I am a recently diagnosed epileptic who is under 24 hour observation for up to 21 days. AMA!
I was diagnosed at 34 years old this past January. I've been through 3 sets of meds that failed to control my seizures. After nearly a severe incident with one of my meds I was set up for the VEEG monitoring at an Epilepsy Monitoring Unit which I am at now. Today is day 6 of possibly 21 and I have to be up for the next 22 hours before I can sleep.
So please ask me anything!
Mods if more proof is needed I can DM later when someone is able to help me (not allowed to stand, move or go poop with out a nurse)
We all have our own separate accounts. This isn't for playing it safe scenario. We all equal fiscal responsibilities, help save money for common goals, but each of us want our own financial independence.
That's super cool, how did you guys meet and get together, how did you all end up agreeing to be together?
My wife and I have pretty much been nonmonogamous since we met. I met our partner on Ok Cupid, we were going to be just friends but clicked really well. When she met my wife the next day they clicked too and it just was.
huh, cool, thanks
No problem! It's becoming more and more common these days. This is our second long term relationship as a triad.
This guy fucks.
Lol, for me one of the side effects of my seizures I get extremely horny. When I have my big seizures it's like being young again.
... but you're only 34
Yeah but a 34 year old boner is not the same as a 17 year old boner.
I've had several seizures. Do you feel any of the symptoms coming on before an episode (while awake) or no?
When I have daytime seizures I get an aura(which is what they call the warning signs). Mine is either a whooshing sound in my ears or ringing that goes from one ear to the other.
Outside of that no, I have no aura for the ones in my sleep.
Are you currently getting treatment for your seizures?
i have auras with my seizures mine is strong whooshing and slow build up ringing in my ears too which has caused me alot of anxiety ill have a panic attack thinking its an aura. With my seizures afterwards the extreme headache confusion etc. but also feel extremely depressed.
Talking about auras and hangovers... My aura is a slightly dizzy/heavy pressure feeling. Dizzy isn't the right word for it, but it's the closest I have. The heavy pressure is exactly what it sounds like - feels like heavy weight is pressing down on my shoulders.
As far as hangovers go... My reaction is exactly opposite to yours. I feel better after a seizure. It's like my brain has taken a fat shit. Heh.
The hangover is the worst. I only got depressed while on Keppra but after I was off that my mood was better. What meds are you taking and have you talked to your Neuro about your depression?
I hate Keppra, it makes me a raging angry person. My wife almost left me I was so bad on it.
I morphed into the couch and was an asshole all the time. It's brutal
I'm not. I've had 3 over the past 4 years, but I've also had multiple 'warning signs'. Luckily, I work for myself and from home 90% of the time so I'm able to lay down, which seems to always help. My aura's come as ringing and tunnel vision with light headedness.
You could die from SUDEP if left untreated.
Have you tried marijuana?
No, I have thought about it I am in a state where it's medically legal and dispensaries are a dime a dozen. The reason I haven't is because some seizure disorders marijuana can make it worse. Maybe once they find out where it's triggering I'll try it.
It's not so much the particular seizure disorder but your body's response to the cannabinoids. My daughter has ohtahara syndrome and seizes hundreds of times a day. She was palliative. Last ditch effort we tried cannabis oil. She's been seizure free for two and a half years.
Oddly enough it's the cbd that can trigger myoclonics for her. The thc seems to help her seizures more, cbd has, from my observation helped cognitive development. I just have to be careful how much cbd she actually gets. I know people in every province and every state that can help. Even in non medical states. If you want help, pm me.
Thank you. And I'm glad to hear your daughter is doing better. I feel so much for my family watching me go through this, I couldn't imagine the feeling of watching my son have to go through it.
You convinced me!
That is not always the solution. Actually it is best for juvenile epilepsy but it is not the actual marijuana but the CBD.
Cbd can trigger seizures in some. My daughter is one. Thc also has an to convulsant properties and works for many, including my ten year old. We see so much cbd in the news because people are not comfortable hearing about children getting thc. Although no one batted an eyelash when my 6 year old was getting ketamine.
Sorry. I won't rant today.
I'd rather my child be on something natural too.
It's not even that it was natural. I just wanted something that worked. I didn't care what it was
I can get behind that. You're a good parent.
My sister was also recently diagnosed with epilepsy at the age of 33. She had been having partial complex seizures for nearly a decade which got worse over time. Her auras feel like Deja Vu mixed with a sense of fear and panic. This is one of the reasons her epilepsy went undiagnosed for so long: She thought she was having anxiety attacks.
She has been struggling with her meds as well, and had a severe reaction to one of them. They also greatly affect her mood, though her current medication seems to be showing a marked improvement. Yet, her doctors are recommending surgery.
What's your experience been like with medications since your diagnosis? Any advice? Any success?
I'm sorry to hear she is going through all that. I've had similar experiences with the meds effecting mood, libido, and energy. I will be starting new meds after this observation period so I get to find out what fun things will happen.
I would see another neuro and try observation before surgery as they remove parts of the brain loves(lobotomy) for some this is the only option. I would make it my last after I've been through every single med or cocktail I could try.
So far not much success but I'm hopeful.
She feels the same way, but she actually ended up in the hospital with one of her medications. It's a tough and scary thing.
Was it due to low sodium? That sent me in to the hospital with a dangerously low level.
What was it like to have your first seizure?
My first seizures I was unaware of. 90% of my seizures happen during my sleep and that's how they started. My wife and our partner told me they thought I had a seizure. I felt like I was hungover when I woke up that morning.
The first one I can remember was after the sleep ones started happening almost daily while waiting to get to a neurologist. I was on my way to the kitchen to put my lunch plate away. Next thing I know I come to on the floor face down thinking I had a stroke... Turned out to be a seizure though.
What does "our partner" mean exactly?
My wife and I are in a polyamorous relationship. FFM triad.
who do you find more attractive?
They are both equally beautiful and amazing.
Their at home right now. One might be lurking though on here though.
Does it bother your wife that they are equals? I feel like, in my mind, wife is higher than partner.
Not at all. And our partner is just as equal as me to my wife and I'm not bothered by that.
Have you seen Stranger Things? I felt there were scenes that should have required a warning for those dealing with epilepsy.
I'm not photosensitive and I loved Stranger Things
Didn't know there were different flavors of epilepsy. Thanks!
The type of epilepsy a person has related to the origin of the activity in the brain, so there are many different forms of epilepsy
Great response thank you.
Yeah there's a bunch of seizure disorders lumped under epilepsy. I learned today though that not all seizures are epilepsy though.
A friend of mine has epileptic seizures which results in slight amnesia. She often struggles to find ways to manage it, finding calendaring obsessively to be the best option but somewhat tedious.
As an example, she got a phone call in her dorm inviting her to go meet someone across campus, a 15 minute walk away. She left her dorm and ended up seizing mid-walk over to meet this person. When she recovered, she had no memory of receiving the call, leaving her room, or where she was going. She explained that it can feel like teleporting - she comes to from a seizure and finds herself in an unexpected place with no idea of how she got there.
So - do you have symptoms like this? Any tips for managing it?
Right after I'm foggy but not this bad. I write down everything now though for the times I might have memory issues.
My wife went through the exact thing you are doing right now. She first did it as a child before I knew her, then about 8 years ago, most recently a few months ago. as a child and 8 years ago they thought the seizures were coming from different parts of the brain and ruled out surgery. A few months ago they detected a common point they started at then spread to other parts of the brain. At this point they decided surgery may be an option.
2 months ago they did a similar test to what you are doing now except the probes are implanted surgically inside the brain. They confirmed all the seizures had a common starting point.
2 weeks ago she had surgery to remove the problem area, she was lucky that it was a "safe" area to operate. Unfortunately during the surgery or shortly after there was a brain bleed (AKA a stroke) and she is currently in the hospital stroke unit getting physiotherapy to get her right leg working properly again. Progress has been quite good, might be coming home this week with a cane. The doctors think it will be fully recovered in a bit of time. The most important part, she has been seizure free since the operation, before which she had multiple seizures daily.
Feel free to ask questions about our experiences if you want.
I guess my questions for you are:
have they done an MRI and found anything unusual? They did with my wife and could see an abnormality that was where the seizures started.
Do your seizures appear to start at one spot or start in multiple? I do realize it may be too early to tell from how long you have been there.
Have they given up on meds already? They spend over 20 years trying new meds and new combinations of meds with my wife. They wanted to control it with meds before surgery due to the risks.
I'm sorry to hear that you and her going through this and I hope she has a speedy recovery. It's hard on me emotionally what my family has had to go though since this all so sudden.
Did your wife go through personality changes during her new treatments?
I've had an MRI done with a contrast and everything showed up normal. It's bittersweet as I wish there was an answer to what's happening.
They have only seen the seizure activities via the camera and one was while they were in the room. I'll find out today if they saw anything on the EEG from yesterday's big one and the sleep paralysis episode this morning.
They aren't giving up on the meds yet. For me it's now trying to find where it's coming from to give the best medication or combination of meds for my issue.
Some meds have caused side effects that caused some personality issues. They did warn brain surgery does have a risk of depression or psychosis (pretty small risk), if anything she has been more upbeat since the operation, but they did just fix seizures that have been plaguing her for 20+ years. I would be upbeat as well.
I agree. I hope she comes home soon!
What does it mean when you say "where it's coming from?" Are there different types of epilepsy?
Epilepsy is an umbrella term to cover the 60 or 70 different seizure disorders. However not all seizures are epilepsy.
Different parts of the brain will trigger different seizures.
Do you miss fapping or do you somehow find a way to do it? This sounds like a joke question but I'm actually quite curious.
I've got to do it twice. Wait for sponge bath time and I make it quick. It probably shows up on the EEG and heart monitor but fuck it better that than a wet dream!
High drive. I'm still good for 3+ time's a day.
Hi there. My 14 year old son just started having seizures. My question is about independence. If you're out somewhere and start to feel the warning signs of a seizure come on, what do you do? If you can't find a safe place? If you're alone? Do you recognize warning signs enough that you can lay down? I'm sorry I'm all very new to this and thoughts of him being alone or getting hurt plague me continually. Thank you
First off sorry to hear that this is happening. Don't be sorry my family is new to all of this too.
Every one is different as far as their auras(warning signs). If your son has one best thing he can do is sit down and take nice deep relaxing breaths.
If he's out alone think about getting a medical bracelet and keeping a laminated "do this" card in his pocket so someone can help him out.
Once it's managed he should be able to go most things that other teens can do. Alcohol is a no no but the rest he should be good on.
Thank you for responding. It's comforting to know that other people understand
You're a good mom for being concerned. I did a lot of research on my doctors before I committed to seeing them. I have a PPO so I can see pretty much whoever I want.
So cool seeing an epileptic pal on the front page!
Something that made me laugh just by scrolling down is how many people have asked you if you smoke weed. I've had to wear 2 ambulatory EEGs and one time I ordered pizza and the first thing the delivery woman said was "oh my god... Are you suffering?... Oh it's seizure monitoring? Weed cures epilepsy."
It just makes me laugh when people watch those Facebook videos about someone putting cannabis oil on a seizing child's foot and suddenly they're the expert over my epileptologist. It's all presumably from a good place, but I'm sure you tire of unsolicited medical advice from friends, family, and strangers too.
If you're plugged in for such a long time, do they ever take the leeds off? Let you breathe for an hour or two? That's such a long time!!!
Edit: I should add that I'm 21 and in college so a lot of people assume I smoke weed to regulate my seizures but I don't. I'm not saying cannabis oil doesn't work, but holy balls let people take their medication in peace
Wow I didn't know I made it to the front page.
The Leeds stay on I wish I could get a breather. They get moved from time to time to prevent skin breakdown.
And I don't mind the advice from others as long as it's not rammed down my throat.
Have you looked into the ketogenic diet?
I have and I am on it. It hasn't helped my seizures, but it helps a ton with the energy issues from the AED's.
Welcome to the club. I've been a non-consensual shaker for 34 years. Have you had any issue retaining your driver's licence?
My state it's illegal to drive while active. But you don't have to report it to the DMV. So I have a legal license but it's illegal for me to do so.
I don't drive however because I don't want to kill anyone. I might return to driving in the future if I feel it's safe to do so.
It'll all depend on my meds and how long I stay seizure free.
For me, I only have them when sleeping, do i can still keep my license.
You might have non epileptic seizures. But it all depends on your state laws. I wouldn't drive while active any more than I would drive while drunk. I'm not judging because you know you better than I know you.
Understood. After 34 years having them and bring under the care of my neurologist, we feel that the chance of any driving seizures if very very slim to none.
I'm with you on that and respect it. I said in an earlier reply that a controlled epileptic is no worse driving than a type 1 diabetic. You're doing the right thing I'd have no issue getting in the car with you.
Good to hear, now when and where do I pick you up?
I'm in downtown Detroit you sure you're up for that?
It's a bit of a drive, not sure if I could pull it off today...
I'm here for a few more days
Did you have seizures your entire life (and diagnosed just now) or it was something that started recently?
As far as I know it's just recently. But looking back there were some signs that I might of had it as young as 8 or 9.
When I was that age I started having sleep paralysis. Doctors said not to worry. Now that this is going on there is a chance the sleep paralysis is a small seizure.
Also I stare into space from time to time but I'm aware of what's going on. I thought I was just spacey, turned out to be absent seizures.
I saw you're in your current situation because you'd been prescribed the maximum dosage of your medicines with no results. I'm a big guy, and several years ago my neurologist prescribed a very high dosage of Carbatrol/tegratol and zonegran. I took that dosage for, like I said, several years. During that time I'd reliably have a seizure a day and a near-constant state of what I perceived as an aura. Long story short, turns out I was taking WAY, WAY too much medicine. After greatly reducing my dosages, I'm now seizure and aura-free. In other words, I was being given a severe overdose of epilepsy medicine for several years.
My question - is it possible you're taking too much medicine?
It's a possibility. This study will determine the right course of action. They will see any misfires and it'll be easier to treat. There's also a chance of it being non epileptic seizures as well which would be awesome!
How you doing?
Bored as fuck, a little couped up. But in good spirits otherwise.
Glad to hear. Hope shit goes as well as it can for you
Have you started a ketogenic diet yet? It was originally a treatment for epilepsy, but a lot of people also use it for weight control. You can get details over on /r/keto if you're not familiar with it!
I'm already on it. Helps with energy for me but no effect on my seizures.
What made your physician decide to recommend you go to a monitored epilepsy unit? Why might you be there for up to 21 days? Is your insurance going to cover that length of stay?
It was recommended for me after hitting max dosages on multiple medications and no improvement. The only med that did help sent me to the hospital for a sodium deficiency. Which is bad because it can kill you if you wait too long to go to the ER.
21 days is the max they keep someone here. I get to go once they have enough data. I've had 2 seizures so far while I'm here, unfortunately it didn't register on the EEG. That could mean the issue is deeper in my brain but only time and data will tell.
They are covering it, I can only go through this once per year though.
How does your son feel about you and your wife's third partner?
He loves her dearly. She's a second mother to him.
Do you find yourself really hungry after a fit? My 6 week old has fits and eats so much when hes had one.
No, but one of the meds made me super hungry. I'm off that one now though.
They sure are
How does this affect your relationship?
I won't lie it's difficult. Because of how sudden it was it put a lot of strain us. I used to take our son to school, make dinner and do all the shopping for the house.
But now since I can't drive they have to pick up a lot of the extra things. Which makes less quality time for all of us.
Along with that I can't sleep, bathe or use stairs alone for the time being. It's like they have to take care of another child. My meds can make me sleepy and cranky, it's a blast lol.
I told them I understood if they didn't want to stay but both of them have said they are committed to helping me get better and being by my side the whole way.
The driving apparently depends on state. In Texas epileptics can drive according to the doctor prescribing my drugs. A weird "cultural difference", as in Europe epileptics certainly don't drive.
There's a lot of different types of seizures and seizure disorders. So I'm all for the person working with the doctor being able to drive. A controlled epileptic is no worse driving than a type 1 diabetic.
are they watching you as you type right now?
Accidentally responded as a new post my bad. But yes they are. Go ahead and wave!
Actually, do you plan on smoking weed?
I'd probably get a volcano or use oils. Nothing against smoking it at all.
EEG the here. Who put your leads on? They look like they're about to fall off. I could do better, just saying.
They fall off constantly. There is an EEG tech on here twice a day
When I had my 7 day veeg they had to reapply about 25% of the leads every day.
Sounds about right lol. The techs are cool though except one who complained I was doing something to get them to fall off.
Have you thought abt using cannabis or cbd oil? I understand the legality is an issue but it's been proven to help people... Just curious if you tried it
I live in a medically legal state where it is very easy to get it. I have not tried it under the guidance of my Neuro. He is not against it but for some it can make things worse instead of better.
Have you considered medical marijuana?
I have considered but I'm not going to just yet. For some it can make seizures worse.
Thank you. Does the relaxation and deep breathing help ward off a possible seizure?
Not OP, but I was diagnosed at 12 (28 now). I find deep breathing and trying to relax has worked for me. It's not 100%, but it has worked. For me, I have to keep my eyes open though, if I close them, I'm definetly going to go into a full grand mal seizure. As a side note, I nearly always have an aura before a full seizure.
Thank you. I'm having real struggles dealing with this. He is fairly casual about it but I'm totally broken up over it. I hope I'm just overreacting because it's so new
Mew answered this perfectly. Other things you can do to help is try and make sure he manages his stress well. Understand that medication changes can and will affect his mood and energy levels. Don't be afraid to ask his Neuro questions. /r/epilepsy is a good source of help along with the epilepsy foundation and cureepilepsy.org.
Again, on the polyamorous relationship thing, how would a breakup occur? If one day your partner and you didn't gel but your partner and your wife still did, how would the relationship change?
It would all depend on what happened to cause a break up. Too many scenarios to give a straightforward answer.
42 Y/O here, with Adult onset Epilepsy. It's rough man, I have 5 little girls and a Wife to take care of, and it's hard when my Wife has to take care of us all on my bad days. Currently on Depakote and Ativan. Been through Keppra, Phenobarb, Lamictal, and 1 other I think. No drivers license sucks, but luckily where I work ( under the table ) They know my condition and keep an eye on me. My last Grand Mal episode was at work, I fell back and bounced off the tile floor. We have video cameras, and when I came back to work, they cued it up to watch.... A few of them said it looked like I died. What's the worst situation you were in when you had an episode?
Holy shit that sucks. I feel face first once on the hardwood floor at home. The worst was I was sleeping alone and I was seizing face first in the pillow. I haven't slept alone since.
Ahhhhh, the old "Sandpaper pillow to the face " episodes, ..... My more frequent are the starring spells accompanied by that tiny bit of drool. it's quite annoying.
I'm always wiping the left corner of my mouth.
Fuck man that must be tough, how did you first notice you suffered from seizures and how bad are they?
How was it to learn (im guessing here) at a later stage in life discover you had or had developed epilleptic seizures.
Do you get a precoursor feeling before an epilleptic seizure will come, and do you sometimes try to trigger them just to "get over with it"
Lastly as a man i approve of your beard a tiny bit homo but not enough to break up with my girlfriend over.
My wife and partner noticed it in my sleep. I have tonic-clonic but I don't wet or poop the bed.
It took a bit of adjusting to the current limitations bit later the restrictions will be less.
I rarely get an aura and I've only tried to trigger them while I'm here so I can go home sooner.
Thank you, and no worries we are all a little gay.
How have your polyamorous relationships affected raising your son? Does he think of your partner as his 'step-mom'?
My son has a wonderful support group with lots of love, praise and attention. There's no step. Just mom.
Have you tried cannabis oil?
I have not. For some it can make things worse.
I wish you well, and hope that any factors which give rise to your experiences can be identified, and if not eradicated, controlled.
What is your professional background, and is the causal factor genetic, environmental, or a combination thereof, and do medical practitioners believe that any single factor is dominant?
Thank you for the well wishes!
I'm a SQL developer by trade and do some data architecture. So far there's no genetic or environmental factors they are considering. It could a seizure disorder or possibly a non epileptic seizure condition.
Hi there, sorry to hear about your condition. Do you also suffer from tonic-clonic seizures? Good luck with the observation period.
I do generally in my sleep. Absent during the day
Please don't get this the wrong way: Does your epilepsy have any positive effects on you? In one of your answers I read about you being horny after a stroke. Are there other things about it that are not bad?
Apparently I'm missing out on medical marijuana and cannabis oil. The only other perk is not having to drive. I was always the one driving.
who better; drake or wayne?
Tunechi all the way. "Back to You"' is one of my favorite songs by him.
Thankfully my 5 year old hasn't had to see it. I feel it's almost tougher on our loved ones.
What is your preferred name for your genitals?
Usually I just call it my dick or my cock. Occasionally I'll say penis. I do have a tattoo above it though that says Organ Donor in script lettering.
Have you heard of Team Alexis? There's a nine year old epileptic that has hundreds of days seizure free because of THC. http://www.youtube.com/watch?v=ORIblhQLiTI&sns=em
I have not I'll watch the video though.
First off, I would like to say I know what you are going through. I was an Epileptic child, having it from age 4 through age 11.
My question is, if you have an iPhone and Apple Watch? If you haven't I would suggest the EpiWatch app by John Hopkins School of Medicine to monitor your seizures, and to give feedback to others in the case study.
Just another valuable tool, to help yourself document changes, and help find a cure.
I have an iPhone but not an Apple Watch. Can I still use the app? I would love to provide data to help others.
I use an app to track but this sounds cooler.
I was diagnosed with epilepsy at age 21. I would have several seizures a month with several failed rounds of medications. at 25 I moved with a friend to Portland Oregon and began treating my epilepsy with CBD tinctures. I'm 26 now and have been seizure free for almost a year. Have you considered using industrial hemp CBD(legal in all 50 states) to treat your condition? if so hit me up I can get some very affordable products out to you.
I've considered it. But it can make some seizures worse. I'm waiting to see where the seizures are coming from first.
If you could have any super power what would it be?
Invisibility, I'd see so many naked people.
I like you're honestly.
Lying doesn't pay. Plus I love naked women.
...being monitored for 24 hours.
So how do you fap?
With my right hand on my cock.
How old were you when you had your first seizure? I ask because I witnessed a 24 year old have her first seizure and I was wondering about how common a late epilepsy diagnosis is.
34 and its common. I know 2 people who were diagnosed with it in their 40's and 50's
Hey man. Good idea for an AMA! I just wanted to tell you that it may seem endless, but eventually it will end. I did a 12 day stint in an epilepsy monitoring unit about 8 years ago and it broke me emotionally. No privacy, constant monitoring. A battery pack that only lasted long enough to go for a 20min walk. But you will get through it, and it will be for the best. I ended up opting not to get the brain surgery I was offered, but we found the right combo of meds so that I only have a couple seizures a year. That is enough for me. Best of luck with figuring out the right combination of meds for you. I'm sure there's a few other people in this ama who have offered, but if you need someone to just relate to and know what you are dealing with, feel free to contact me my epileptic brother. Good luck! You'll get through this!
Since I need to ask a question... how has this affected your day to day life? How did it feel to be diagnosed at 34?(I was 12)
Thanks, today I ended up with more questions than answers from my doctor. 20 minutes ago I got my daily briefing from the doctor concerning my episodes. They visually saw 4 events between being in person and of course captured all on video. They were in my sleep but I had no misfires on my eeg. She said there's a possibility of it being non epileptic seizures but they need more data.
If this is the case I'll have 4 more doctors go see based on my medical records and what they've observed. It'll be starting over to pinpoint why I'm seizing and why it's so often. Tomorrow I get a new doctor for the week(they change every 7 days) so I'm sure they'll be more to dig into.
Currently I can't bathe or use stairs alone because of the fall risk and I can't drive. But I don't let it get me down and I focus on the things I can do.
It was rough at first being diagnosed this late, didn't know what to expect. But as things come along I just do the best I can with what I got.
Will they keep you up if you try to sleep?
Yes, and they do a good job of it.
What do they do?
They shake you and your bed. Make you get up and walk around.
In another comment you mentioned you're in an FFM polyamorous relationship - do you have a joint checking account with your partner and your wife, just one of them, or are you playing it safe and keeping your own money in its own account?
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