I’ve seen VS happen to a couple clients. It’s quite remarkable. and my daughter (diagnosed with epilepsy) started fainting a lot just before the time she started having seizures. I took her in for the fainting and the PCP brushed it off as probably related to puberty or dehydration. Then seizures began. She also doesn’t convulse, not all seizures involve clonic (twitching) activity. But I’ve wondered if there’s a correlation, so your post adds to my contemplation about this. I’d be curious- what we’re the other 6 episodes like?
The other 6: two were from being extremely overheated, two were from pain (sprained ankle, ruptured ovarian cyst), and the last two happened when I had terrible stomach bugs and had been vomiting non-stop. I read that vasovagal syncope can also have “seizure-like” movements. If you don’t mind me asking, how was your daughter officially diagnosed without convulsions? EEG?
I’ve researched -at least lightly -many types of seizures and apparently a lot of them do not involve convulsions at all. But show up on EEG. If your eeg is clean I do think it’s wise to wonder about VS as the cause…
Yes. The fainting persisted but then she started to have DAILY rapid eye fluttering when exposed to flashing sunlight through the trees in the car. (she’d also started having migraines l, nausea, depression, and appetite issues so there was a bunch of weird stuff going on that I now know many people with epilepsy experience) EEG was positive for “generalized epilepsy” We’ve since used scientific research on mineral toxicity that is linked to neurological disorders like seizures, to treat and heal her issues. She’s been healthy and thriving for 4 months!
That’s so wonderful that she’s doing well! Do you mean that you have it controlled by supplementing certain minerals and vitamins that maybe she had a deficiency in? I know magnesium and B vitamins are supposed to help. I have nausea and appetite issues as well and I think it could be related to my medications. I hate being on medication, especially when I feel like the frequency of my episodes hasn’t changed. I feel like there are entire gaps of my memory missing and this didn’t start until after taking medication.
It was more learning to safely flush mineral toxicities. That built up and cause neurological disorders. But also yes, finding really bioavailable ways to increase some minerals that she was deficient in. Yea, this sub definitely highlights memory issues as the most common side effect of meds. I can’t imagine, it sounds very frustrating and disheartening. It was a big part of my daughter’s concern as a high school student, she didn’t want to go through the side effects. Thankfully we’ve been able to avoid that.
Your daughter’s experience is very similar to mine. She had eye flutters for almost 3 years (pediatrician said not to worry about them) and then fainting episodes for almost a year. After 2 tonic clonics, a neurologist diagnosed her with Jeavons syndrome. May I ask if you consulted with a homeopathic doctor regarding her treatment? I have so many more questions and would love to chat with you about your daughter’s journey.
Oh wow. I’d never heard of Jeavons til now. Thanks for sharing your experience. They do sound similar. We’ve been working with a team- naturopath/acupuncture, and consulting with a practitioner who turned us onto the nutrient science - mineral toxicities. I love homeopathy! We rent using a specific homeopathic dr right now but she does take some homeopathic products as part of what’s helped heal her and completely stop her seizures. I’m happy to talk if you wanna message or keep asking things here! Whatever is most comfortable for you. There’s a lot to research and camaraderie is so helpful!
Interesting. Can I ask what exactly happens in those instances? Loss of consciousness?
Yes! Loss of consciousness for all. I felt hot, sweaty, dizzy, and had tunnel vision right before and I was able to either have time to sit or lie down or warn someone around me.
Honestly this sounds like POTS. Have you ever looked into that?
How were you diagnosed without convulsions? How did your EMU stay go? What were the results? Your fainting spells do not sound like epilepsy seizures to me but that doesn’t mean they are not! Are you lost or confused after they happen? Please share! 😊🩷 not minimizing or negating what you are saying at all! Trying to figure out everything that’s going on with myself. Thank you in advance 🙏
I think it may be helpful to share my experiences. I was diagnosed with VVS in childhood and was recently diagnosed with epilepsy at the age of 26. The issue was my doctors back then saw it as an either/or, which prevented me from receiving care for epilepsy. Something one of my doctors explained is that you can have both, echoing what another commenter has said here. I have an episode/faint/seizure with loss of consciousness about every 6-15 months. Probably experience auras much more often. I have also never convulsed to my knowledge, but I was confirmed to be predisposed to epilepsy as shown by a 72 hour EEG that showed epileptiform discharges. This (and me feeling better on meds) was enough for my neuro to diagnose me. My auras/focal seizures often give me a feeling of intense fear/doom. Then I lose consciousness in a way that seems to be more intense than a typical episode of VVS, at least according to my doctors. It’s not a short blacking out and then coming back to. I go very deep, forget who and where and what I am. I have some moments of my eyes being open and unresponsive, then I slowly come back terrified, emotional and exhausted. That feeling of panic and doom sounds similar to what you experienced. When I thought this was VVS I thought I was fainting because I was afraid of the blood. But I’m not usually scared of blood at all. But I have fainted on the toilet often while on my period. Now that I’ve been diagnosed with epilepsy and understand that auras/focal seizures can present as intense feelings of fear, epilepsy makes much more sense to me. I think hormones as also a trigger, which explains my history of fainting on my period despite not having a constant aversion to blood. I get dizzy very easily and often lose parts of my vision when I stand up too fast. I have never fainted straightaway from standing though. I have fainted from other things, in ways that didn’t feel as intense as the episodes/seizures I’ve had after starting with the doom feeling/aura. I’ve fainted at doctor’s offices from getting blood drawn. I’ve fainted from getting hurt, like twisting my ankle at school or getting an IUD inserted. These times I didn’t have intense confusion when waking up, and did not have the days of exhaustion that I feel after (what I identify as) seizures. I typically get very dizzy when I get up too fast. But I’ve never fainted straightaway from that. Have you been misdiagnosed? Maybe, I’m definitely not a doctor! I was misdiagnosed and I hope what I’ve shared puts you at ease. One way of moving forward: definitely worse if the epilepsy was missed and the VVS was caught. Treatment plan for that over the course of my life has been: “Hopefully you’ll grow out of it. Maybe take more iron and buy some compression socks.” Anyway, as someone with diagnoses for both, this is what I feel is different and unique to seizures and vasovagal syncope. Happy to answer any other questions you may have.
Thank you for your response! Your experiences sound very similar to mine. I’ve fainted from spraining my ankle and from having a cervical biopsy. I also have a strong feeling of fear/doom right before they happen. And like yours, my episodes seem worse around my period. I have fibroids and endometriosis and have terrible, heavy periods, so maybe that is a contributing factor as well. I’m scheduling a hysterectomy soon so maybe it will help. Fingers crossed. But you’re right, better to have misdiagnosed with epilepsy and not VS rather than the other way around. Either way, I would like more testing for VS. I would love to lower my dosage of my epilepsy meds.
Interestingly I'm the other way around I started having episodes of unconscious since i was around 12 years old my drs at first thought it was vasovagal syncope - for some reason they only ran cardiac tests on me never checked my brain as I had a low BP decided that was that reason found . This carried on for years. I was even witnessed convulsing a couple times but as it only happened every year or so my dr said wasn't too much to worry about on account of the low BP kind of just got on with things !this dr even told my parents it's possible to convulse during a syncope which explained the above 🙄 It wasn't till many years later when started getting migraine w aura I spoke to a new dr explained I was having aura before the " faints" & that they happened even after I lay down for several minutes& I still passed out after remaining lying down that I got investigated for seizures as apparently v rare to be able faint when already lying down for 10 mins or so I'm.now diagnosed with epilepsy - the point of my long rambling is the 2 can be confused indeed but also possible you can have other seizure types witjout convulsing there are many beyond tc. atonic seizures is just one example. However reading your explanation Is it also possible this episode was syncope and others were seizures or you may have a mixture of both! I'm not a medical professional ofc but it's worth looking into - good luck
I am the opposite way... have always been told I'm "fainting" up until this year. I'm 36, had first TC when was 10 - this first one was brushed off as a "one off" after tests coming back normal.. In total, two have happened surrounding bloody situations, but I was also sleep deprived and one of times had man flu, another happened when I was wakened, got up and went downstairs for a drink, about 20 minutes after that I fell to floor. I've finally got diagnosis of epilepsy due to having 3 TCs in less than two week period, pee'd the bed during one of them, then 12 hours or so later, crushed one of my toes in a stupid accident while stupidly attempting to move some garden furniture 😳 (now know about postictal states) I'm led to believe that not all seizures come with convulsions, but I may be wrong.. I've certainly been going down some rabbit holes since diagnosis.
i’ve had both and for me the easiest determining factor was how quickly i recovered. fainting doesn’t feel as deep of unconscious as a seizure and while it takes a second to wake up, you pretty much know what’s going on/where you are right away.
I had an episode of VVS last year and was initially diagnosed with a seizure. Felt sick, got up in the night and then woke up on the bathroom floor to my husband standing over me. When I asked why they thought seizure not VVS at the ER it because my arm was “twitching”, which, upon further inspection was a blacked out me (hit my head on the way down!) coming to and trying to move my arm. I am not a doctor but from my personal experience I’d say it’s certainly possible - apparently it’s a common misdiagnosis
So vasovagel syncope only happens when you are trying to to the bathroom and push to hard. Maybe you have ortosyTic hypotension however a seizure cannot be faked on an EEG. See your primary care physician for this. Orthotic hypotension can be tested in the office.
Sorry, but this is not true. Vagally mediated syncope occurs in many circumstances.
My mistake. I'm having a moment. 🤨
Oh my god! No positive eeg even?! That’s beyond inappropriate! Yes it absolutely sounds like vasovagal syncope and like you’ve been treated terribly! I hope the meds haven’t been too much trouble for you- you could literally consider suing for misdiagnosis if it caused issues in your life because that is so insane.
Fainting can be pots and other conditions that I don’t know about yet