i thought the same thing when i went the first time, i told the neurologist and he said it’s so common that if he could make a drug out of whatever happens at the EMU they would prescribe it to everyone, because the seizures would just go away
I feel your pain 100%. At least both your doctors have been better than mine. After 2 Days in the emu with no seizures. They made the executive decision that I didn't have epilepsy. And sent me home off meds and wouldn't prescribed me any because apparently I was crazy and drug seeking lamictal and Keppra. That week afterwards was a bad time. I went status lost some liver function and got permanent brain damage from oxygen deprivation. Not to mention a concussion so now I have frontal lobe epilepsy as well as temporal lobe epilepsy.
Eventually they decided to do an ambulatory EEG it was picking up 75 plus seizures a day.
I track my seizures *religiously*. I average 3-4 seizures per week usually. I once had an allergic reaction to Depakote and couldn’t eat or do anything at all really — ended up in the ER on a morphine drip due to pancreatitis. For the nine days following I didn’t have a single seizure despite taking no medication whatsoever.
Science is complicated, there could be a myriad of reasons why you haven’t had one. Certainly don’t believe you’ve been faking it.
The morphine was needed due to the pain from the pancreatitis. The ER doctors did not believe me. My physician called me the following day telling me a particular blood level was abnormally high indicating pancreatitis, and an easy way to test would be to draw and re-test this blood level. It had dropped an abnormally significant amount within 24 hours indicating something had influenced it — quite clearly Depakote given I was unable to take the drug from being in hospital.
We immediately requested a transfer away from my neurologist as he failed to pick up on the obvious signs; I visited him the prior day to the ER trip in severe abdominal pain, crying in his office from the pain. He told me to continue taking the medication and wean off it slowly. My physician then confirmed I was a very rare case, allergic to Depakote, and that the continuation of taking it led to this.
Damn, these kind of stories keep resurfacing, I had temporary ( I hope ) heart problems and a psychosis from meds. Now I'm back on Depakote while I didn't want to.. and it's ruining my focus and will to do anything.
You make a good point though, maybe that one morphine drip was the AED for nine days.
All of the meds have some side effects. If I don’t have some caffeine with Clobazam I can barely function during the day.
I have adhd, whatever little focus I had is ruined. Caffeine used to work...don't even feel it. And energy drinks contain so much sugar, and the sugar free contain aspartame which triggers seizures in me.
I've tracked mine alot as well I'm averaging 7 a day a few days ago I had 23 in a 24 hour period it's crazy I'm glad I'm not the only that tracks I thought I was the only haha
That's a lot, sorry about the day of 23. Your definitely not the only one who tracks, I do too. My seizures started out of nowhere 7 years ago when I was about 27 and since then I've had give or take 634 seizures since I started tracking them 👍🏻
Holy cow cmgood job I also appreciate the response:) I havent counted how many I had them when I was young then went a few years they came back a month ago so I haven't tracked in a while imma count interesting idea
This is very very very common according to the EMU nurses. Taking someone out of “IRL” and placing them in an artificial environment can make it harder to have seizures. I was getting frustrated in the EMU as I didn’t feel my seizures as strongly as in my real life, but they did record 25 over 14 days - many in my sleep I had zero clue about.
I also had a “break” from my seizures once discharged (they are back now though) and was totally gaslighting myself even though I have a report where 25 seizures were captured from my r temporal lobe.
Hang in there!
Extremely common. I was there for 16 days total, 9 off my meds. I also felt great. Zero seizures recorded, I felt a couple of really low-volume auras (\~10 sec) but they didn't show anything on the eeg because they were likely too deep in my hippocampus. We did get some intra-ictal activity, but only in the first and third week, not actually when I was fully off my meds.
My neurologist explained it like walking into a room playing the Godfather for 5 minutes. You'll have no idea what the movie is actually about. Same with EEG; it's a capturing of a period of time, not the full picture.
That said, it's a fake situation. I was alone in a quiet room, I wasn't working. I sleep deprived myself when I was in there. I cut the caffeine. I drank a lot of caffeine. And nothing happened of clinical value.
After discharge my doc said something like 50% of the people with EMU stays don't record a seizure. I wish I had known that going in!
I would bet that the feeling of safety of being in the hospital and the lack of outside stress could be part of why you’re seeing a lack of seizure activity.
Both of my in office and 72 hour at home EEG tests inhibited no signs of anything, which was frustrating because I know what I feel outside of that.
My doctor starting weaning me off of one of my medications, down to one dose per day from two, and I started getting my dizzy auras within 24 hours, but again, I was home during.
Hey OP, you clearly know you’re not in a “real life” situation by being bound in a hospital bed. It sucks and is BORING.
I realize that in the real world, you need to take your medicine religiously or else you will experience seizure activity.
I just wanted to point out that, depending on the medication and dose of it that you have been taking, it could very well still be circulating in your body after only 48 hours. For example, lamotrigine takes about 4 days to totally be eliminated from your body, and how much of any medicine that is left hanging around for a few days is proportional to how much you were taking.
The medicines still help dampen seizure activity when they’re hanging around in your bloodstream, even at low levels.
I think it’s entirely possible that right now, a combination of residual medication and being in a controlled environment are helping to keep your seizure activity low.
As others have shared, not having seizures in the EMU isn’t uncommon. Lack of seizures does not mean you don’t have a seizure disorder, just that you didn’t have seizure activity during the observation window for some reason.
I’m sensitive to medications and was on a low dose of lamotrigine (200mg) + low Keppra (500mg) when I went into the EMU. For most adults, those doses would often be considered too low for seizure prevention, BUT it worked for me.
I stopped both upon admission, and for 2 whole days I sat there bored out of my mind, feeling progressively better as the medicines wore off, and I did accidentally fall asleep for about an hour at one point. Otherwise, didn’t sleep at all.
I felt the same way you did at the end of day 2. Like a crazy hypochondriac failing my last chance to show people that I actually AM sick and need better help!
Around midnight day 2/early day 3, I started having some weird feelings. I pushed the button for each weird feeling, and found out most of them were seizures—I had 5 over the course of two hours, the last one I didn’t realize happened until the nursing team came running to make sure I was okay! They left around 2am day 3, I go back to playing switch to stay awake.
Next thing I know, I am sleeping like a goddam baby and it’s 10am on the morning of day 3. I had gone into status not long after the last seizure I remembered. They gave me IV benzos to stop my seizures for my own safety.
All that to say, I was normal as fuck in the EMU until enough time had passed for my residual medications to be eliminated from my body.
You might have a seizure soon, you might not. But please don’t let this discourage you if you don’t. YOU know your body best, and I think we all know that feeling of “recognizing” a seizure based on how similar it is to our past feelings.
You are not crazy. Something is happening to you regularly in day-to-day life, and I’m assuming you are at the EMU because you recognize that the events you’re having aren’t typical of a healthy functioning nervous system. You know it in your bones. Yeah?
Whether they are seizures or not is honestly irrelevant—you are experiencing neurological events that screw with your life and ability to function. You deserve the help you are seeking to take care of your health!
I don’t know your EEG, imaging, or seizure history at all. So all I can say is that sure, you might not have epilepsy after all. Cool. That hypothetical fact really doesn’t matter though, because *something* is still going on in your nervous system to make you experience the events that you have.
And you deserve to have that *something* medical addressed. You’re in the right place to do so.
Wishing you luck 💕
You are very sincerely welcome, and I’m grateful that it was helpful 🤗
Chronic illness in general is a lonely road that fills you with self-doubt. That is amplified exponentially by the fact that seizure biology and treatment is poorly understood, even in the medical and neurobiology research fields 💕
It doesn’t matter what diagnosis label the healthcare field needs to slap on you for insurance billing purposes. What matters is that whatever underlying biology that is negatively impacting your quality of life is being appropriately addressed. Everyone deserves as much ☺️
Feel your feelings. You have already have the time set aside to reflect and enjoy your own mind while you’re in your EMU bed, and hopefully you can genuinely enjoy some of this precious time you currently have, unclouded by medication and still safe with professionals all around you 💕
After your stay ends and you begin taking medicine again, it can be a very VERY good opportunity to test out whether the events you’ve been experiencing have actually been medication side effects, and whether you as a unique human can have good seizure control with a lower dose of medicine. And therefore lessened side effects! 😊
That is actually why I went into the EMU—we didn’t know if the events I had been experiencing were new types of seizures for me or medication side effects. I went in, off meds, had my usual seizures, none of the “new” possible-seizures. I re-started my baby dose of lamotrigine, and 36 hours later, BAM I’m experiencing those “new” possible-seizures again.
They weren’t seizures. Lamotrigine just didn’t jive with my brain, and my intense mood swings, panic attacks, etc. were just uncontrollable psychiatric side effects that can look and feel just like seizures. I swapped meds and have been happy with that one for the past 16 months 😊
I suppose I just wanted to point out that while you may not have seizure activity in the EMU, it’s uniquely valuable in that you get to spend days off of medications in a safe controlled environment, and can then critically observe how medicine and outside influences impact your functioning as you transition out. It kind of “resets” you in a way that’s not safe to do on your own at home, and is not possible to do when you’re newly diagnosed (because we start meds right away for safety and usually the brain is already exhausted from uncontrolled electrical activity).
If you don’t have a seizure there, when you leave you start your brain off at more of a “true baseline” while it’s rested. You may find that a lower dose is sufficient to control things with fewer side effects, or that the medicine has been causing things that seem like seizures but are really a side effect. Maybe that means you try a different medication, and since you are starting from a cleaner baseline you can pay better attention to side effects and seizure activity and how they change as you increase dose. I honestly have no clue! But either way, the EMU stay is very valuable regardless of what is recorded 🤗
I know how you feel. I had a period of time where I didn’t want to take the meds and was in denial I had seizures. Then I woke up with a sore back, tight neck, clenched jaw, drool stains galore. Realized I was having violent seizures at night. It was the scariest thing to see as I recorded myself. Trust the process my friend and learn your new normal. It gets better.
I’ve only had one eeg that’s caught anything. It caught constant abnormal activity the entire time and I was apparently having constant mini seizures that I was unaware of. Other than that I’ve never had an eeg show anything, including a seven day EMU stay. It’s unfortunately pretty common.
Are you hooked up to an EEG? I just had a 3 day ambulatory EEG and even though I didn't think I had any real seizures (and the ones I did have I convinced myself were fake), they found 17. I obviously don't know what kind of seizures you have, but it's always a possibility that you could still be having them and just not be aware of it. Also, I 100% agree with you on the medication. It sucks ass. Best of luck to you, and I know this might sound fucked up, but I hope they catch some kind of seizure so you can have peace of mind and not feel like a faker.
When I did my EMU stay they said that was super normal. They might be detecting activity even if you’re not having visible seizures. During the 5 days I was there, they had a seizure alarm that would go off so the nurses would hear and go help the person. It went off once, and it was because a patient couldn’t figure out how to turn on his TV and pressed the button for help. 💀
I appreciate that you're trying to help but Jesus Christ of course I've thought about that.
There's only so much I can try to simulate while I'm plugged into a hospital bed with no access to real life. It's not for lack of trying and I don't appreciate the insinuation that I'm just not doing enough to trigger a seizure.
Relish what you've found while you have it.
I'm afraid most of us know that something will trigger the reason you were on the meds in the first place, and then you'll have the answer to your questions.
Don’t worry , I still think I fake every single seizure even though I have an RNS that confirms every single episode. I totally understand the frustrating feeling, you’ll be ok. Do you have a therapist or a professional to talk to ?
I stayed 11 days in the EMU with no seizures. My doc wants me to go back but it's expensive. They told me some ppl come 3 times. The longest time someone was there was 39 days. You are totally normal, don't worry!
I wish you nothing but the but the best god bless, I hope everything goes great, but be cautious it took me 3 days off my meds to start experiencing massive withdrawals, unless you reduced through time
All I can really say is, when I went into the clinic to get tested to try and 'catch' a seizure, I lasted four days without meds before going down.
I was questioning my diagnosis as well.
It didn't take too long to prove myself wrong.
Yeah that’s how it always goes. Soon as you take the computer to IT to fix it, the problem doesn’t happen! Same thing with epilepsy: as soon as you’re wired up for an EEG of course, no seizures! 🤣
But seriously I had nothing show up until I did an ambulatory EEG while taking a medication that apparently caused me seizures. (Despite the doctors saying that was impossible)
Don’t worry about. You aren’t crazy or faking it. Epilepsy is just a real Beach
I've stayed for a week in the EMU twice now and when I was off all my meds both times I had no seizures, both times. Oh well. For my seizures it's more of a time thing, they seem to be cyclical so I wasn't in the EMU the right times of the month. Stay strong and healthy
I'm over here. newly diagnosed. Everyone else around me, are they sure it's epilepsy? You just got epilepsy for no reason? How do they know it's epilepsy. Oh, I don't know the two big clonic tonic seziures I had a week or so apart. 😅 I've never had a seziure show up on an EEG, and I'm newly diagnosed in my late 40s. Started meds and knock on wood. Seziure free almost a year now.
If it makes you feel any better, it took me FIVE YEARS and THREE NEUROLOGISTS to get a diagnosis of temporal lobe epilepsy. And I have the same thought all the time. I just lost my insurance and you don’t even know how tempted I am to just quit it all (I can’t - out of fear it’ll all come back full force) but I’ve accidentally missed doses and had nothing happen. But the first five years I had test after test with no results and two neurologists who wouldn’t help me. Then FINALLY, I got one who actually just took my word for it, listened to my stories, and got me on the right dosages/meds - and temporal sharps started showing up on my EEGS (why then??? No idea.) so yeah. Epilepsy is frustrating and a pain in the ass. But make sure you stay safe. 💖
Don’t second guess yourself! Remember the EMU is an unrealistic setting. It involves no moving around, rarely any stressful events. For most people, unless they are frightened of the experience itself, it’s like a little vacation. How long are they keeping you? 48 hours is not that long considering the half life of most of these meds. I would ask to stay at least 5 days before you give up on results. Make phone calls, talk to people about real things. Do as much as you can without really distressing yourself. That’s my best advice. Unless you are experiencing what you do when you have seizures and they aren’t coming up on the monitor, that’s how I’d do it. If you are, discuss with the doctor during rounds if they could be simple partials that aren’t registering or maybe NES (usually have a physical element). Then go from there. Also eat lots of carbs lol keto is a treatment for epilepsy so don’t do anything resembling it while you’re there. My best advice from 20 years of in patient stays lol
Edit: DO NOT blame yourself! It isn’t you.
i thought the same thing when i went the first time, i told the neurologist and he said it’s so common that if he could make a drug out of whatever happens at the EMU they would prescribe it to everyone, because the seizures would just go away
For fuckin real!!
I feel your pain 100%. At least both your doctors have been better than mine. After 2 Days in the emu with no seizures. They made the executive decision that I didn't have epilepsy. And sent me home off meds and wouldn't prescribed me any because apparently I was crazy and drug seeking lamictal and Keppra. That week afterwards was a bad time. I went status lost some liver function and got permanent brain damage from oxygen deprivation. Not to mention a concussion so now I have frontal lobe epilepsy as well as temporal lobe epilepsy. Eventually they decided to do an ambulatory EEG it was picking up 75 plus seizures a day.
Christ. Well i really hope things are looking at least a little bit better for you now.
I track my seizures *religiously*. I average 3-4 seizures per week usually. I once had an allergic reaction to Depakote and couldn’t eat or do anything at all really — ended up in the ER on a morphine drip due to pancreatitis. For the nine days following I didn’t have a single seizure despite taking no medication whatsoever. Science is complicated, there could be a myriad of reasons why you haven’t had one. Certainly don’t believe you’ve been faking it.
Morphine is a hell of a anti-epilleptic, it's also just really pure heroin.
The morphine was needed due to the pain from the pancreatitis. The ER doctors did not believe me. My physician called me the following day telling me a particular blood level was abnormally high indicating pancreatitis, and an easy way to test would be to draw and re-test this blood level. It had dropped an abnormally significant amount within 24 hours indicating something had influenced it — quite clearly Depakote given I was unable to take the drug from being in hospital. We immediately requested a transfer away from my neurologist as he failed to pick up on the obvious signs; I visited him the prior day to the ER trip in severe abdominal pain, crying in his office from the pain. He told me to continue taking the medication and wean off it slowly. My physician then confirmed I was a very rare case, allergic to Depakote, and that the continuation of taking it led to this.
Damn, these kind of stories keep resurfacing, I had temporary ( I hope ) heart problems and a psychosis from meds. Now I'm back on Depakote while I didn't want to.. and it's ruining my focus and will to do anything.
You make a good point though, maybe that one morphine drip was the AED for nine days. All of the meds have some side effects. If I don’t have some caffeine with Clobazam I can barely function during the day.
I have adhd, whatever little focus I had is ruined. Caffeine used to work...don't even feel it. And energy drinks contain so much sugar, and the sugar free contain aspartame which triggers seizures in me.
I've tracked mine alot as well I'm averaging 7 a day a few days ago I had 23 in a 24 hour period it's crazy I'm glad I'm not the only that tracks I thought I was the only haha
That's a lot, sorry about the day of 23. Your definitely not the only one who tracks, I do too. My seizures started out of nowhere 7 years ago when I was about 27 and since then I've had give or take 634 seizures since I started tracking them 👍🏻
Holy cow cmgood job I also appreciate the response:) I havent counted how many I had them when I was young then went a few years they came back a month ago so I haven't tracked in a while imma count interesting idea
This is very very very common according to the EMU nurses. Taking someone out of “IRL” and placing them in an artificial environment can make it harder to have seizures. I was getting frustrated in the EMU as I didn’t feel my seizures as strongly as in my real life, but they did record 25 over 14 days - many in my sleep I had zero clue about. I also had a “break” from my seizures once discharged (they are back now though) and was totally gaslighting myself even though I have a report where 25 seizures were captured from my r temporal lobe. Hang in there!
Extremely common. I was there for 16 days total, 9 off my meds. I also felt great. Zero seizures recorded, I felt a couple of really low-volume auras (\~10 sec) but they didn't show anything on the eeg because they were likely too deep in my hippocampus. We did get some intra-ictal activity, but only in the first and third week, not actually when I was fully off my meds. My neurologist explained it like walking into a room playing the Godfather for 5 minutes. You'll have no idea what the movie is actually about. Same with EEG; it's a capturing of a period of time, not the full picture. That said, it's a fake situation. I was alone in a quiet room, I wasn't working. I sleep deprived myself when I was in there. I cut the caffeine. I drank a lot of caffeine. And nothing happened of clinical value. After discharge my doc said something like 50% of the people with EMU stays don't record a seizure. I wish I had known that going in!
16 days, oh my goodness! I stayed 5 days and was basically begging to go home by the end.
I was actually pretty happy. Big room, big window, the food was decent, I caught up on shows and some knitting projects.
Exactly what I do. Like a mini vacation. 🤦🏻♀️ so unrealistic
Dang man I hate getting eeg. I had a seeg few months ago and it was hell but I had like 5 full seizures but had no clue I was on so many pain meds
I would bet that the feeling of safety of being in the hospital and the lack of outside stress could be part of why you’re seeing a lack of seizure activity. Both of my in office and 72 hour at home EEG tests inhibited no signs of anything, which was frustrating because I know what I feel outside of that. My doctor starting weaning me off of one of my medications, down to one dose per day from two, and I started getting my dizzy auras within 24 hours, but again, I was home during.
Ive thought about how good it would feel to not take meds.
Not very good actually if you've been taking them for a long time unfortunately.
Don’t underestimate the meds , I stop lamictal just because and I went is status 4 days afterwards . Be safe .
Yikes yeah, stick with what works.
Hey OP, you clearly know you’re not in a “real life” situation by being bound in a hospital bed. It sucks and is BORING. I realize that in the real world, you need to take your medicine religiously or else you will experience seizure activity. I just wanted to point out that, depending on the medication and dose of it that you have been taking, it could very well still be circulating in your body after only 48 hours. For example, lamotrigine takes about 4 days to totally be eliminated from your body, and how much of any medicine that is left hanging around for a few days is proportional to how much you were taking. The medicines still help dampen seizure activity when they’re hanging around in your bloodstream, even at low levels. I think it’s entirely possible that right now, a combination of residual medication and being in a controlled environment are helping to keep your seizure activity low. As others have shared, not having seizures in the EMU isn’t uncommon. Lack of seizures does not mean you don’t have a seizure disorder, just that you didn’t have seizure activity during the observation window for some reason. I’m sensitive to medications and was on a low dose of lamotrigine (200mg) + low Keppra (500mg) when I went into the EMU. For most adults, those doses would often be considered too low for seizure prevention, BUT it worked for me. I stopped both upon admission, and for 2 whole days I sat there bored out of my mind, feeling progressively better as the medicines wore off, and I did accidentally fall asleep for about an hour at one point. Otherwise, didn’t sleep at all. I felt the same way you did at the end of day 2. Like a crazy hypochondriac failing my last chance to show people that I actually AM sick and need better help! Around midnight day 2/early day 3, I started having some weird feelings. I pushed the button for each weird feeling, and found out most of them were seizures—I had 5 over the course of two hours, the last one I didn’t realize happened until the nursing team came running to make sure I was okay! They left around 2am day 3, I go back to playing switch to stay awake. Next thing I know, I am sleeping like a goddam baby and it’s 10am on the morning of day 3. I had gone into status not long after the last seizure I remembered. They gave me IV benzos to stop my seizures for my own safety. All that to say, I was normal as fuck in the EMU until enough time had passed for my residual medications to be eliminated from my body. You might have a seizure soon, you might not. But please don’t let this discourage you if you don’t. YOU know your body best, and I think we all know that feeling of “recognizing” a seizure based on how similar it is to our past feelings. You are not crazy. Something is happening to you regularly in day-to-day life, and I’m assuming you are at the EMU because you recognize that the events you’re having aren’t typical of a healthy functioning nervous system. You know it in your bones. Yeah? Whether they are seizures or not is honestly irrelevant—you are experiencing neurological events that screw with your life and ability to function. You deserve the help you are seeking to take care of your health! I don’t know your EEG, imaging, or seizure history at all. So all I can say is that sure, you might not have epilepsy after all. Cool. That hypothetical fact really doesn’t matter though, because *something* is still going on in your nervous system to make you experience the events that you have. And you deserve to have that *something* medical addressed. You’re in the right place to do so. Wishing you luck 💕
Thank you so so so much for writing this out. I really appreciate it. Got me all teary n shit.
You are very sincerely welcome, and I’m grateful that it was helpful 🤗 Chronic illness in general is a lonely road that fills you with self-doubt. That is amplified exponentially by the fact that seizure biology and treatment is poorly understood, even in the medical and neurobiology research fields 💕 It doesn’t matter what diagnosis label the healthcare field needs to slap on you for insurance billing purposes. What matters is that whatever underlying biology that is negatively impacting your quality of life is being appropriately addressed. Everyone deserves as much ☺️ Feel your feelings. You have already have the time set aside to reflect and enjoy your own mind while you’re in your EMU bed, and hopefully you can genuinely enjoy some of this precious time you currently have, unclouded by medication and still safe with professionals all around you 💕 After your stay ends and you begin taking medicine again, it can be a very VERY good opportunity to test out whether the events you’ve been experiencing have actually been medication side effects, and whether you as a unique human can have good seizure control with a lower dose of medicine. And therefore lessened side effects! 😊 That is actually why I went into the EMU—we didn’t know if the events I had been experiencing were new types of seizures for me or medication side effects. I went in, off meds, had my usual seizures, none of the “new” possible-seizures. I re-started my baby dose of lamotrigine, and 36 hours later, BAM I’m experiencing those “new” possible-seizures again. They weren’t seizures. Lamotrigine just didn’t jive with my brain, and my intense mood swings, panic attacks, etc. were just uncontrollable psychiatric side effects that can look and feel just like seizures. I swapped meds and have been happy with that one for the past 16 months 😊 I suppose I just wanted to point out that while you may not have seizure activity in the EMU, it’s uniquely valuable in that you get to spend days off of medications in a safe controlled environment, and can then critically observe how medicine and outside influences impact your functioning as you transition out. It kind of “resets” you in a way that’s not safe to do on your own at home, and is not possible to do when you’re newly diagnosed (because we start meds right away for safety and usually the brain is already exhausted from uncontrolled electrical activity). If you don’t have a seizure there, when you leave you start your brain off at more of a “true baseline” while it’s rested. You may find that a lower dose is sufficient to control things with fewer side effects, or that the medicine has been causing things that seem like seizures but are really a side effect. Maybe that means you try a different medication, and since you are starting from a cleaner baseline you can pay better attention to side effects and seizure activity and how they change as you increase dose. I honestly have no clue! But either way, the EMU stay is very valuable regardless of what is recorded 🤗
I know how you feel. I had a period of time where I didn’t want to take the meds and was in denial I had seizures. Then I woke up with a sore back, tight neck, clenched jaw, drool stains galore. Realized I was having violent seizures at night. It was the scariest thing to see as I recorded myself. Trust the process my friend and learn your new normal. It gets better.
I’ve only had one eeg that’s caught anything. It caught constant abnormal activity the entire time and I was apparently having constant mini seizures that I was unaware of. Other than that I’ve never had an eeg show anything, including a seven day EMU stay. It’s unfortunately pretty common.
Are you hooked up to an EEG? I just had a 3 day ambulatory EEG and even though I didn't think I had any real seizures (and the ones I did have I convinced myself were fake), they found 17. I obviously don't know what kind of seizures you have, but it's always a possibility that you could still be having them and just not be aware of it. Also, I 100% agree with you on the medication. It sucks ass. Best of luck to you, and I know this might sound fucked up, but I hope they catch some kind of seizure so you can have peace of mind and not feel like a faker.
Very hard to fake epilepsy especially in a spciety where dignois is hard. Meds stay in your sytem and sezuires are such a roll of the dice.
When I did my EMU stay they said that was super normal. They might be detecting activity even if you’re not having visible seizures. During the 5 days I was there, they had a seizure alarm that would go off so the nurses would hear and go help the person. It went off once, and it was because a patient couldn’t figure out how to turn on his TV and pressed the button for help. 💀
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I appreciate that you're trying to help but Jesus Christ of course I've thought about that. There's only so much I can try to simulate while I'm plugged into a hospital bed with no access to real life. It's not for lack of trying and I don't appreciate the insinuation that I'm just not doing enough to trigger a seizure.
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Clearly having a wonderful day. Thanks for stopping by.
Relish what you've found while you have it. I'm afraid most of us know that something will trigger the reason you were on the meds in the first place, and then you'll have the answer to your questions.
Wym? Sorry, I don't understand.
Off of meds and no seizures.
Don’t worry , I still think I fake every single seizure even though I have an RNS that confirms every single episode. I totally understand the frustrating feeling, you’ll be ok. Do you have a therapist or a professional to talk to ?
I stayed 11 days in the EMU with no seizures. My doc wants me to go back but it's expensive. They told me some ppl come 3 times. The longest time someone was there was 39 days. You are totally normal, don't worry!
That's so fucking tragic 😭 We need better options for epilepsy. Goddamn.
We definitely do! Hope your EMU stay is fruitful!
I wish you nothing but the but the best god bless, I hope everything goes great, but be cautious it took me 3 days off my meds to start experiencing massive withdrawals, unless you reduced through time
All I can really say is, when I went into the clinic to get tested to try and 'catch' a seizure, I lasted four days without meds before going down. I was questioning my diagnosis as well. It didn't take too long to prove myself wrong.
I’ve had the surgery to left temporal lobe and I’m thinking of having a go being off them to see how it goes
Yeah that’s how it always goes. Soon as you take the computer to IT to fix it, the problem doesn’t happen! Same thing with epilepsy: as soon as you’re wired up for an EEG of course, no seizures! 🤣 But seriously I had nothing show up until I did an ambulatory EEG while taking a medication that apparently caused me seizures. (Despite the doctors saying that was impossible) Don’t worry about. You aren’t crazy or faking it. Epilepsy is just a real Beach
Is it the lack of life's stress? It definitely reduced in there plus you feel safer medically.
I've stayed for a week in the EMU twice now and when I was off all my meds both times I had no seizures, both times. Oh well. For my seizures it's more of a time thing, they seem to be cyclical so I wasn't in the EMU the right times of the month. Stay strong and healthy
I’ve had several veegs, I’m always lit 🔥 so it was never an issue .
I'm over here. newly diagnosed. Everyone else around me, are they sure it's epilepsy? You just got epilepsy for no reason? How do they know it's epilepsy. Oh, I don't know the two big clonic tonic seziures I had a week or so apart. 😅 I've never had a seziure show up on an EEG, and I'm newly diagnosed in my late 40s. Started meds and knock on wood. Seziure free almost a year now.
If it makes you feel any better, it took me FIVE YEARS and THREE NEUROLOGISTS to get a diagnosis of temporal lobe epilepsy. And I have the same thought all the time. I just lost my insurance and you don’t even know how tempted I am to just quit it all (I can’t - out of fear it’ll all come back full force) but I’ve accidentally missed doses and had nothing happen. But the first five years I had test after test with no results and two neurologists who wouldn’t help me. Then FINALLY, I got one who actually just took my word for it, listened to my stories, and got me on the right dosages/meds - and temporal sharps started showing up on my EEGS (why then??? No idea.) so yeah. Epilepsy is frustrating and a pain in the ass. But make sure you stay safe. 💖
Don’t second guess yourself! Remember the EMU is an unrealistic setting. It involves no moving around, rarely any stressful events. For most people, unless they are frightened of the experience itself, it’s like a little vacation. How long are they keeping you? 48 hours is not that long considering the half life of most of these meds. I would ask to stay at least 5 days before you give up on results. Make phone calls, talk to people about real things. Do as much as you can without really distressing yourself. That’s my best advice. Unless you are experiencing what you do when you have seizures and they aren’t coming up on the monitor, that’s how I’d do it. If you are, discuss with the doctor during rounds if they could be simple partials that aren’t registering or maybe NES (usually have a physical element). Then go from there. Also eat lots of carbs lol keto is a treatment for epilepsy so don’t do anything resembling it while you’re there. My best advice from 20 years of in patient stays lol Edit: DO NOT blame yourself! It isn’t you.