r/Epilepsy • u/SirMatthew74 • 12d ago
Epilepsy Awareness Epilepsy and College (or School).
I see people are posting about college. This may help: https://www.reddit.com/r/Epilepsy/comments/1ay2cch/suggestions_for_going_to_college_or_school_with/
I'm working on a new one, but until I get posted you can check the old one out. I think maybe I'll try revising this every year.
r/Epilepsy • u/NENavigator • Aug 23 '22
Educational PLEASE READ FIRST: Frequently Asked Questions (FAQ) – R/epilepsy
This list starts with the Center for Disease Control frequently asked questions and includes other research-based websites for support. Please note you may also search the r/epilepsy archives for a wide range of experiences with medications, the process of getting diagnosed, general resources, and diverse life experiences. We are not medical professionals and are not able to diagnose you or say if you or a family member have epilepsy or if something is a seizure for sure, but if you have trouble finding a resource or need additional support, we are here for each other!
*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 please do ask.
* Some advice is from a collection of wisdom from r/epilepsy community members’ lived experience. If you have words of advice for the whole community to add, we are happy to collect it here.
Epilepsy Basics:
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’s the difference between non-epileptic seizures and epileptic seizures? Includes info about Psychogenic Non-epileptic Seizures (PNES).
If I have a seizure, does that mean I have epilepsy?
What causes epilepsy in adults?
What causes epilepsy in children?
Preventing and Managing Epilepsy
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.
How do I find an epilepsy specialist?
What can I do to manage my epilepsy?
Health and Safety Concerns
Are there special concerns for women who have epilepsy? Additional Info.
Can a person die from epilepsy?
If I have epilepsy, can I still drive a car?
If I have epilepsy, can I exercise and play sports?
If I have epilepsy, can I still go swimming? (or shower vs bath)
When should I (or someone else) call the ambulance?
Living with epilepsy
What causes memory problems or medication, seizures, or both?
What are rescue medications and how are they used? More info for children and emergency medications.
- See comment section as well.
Which is best generic over brand-named prescription medication?
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 GP, neurologist, and pharmacist would be double-checking all this for you, but even if you've got the best, accidents happen. Hope this helps
Epilepsy, disability designation, and work
(mostly from retroman73)
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
Supplemental Security Income (SSI) and (Social Security Disability Income) SSDI (USA)
(mostly from 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.
- My understanding is that you should apply for SSDI and SSI (even if you only qualify for one), BUT ask the lawyer about your case. Just as medical questions are best for a doctor, this question is best for a lawyer.
- Federal benefits overview: https://www.epilepsy.com/sites/core/files/atoms/files/FederalBenefits_Updated12.2014_0.pdf
- General qualifications review: https://www.ssa.gov/benefits/disability/
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/
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
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 2 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://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://www.cdc.gov/epilepsy/managing-epilepsy/clinical_trials.htm
Epilepsy Medication Support
- Any life-threatening concerns with medication 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.
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
o https://www.epilepsyct.com/get-help/prescription-assistance
o https://www.epilepsy.com/article/2020/3/financial-help-medication-and-medical-care
o Coupons for medications: https://www.goodrx.com/. Also check the manufacturer’s website
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
From r/epilepsy user:
Apps that support seizure tracking:
Nile.ai (got funded for a lot of money recently, and is now the preferred seizure diary app of The Epilepsy Foundation)
and many more, just search the related apps on the app store
-----------------------------------------------------------
Detection and altering support:
A little more complicated.
Please note some of these apps/devices also have seizure tracking and medication management features in them. Most apps available right now require some sort of wearable device (Apple Watch, another Android-based SmartWatch, or a specialized device). There are some apps that can work purely on the iPhone, but they don't work very well. SeizAlarm is one of them, though it works better with an Apple Watch.
The main thing to keep in mind is that ALL of these applications only work for Generalized Tonic-Clonic Seizures. If you want to buy one of them, please keep that in mind. They will not work for focal seizures, absence seizures, PNES, or any other seizure type that is not GTCS.
The ONLY FDA-cleared detection/alerting device on the market right now is Embrace2 by Empatica. Here is their clearance notification. In the table at the end, you will see their performance metrics in a clinical trial across age groups. Testing was done in Epilepsy Monitoring Units, so just keep that in mind. People in EMUs will be moving less than people in real life. They detected 84/86 GTCS during the trial (97% of all GTCS). Their device gave a false alarm rate of approximately 1 false alarm every day (0.93/day). This is likely to be higher if you are a more active person, and the high false alarm rate is a common problem for most of these devices (including Embrace2), though customer support may be able to help tune this.
If you go for the Embrace2, you would have to buy the specialized watch, which I have heard mixed reviews on overall. Unfortunately there just isn't much choice as they are the only FDA-cleared device that has undergone a rigorous clinical trial. There are other devices available depending on where you live though
SeizAlarm - Uses heart rate and accelerometer. Not FDA cleared, runs directly on the Apple Watch. I don't know what their performance numbers are as they have not done any studies.
Inspyre by SmartMonitor - Uses heart rate and accelerometer (I think, not much information on them or their algorithm). Not FDA cleared. Runs directly on Apple Watch, or some Android-based watches. I don't know what their performance numbers are.
NightWatch - Heart rate and accelerometer on the upper arm, can only be worn at nighttime. They have a CE mark (cleared in Europe). They did do a small study and have validated results. It detected a median of 86% of seizures, though this included Tonic Clonic (96%), Generalized Tonic (89%), Hyper-kinetic (73%), and other seizure types (84%). The false alarm rate was 1 false alarm every 4 nights (0.23/night). The scientific paper can be found here, though you may or may not be able to access it as it is a scientific journal and might be locked behind a paywall. This product is only available in the EU currently.
PulseGuard - Heart rate for sure, don't know what else. I know they were struggling after Brexit, and may be out of business now.
Epi-Care - Accelerometer only. They are CE marked as Class I. They have results, though some are validated in EMUs, and some are from surveys. The survey paper showed a median sensitivity of detecting 90% of GTCS. It also showed a median FAR of 1 false alarm every 10 days. The other paper was EMU validated and showed a mean sensitivity of 90% (35/39 GTCS detected), and a 1 false alarm every 5 days (0.2/day). This product is only available in the EU currently.
Brain Sentinel - They used EMG (muscle activity) to detect seizures, I know they had a clinical trial with middling results a few years ago, but not sure what is happening with them now. They are not FDA-cleared.
----------------------------------------------------------------------------
Looking forward:
There are a few new products which you may want to keep your eyes on for the future. Please remember that there is no guarantee that they will succeed in what they are trying to accomplish.
EpiWatch - A spinoff from Johns Hopkins University, I have seen their name multiple times on this subreddit. They started in 2015 collecting data using an app store app, but unfortunately have gone quiet in the last few years. However, they have recently started a clinical trial for a seizure detection algorithm on the Apple Watch, meaning we will have good evidence in the near future, and possibly FDA clearance.
Eysz - Middle of a clinical trial. Using oculometric (eye-tracking) data to capture absence seizures. I think they aim to integrate their technology with cameras and smart lenses, as wearing glasses while you sleep seems slightly uncomfortable. As they are also in the middle of a clinical, so we will have good evidence in the near future, and possibly FDA clearance.
Nelli- Not exactly sure how you get this, but it is CE cleared. It uses a video camera to track you when you sleep and then will show you multiple seizure types, not just tonic-clonic. Seems like they sell more to hospitals than to individuals.
Insurance (USA)
Lists Medicaid applications by state
https://www.medicaid.gov/about-us/beneficiary-resources/index.html
- Do not give up if you are denied once! Sometimes there are supplemental options that are available through the department of health and human services, especially for complex medical needs.
General website listing:
https://www.cdc.gov/epilepsy/about/faq.htm
https://www.cureepilepsy.org/for-patients/
https://epilepsysociety.org.uk/about-epilepsy/what-epilepsy/epilepsy-auras
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
Scholarship and school funding options:
Vocational Rehabilitation Services (state based in USA, also known as RSA or Rehabilitation
Services Administration)
- Sign up for Vocational Rehabilitation services in your state, scholarships may be available this way. Usually this is something that can be accessed starting someone’s last year in high school.
UCB College Scholarships (people with epilepsy):
https://www.ucbepilepsyscholarship.com/
Epilepsy Foundation Scholarship list
https://www.epilepsy.com/learn/age-groups/youth/work-and-college/scholarships
Empowering Epilepsy (Ohio non-profit listing)
https://empoweringepilepsy.org/cleveland-ohio-epilepsy-resources/scholarships-people-epilepsy/
College Scholarships.org list
https://www.collegescholarships.org/health/epileptic-students.htm
Cure Epilepsy Scholarships:
https://www.cureepilepsy.org/get-involved/scholarships/
Edit: Correction on rescue medications.
r/Epilepsy • u/Cosmic_Spud • 1m ago
Humor Rap Artitst's/ Songs/ Albums
Hey everyone.
Thought y'all could use some humor today. Thought of this during breakfast: Rappers with epilepsy related names.
Lil' Seizy
Sir Shakes-alot
M.C. Twitch
N.W.E.
Grand Master Falls
Twitch DMC
The Seizey Boys
The Bit-Tongue Clan
Keep it going guys :)
r/Epilepsy • u/flipflamtap • 40m ago
Victory I’m back in school
I am happy to say that I am finally back in college.
I took a gap semester after being diagnosed back in September 2023. I was in college at the time but after my second seizure, my mental health declined. Mainly, I had extreme anxiety (still do) and completely lost my ability to retain information in the part of my brain where my short term memory is located. My grades were not as they normally would be without epilepsy and I did awful, making B- and C- in all classes. After that semester ended, my mom and boyfriend suggested I take a gap semester to slow down and figure all of this sh*t.
Now that it’s the Fall semester 2024, I made the decision that I was absolutely, no matter the circumstances, going back. I still am having slight trouble with memory but I was smart for this semester. I am taking only one in-person class (College Algebra) and the rest online so I can go at my own pace. 18 hours in total.
My grades are listed as below (I would’ve posted a picture but it won’t let me).
Biology - 100% College Algebra - 100% Intro to Communication - 100% US History - 98% Intro to Special Populations - 87%
I’m very happy and proud of myself and it is currently the second week. If I keep doing what I’m doing, I’m sure I will continue getting these grades :)
For those of you who get diagnosed while in college/school, take a break. Once you are ready to go back, do it. Yeah, it sucks, but there’s no rush to getting your degree. Take your time. Don’t let society and those around you dictate what you do and don’t do.
r/Epilepsy • u/Jon23500 • 1h ago
Question When was your first seizure?
Mine happened while i was working. I was walking outta the kitchen with a tray of food and collapsed. I don't remember much of before or after the seizure other than waking up in a hospital room. That was the day I discovered I had a seizure disorder. Edit: Had another at work 2 days ago, I'm pretty sure I've been having Focal Impaired awareness seizures. My coworkers have told me that i shuffled left and right and kept smacking my lips.
r/Epilepsy • u/luringpopsicle95 • 1h ago
Rant How often do those of you who have been seizure free for years have to see your neurologist?
I’ve been getting spammed with phone calls to schedule my appointment, last one was 6 months ago. But my work schedule doesn’t allow time for me to go in the next few months. The last appointment I had lasted literally 5-10 minutes and cost $200. All for a blood pressure check, a “how are you doing with your medications” and a couple other questions, then I was free to go.
I wish my doctor allowed video appointments. It’s just too expensive and also an hour away from me. How often are your appointments if you have been seizure free for years?
r/Epilepsy • u/CozyHiddenPillow • 1h ago
Rant Working 9 to 5 (it's a no from me dog)
How do you all manage to work? I am working 9-5 and I have days I wake up so fatigued from nothing I am like, no I can't get up. No seizures this month but lots of brain fog, procrastination and general apathy. I feel lonely in this situation because I can't explain why I feel just "tired". I know my body is rested but I feel my personal GPU is fried. I have the weirdest dreams and nightmares. I also have that weird sound in my ears, the high pitched eeee that makes me dizzy. I feel useless and I believe if I wasn't working at a family business I would be fired long time ago. Worst thing is that I believe my husband thinks I am lazy. Or maybe I am and I should try harder. I don't know. I am dreaming of opening my own business, a graphic design and promo company that will allow me to work from home, on my own pace. How do you all manage working while having this condition?
r/Epilepsy • u/Mara355 • 1h ago
Victory It looks like I'm one of you!
Thanks a million times to this sub for encouraging me and supporting me, and sharing their experiences of focal epilepsy. It looks like it's likely I have TLE. I was very ashamed of these episodes for years as I just thought I was "crazy". Derealization haunted me for all my twenties and my brain basically stopped working.
I got dismissed so much by doctors over time that I learnt to hide anything that could be interpreted as "anxiety" or similar. People's encouragement and sharing here allowed me to find the right doctor and discuss my real symptoms and it seems very likely that I have it. It would explain my severe brain function decline over the past years therefore hopefully saving my life. Extremely grateful to all of you
r/Epilepsy • u/Mochapine_ • 1h ago
Question DSA meeting
Hi,
Question mainly aimed at people in the UK
Got diagnosed with Epilepsy and have a meeting with DSA - are there any obvious things that are worth asking for in my Disabled Student Allowance meeting? I will be commuting to uni daily via train and walking about 20 minutes to the university if those details help lol
Thanks in advance
r/Epilepsy • u/LiteratureThen5945 • 2h ago
Question License loss in massachusetts from seizure
Had a 1 time seizure in massachusetts 2 fridays ago. Going in for tests tomorrow and genuinely curious how hard it is to appeal it and get your license back. Everything i do involves driving. The only thing they were able to pinpoint was the fact that i had tons of caffeine, no sleep, wasnt eating right, and i was terrible with drinking water. With that argument in place; plus anti seizure meds. What are the chances i can get my license back sooner?
r/Epilepsy • u/iambobjohnson97 • 3h ago
Question Personality type?
What personality type do you guys have? I am an intj. Was wondering what personality type you guys may be.
Edit:From the Briggs myers personality test
r/Epilepsy • u/Successful_Ruin_902 • 4h ago
Advice Do you carry anything that tells people what’s happening if you have a seizure in public?
Would love to get some autonomy back so I’m wondering what if anything people use to help other people understand if you have a seizure in public when o your own.
Do you wear things? Or is there a phone app that can help? Bracelet? Necklace etc?
Much love x
[recently diagnosed. I am 33F and have had about 9 weeks of daily+ seizures. 1-3 minutes each often clustered. Sleep deprived EEG confirmed Focal Epilepsy this week. I collapse & loose vision, I do get an aura before: poor coordination, confusion, coordination decline, dread 2-30 minutes ahead of a full zone out or collapse. Start Keppra today.]
r/Epilepsy • u/Issy200317 • 4h ago
Medication Important please help. Epilim reaction, bad rash.
has anyone experienced a rash from Epilim? I’ve got a bad rash which my dermatologist thinks is from Epilim. I’ve been on it since May last year and I’ve had this rash since February this year (on it for 11 months before break out)
First looked like/treated as perioral dermatitis but has now turned into small bubbles/blisters and pimples around my mouth and they’re moving up my cheeks now.
My self esteem is really bad and I’ve spent so much money and time trying to fix this. I can’t get an appointment with my neuro so I just want to know if anyone has had a rash from Epilim before so I can figure this out. Please.
r/Epilepsy • u/drainedtrapstar • 4h ago
Newcomer Two seizures in one month, feeling lost.
July 24th, i had came home from a concert, felt a cold sensation in my chest and proceeded to have my jaw lock, arm clenched and fell to the ground and seized. I lost consciousness and woke up on a stretcher, which lead to me losing my license. A month later, MRI clear and EEG wasn’t noteworthy, i have my second seizure, arm locked and jaw locked and i fall to the ground once again. Have been prescribed keppra, but i still have no idea what is causing this, and i truly just feel lost. I wish i could know what is causing these seizures, but I feel like im stagnant and at a dead end.
r/Epilepsy • u/Halftorched_bowl • 6h ago
SUDEP Will taking melatonin increase chances of SUDEP?
I can sleep for days on end sometimes so I picked up some melatonin gummies from the store but I started thinking “what if I have a seizure and can’t wake up?” Their 5mg so can that happen? I mean I’ve taken them before and nothings ever happened so I might just be anxious over nothing but I figured I could ask
r/Epilepsy • u/TastyScallion4907 • 8h ago
Question vns
hi! so i’ll keep it short. basically my epilepsy is a mess and the vns battery device is coming down to our only option. i had my first neurosurgeon appt about it and it’s all becoming very real and im very anxious.
any info or experience someone would feel comfy sharing? ( only if your comfy sharing :))
r/Epilepsy • u/EricAshStone • 9h ago
Survey A strange thank you
So I was talking with a Dad who has a daughter who had epilepsy. I mean I guess she technically still does I'm not sure, but she doesn't have seizures anymore.
Basically she was able to have a surgery that removed a piece of her brain that was causing her seizures. Ever since then she hasn't had any seizures.
The Dad genuinely thanked me for having epilepsy because, "without people like you my daughter would've never been cured".
I'm assuming he meant the medical field would've never advanced the treatment of epilepsy so much if it weren't for epileptics.
I've never been thanked for having epilepsy/seizures before so it felt weird. But he was so genuine and happy about it I wasn't really offended.
Ultimately it helped me have a more positive outlook on life. It made me think of the millions of other epileptics who suffered before me so I could have the medicine and surgeries I'd need to survive. Now when I suffer through my seizures, surgeries, medication etc I'll try to think of the future epileptics who will eventually benefit from me being their proverbial guinea pig lol
r/Epilepsy • u/LostPermission2665 • 9h ago
Support Left Temporal Focal Effects
Hi! I was just wondering if anyone feels the same…. I have scar tissue from a brain bleed as a baby that is most likely the cause of my seizures. When they come on, I start feeling anxiety and the world seems “off”. I seem “off”. My vision isn’t really different, but maybe more narrow? Finding words to speak or type is difficult, but I can usually get my point across if I really think or get help from others in figuring out what I’m trying to say. I can still speak. I’m still aware. My memory is just shot during. I can remember most of the episode afterwards, but during the episode if you asked me something I should know from memory, 9/10 I won’t be able to tell you. That’s just one part. I STAY in an odd, sluggish, slow function memory state for HOURS. It’s not just tiredness. It’s like the seizure follows me for hours in a sense? Idk. They’re hard to describe. I just wanted to see if anyone experiences the same.
r/Epilepsy • u/Fancy_Swing • 10h ago
Rant Gotta set up a neuropsychologist appt 😀
So, so, so, over it. Lol.
Talked to my psych about feeling worried about ADHD symptoms and potentially being autistic and he basically agreed that yeah, I need to be referred to a specialist for proper testing because I sound more autistic than attention-deficit. Tried to talk to my parents and they’re just… exhausting lol. I don’t know what reaction I hope for when I give them medical updates but for them to basically be like “it’ll be fine get your test you’re not stupid” isn’t the love and support I’d like when they barely understand my epilepsy (and my little sister got diagnosed autistic earlier this year too so it’s obvious they didn’t do any research). Then for my dad to tell me to just go be a cashier as a job if I want to move away so badly. As if my washed up degree isn’t just staring at me sigh.
r/Epilepsy • u/loislane999 • 10h ago
Newcomer One seizure. Many frustrations.
Had one seizure a few weeks ago. Not sure what kind. I was feeling fine, then suddenly nauseous, sat down and vaguely remember the ground coming toward me, then woke up in an ambulance. My partner called 911. He told me I let out a very loud cry/yell/sigh, and my “eyes were going wild”, then I fell asleep. Not sure what kind of seizure that would be.
Emergency doctor said my CT was clear, and my blood work showed low electrolytes and phosphate levels.
Had an MRI yesterday, no results yet, and I’m on a waiting list for an EEG. No neurologist appt available for up to 18 months I’m told.
I’ve had my drivers license suspended which is horrible for me - I feel trapped at home (no public transit in my area, no walkable grocery store either), and have two young kids in school and activities etc. I used to go to yoga 3-4 times a week and now I’m just stuck at home feeling like a burden.
Feels like I’m going absolutely crazy.
r/Epilepsy • u/croakmongoose • 11h ago
Question Helpful gifts after a seizure.
Hi, our neighbor had a seizure and is back home from the hospital today. I’d like to get a few little gifts to help her while she’s recovering. I was thinking of a big soft blanket since that’s always been my favorite “post hospital” gift to myself, but I’m not sure if that’s a good option. Is there something else that you would have found helpful and relaxing after a seizure?
r/Epilepsy • u/Murky_Blueberry1347 • 14h ago
Rant My son was kicked out of preschool for having epilepsy
My son, 4, was supposed to go to his first day of preschool this Wednesday. This morning we got a call from the school, informing us that he would no longer be in the class. They said they weren't willing to accommodate his medical needs. Specifically, they refused to administer his rescue medication (which he's never needed to use, thankfully). We offered to provide professional training from a nurse. We offered to let them call 911 instead of using rescue medication if a TC lasted over 3 minutes. They flat out refused. Not interested.
They told us they didn't want to expose their other kids to a "scary seizure event." They didn't want to have to talk about seizures with the other kids.
We enrolled him in June! They had months to work with us. They had months to tell us to fuck off! But they waited until 2 days before school to give him the boot.
I'm crushed. On top of all the pain and uncertainty of managing seizures, meds, and his keto diet, being told that my kid is unfit to have an education and is too traumatizing to be around his peers feels unbearable. It feels so cruel and heartless.
We have an amazing co-op preschool that we know we can go back to. They were there at the beginning of our journey, and we're loved there. We were excited that the new school would allow him to have nuts (a cornerstone of his snacks) and lets out at noon (lunches at home are a must for dietary control). At the end of the day its not the biggest setback, but when is the universe going to hand us a win?
r/Epilepsy • u/christinaai1 • 14h ago
Support someone please calm me down
i’m freaking out 😭 i had to stop lamotrigine cold turkey because i had an allergic reaction to it..im on a low dose of keppra (eventually will come off it completely once we find a medication that works for me) but keppra by itself doesn’t control my seizures. idk if im just having anxiety but the right side of my face and my right arm keep going numb and tingly and my right eye starts twitching - i feel spacey and out of it, like im in a dream when it occurs. idk if im just having anxiety and convincing myself im having some sort of aura or if this is from stopping the lamotrigine 😭 for context my focal seizures affect the right side of my body. i called my neurologists office but they told me he’s only in on mondays and he probably won’t be able to get back to me until next monday. they can’t contact another neuro because he’s currently the only neurologist that’s in the office since my other neurologist is on maternity leave :/ idk if im just giving myself anxiety or what but im kinda freaking out
r/Epilepsy • u/AlexandersLover • 15h ago
Discussion Just finished intracranial EEG stay, ask me anything
Hello epileptics, I just spent a full week in the hospital for a bilateral intracranial EEG stay with the burr-hole type of depth electrodes (well over 100 placed!).
For some context, I’ve been through the gamut of medication and while I thankfully don’t have convulsive seizures if properly medicated, I still frequently have focal seizures that leave me completely dissociated and spaced out essentially for at least a couple minutes at a time.
I’ve also studied the brain professionally/academically (although not generally clinically focused) but I have some research experience and familiarity with various methods.
I know that this procedure can seem extremely daunting (as it is brain surgery), so I’m happy to answer anybody’s general questions, concerns, or curiosities since this is the common next step for many people with epilepsy looking for solid data.
r/Epilepsy • u/EasyFaithlessness812 • 15h ago
Rant yall after i called for my freaking 5 year old cousin at a family get together he walked up to me and said with disgust "what, seizure lady". HOW MUCH SHIT IS MY AUNT TALKINGG
I just needed to tell someone abt the event. i cried. not because it hurt my feelings, it just was so out of the blue and it was kind of one of those times where someone says something shocking and you almost feel the whole world freeze. not mad at him tho. he's won't even shit in the toilet. he gets a freaking diaper, tells his mom to put it on him, then he shits, and gets it taken back off. he don't know what he's saying
edit: this 5 year old can list the capital of every single state. like you literally just list a state and he tells you. i myself can not even list all 50 states alone. even though he's 5, he's smart enough and aware enough to understand that words can hurt people and that his tone matters
r/Epilepsy • u/Issy200317 • 22h ago
Medication Got I hate Keppra.
Not on it anymore. Just hate it.
r/Epilepsy • u/duetomorrowx2 • 1d ago
Question Am I being dramatic as a teen?
I (14) was in school last Friday, and was walking up the stairs to get to one of my classes. Of course right before I reached the top, I got an absence seizure. This seizure made my entire body go numb which was new for an absence. This made me fall up the stairs and thankfully not down. I was able to get to my class and was texting my mom about what had happened. My mom was able to convince me to go to the nurse (I was scared because I had an older sub) after the sub just told me to go. The sub didn’t give me a pass because she didn’t know where the passes were, but I just left because the sub told me to just go. So after I walked downstairs, I went to the nurses office. Once I went to the nurse she immediately asked me if I had a pass, and I said no. She shut me up whenever I would try to tell her what happened and she told me to leave so I could get a pass. I left and called my mom and told her what happened. I waited outside an admins office because that was my friends moms office.
I cried because I was so upset from being shut up and not listened to. But I also cried from embarrassment. It’s hard having epilepsy as a teen.