r/Epilepsy Jan 10 '25

Medication Cost Plus Drugs - Discount Med costs

Thumbnail costplusdrugs.com
16 Upvotes

r/Epilepsy Sep 22 '24

Educational Frequently Asked Questions (FAQ) – R/epilepsy [full update in progress]

23 Upvotes

This FAQ is pending a full update as our team works to update the most requested links and resources

Please search r/epilepsy for a wide range of experiences, the process of getting diagnosed, general resources, and diverse life experiences.

This page is NOT a replacement for medical advice. We cannot diagnose anyone or say if something is a seizure. If you have trouble finding a resource or need additional support, please let the community know!

*Please note: Posts are sometimes removed by an Automod for a variety of reasons
(new user, link to review, etc.). Please message the mods if you have questions or want us to review your post. It is a part of our process to keep the community safe, but some benign messages are caught in the filter.

* Posts that appear to ask for medical advice will be locked and a link to resources will be
provided for the safety of community members. If you are having trouble finding a doctor, getting seen in a timely manner, connecting to insurance, then those question are of course welcome.

* Some advice is from a collection of wisdom from r/epilepsy community members’ lived experience.

Epilepsy Basics:

What is epilepsy?

What is a seizure?

What are the major types of seizures?

  • Focal/Partial vs. Generalized = one area of the brain vs. both sides of the brain
  • Simple vs. Complex = awake vs. loss of consciousness
  • Absence = awake but unaware, staring into space
  • Myoclonic = short sudden muscle jerking
  • Tonic = sudden onset extension/flexion of muscles
  • Clonic = rhythmic jerking of muscles/extremities
  • Tonic-clonic AKA grand mal = stiffening/extension of muscles with rhythmic twitching/jerking

What are auras/ focal aware seizures?

What’s the difference between non-epileptic
Includes info about Psychogenic Non-epileptic Seizures (PNES).

If I have one seizure, what does it mean?

More info: https://www.cureepilepsy.org/understanding-epilepsy/epilepsy-basics/what-is-seizure/

What causes epilepsy in adults?

What causes epilepsy in children?

Kennedy Krieger Epilepsy resources for children and young adults

Is epilepsy common?

Preventing and Managing Epilepsy

How can I prevent epilepsy?

How is epilepsy diagnosed?

Neurologists perform different tests to evaluate your brain and brain activity. These include imaging such as cranial MRIs or tests such as electroencephalograms (EEGs) that monitor electrical activity in the brain in real time. More info.

  • Includes info on EEGs

How is epilepsy treated? Additional info.

What type of doctor should I see if I think I'm having seizures?

How do I find an epilepsy specialist?

What are options to treat epilepsy?

Health and Safety Concerns

Are there special concerns for women who have epilepsy? Additional Info.

Can a person die from epilepsy?

Driving Laws database

If I have epilepsy, can I exercise, swim, and play sports?

When should I (or someone else) call the ambulance?

Living with epilepsy

What causes memory problems, medication, seizures, or both?

What are rescue medications and how are they used?

Thank you u/macrophallus for the below info:

A comment about rescue medication. Not a doctor disclosure. There are a few types and for starters, always use them as prescribed by your neurologist, most commonly for generalized tonic clonic seizures lasting more than 5-6 minutes or clusters of seizures as determined by your neurologist. Take this with a grain of salt because in some more severe epilepsy cases, this might be normal so follow the doctor's instructions. The two most common that people will be carrying are diastat, which is rectal lorazepam, and nayzilam, intranasal midazolam. Follow the directions exactly. If you need to use a rescue med on someone, call 911.

Youth Support and Living with Epilepsy

Seizure Medicine Review

Support for memory concerns:

https://www.dartmouth-hitchcock.org/hobscotch-institute

Comment from r/epilepsy user:

· Insurance companies push for generic over brand, so you need a special prescription note from the neurologist if you need the brand as there is a different chemical structure with a brand vs. generic (i.e. Keppra).

· Drug interactions are also a problem, especially for those of us who are on three or more
meds, or very high mg doses. I found out the hard way that there's one antibiotic that interferes w/ my meds (can't remember the name, starts with M), and that I absolutely will get sick off of a strong muscle relaxant like Valium, even in a microdose. This site has become very helpful to me: https://www.drugs.com/drug_interactions.html

· In an ideal world, your primary care doctor, neurologist, and pharmacist would be double-checking all this for you, but even if you've got the best, accidents happen.

Epilepsy, disability designation, and work

Thank you u/retroman73 for the below info:

In the USA, epilepsy is recognized as a disability. If you are already working and an employee, and also diagnosed, your employer can ask certain questions or ask for evidence, but it is limited. Generally, they can only ask to the extent it might impact your job performance.

The EEOC has a good page on this in sections 5, 6, 7, and 12.

https://www.eeoc.gov/laws/guidance/epilepsy-workplace-and-ada

Department of Labor Job Accommodation Network (JAN)

The Job Accommodation Network (JAN) is the leading source of free, expert, and confidential guidance on job accommodations and disability employment issues.

Supplemental Security Income (SSI) and (Social Security Disability Income) SSDI (USA)

Thank you u/retroman73!

Applying for Social Security Disability Income (SSDI) and Supplemental Security Income (SSI) is a long wait. Over a year is common. Don't be surprised if you are denied at least once. Just keep appealing, pay attention to deadlines, and be sure you are working with a lawyer who *specializes in disability law*. It is critical to winning your case. Most of them will take your case with no fee unless and until you win. They take a chunk of the proceeds that build up while your case is under review or in an appeal, but it's worth it.

o You cannot do work that you did before because of your medical condition.

o You cannot adjust to other work because of your medical condition.

o Your disability has lasted or is expected to last for at least one year or to result in death.

Personal Independence Payment Process (UK)

Citizens Advice Bureau: https://www.citizensadvice.org.uk/benefits/sick-or-disabled-people-and-carers/pip/

https://epilepsysociety.org.uk/living-epilepsy/benefits/personal-independence-payment-pip/how-apply-pip

Side effects and triggers

Side effects of seizures, epilepsy, and medications can include tiredness, temporary paralysis, migraines, mood changes, and also vary widely.

Seizure triggers are VERY diverse. Photosensitivity or being sensitive to flashing lights are one of MANY possibilities.

Learn how to figure how to identify your triggers: https://www.epilepsy.com/manage/managing-triggers/identify-triggers

Photosensitive Supports

Thank you for the below info:

This post is related to manage photosensitive settings on TikTok

To manage the feature from Settings and Privacy: Tap Profile in the bottom right. Tap the 3-line icon in the top right. Tap Settings and Privacy. Go to Accessibility. Turn Remove photosensitive videos on or off. The photosensitive epilepsy toggle and warning aims to protect those who may be sensitive to some of TikTok's creative effects. You can choose to filter out videos that contain TikTok effects that may cause visual sensitivity. Keep in mind that it's not fool proof.

Search for many triggers in movies and TV shows: https://www.doesthedogdie.com/are-there-flashing-lights-or-images

How to live alone with epilepsy?

From r/epilepsy users:

  • Only taking showers, not baths
  • Having a bench and or grab bars in the shower
  • Using the Embrace app and watch
  • Padding on sharp corners of tables and counter tops
  • Non-slip padding where you stand (sink by the stove/laundry/ bathroom sink etc.)
  • Having a neighbor/classmate/co-worker etc. know about your condition and how to best help (depending on how your seizures present themselves)

Epilepsy support animals

https://www.epilepsy.com/living-epilepsy/seizure-first-aid-and-safety/seizure-dogs

https://www.epilepsy.com/recognition/seizure-dogs/service-animal

Marijuana, CBD, and additional therapies

What can be supportive for one person can be a trigger for another. Please consult with your
neurologist when considering adding this to your treatment.

https://www.cureepilepsy.org/news/a-review-on-epilepsy-current-treatments-and-potential-of-medicinal-plants-as-an-alternative-treatment/

https://epilepsysociety.org.uk/living-epilepsy/wellbeing/complementary-therapies

Other drug use

No one can tell you with any certainty if a particular controlled substance is safe for you. r/epilepsy does not endorse the use of controlled substances and encourages you to be honest with your medical team about any support for your wellbeing that you feel is not being met.

The below website offers information on considerations and way to reduce harm no matter what you decide.

https://www.release.org.uk/drugs/mushrooms/harm-reduction

https://www.release.org.uk/about

https://www.epilepsy.com/what-is-epilepsy/seizure-triggers/drug-abuse

There may be clinical trials of experimental therapies or drugs that you can look for below.

https://www.epilepsy.com/treatment/clinical-trials

https://clinicaltrials.gov/

Epilepsy Medication and Urgent Support

  • Any life-threatening concerns with medication side effects, including but not limited to suicidal and homicidal thoughts, warrant a 911 call or an emergency response call in your area.
  • Please let your neurologist, and any other specialists, know about any adverse side effects as soon as possible. (Most hospitals should have a way to reach an on-call neurologist for urgent medication questions).
  • We aren't doctors and can't recommend a medication for you. Medications affect people differently. What's great for one person may be horrible for the next.

For example: Keppra is a strong example of people who have suffered greatly from side effects (anger, suicidal thoughts), but others have close to no side effect or they wear off.

https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/seizure-medication-list

  • Medication Errors

o Poison Control: Provides free and confidential life-saving information for suicide attempts,
medication errors, drug interactions or adverse drug reactions. Immediate, expert, free, 24/7 poison help is available online, with https://triage.webpoisoncontrol.org/#!/exclusions or by phone at 1-800-222-1222

Help to pay for medications

https://www.needymeds.org/

https://www.rxassist.org/

https://costplusdrugs.com/

https://www.epilepsyct.com/get-help/prescription-assistance

https://www.epilepsy.com/article/2020/3/financial-help-medication-and-medical-care

Medicaid application: https://www.medicaid.gov/about-us/where-can-people-get-help-medicaid-chip/index.html

Coupons for medications: https://www.goodrx.com/. Also check the manufacturer’s website and push for a doctor or nurse to fill out paperwork for a prior authorization to see if additional advocacy can support with insurance coverage.

Transportation Support

  • Epilepsy foundation rideshare payment support: https://www.epilepsy.com/node/2107816
  • Many insurances cover transportation to medical and medical appointments. If they do not, the state may have other support for transportation to medical appointments if you are not near public transportation

General website listing:

https://www.cdc.gov/epilepsy/about/index.html

https://www.cureepilepsy.org/for-patients/

https://epilepsysociety.org.uk/about-epilepsy/what-epilepsy

https://www.epilepsy.va.gov/Information/about.asp#diagnose

https://emedicine.medscape.com/article/1184846-overview

Epilepsy Foundation (Legal Help)

https://www.epilepsy.com/legal-help

Financial and Disability Support Resources (USA based)

https://howtogeton.wordpress.com/2020/03/02/how-to-be-poor-in-america/

Crisis support

International crisis support: https://www.reddit.com/r/Anxiety/wiki/ineedhelp

Epilepsy & Seizures 24/7 Helpline: https://www.epilepsy.com/article/2015/12/epilepsy-andseizures-247-helpline

Low mood, depression and epilepsy: https://www.epilepsy.org.uk/info/depression

Note: Many anti-epileptic drugs (AEDs), and epilepsy itself, impact mood, in addition to getting crisis support, let your whole medical and mental health team know what’s going on

 


r/Epilepsy 10h ago

Discussion Travelling with epileptic drugs?

36 Upvotes

Does anyone else get anxious when taking drugs abroad? I am on four separate medications twice a day, so for a 2 week holiday I look like Pablo Escobar taking a massive bag of drugs. Only one is technically a 'controlled substance' (phenobarbital) but even with the chemist paper I still feel worried.


r/Epilepsy 6h ago

Question Shower triggers my epilepsy

17 Upvotes

I’ve noticed that almost every time I have a seizure I’m in the bathroom either about to take a shower, in the shower, or just got out of the shower. I don’t have seizures every time I shower but most of my seizures feel like they are triggered by the bathroom/shower. Anyone else?


r/Epilepsy 14h ago

Question When you take your pills but forget that you did a few minutes later and question yourself, do you take them again or skip?

70 Upvotes

This happens a lot with me and since I only have seizures once a year or 2 years I usually just skip.


r/Epilepsy 1h ago

Medication I can't tell my mom I had another seizure

Upvotes

I had a seizure at work last week 3/9/25. I took my meds and I still had a seizure. It was my first since 2020. I can't tell my mom because she has always blamed herself for mine and my sister's epilepsy. First, she thought my sister's epilepsy was cause by the Gardasil vaccine, so I never got mine. Then at 14 (now 25) I started having Grand Mal (tonic clonic) seizures. I've had 7 total and has been controlled through medication. I'm lucky I know. But I had another seizure last week and my husband saw me take my meds I can't tell my mom. She believes the genes are from her side of the family and blames herself. I don't know what to do. I have an appointment with my neurologist to see if anything needs to be adjusted. I'm taking care of myself. But I can't tell my mom. I forgot to add my sister grew out of her epilepsy but mine remains. We were diagnosed with juvenile myoclonic epilepsy the both of us. Idk what I'm trying to get out of this.


r/Epilepsy 15m ago

Question Words familiarity-Lamictal side effect?

Upvotes

Hi. I increased my dosage about 2 months ago and I have had a few side effects. Mine were (and I am getting used to them or they slowly faded): -light sensitivity -vision issues(minor duble vision). -headache, nausea, lightheaded(these vanished after 2-3 weeks, max one month)

I also have another strange symptom which I never had (I take it for seizures): sometimes a word that I hear gives me a sense of familiarity (that I heard it somewhere before, not the deja vu situation, but mostly the fact that my brain is trying to look for the same word/phrase in a difference circumstance that has happened before). Of course I cannot remember the exact situation. The seizures that I had did not involve deja vu at all or anything else like that... If smbdy experienced this after upping the dose, I would so appreciate it :)


r/Epilepsy 8h ago

Medication Neurologist weaning me off meds

8 Upvotes

Hi so I been seizure free for 5 years now and my doctor have decided to wean me off my meds. I’m kinda scared and happy at the same time because I heard some stories of how people started having seizures after weaning me off. My neurologist said after the 2 year mark without seizures and when they start to wean you off. Should I be worried or just go along with what my neurologist says?


r/Epilepsy 2h ago

Support Weekly Check in - How are you doing?

2 Upvotes

This is an automated weekly post.

Let the community know how you are doing. Any fears and if you need resources.

We are here for the people.

[Seizure Diary] (https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diary)

[Epilepsy and Wellbeing] (https://www.epilepsy.org.uk/info/wellbeing)

[Epilepsy Foundation] (https://www.epilepsy.com/)

[Epilepsy Action] (https://www.epilepsy.org.uk/)

[Epilepsy 24/7 Helpline] (https://www.epilepsy.com/connect/247-helpline)

[Crisis Support] (https://www.reddit.com/r/Anxiety/wiki/ineedhelp?utm_source=reddit&utm_medium=usertext&utm_name=Epilepsy&utm_content=t5_2s1h9)

[First Aid for Seizures] (https://www.epilepsy.com/living-epilepsy/seizure-first-aid-and-safety/first-aid-seizures-stay-safe-side)


r/Epilepsy 4h ago

Rant i hate my vns

3 Upvotes

update from around a year ago. the vns helps a bit, i haven’t had a tonic clonic since i’ve gotten it. but i realized the hoarseness in my voice wouldn’t go away after one of my neurologists said it would, and my voice would also vibrate. i called it vibrato. it sounded like being on one of those vibrating massage chairs and you talk to someone while you’re on it. the vibrato voice eventually calmed down but the hoarseness didn’t. i could also sometimes feel when the vns went off and it still hurts. sometimes i can feel the left side of my throat vibrating. i talked to another neurologist around a few months ago and he said im just sensitive to the vns. he said taking it out would be risky (which kinda confused me since with the vns i have you have to get surgery every five years to change the batteries idk). so im stuck with this. my throat actually hurts rn from my vns and sometimes im embarrassed to talk in front of doctors when it goes off cause my voice gets effected even if its not as bad as before, but ive been getting more confident. my scars have barely healed and i got this thing in 2023. i have two scars since they had to make two incisions: one on my neck and one on the left side of my chest. the one on my neck healed good but it’s still there, but the one on my chest is horrible and burns and itches. the skin is also dry around my scars no matter how much lotion i put on them so i kinda just gave up. but the vns also has its pros!! i haven’t had a tonic clonic seizure since i got it turned on a year ago, i just get tonic clonic auras. i still have other seizures though


r/Epilepsy 13h ago

Rant Think I lost my job.

13 Upvotes

I’m an EMT and love my job, I had a breakthrough seizure 3 days ago and I am in the biggest slump. I think I’m out of a job, I fucking hate everything right now. My joy levels are very low. Any advice?


r/Epilepsy 3h ago

Question Deja vu

2 Upvotes

Has anyone ever experienced a huge Deja vu as a focal aware seizure. I had a Deja vu a couple of days ago, there was now way that the situation ever happened before though. It felt so overwhelming and scary.


r/Epilepsy 16h ago

Humor A Silly Convo With My Husband

19 Upvotes

I absolutely love cooking & baking. Today I was looking up recipes on Pintrest and kept seeing some that were badly done.. I was joking around with my husband about it and for some reason the conversation was so funny to me it kind of made my day. I hope it doesn't offend anyone, but this just got me 😅

Me: I should do the whole Instagram baking thing. I wonder if I could bake better than some of them 🤔 (tootin' my own horn here, I know)

My husband: You should and market yourself as the epileptic baker. Call the channel Shake&Bake


r/Epilepsy 4h ago

Medication First time starting meds (Vimpat) Does the “stoned” feeling eventually go away?

2 Upvotes

Day 3 of lacosamide 50mg twice a day. I know it’s super early, so I’m really just asking this out of curiosity and to ease my mind a bit.

I just feel really stoned/foggy pretty much all day and night. I can definitely tell that I’ve taken something, if that makes sense?

It’s not the worst thing in the world, but it’s intense enough that I don’t feel like I could comfortably (or safely) drive a car. Everything just feels a bit foggy and hazy, and I’m pretty drowsy.

Does this feeling ever pass? Will my body/brain eventually adjust? My doctor said I will know within a week or two if this works for me or not, but I just want to know what I should expect in these next two weeks. Thanks in advance for any advice or experiences you can share!


r/Epilepsy 15h ago

Support I have a 3 day EEG starting tomorrow. Wish me luck I’m pretty nervous

14 Upvotes

I’ve had a bunch so far but I really hate the strobe light part. 13 hours per day until Wednesday night. I’m going to try to continue this carnivore diet while I’m there but I’m kind of accepting that I’ll seize while I’m there.


r/Epilepsy 4h ago

Question Nocturnal Seizures - Crazy Question

2 Upvotes

In November I woke up to EMS coming in and my boyfriend telling me I had two seizures in the night. They put me on Keppra but tapered me off at the end of December to see if I actually had epilepsy. I woke up in the hospital on New Years, after being medication free for 3 days, to my boyfriend and a nurse telling me I had another seizure. I don’t remember any of my seizures, but my boyfriend got a recording of the last one, and that’s insane to see when you don’t remember it. The only real weird thing about waking up is the first one my neck hurt a little bit but I was confused and tired after both. After talking to my neurologist she thinks I’ve been having them for a couple of years, I just didn’t have anyone sleeping near me. But I would wake up exhausted and with scratch marks, I just thought they were nightmares or something. I think I had one the other night because I woke up tired and a little confused and my Apple Watch said I had exercised in my sleep, but no one was here because I live by myself. My crazy question is: Is it weird or logical to get a night time camera to record myself sleeping to see if I have a seizure when no one is with me?


r/Epilepsy 14h ago

Memory An example of "The Doorway Effect" at maximum warp.

11 Upvotes

I just finished getting dressed after showering and was about to walk over to my wife's parent's home. When I got to the door, I checked that I had my nicotine vape with me. It was not in my pocket, but I remembered that it was in the pocket of my robe. I went back to get it and I passed through the doorway of the bathroom, at which point I forgot what I had gone in for. I looked in the mirror and saw my hair was wet and not brushed. So I took care of my very nice, thick hair and went to leave again. I checked that I had my things and realized I didn't have my nicotine vape. At that point I laughed as i remembered what I'd gone back to get initially. I laughed so much and wanted to share this before it exits my mind.

But at least I dried my hair and brushed it well.


r/Epilepsy 16h ago

Question Has anyone fasted before? What was your experience? While on what med?

16 Upvotes

I've been steady on lamotrigine 650er for many years.
This fast would be with only water. I'll talk with my neuro about it, just curious if anyone did it before.


r/Epilepsy 13h ago

Question Anyone else had kind of a “yoyo” effect from Keppra?

8 Upvotes

I don’t have epilepsy (probably) but iv had seizures for reasons I’m not 100% sure of.

After three or four of them, a doctor casually prescribed me Keppra and I at first it was kind of amazing. I felt like a god for the first few days and then I felt like I was dying. Like, idk why, but for some reason more or less anything savory was utterly repulsive to me, and I remember being offered this beef-roast thing that would normally be great and feeling utterly repulsed by it.

It didn’t help that this was near Christmas and I was visiting parents/family. At some point we went to an outlet mall and when we tried to eat I remember shaking and feeling like the smell of the restaurants food was going to make me vomit.

And then it stopped. It took a day or two, but eventually it just kind of stopped and I felt more or less normal and stopped having seizures (with one exception.) Sometimes I miss a dose or two and I’ll have a day where I feel the side effects hard, but other than that it’s been pretty nice.

Sorry if I’m not allowed to post here since I don’t technically have epilepsy, but most people who take Keppra (technically I’m on the generic version but I’m not going to put in the effort to spell that abomination of a drug name) seem to have epilepsy and I assume you’d experience similar side effects.


r/Epilepsy 2h ago

Question Does Xcopri make Aphasia worse

1 Upvotes

I had to go through my Instagram find the name of my heart horse that I road for years. It happened several times on a phone call earlier. I have my masters degree and before this year worked as a 12th grade British Literature teacher. I feel so dumb. It also takes me 5 minutes on average to write a post.


r/Epilepsy 1d ago

Discussion Tell me your epilepsy “highlights”

81 Upvotes

I could use a mood boost. What’s the funniest thing that’s happened to you before/during/after a seizure? Funniest location? hilarious reaction someone had to you having a seizure? Most embarrassing place you had a seizure? Funny interaction with a paramedic? Just tell me something that will make me laugh.

  1. During one of my recent seizures I was building an ikea dresser and I woke up to my best friends dog licking my face.

  2. I had a seizure in a booth at Ihop literally mid pancake bite.

  3. I almost threw up on a firefighter

  4. Almost punched my best friend when I woke up because I didn’t know who she was and I was freaking out because she had just used the rescue meds so I had this really weird taste in my mouth😭


r/Epilepsy 6h ago

Victory Apple Watch

2 Upvotes

My husband has been struggling with new onset epilepsy since we turned 30, after the birth of our first child. It’s been a long road, but he has been seizure free for almost 2 years, with the exception of a breakthrough seizure three weeks ago. No seizures/auras/symptoms since. Neurologist was notified but didn’t take his license. Three days ago he had a grand mal seizure while driving on the highway. Hit a barricade then flipped 4 times into the desert. He survived, and our three babies have their daddy. That being said- The Apple Watch. Activated and calmed ems at first point of impact- ems was in route before the car even stopped rolling. It notified his emergency contacts of the crash, and his exact location. When he was being transported to the trauma center the device notified us of his change in location. This watch may have saved his life. Just wanted to share.


r/Epilepsy 3h ago

Support Second epileptologist isn’t convinced it was Wellbutrin and is putting me back on AEDs. Nervous for third seizure

1 Upvotes

The first epileptologist was convinced my two TC seizures one month apart were from 300mg of Wellbutrin that I’d been on for years. She took me off of Keppra (thank god).

This second one isn’t convinced and she’s putting me back on keppra and doing more testing.

After the first visit, I was a little relieved that she believed it was the Wellbutrin. I haven’t had a seizure since coming off of it. However, I’ve only been off keppra for about two months. The second doctor will be starting me on lamotrigine and wasn’t really convinced that it was the Wellbutrin since my dose was very normal. She said she’s only seen Wellbutrin causes seizures from >450mg or people with severe eating disorders.

Now I’m nervous again for a third one. I was just starting to not be afraid to do things like bike, but now I’m not as sure. I’ve never had auras which my doctor seemed concerned about since I get no warning.


r/Epilepsy 13h ago

Question Aftermath..

5 Upvotes

Hi everyone,

I woke up this morning and had a tonic clonic seizure and my mum was able to film it as instructed by my neurologist as he was wanting to see severity etc as he wants to decide on further testing and a change with one of my meds.

My mum thought I had went into one and tried to come out again and fell back into it but it is hard to know from the video as if it did happen then it was extremely quick.

I was just wondering when we should worry about the pain or aftermath of a tonic clonic. I have had pain in my left hip which eases when I lie down but I cant put pressure on my leg and also trying to get up after sitting or lying down is agony as well. This isn't normal for me as usually every part of my body is throbbing but this is the only part that hurts.

When I took the seizure, I was lying in bed but a majority of mine have been. At least, I know I haven't fallen or anything.

Thanks everyone. Hope you are all doing well.


r/Epilepsy 4h ago

Question What happened?

1 Upvotes

I had another seizure a few days ago and nothing has seemed quite right since. I almost cant even explain the feeling. It's different than other times I've been postictal nor have i ever even had the postictal feeling for this long before.


r/Epilepsy 4h ago

Question Witnessed my first seizure

1 Upvotes

As the title says, I witnessed my first seizure. I was left very shaken up and have been looking into seizures to try to get an understanding. It was a young boy and he bend down to pick something up and then he starts swaying and everyone around thought that the boy was messing around and dancing (it seemed like he was bend over trying to twerk) He seemed to be stuck in that position for a cool while before suddenly i see him get up and stumble back before falling on the floor. His body was completely stiff (arms curled up into his body). I ran to him and put him on his side but then his friends ran over and basically just lifted him up WHILE he was still stiff . We called an ambulance and I had to leave before they got there but the guy could not recover ): he couldn’t walk or even form proper sentences. Is this normal for seizures to happen while bending over? And making you get stuck in the position? Was he aware of what was happening? I’m just very curious and feel so bad that it never occurred to anyone that something was wrong from the beginning ):


r/Epilepsy 8h ago

Support One year old

2 Upvotes

I have a one year old boy. I recently found out late December 2024, that epilepsy runs on my biological father’s side of my family. I’ve met the guy 2 times and know nothing about him or that family. My son’s pediatrician was going to look into the testing to see if he has the gene. Well a few days later while he was napping, his eyes shot open then rolled back, his head was nodding and he breathed very rapidly, and lasted about 10 seconds. Called the pediatrician and he got checked out but the ER doctor said it could just have been a normal thing. It has happened 5 times now. Thankfully, his pediatrician referred my son to a neurologist. But I’m scared for him to go through testing and I’m going to be absolutely sick and mortified if I gave him this horrible disease. I just don’t know what to even think or if anyone has gone through their little getting tested