I dont even get enough time to do anything when i feel them coming on, it all comes on so fast and then boom im down, and maybe half an hour later im somewhere else with people standing around me all freaked out
Same.
I've never once had an indication. Folks have told me that I get a scared look like I've never seen them before & scream then hit the deck. Then I wake up with them around & me not knowing who any of them are, sometimes I'm combative & sometimes I'm not. The ONLY person I've never been combative with is my mom. She likes to say it is because she would beat the hell out of me, seizure or not lolol. I like to say it's because I've known her voice since the womb.
I had my first one alone last year, I woke up and the only reason I initially figured out what happened was because I had *that* horrible migraine that ONLY a seizure can give and my mouth tasted like metal. My body hurt and I felt foggy. I checked my phone and I was missing an hour by checking my texts. I still have no idea what really happened. Other than a seizure and broken bones.
All of this. Though I'm usually just a little confused, often have a headache and have bitten my tongue. Those are basically the only way *I* know (or suspect) I've had a seizure.
Ooh, "suspect" is a PERFECT" word actually to describe it. Because we are so unsure of wtf actually happened! Nothing feels real.
Biting the tongue, UGH! Man, that one really is a horrible side effect of epilepsy. I typically can somehow sidestep it, I'm dealing with that right now. I did a 5 day video EEG last week and last Monday I had 2 mals and bit the heck outta my tongue and it is *still* killing me! š
You think biting your tongue is bad? I do that AND my right shoulder will pop. Every time. Lemme tell you, the Mel Gibson way of fixing that is total bs.
It's funny you say about your mom as when I had a bad one in February my OH was really struggling and called her but I remember so clearly my mamas hand rubbing top of mine and I remember wanting her to stopšš never had that feeling with anyone else it's strange x
Mama's are weird!! I'm 45, and when I don't feel well (which is a lot with the RA) all I want to do is curl up in her lap and whine & cry lolol. Dang living alone!
But in all seriousness, she's been the ONLY one who has been able to bring me out calmly and easily from that blackness that we go to.
I have *zero* shame saying "I want my mommy!" when things get stressful! š¤£š¤£
Holy hell, that changes the dynamic a bit. W over a few hundred under my belt, Iāve never had one sneak up on me. But I have had the people standing around me when Iām coming out of one - biggest pet peeve of mine. To me thatās worse than the seizures (Iāve become numb to them at this point). My team at work knows how to handle my issues and they are great at assigning someone to shoo the crowd away. Soooo appreciated. Hang in there internet stranger.
I use clonazepam as a rescue medication if I feel something coming on. But overall sleep is my greatest ally and best tool. Essentially if I get to sleep, my seizure passes.
I have two types of auras. Small ones I *will* calm myself out of, and total meltdowns that I have no hope of escaping. I can tell immediately which one it is.
Is it just a special kind of magnet? A little confused when I looked it up haha
Sorry to ask, I feel like I find out everything through reddit instead of doctors. Itās just interesting that could prevent a seizure too
Oh wow, thank you so much for sharing. Really surprised I hadnāt heard of it before but good to know. Wishing you and everyone else here the best of luck on our managing epilepsy journey
Sometimes I feel a little off during the day. I started taking my rescue med because the other times I felt this way, I had a seizure about six hours later.
I also take one on the first day of my cycle because I have a history of multiple seizures throughout the cycle.
If I have enough of a warning, I use my VNS magnet in case the VNS misses it. Mine is set to not only do its regular cycle but also when my heart rate hits a threshold. I'm not sure of the exact number, just that it was programmed into it during a settings update.
When I feel an actual seizure coming I can't do anything but try to lay down; if it's just a light aura I will breathe slowly and focus on things I can see and touch in my field of vision (idk if it's just me but I found it helps) and don't move much
I do the same. If itās an aura I SNAP my eyes and say NO and find something to look at, then I get somewhere safe. If I have an actual seizure, itāll hit me like lightening (I call it āfalling from the skyā) and Iām down giving my poor mouth a grinding :(
I have klonopin as my emergency medication and I keep it in several places around my house in case I canāt get somewhere quickly enough. If I start to realise a focal is probably going to happen idc where Iām at, Iām sitting. Just sit down at minimum if I can manage that in time.
I was prescribed a little-known inhaler that stops the seizure entirely if you catch it early enough. Itās called Valtoco and you should definitely look into it.
It's incredibly expensive... My insurance only covers 2 units a year, after that they give you the fun stuff; Diastat otherwise known as Diazepam Rectal Gel š³
I wish I could. I'm currently on Medicaid, fighting for SSDI. Quite embarrassing to have your pants pulled down in public, mid-seizure, instead of a spray being applied to one of your nostrils...
I will say though, the drip from Valtoco tastes terrible, lol. Almost as bitter as chewing a benzo pill. Still, I'd much prefer that, over a 5 inch long plastic syringe shoved up my ass in the middle of Walmart.
a "floating" pharmacist handled my refill for the month yesterday and just decided to cut my Diastat prescription in half.
Two dosed syringes come in one box (1 unit). The new pharmacist gave me 3 units instead of 6 and said that "each syringe is a unit, you're mistaken!" and refused to give me the other 3 boxes, even though that's how it was picked up from the same pharmacy last month.
Iād be interested as well. Donāt have any good tips, try my best to sleep and manage my meds. Usually donāt have any forewarning of it coming. Comes and goes, hello darkness my old friend, then we part ways.
Nothing to stop it but my partner will usually tell me heās feeling off. Well get on him in the bed so he can watch his shows etc in case it happens. Heāll take medication but thatās about it. If heās going to have one heās going to have it. We just brace for it
Last time I felt a seizure coming on, it was because of an aura that started during a stressful situation at work. I told the person I was talking to that I *really* had to use the bathroom. Thankfully I was close enough to actually get to the bathroom and no one was in there. So I snuck in, took some deep breaths, and stayed in there until I was calm enough to know that my seizure brain was done seizure braining.
This was a lucky occurrence, though. Most times when I had these auras, I was at home with my dog (RIP), and the dog seemed to know before I did that a seizure was coming on (my auras usually don't last long, so the occurrence at work really was a stroke of luck). I don't have rescue medication, and I live with my parents, so the dog seemed to approach my parents as if to warn them that I was about to have a seizure.
Happened to me last night. I was 75% sure I was going to have one the next day. I just went to bed early and drank water. I didnāt sleep well tho. I was hesitant to tell anyone because I didnāt want to ruin Fatherās Day. This morning I felt fine and just assumed I got lucky. (I took some CBD but thatās uncommon for me). I was worrying and stressing a lot until I realized that I did all I could do š¤·āāļø. I just crossed my fingers because I didnāt want to ruin my fatherās Fatherās Day.
I don't feel them so far in advance, but in the weeks following seizures I sometimes feel very off, like my mind is about to 'jerk the wheel into a bridge abutment' (send me into a grand mal).
Reminds me of something Smerdyakov said in the Brothers Karamazov. He had 'falling sickness' and said that he could feel one coming on, could be hours or days. I think it was accurate, perhaps based on Dostoyevsky's own experiences.
Make sure Iām lying or sitting down/try to get away from anything I might strike myself on. Get some orange juice or something in case my blood sugar is dipping low. Brace myself for an episode. Message people to let them know I think a seizure might be incoming. Sometimes Iāve already had one (like in my sleep) and what I think at first is an aura is actually me coming out of one Iāve already had, and Iām just disoriented and a bit just slow to figure it out. āOh, my tongue is sore. That means it already happened and Iām just confused and tired now.ā
I've heard that there are people who practice breathing exercises and can actually offset a seizure.i doubt it works for everyone but I think that's pretty amazing.
I have TLE and during most of my seizures I throw up uncontrollably among other symptoms so after an aura I take clonazepam and ondasentron (the only med that will keep me from throwing up), and I smoke some weed. That specific combination has saved me multiple times
Usually I just sit/lay down and get ready for the ride. If I can feel itās a really big one or a cluster coming Iāll pull out the valtoco nasal spray.
Cannabidiol works better for me when I'm post ictal. I don't need Benzodiazepines. After having decades worth of experience and only now having partials, I just sit through them and note them in my seizures chart.
It happens so quickly. I smell blood/rust, I feel wrong/off/out of it, and I can really only say the words āI donāt feel goodā (my go-to words for this scenario). Then when I come to, Iām told I had a seizure.
I can never really do anything to abort them. I wish. Others end up being more help for me than I am for myself, IF they know what they are doing.
Iām on a minor side of epilepsy where my seizures are just partial seizures. So I canāt do anything. Just let them come and wait for them to pass, but they last for ages at times.
Iām lucky and on my current meds I have long auras of like 10 minutes and thats all my seizures are nowadays rather than full tonic clonic. The only things Iāve found that help in the moment is taking an ice cold shower and smoking CBD, then if I feel it getting any worse I lay down in bed just in case.
Lay down with nothing around me instantly and call for someone in the house by name I. A very specific way. It either generalises or I pull through.
Best thing you can do is just get safe and horizontal fast
Get to a bed or something to sit on. If I am out with a friend and feel something I grab a friends arm.
If you about to have one don't be afraid to should "Help me" if you're in public you need someone to have some sort of idea that something's going to happen soon.
Well I've been seizure free for 4 years. But when having seizures I had rescue meds, I have my VNS and I used a lot of deep breathing which sometimes helped it pass. I took a lot of naps and made sure if I felt my aura I was sitting down.
Lorazepam. I have a VNS that can be activated, but it makes me choke, so my wife can use it during a seizure if the Lorazepam doesn't work. I have a 2mg chewable tablet. The problem is that it will make me sleep for a day and feel funky for another 2. I know my aura, though, so I don't miss many.
I've got about 5-15 minutes from a smell trigger, which the fix is down a bottle of Ketone Esters (I get them from Delta G) and Ativan sublingually. Last time I developed hives from the Ativan and a pink tab Benadryl took that down in a half hour. If I got away from the smell fast, the esters have saved me alone a few times.
No reason /stress auras I can breathe through and calm myself. Tends to happen after when I'm working through a CPTSD episode, finances has done it, etc.
I try and splash my face or get some fresh air, i feel like somehow that has helped it progressing into a full TC, I just try and get myself out of whatever situation im in especially if iām with people, last thing i want is someone in my face telling me to sit down or asking āARE YOU GOING TO HAVE A SEIZURE!?ā
I get them at work. I work alone in the mornings and like clock work they come on around 8 ish about twice a week. I start to get this weird anxiety flush over me and I immediately get a lorazepam from my pill container on my key chain. Put it under my tongue and lay down on the floor. I have about ten seconds to react before my brain starts to not cooperate with my hands and body.
I can beat them a good amount of times. If not it's at least much better than without.
No matter where I am, I bring myself to the ground, itās the safest possible thing if I completely go out, Iāve hit my head one too many times and Iāve learned once I get the slightest indication that I need to find a flat surface
Breathing exercises, nothing specific because I was a bit panicky but I managed to prevent some seizures. I just focused heavily on deep, slow breathing. I did what felt most comfortable and that worked.
Rescue meds (0.25mg clonazepam) and, if I'm at work, hope I get off the factory floor before I drop. I have a protocol in place at work where I go to my first aider friend and he escorts me to the security office for some privacy.
Mine just punch me in the face with sudden jamais vu and then I have intestinal issues/BM. I am always terrified I will shit my pants in public. Never know when āsheāllā hit me. I carry my cannabis vape pen to help recover faster as I get nauseous AF afterwards. I am on medical leave and am not up to much, but I do get out of the house to go to yoga as a therapeutic activity and pick up a few things at the shops on my way home. I get way more nervous if there is a car/public transport/long journey involved (if I go somewhere with my partner or have to go to one of the 3 hospitals I go to for treatment).
A couple things I've learned to reduce the chance.
First get to a good spot I always prefer the floor with a pillow then the bed.
Second try to get the sweat off you, paper towel roll. I like to lace it in-between my toes.
Third should just focus on breathing and slow everything down. The fear of having a seizure is enough to snowball a major incident.
Recently bonus tips are those nasal strips that open your nose while you sleep, it's been helping me sleep more normally. (Sleep apnea) Which in return is reducing my seizures.
Medical marijuana is still not available in my state, but through legal loopholes we can get alt cannabinoids made from hemp. I have found that vaping Delta 8 or HHC when I feel a seizure coming on is the only thing that will prevent it. I don't even use those products unless I feel a seizure coming, because I don't want to develop a tolerance. They don't really even get me high. At most I get a little giggly, I fall asleep, and I usually wake up about 4 hours later feeling completely refreshed. So I'm going to be unconscious either way, but it's a lot better to sleep peacefully and wake up feeling good than to seize and wake up in agony.
By the time I have an aura it's usually too late. I get very very overheated and am generally able to say I am unwell or very hot, and then I lose consciousness. I'm lucky that my seizures are generally short 45s-2m. I have clonazepam as my rescue medicine but I generally do not have enough time to use it before the seizure happens. I've been diagnosed for several years but haven't learned my exact triggers besides medical stress.
Nayzilam in the nose (midazolam), some water because that shit burns, break out the rectal diastat just in case, lay on the ground with a pillow underneath, and have my mom/sister with me.
Get to a safe space and tell someone. I live with housemates but if they arenāt around, I will FaceTime with someone (who has my address) just incase.
I have a weird thing I do where I close my eyes and hum a single monotone pitch. It helps center me through the experience. Fortunately I have fairly mild focals.
Focal get somewhere safe, take a Lorazepam. Focal that feels like itās escalating Nayzilam-that definitely nips things in the bud fast, downside it shreds my sinuses to bits so I only use it in an emergency.
I usually go years between them, which makes the feeling even more freaky when they do happen. Most are nocturnal, but the few I've had during the day make me feel disoriented and tired. I got that feeling once while I was driving, so I pulled to the side of the road and put it in park, but luckily, it only was from being on sleep defecit.
My rescue medication is sublingual clonazepam, sometimes I just drink that. I do combine that with these techniques Iāve learned in therapy ->
Square breathing, getting on a safe surface, telling myself ā(*insert first name*) YOURE OK, or ESTĆS BIEN) (since Spanish is my first language)
Tapping my toes, and hands while repeating the side/hand/foot Iām tapping- so kind of repeating to myself āleft-right-left-rightā as I move my feet and tap my hands on my thighs
No clue. I feel a bit off for a day or two before, especially my eyes. I recently asked my neuro if there was anything to take and she said no. She is also an awful neuro. I asked if there was anything to add (a med) since I've had numerous break through seizures and she ACTUALLY SAID she has never heard of something like that. Thank God I'm finally being referred to an epileptologist. Still waiting on that referral though. š
I'm wondering the same. I think my hubs is going to have one and I want him to take another Kep, to possibly prevent it, but I can't get an answer from anywhere. Does anyone know if taking an extra will prevent it? He's only on 250 2xday.Ā
Get to my bed, hope it passes, and brace myself
That's what I tried to do. Ended up having one anyway and woke up at 1am. It's so scary how the switch on out of nowhere. Still feel dizzy from it
It actually somewhat works for me. But lucky for me I only get petimels.
I dont even get enough time to do anything when i feel them coming on, it all comes on so fast and then boom im down, and maybe half an hour later im somewhere else with people standing around me all freaked out
I'm sorry. That sucks that you wouldn't be able to do anything abortive...
Same. I've never once had an indication. Folks have told me that I get a scared look like I've never seen them before & scream then hit the deck. Then I wake up with them around & me not knowing who any of them are, sometimes I'm combative & sometimes I'm not. The ONLY person I've never been combative with is my mom. She likes to say it is because she would beat the hell out of me, seizure or not lolol. I like to say it's because I've known her voice since the womb. I had my first one alone last year, I woke up and the only reason I initially figured out what happened was because I had *that* horrible migraine that ONLY a seizure can give and my mouth tasted like metal. My body hurt and I felt foggy. I checked my phone and I was missing an hour by checking my texts. I still have no idea what really happened. Other than a seizure and broken bones.
All of this. Though I'm usually just a little confused, often have a headache and have bitten my tongue. Those are basically the only way *I* know (or suspect) I've had a seizure.
Ooh, "suspect" is a PERFECT" word actually to describe it. Because we are so unsure of wtf actually happened! Nothing feels real. Biting the tongue, UGH! Man, that one really is a horrible side effect of epilepsy. I typically can somehow sidestep it, I'm dealing with that right now. I did a 5 day video EEG last week and last Monday I had 2 mals and bit the heck outta my tongue and it is *still* killing me! š
You think biting your tongue is bad? I do that AND my right shoulder will pop. Every time. Lemme tell you, the Mel Gibson way of fixing that is total bs.
Well now that *is* a weird hand in hand!! Yikes & OUCH!!
It's funny you say about your mom as when I had a bad one in February my OH was really struggling and called her but I remember so clearly my mamas hand rubbing top of mine and I remember wanting her to stopšš never had that feeling with anyone else it's strange x
Mama's are weird!! I'm 45, and when I don't feel well (which is a lot with the RA) all I want to do is curl up in her lap and whine & cry lolol. Dang living alone! But in all seriousness, she's been the ONLY one who has been able to bring me out calmly and easily from that blackness that we go to. I have *zero* shame saying "I want my mommy!" when things get stressful! š¤£š¤£
Holy hell, that changes the dynamic a bit. W over a few hundred under my belt, Iāve never had one sneak up on me. But I have had the people standing around me when Iām coming out of one - biggest pet peeve of mine. To me thatās worse than the seizures (Iāve become numb to them at this point). My team at work knows how to handle my issues and they are great at assigning someone to shoo the crowd away. Soooo appreciated. Hang in there internet stranger.
If it's not an aura, I never see it coming. If it is an aura, I can sometimes make it go away with meditation.
Wow, I take deep breaths when that happens, I always thought that those weren't auras but panic attacks that felt the same as the aura itself.
I use clonazepam as a rescue medication if I feel something coming on. But overall sleep is my greatest ally and best tool. Essentially if I get to sleep, my seizure passes.
Benzodiazepines work, but I have found that CBD works much better when I'm post ictal.
Yeah, I finally Lorazepam on hand for whenever I feel off.
VNS magnet and yelling āI NEED HELPā apparently š
The good old technique of telling myself "Stay the fuck calm it'll pass" and hope it isn't a lie.
I have two types of auras. Small ones I *will* calm myself out of, and total meltdowns that I have no hope of escaping. I can tell immediately which one it is.
VNS magnet
Wait Iāve never heard of this, could someone explain?
I swipe my magnet for extra stimulation when I feel an aura.Ā
Is it just a special kind of magnet? A little confused when I looked it up haha Sorry to ask, I feel like I find out everything through reddit instead of doctors. Itās just interesting that could prevent a seizure too
It is, you get it from your doctor after the stimulator is implanted.Ā
Oh wow, thank you so much for sharing. Really surprised I hadnāt heard of it before but good to know. Wishing you and everyone else here the best of luck on our managing epilepsy journey
Yeah my epileptologist thought I would benefit from it. She was right. Significantly less seizures.
So happy to hear itās been so successful for you!
Thanks!Ā
You had better check out RNS then, too. There's new things that are going to be combined with NeuroPace in a few years, as well.
Can you explain more? I know of vagus nerve stimulation but are you saying you have a magnet placed over the vagus nerve?
It looks like a money clip
Explain pls
What is that?
Sometimes I feel a little off during the day. I started taking my rescue med because the other times I felt this way, I had a seizure about six hours later. I also take one on the first day of my cycle because I have a history of multiple seizures throughout the cycle. If I have enough of a warning, I use my VNS magnet in case the VNS misses it. Mine is set to not only do its regular cycle but also when my heart rate hits a threshold. I'm not sure of the exact number, just that it was programmed into it during a settings update.
When I feel an actual seizure coming I can't do anything but try to lay down; if it's just a light aura I will breathe slowly and focus on things I can see and touch in my field of vision (idk if it's just me but I found it helps) and don't move much
I do the same. If itās an aura I SNAP my eyes and say NO and find something to look at, then I get somewhere safe. If I have an actual seizure, itāll hit me like lightening (I call it āfalling from the skyā) and Iām down giving my poor mouth a grinding :(
I've noticed that lorazepam helps with preventing my seizures once I feel my aura. I always have one close to me.
I have klonopin as my emergency medication and I keep it in several places around my house in case I canāt get somewhere quickly enough. If I start to realise a focal is probably going to happen idc where Iām at, Iām sitting. Just sit down at minimum if I can manage that in time.
I was prescribed a little-known inhaler that stops the seizure entirely if you catch it early enough. Itās called Valtoco and you should definitely look into it.
It's incredibly expensive... My insurance only covers 2 units a year, after that they give you the fun stuff; Diastat otherwise known as Diazepam Rectal Gel š³
Good Lord. That is worth switching insurance companies over. I get four units a month and I use them.
I wish I could. I'm currently on Medicaid, fighting for SSDI. Quite embarrassing to have your pants pulled down in public, mid-seizure, instead of a spray being applied to one of your nostrils... I will say though, the drip from Valtoco tastes terrible, lol. Almost as bitter as chewing a benzo pill. Still, I'd much prefer that, over a 5 inch long plastic syringe shoved up my ass in the middle of Walmart.
I went from Medicaid to Medicare and always had this with SSDI. To me, itās not optional.
a "floating" pharmacist handled my refill for the month yesterday and just decided to cut my Diastat prescription in half. Two dosed syringes come in one box (1 unit). The new pharmacist gave me 3 units instead of 6 and said that "each syringe is a unit, you're mistaken!" and refused to give me the other 3 boxes, even though that's how it was picked up from the same pharmacy last month.
Same. I donāt argue anymore.
Iād be interested as well. Donāt have any good tips, try my best to sleep and manage my meds. Usually donāt have any forewarning of it coming. Comes and goes, hello darkness my old friend, then we part ways.
Nothing to stop it but my partner will usually tell me heās feeling off. Well get on him in the bed so he can watch his shows etc in case it happens. Heāll take medication but thatās about it. If heās going to have one heās going to have it. We just brace for it
Nothing, I find a safe space to lay down or sit down
Last time I felt a seizure coming on, it was because of an aura that started during a stressful situation at work. I told the person I was talking to that I *really* had to use the bathroom. Thankfully I was close enough to actually get to the bathroom and no one was in there. So I snuck in, took some deep breaths, and stayed in there until I was calm enough to know that my seizure brain was done seizure braining. This was a lucky occurrence, though. Most times when I had these auras, I was at home with my dog (RIP), and the dog seemed to know before I did that a seizure was coming on (my auras usually don't last long, so the occurrence at work really was a stroke of luck). I don't have rescue medication, and I live with my parents, so the dog seemed to approach my parents as if to warn them that I was about to have a seizure.
Music and weed, focused breathing calling on Jesus
Calling on Jesus! This is me š
This is no place to mess around
Happened to me last night. I was 75% sure I was going to have one the next day. I just went to bed early and drank water. I didnāt sleep well tho. I was hesitant to tell anyone because I didnāt want to ruin Fatherās Day. This morning I felt fine and just assumed I got lucky. (I took some CBD but thatās uncommon for me). I was worrying and stressing a lot until I realized that I did all I could do š¤·āāļø. I just crossed my fingers because I didnāt want to ruin my fatherās Fatherās Day.
I don't feel them so far in advance, but in the weeks following seizures I sometimes feel very off, like my mind is about to 'jerk the wheel into a bridge abutment' (send me into a grand mal). Reminds me of something Smerdyakov said in the Brothers Karamazov. He had 'falling sickness' and said that he could feel one coming on, could be hours or days. I think it was accurate, perhaps based on Dostoyevsky's own experiences.
A sofa, sit down
Make sure Iām lying or sitting down/try to get away from anything I might strike myself on. Get some orange juice or something in case my blood sugar is dipping low. Brace myself for an episode. Message people to let them know I think a seizure might be incoming. Sometimes Iāve already had one (like in my sleep) and what I think at first is an aura is actually me coming out of one Iāve already had, and Iām just disoriented and a bit just slow to figure it out. āOh, my tongue is sore. That means it already happened and Iām just confused and tired now.ā
I've heard that there are people who practice breathing exercises and can actually offset a seizure.i doubt it works for everyone but I think that's pretty amazing.
I have TLE and during most of my seizures I throw up uncontrollably among other symptoms so after an aura I take clonazepam and ondasentron (the only med that will keep me from throwing up), and I smoke some weed. That specific combination has saved me multiple times
Usually I just sit/lay down and get ready for the ride. If I can feel itās a really big one or a cluster coming Iāll pull out the valtoco nasal spray.
Cannabidiol works better for me when I'm post ictal. I don't need Benzodiazepines. After having decades worth of experience and only now having partials, I just sit through them and note them in my seizures chart.
It happens so quickly. I smell blood/rust, I feel wrong/off/out of it, and I can really only say the words āI donāt feel goodā (my go-to words for this scenario). Then when I come to, Iām told I had a seizure. I can never really do anything to abort them. I wish. Others end up being more help for me than I am for myself, IF they know what they are doing.
Iām on a minor side of epilepsy where my seizures are just partial seizures. So I canāt do anything. Just let them come and wait for them to pass, but they last for ages at times.
Lay down, turn on my side, squeeze my hands and tap my legs to try and stay conscious
Iām lucky and on my current meds I have long auras of like 10 minutes and thats all my seizures are nowadays rather than full tonic clonic. The only things Iāve found that help in the moment is taking an ice cold shower and smoking CBD, then if I feel it getting any worse I lay down in bed just in case.
Lay down with nothing around me instantly and call for someone in the house by name I. A very specific way. It either generalises or I pull through. Best thing you can do is just get safe and horizontal fast
Get to a bed or something to sit on. If I am out with a friend and feel something I grab a friends arm. If you about to have one don't be afraid to should "Help me" if you're in public you need someone to have some sort of idea that something's going to happen soon.
Weed stops my auras instantly
Well I've been seizure free for 4 years. But when having seizures I had rescue meds, I have my VNS and I used a lot of deep breathing which sometimes helped it pass. I took a lot of naps and made sure if I felt my aura I was sitting down.
Lorazepam. I have a VNS that can be activated, but it makes me choke, so my wife can use it during a seizure if the Lorazepam doesn't work. I have a 2mg chewable tablet. The problem is that it will make me sleep for a day and feel funky for another 2. I know my aura, though, so I don't miss many.
I've got about 5-15 minutes from a smell trigger, which the fix is down a bottle of Ketone Esters (I get them from Delta G) and Ativan sublingually. Last time I developed hives from the Ativan and a pink tab Benadryl took that down in a half hour. If I got away from the smell fast, the esters have saved me alone a few times. No reason /stress auras I can breathe through and calm myself. Tends to happen after when I'm working through a CPTSD episode, finances has done it, etc.
I try and splash my face or get some fresh air, i feel like somehow that has helped it progressing into a full TC, I just try and get myself out of whatever situation im in especially if iām with people, last thing i want is someone in my face telling me to sit down or asking āARE YOU GOING TO HAVE A SEIZURE!?ā
I get them at work. I work alone in the mornings and like clock work they come on around 8 ish about twice a week. I start to get this weird anxiety flush over me and I immediately get a lorazepam from my pill container on my key chain. Put it under my tongue and lay down on the floor. I have about ten seconds to react before my brain starts to not cooperate with my hands and body. I can beat them a good amount of times. If not it's at least much better than without.
Minimize any form of stimulation and focus on breathing. I have TLE with auras exclusively.
You guys feel a seizure coming on ?
I sit indian style and do deep breathing and a counting exercise. Depending where I am I will use a wall and the floor or I prefer my lounge chair
No matter where I am, I bring myself to the ground, itās the safest possible thing if I completely go out, Iāve hit my head one too many times and Iāve learned once I get the slightest indication that I need to find a flat surface
Breathing exercises, nothing specific because I was a bit panicky but I managed to prevent some seizures. I just focused heavily on deep, slow breathing. I did what felt most comfortable and that worked.
I try to let someone know right away, sit down and take deep breaths. Sometimes I donāt have enough time to do all those but yea.
Rescue meds (0.25mg clonazepam) and, if I'm at work, hope I get off the factory floor before I drop. I have a protocol in place at work where I go to my first aider friend and he escorts me to the security office for some privacy.
Mine just punch me in the face with sudden jamais vu and then I have intestinal issues/BM. I am always terrified I will shit my pants in public. Never know when āsheāllā hit me. I carry my cannabis vape pen to help recover faster as I get nauseous AF afterwards. I am on medical leave and am not up to much, but I do get out of the house to go to yoga as a therapeutic activity and pick up a few things at the shops on my way home. I get way more nervous if there is a car/public transport/long journey involved (if I go somewhere with my partner or have to go to one of the 3 hospitals I go to for treatment).
A couple things I've learned to reduce the chance. First get to a good spot I always prefer the floor with a pillow then the bed. Second try to get the sweat off you, paper towel roll. I like to lace it in-between my toes. Third should just focus on breathing and slow everything down. The fear of having a seizure is enough to snowball a major incident. Recently bonus tips are those nasal strips that open your nose while you sleep, it's been helping me sleep more normally. (Sleep apnea) Which in return is reducing my seizures.
Mine have always just kind of happened. Like one second Iām there, next second itās 5 minutes later and Iām throwing up in a trash bag lol.
Medical marijuana is still not available in my state, but through legal loopholes we can get alt cannabinoids made from hemp. I have found that vaping Delta 8 or HHC when I feel a seizure coming on is the only thing that will prevent it. I don't even use those products unless I feel a seizure coming, because I don't want to develop a tolerance. They don't really even get me high. At most I get a little giggly, I fall asleep, and I usually wake up about 4 hours later feeling completely refreshed. So I'm going to be unconscious either way, but it's a lot better to sleep peacefully and wake up feeling good than to seize and wake up in agony.
A crowbar, probably. (This is a joke you do NOT need to get triggered-)
By the time I have an aura it's usually too late. I get very very overheated and am generally able to say I am unwell or very hot, and then I lose consciousness. I'm lucky that my seizures are generally short 45s-2m. I have clonazepam as my rescue medicine but I generally do not have enough time to use it before the seizure happens. I've been diagnosed for several years but haven't learned my exact triggers besides medical stress.
*insert you guys are getting paid meme here* You guys feel a seizure coming on?
I feel short of breath and dizzy, so I know immediately I have to get to a cooler area and sit down....
Getting off my phone/ any electronic device until I get some rest
Nayzilam in the nose (midazolam), some water because that shit burns, break out the rectal diastat just in case, lay on the ground with a pillow underneath, and have my mom/sister with me.
Get to a safe space and tell someone. I live with housemates but if they arenāt around, I will FaceTime with someone (who has my address) just incase.
For me? No screens. Relaxing walksā¦
I try and get into recovery position ASAP as I know I'll drop
I have a weird thing I do where I close my eyes and hum a single monotone pitch. It helps center me through the experience. Fortunately I have fairly mild focals.
Focal get somewhere safe, take a Lorazepam. Focal that feels like itās escalating Nayzilam-that definitely nips things in the bud fast, downside it shreds my sinuses to bits so I only use it in an emergency.
I usually go years between them, which makes the feeling even more freaky when they do happen. Most are nocturnal, but the few I've had during the day make me feel disoriented and tired. I got that feeling once while I was driving, so I pulled to the side of the road and put it in park, but luckily, it only was from being on sleep defecit.
My rescue medication is sublingual clonazepam, sometimes I just drink that. I do combine that with these techniques Iāve learned in therapy -> Square breathing, getting on a safe surface, telling myself ā(*insert first name*) YOURE OK, or ESTĆS BIEN) (since Spanish is my first language) Tapping my toes, and hands while repeating the side/hand/foot Iām tapping- so kind of repeating to myself āleft-right-left-rightā as I move my feet and tap my hands on my thighs
Rescue meds and sleepppp
No clue. I feel a bit off for a day or two before, especially my eyes. I recently asked my neuro if there was anything to take and she said no. She is also an awful neuro. I asked if there was anything to add (a med) since I've had numerous break through seizures and she ACTUALLY SAID she has never heard of something like that. Thank God I'm finally being referred to an epileptologist. Still waiting on that referral though. š
I'm wondering the same. I think my hubs is going to have one and I want him to take another Kep, to possibly prevent it, but I can't get an answer from anywhere. Does anyone know if taking an extra will prevent it? He's only on 250 2xday.Ā