For about 3 years, I’ve had these weird visuals immediately after falling asleep of me spinning around the room and hitting my body against everything, usually my room, and I can’t get myself to stop spinning. I’ll manage to stop myself from spinning around for a bit and then it’s continues for what feels like forever but it most likely lasts a minute or two. Then I’ll slightly wake up but I can’t move or speak and my head is pounding. I know I’ll go back into that state cause I could feel it coming on again. It’ll happen usually 2-3-4 times before I fully wake up. My head hurts so much afterwards, my tongue is all chewed up and for the rest of the day my mind feels foggy and I have a migraine. It only happens in my sleep and when I’m really tired. I don’t know what’s wrong. Does anyone have similar experiences?

I was in the ICU from Sunday until Friday on VEEG monitoring. My diagnosis is right frontal focal epilepsy. Sunday morning I was having clusters that just wouldn’t stop. My husband knows my feelings on the hospital (don’t take me there) but got scared and called an ambulance anyway when they turned into tonic clonic and my rescue meds and vns weren’t doing anything. The eeg didn’t pick up a thing even while I was seizing, which is no new thing. My neurologist, who is 2.5 hours away from the hospital I was eventually sent to (very rural community, so we’re just all sprawled out) said he thinks my seizures are too deep to be caught on an eeg. This far off hospital was trying to rediagnose me as having PNES. They tried to say I was suicidal, which I don’t know where they got that, tried to get my husband to say that I was suicidal and also put me on a 72 hour psych hold in another hospital. When he wouldn’t say I was suicidal, that fell through for them. The entire stay was bizarre. They wouldn’t use my vns magnet and just kept loading me with ativan, even though they were saying they were psychogenic. It was some of the worst days I’ve ever had. My husband was 2 hours away and working a new job so he couldn’t be there. My stepdaughter was the only one close enough to visit. My entire family lives two hours away. I don’t know why our local hospital sent me here. It’s so bizarre. I’m still coming off the Ativan. They sent me home with 4 new prescriptions, only one of which I filled because I don’t trust them. I’m not filling the others until I talk to my neurologist. I filled one for anxiety bc damn, I need it now. I have ADHD and PTSD and it’s supposed to help with those . It’s Effexor. I don’t know whether to flair this as a rant or support but I think I’ll go with support because I think I could use that right now. I hope this post makes sense bc like I said I’m still coming off all that Ativan and my brain is weird. Also they sent me home still having a lot of seizures so they really didn’t do much for me. I went almost a year seizure free to now having several focals a day. I’m really scared. I can’t drive now and I had to quit my job. I am depressed now. Maybe that’s why they thought I was suicidal, idk. But I never gave them any indication that I was there. I cry a lot after a seizure, that’s just my postictal state. I cry and I’m whiny. I can’t help it. Any support would be so great. Like I said, I hope this makes sense. The whole thing was so bizarre. It might not make sense anyway I write it.

My mother has been sleeping almost non-stop for 3 months and that's all she wants to do. He is on antidepressant treatment, but he does not want to go to the doctor and talk. I want to help her, I know what depression means. Do you have any advice how I can show her my support and also help her?

Just crossed my mind that at least to me some supplements were helpful with recovering faster after a seizure. Maybe some of you wanna try or have input.

• magnesium/calcium (helps with the muscle cramps)

• B12 and B complex (I take those daily and I feel more aware/awake)

• folic acid (it's usually part of the B12 supplements here and came in handy, but I also need to take it anyway)

• melatonin tablets for a week after seizure for better/faster sleep

I also try to eat more iron based food in the days after a seizure.

But hey that's just me. Apart from the B12 and folic acid my doctor never told me to try any of that, but my physio suggested it and it helped.

I'm 20 years old got diagnosed when I was 17 I was good for a year but have now come back full force starting a year ago I used to be Abel to fell them coming now I don't and just fall where ever I am standing I sometimes have them with know one at home or around me and was hoping there is a device that can contact people if it detects a fall and if it goes so long to call and ambulance I have tonic clonic sezuires most of the time they last couple minutes but lately they have been going for 5 or more my biggest was 12 minutes

yesterday was two months seizure free and to celebrate my brain gave me the tiniest baby seizure in the shower and set the clock to zero. lobotomize me.

Is it normal for my meds to sometimes make my lips and tounge feel numb but they aren't numb at all just feels like what you get at the dentist sometimes

Does anyone else find that music keeps you more focused and helps with your epilepsy to wither point you barely have seizures when you listen to music all day or us that just me

Literally everyone in this subreddit uses abbreviations. There are some that are obvious, but there are some less used and some might not know the meaning of. Can you please write the lesser used down so some don't have to google them every time? It might just be me, but it's so annoying seeing multiple of them in one single text.

Thank you!

Edit: I'm a foreigner.

So, my social teacher runs the school blood drive. Majority of us will be 17 by the time of the field trip so we can, just need our parents to sign the form. I was really interested in giving blood as the only blood draws I’ve had are when im in the hospital or having my A1C tested (T1D).

I was trying to figure out if I’m okay to donate but from what I could find, I can’t give blood because by the time of the field trip, I’ll only be 3 months seizure free (says I need 6). Something about it being a seizure risk?

I’m kinda pissed cuz I was really interested in doing it (that probably sounds weird of me). Makes me despise my brain for deciding to pull Pokémon moves at the wrong time.

I just was hospitalized for a week with uncontrollable seizures and given the diagnosis of epilepsy and PNES. The doctor didn’t report me to the dmv but I don’t know what to do about it now. I need to see a neurologist but am scared of getting my license taken away. How do people adjust to this/ afford transportation? I live alone in Los Angeles and the public transportation isn’t great

Please help !

I had my surgery on october 22. Went home on the 27th and now I'm home I can see what the surgery did to my body.

All the nerves in my legs hurt so much ! I never had such a feeling ever! I'm now massaging my legs but the nerves hurt so much that I just can't lay in bed or whatever.

Is this normal? My knees hurt allot and my upper leg too. I try to walk a bit in the house but sleepin on it just makes it hurt even more.

What should I do because I really just wanna punch my legs and arms cuz of the sensation. Pain killers aren't working cuz it's my nerves. Is it damaged now? Is it just for now or forever? My doctor said that it isn't cuz of the surgery but it literally started when I got home??? I'm 32 and never had any nerve pain ever. I sit with my leg up high and just try so much more. My arms hurt too and I watch youtube videos where they show u what u can do for nerve pain and it just takes hours for it to be a little more calm. While I'm writing this , I'm up for more than 2 hours just cuz of the pain.

Yesterday I lost so much power in my arms That I couldn't even get them up

Help!!!!

Hello, my daughter was recently diagnosed with epilepsy and I'm looking for advice. We were prescribed emergency medication to give her and I'm looking at making a bag to keep with us everywhere. Does anyone have any suggestions on what to have? I'm new to this and am unsure. So far I just have her medication and spare clothing.

Hello everyone, I just recently have gotten a 'soft' diagnosis since any lab work has not found anything defnitive. Started 6 months ago and the theory is that it was causaed by playing rugby long ago. Medication seems to be only helpful.

So my question is wll I get a 100% diagnosis if I do all the damn tests or is there a good chance that I will not get any laboratory hard diagnostic evidence?

Thanks guysi

I’m very interested if anyone has a good “epilepsy Con” if you will, that focuses on education for the family, good prevention practices, preparation for future issues etc. If you don’t have an example I would love to hear what kind of things you wish one would include.

I have a friend whose 13 year old was just diagnosed, and I would love to have some lessons for him that aren’t just the checklist of “well these things lower your seizure threshold.”

after a absent seizure i usually do this thing where I spit very, very harshly onto the floor. almost every time I Go to the bathroom and put in a tampon for some reason. If I have a seizure next to a counter or a table or something, then I’ll usually take the back of my arm and sweep everything off the top of it. None of these things are things I would usually do. I don’t use chewing tobacco or anything. do y’all do anything like this?

I have auras before a seizure usually but once a seizure begins, I don’t remember anything after. Never the ambulance rides, never going to bed, nothing. My consciousness(not sure if that’s the right word to use???) comes back after I wake up because I usually go to bed after I seizure. But if I don’t go to bed, then it’s like 2 1/2 hours later

Hi all!

I was put on Vimpat back in January after i started experiencing multiple focal aware and absence seizures over a few days time. My seizures are usually in periods of ebb and flow- 6-12 months on, 1-2 years (when I'm lucky) off. I'm currently still in my bout, and the bouts are getting longer and more stressful each time they come back.

Anywho, I went to a new neuro and they put me on Vimpat 100 b.i.d. I have been dealing with so much nausea, and appetite loss. Food never sounds good. I'm rarely, if ever, hungry. I can hear and feel my stomach growling but it doesn't equate to me wanting to eat. When I do eat, my portions have decreased dramatically. Like, half a cheeseburger and I'm stuffed to the point of being sick some days. Lost nearly 40lbs in 9 months.

In the last 2/3 months, I've been noticing a significant amount of hair loss too. I'm not sure if it's stress induced or medication induced, so I wanted to ask the good folks of reddit if they've had the same issues with Vimpat. Most of my other side effects such as memory loss, word salad, word disfunction, and stuttering/slurring have eased off.

I've had thinner hair for several years (33f) and started using minoxidil a year ago. It's helping, I can see the new growth, but I've got noticable patchiness and balding now whereas it was just kind of thin before. Any ideas? Is it just me or could it be the meds?

Hello, after sibo new disease occured Epilepsy. First time in April i fainted in train station. Ambulance took me to hospital. After that i start to faint these days. I thought i have an allergy to the some food. But even leave the food, i again fainted 2 time in a days. I was drinking tea after i go to toilet. I got fainted on the floor. I leave to drink tea. I will do brain eeg test in next week.

Every seizure takes 30 mins. My left face start to get harden then my brain goes. In childhood I got convulsion because of antibiotics. They got test I was okay. Epilepsy maybe happened because of this.

Any thoughts, feelings? Thank you.

I recently got an ADHD diagnosis and the doctor said they don’t want to prescribe medication as it lowers the seizure threshold.

My adhd is pretty unbearable and it’s hard to get stuff done in college but I agree with my doctor that treating epilepsy and staying seizure free is much better than treating adhd.

I’ve been epilepsy free for around 5/6 years and that’s not something I want to mess with.

Has anyone here been in a similar position? If so what did you do?

My doctor wants me to get videos of my seizures. Catching a grand mal should be easy enough, but how in the hell do I catch an absence seizure???

Sorry, but I can’t really complain about this to my parents because it’ll just upset my mum and my dad will just say that “we’ll get it all sorted out”, and I’ve got no right to complain about it to my wife because she’s definitely drawn the short straw this year, I’ve been intolerable at some points in the year, and she has been amazing and supportive the whole way through.

So, I started the year on 1200mg of Sodium Valporate twice a day and 200mg of Lacosamide twice a day. It was all going fairly well, I only had a seizure once every couple of months, my work knew the situation and have been incredibly supportive. Occasionally, during my appointments with the epilepsy nurses, they’d ask if I’d like to try any different medication, but I always turned them down because I worried about new side effects, or that it might just make things worse. Then in February, out of nowhere, I had three seizures in one day. An ambulance was called, I spent the night in a bed in the hallway of the local hospital, and was woken up on occasion by the staff to ask me what I wanted to eat for the next meal, or that they were taking me for an MRI. By the next morning, I was sick of hanging around, and after being told that they wanted the neurologist to come by to take a look at me, but he would be a couple of hours, I signed myself out of the hospital and went home. It took me a few days to recover, but like I said, my work has been very understanding, so at least that wasn’t a problem.

Then the problems began. For the next few weeks, I suffered from regular panic attacks. I’d never had them before, and my first one happened at work. I called my boss, did my best to explain what was happening, and he sent me home for the day. I called my wife straight away, and she came and got me, and brought me home. We called the epilepsy nurses, and I finally gave in and said that maybe it was time to start something new. After talking with the neurologist, they came back to me with Brivaracetam. Shortly after starting it, my fears about making things worse were realised. I don’t remember the dose I was on, but it soon after starting it, I was VERY irritable, even the slightest thing would make me so angry. I yelled at my 5 year old for asking me a question when I was just a bit busy. I felt so bad about it afterwards, I apologised and told him I didn’t know why I reacted like that. A week or so after, I had an appointment with my GP to test my kidney function and blood pressure because of the new meds, she asked how it was all going and I just broke down. I wasn’t even expecting to. She signed me off of work due to medication induced depression for 6 weeks, and she contacted my neurologist to tell him the situation. It was a while before I felt human again, but after about 4 weeks, I was looking out the window, and I suddenly felt happy again. I called my boss and asked if I could come back to work early, obviously he said yes, but told me to let him know if anything changes.

A few months later, I got a call from the epilepsy nurses, asking if I’d like to try pregabalin, the newest suggestion from my neurologist. I said yes, it couldn’t be worse than what I’d just been through. I told my boss that I’d be starting a new medication, I wanted to give him fair warning as I didn’t know what side effects I’d be facing this time. I was starting with 25mg in the morning, then 25 twice a day, increasing every couple of weeks until I’d hit 50 and 50. By about 25 and 50, I was having severe headaches and nausea, sometimes waking me up in the middle of the night leaving me unable to get back to sleep.

Not able to cope at work anymore, I got a not from my GP, signing me off from work for another couple of weeks while I was dealing with the last jump up on the medication, hoping the side effects would subside. When they didn’t, I emailed the epilepsy nurses, requesting a face to face with the neurologist. Luckily they had a cancellation and were able to fit me in within a couple of weeks. That was Wednesday. That was when I was stripped of all hope. One of the first things he said to me was “I am not going to be able to get you seizure free”. Now, I was diagnosed 20 years ago, and I’ve tried a LONG list of medications, I knew that it was unlikely that I was going to be completely seizure free, but to be told outright just felt like a punch in the gut.

On the bright side. I’m getting rid of the pregabalin now, so hopefully goodbye to the headaches, and we’re talking about reducing the sodium valporate by a bit afterwards to help with my memory problems.

Sorry this has been so long. But it’s been a long year, and I needed to let it out.

I had my first seizure last December and was told I will be seen at the first fit clinic within 3 weeks. I since had 2 more seizures on the same day in June but I’ve still not been seen at the clinic. I’m based in Derbyshire. After my seizures in June I was put on Levicit~~~~ but I’ve got nobody monitoring my usage/dosage and my gp is refusing to sign the epilepsy prescription charge exemption until I am seen at the clinic. I chase it up every month just to be told ‘yes, they have my referral and I’m on the waiting list and they are working through the list’. It’s like banging my head against a brick wall.

How do you handle your meds with the time change? Do you alter the time you take them or keep it the same

I have a terrible cough that I've been dealing with for over a week. I really don't want to reschedule the MRI on Thursday (today is Saturday) because who knows when I'll get a new appointment + rescheduling the follow-up appointment with my epileptologist might be a nightmare. Home remedies? Suggestions for extra strong cough suppressants? Thoughts and prayers?

I have only recently thought and was told by a doctor that my reactions may be caused by epilepsy. I currently have a difficult life situation(and it has been like that for awhile) however in the last three years my anger outbursts, the ability to prevent them and the ability to distinct what is worth that anger has gotten worse.

Honestly, I thought that it was just my bad personality and started actively trying to prevent acting out on that annoyance or anger. The problem is that these episodes come so fast and so often over and over the same things that I can't escape.

Fox example, someone has parked their scooter in a really inconvenient place with no thought given. Is it annoying? Yes. But is it worth exploding in two seconds and telling all my loved once everything about it? No.

I understand it logically and I feel such deep shame after a few hours of thinking and then I apologise. But in the moment no "deep breaths" or other techniques can stop me in 5/10 cases(which is a lot) because it happens so fast. And once It happens, I fixate on these thoughts, start thinking about all other things that make my life worse.

I started staying at home much more often because I don't want this to happen. After the doctor said that it may be the cause, I realized that this situation, sadly, has been slowly progressing over the years. I was not like that five years ago.

So, has anyone had this symptom? If yes, did meds help? I have hopes that I can manage this.

For people who take meds 2x a day; I am on briviact, how many hours a part do you take doses? 12, 10? My neuro never mentioned timing but I’ve seen on here that can affect people. I have been doing 7am and 7pm… thoughts?

Hello all! I have an appointment Wednesday with my PCP because my psych doctor wanted to make sure there was nothing physically wrong going on before deep diving into the mental aspect of things. I was wondering if anyone had any input from people who are diagnosed with the disorder and have to deal with it. These are all the symptoms that I’ve been having for about a year to two years now:

Deja vu followed immediately and comprbidly with immense panic attacks and feeling of doom.

Jamais vu and feeling like things are necessarily real or that things I’m seeing aren’t exactly right.

Things growing and shrinking.

Severe brain fog and mood changes.

Pressure in my head

Body twitches throughout the day

Numbness in fingers

Rapid heartbeat

Always tired

Daydreams very often, my eyes feel like they become almost locked in the daydream

Forgetting conversations that had just happened or not necessarily feeling like I was there for them

My first seizure was at 18 in March of 2021 and it was a full on seizure. I was a few months from graduating high school, didnt know what I was doing after, not eating well, failing classes so I didnt know if I was going to graduate (i did lol).

The neurologist said that it was probably stress or genetic since my grandma on my dads side had seizures and my aunt on my moms side has seizure. He chalked it down to stress and gave me a medication that I dont remember that was for seizures and anxiety. That was making me feel horrible and numb and I had never taken medication before so I stopped taking it after a few weeks.

I didnt take any medication and didnt have a seizure for my whole freshman year of college and the next semester after that. I then had another full seizure in January of 2023. I was given Keppra and took that for about a year but was still having seizures. The Keppra did not help and made me angry and horrible. I switched to Briviact this spring and was still having seizure. About two months ago I got Vimpat but im still on Briviact. A few weeks into taking Vimpat I had a mini seizure and this last sunday I had another mini one as well as feeling seizurey. They still think it’s just stress induced seizures. Ive been having these symptoms and im not sure if theyre from the Vimpat or what…

• Get sad more easily. For example Ive been crying about failing college, cried at somone dying in a tv show I’ve seen multiple times, being sad about random stuff.

• Feeling strange

• Way more anxious.

• Feeling seizurey.

• Feeling weirded out by stuff.

• ill look at something and feel like throwing up, stomach twists, heart kinda twists up.

• Heartbeat is faster.

• My eyes dont seem to be working well.

• My armpits have been SUPER sweaty.

• Much more tired.

• Some other random stuff.

These are all random stuff I’ve been feeling since I started Vimpat.

My mom said that maybe I should just stop seizure medication and get on anxiety medication since they seem to be from stress and anxiety...

thoughts and help?

Is it just me?

I developed epilepsy in my 40’s. Almost immediately I noticed odd changes in my body’s habits. I now have a gag reflex, my sneeze is completely different (I used to squeak and now sound like an old man). I was a left side sleeper, now I curl up on my right side. Prior I couldn’t lay on my right side without a gut ache.

Twice in 3 months. The most frustrating part is hearing that you were convulsing when you had no memory of it.

Every time i have visited family this year, i end up with an extra ER bill it seems.

Kinda sad but pushing through. Thanks for reading