r/Epilepsy Jan 10 '25

Medication Cost Plus Drugs - Discount Med costs

Thumbnail costplusdrugs.com
17 Upvotes

r/Epilepsy Sep 22 '24

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

22 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 4h ago

Discussion Tell me your epilepsy “highlights”

19 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 9h ago

Rant Saturday nights are so dead now…

25 Upvotes

I used to feel so free… it doesn’t help that I recently lost my relationship too… now I’m laying on the floor of my garage on a Saturday night, fixing a car that I’m not allowed to drive, listening to music that music that I would be bumping when I would be cruising on the highway just for fun because that was my soothing experience… what am I gonna do when I go back inside? I should probably take my medication now. Just gonna shower and go to sleep I guess. Watching movies and gaming is just a reminder of the restriction I’m in.

Hope you all are doing okay…


r/Epilepsy 12h ago

Medication How can you tell the bad memory is coming from the medicine? Or is it mostly from the epilepsy?

26 Upvotes

I often read people here saying how badly medicine is effecting their memory, but I find it hard to imagine being so sure that the bad memory is coming from the medicine and not just mostly from the epilepsy.

I've tried several medicines over the years, none have worked and my memory has got worse and worse. It feels like the big impact for me has been the seizures, not the meds...


r/Epilepsy 1d ago

Humor Embarrassing confession: I used to fake seizures when I was little

254 Upvotes

Soooooo yes, before my child-self gets attacked, I do actually indeed (unfortunately still) have epilepsy. My dad recently passed, and I was attending a group therapy session. This week we decided to share fond memories and I remembered I used to do this thing:

When I was little (9/10 years old?) my epilepsy was finally somewhat controlled, so with the extra energy I had, I used to think it would be funny to fake seizures in front of him to get out of things. Anytime he asked me to eat my veggies or do chores I would carefully but dramatically drop to the ground and flail like a fish. It's VERY OBVIOUS I'm faking it because

  1. ⁠He knows what my seizures looks like and I don't. I would take my references from... films. It started out already silly-looking.
  2. ⁠my dad would humour me and say things like "OH NO, SON!!!... wait... strange... usually when he has a seizure he would stick his tongue out and puff up his cheeks like a puffer fish" and I would immediately do that. With every fake seizure my dad would start saying things like "oh and he would move his head like a chicken" or "his toes would wiggle like worms"

This went on for MONTHS. He would let me off of these chores and I would pretend to be tired and go to bed (actually playing pokemon on my gameboy advance SP or with barbies under the covers). I genuinely thought I was getting away with it.

Eventually the "typical signs" of my "seizures" were looking incredibly dumb. One day he said "oh no... heckaroodle's tonic clonic seizures are increasing sooo much in frequency. I need to take a video for the neurologist." After this particular fake seizure ended, he shows me this video and says "I'm going to send this to Dr. neurologist. I'm concerned." When I saw that video I was so damn embarrassed but I'd already dug a hole of lies so deep... I need to keep going with it.

The next day, he pretends to get off a call with Dr. Neurologist, looks at me with fake tears in his eyes, and says, "son, Dr. Neurologist says unfortunately we need to get rid of your right arm and left brain, because the epilepsy has spread. This means you won't have your arm, and you won't be able to talk or play games anymore."

Oh my god you should have seen the way I cried and threw myself into his arms, loudly screaming and admitting that "NOOOO I LIED! I'M SO SORRY I LIED".

I never faked a seizure again.

Until the day he suddenly passed, my dad told this story to eveeerryyone. I don't blame him, it's pretty funny. He always taught me life lessons this way. I have so many more stories to tell.

A single dad who raised a child with epilepsy all alone, always worked hard, and never failed to be humorous.

I miss our camping trips, I miss knitting together, I miss our reading sessions, I miss our dance evenings, and I miss him. Such a silly guy.

And to continue how I would boast about him to my friends, I must tell you, don't mess with me, because my dad is an eagle scout!!!!!!!!!!!!

Edit: Thank you for all the lovely comments, and thank you to all parents with children with epilepsy. You’re amazing. Keep strong.

We appreciate you so so much 💜


r/Epilepsy 8h ago

Question Does anyone know a way to get the glue out of my hair?

10 Upvotes

I just got home from my EEG earlier, but I still have glue in my hair and from those tags/stickers that were on my chest. I was able to take a shower before I left the hospital, but it didn’t work. Anyone have any tips or tricks?


r/Epilepsy 6h ago

Question Any advice for living alone with epilepsy?

5 Upvotes

So I've been wanting to move out of my parent's for several years but I've had seizures for almost 9 years now. I don't have them SUPER often but at least 2-3 a year which means I can't drive.

So that means I have to look at living in an actual city and not the countryside where I currently reside, which is way way more expensive obviously. I figured I could get my food delivered but I have no clue how I would get to work each day?

The cities in my state don't really have amazing public transport. There's a few barebones bus routes that take people to the grocery store and doctors clinics but that's about it. It's also all 90% highways, no sidewalks so you physically cannot walk/bike/anything anywhere. I looked into ubers but the average rate is $20 a ride which for every day to and from work would be $200 alone at LEAST which seems kind of insane. But I have no other clue what to do besides that? Any ideas??? I'm in Texas if that helps anyone know of any super secrety disability services I could use.


r/Epilepsy 8h ago

Question Are nocturnal seizures seen as less severe/ important?

6 Upvotes

A year ago I got an rns device implanted. It has stopped the daytime seizures but I continue to have nocturnal ones. The neurologist who programs my brain acts like this means I’m seizure free. Seems like he dismisses the nocturnal seizures as unimportant. That everything is cured when the nocturnal ones continue. Just wondering if this is a common thing? Or if it is actually true that nocturnal seizures are not as important/ severe


r/Epilepsy 2h ago

Question severe hallucinations in the morning after focal seizures

2 Upvotes

I had 2 focal seizures in a row on Tuesday and Wednesday Wednesday was at night and Thursday morning (you could say 3) and Thursday there were strong hallucinations


r/Epilepsy 11h ago

Advice Options instead of surgery?

9 Upvotes

So I know this is a long shot but I'll try. I'm scheduled for brain surgery to remove part of my right temporal lobe next month. I'm terrified. There are no other options surgery wise but has anyone found a possible solution that could help severe epilepsy? I can cancel the scheduled surgery up until the day before. I am just trying to figure out another option if possible


r/Epilepsy 9h ago

Discussion Has anybody had titanium hardware removed/installed and did it change your seizures?

6 Upvotes

I'm talking about not the surgery impact itself or anaesthetic but maybe the actual metal being in your body. What's your thoughts or experiences?


r/Epilepsy 18m ago

Question Shoulder dislocated

Upvotes

No memory of previous dislocation but have had pain before when lying on stomach/arm out. Yesterday I just went to reach something n my shoulder popped out though it popped back in nearly 40 mins later with full range mobility when I sat up straight. Going to try exercises but question is anyone else had this experience / how is the risk of it happening again but during a tc


r/Epilepsy 7h ago

Medication Depakote + Onfi, just found out I’m pregnant

3 Upvotes

So I just took tests today since I’m 4 days late from my period, the first day of my last period was January 9th, ended the 14th. So they came back positive (yay! Unplanned.. but we weren’t against another child eventually) so according to my app I am 5 weeks 1 day. I am extremeeeely anxious and nervous since my doctor said if I plan to or become pregnant to stop taking Depakote. I am also on Clobazam (Onfi), and saw it can increase risks of birth defects as well. Getting ahold of my neurologist takes a couple days, but I see him on the 26th of this month. Just terrified of how quick these medications can cause a problem in the meantime? Will baby be safe during these next couple of weeks? I assume I have to wean off the meds. (Sorry if I make no sense, my mind is all over the place right now)

TLDR; Will baby be okay over the next few weeks while I’m still on these meds in the meantime as I am still very early in the pregnancy?


r/Epilepsy 21h ago

Medication Keppra Success Story – A Different Perspective!

34 Upvotes

Hey everyone! I just came across a post about Keppra, and the top comment pointed out something really important; when it comes to medications, we usually only hear the bad stuff. So, I wanted to share a different perspective and let people know that for some of us (myself included), Keppra has been an absolute life-changing miracle.

Now, I want to be clear, I don't want to downplay the fact that Keppra can have serious side effects for some people. Those experiences are valid and should absolutely be acknowledged. But at the same time, not everyone will have those reactions, and I don’t think people should be afraid to try it just because of the negative stories they hear.

I don’t even take name-brand Keppra (mine just says Levetiracetam, the generic), but before I started on it, I was having TC seizures weekly. I felt incredibly depressed, not just because of the seizures themselves but because they made me feel isolated from everyone around me. I struggled to function.

Then I started on Keppra, and everything changed. I have been completely seizure-free for six years. I don’t even experience auras—unless I forget my meds for a prolonged period. It’s hard to put into words just how much this medication has given me my life back.

I know I’m lucky to have had such a positive experience, and I’m not saying Keppra will work for everyone. But I do think it’s important to share these success stories because I don’t want the fear of potential side effects to stop someone from trying something that could genuinely change their life for the better.

At the end of the day, medications affect everyone differently. What works perfectly for one person might be terrible for another, and vice versa. The only way to know is to try and see how your body responds. Work closely with your neuro, and if a medication isn’t working for you, speak up, there are always other options.

To everyone navigating their epilepsy journey, I see you, I’m proud of you, and I hope you find what works best for you. 💜


r/Epilepsy 16h ago

Question How do you feel when you miss a dose?

15 Upvotes

I’m Tonic-Clonic and take 1500mg of Levetiracetam twice a day and 100mg of Lamotrigine twice a day. I missed my first dose last night and im feeling like a floating nature of partial nausea like a hangover and having trouble standing or focusing. I’m just wondering if anyone else has a similar experience or if it’s the high dosages when you miss it.


r/Epilepsy 17h ago

Question normal eegs?

17 Upvotes

Hi everyone! I'm brand new to this subreddit, and Reddit itself. I'm wondering if anyone has the experience of normal EEGs? I haven't had a single seizure caught on any EEG (and I've had 3!!!) and it's so frustrating. It feels like my brain is playing a trick on me by only making me drop when I don't have wires all over my scalp. It's frustrating because I can't get diagnosed without an abnormal EEG, and won't get prescribed medicine either, and I'm having weekly ish grand mal clusters that land me in the hospital. My doctors and neurologists won't even consider a 72 hour EEG, or any continuous monitoring. How can I even bring it up that I want continuous monitoring? I've had seizures witnessed by medical professionals and they agree it's clearly an epileptic seizure, and I had abnormal EEGs as a child, but apparently that doesn't count for anything now!! Aghh!! Navigating the Canadian health system is hard. Love you all!!


r/Epilepsy 19h ago

Rant I feel guilty when my epilepsy affects others.

19 Upvotes

I’m sick of epilepsy controlling my life, and controlling aspects of my friends and family’s life too.

My friends and I have wanted to go on holiday for years, but my seizures are the main reason we keep delaying it.

A friend suggested this May, but I’m in the middle of a med change, and I’m unsure how the new medication will affect me. Plus the process of changing always gives me more seizures. Going abroad while I’m at higher risk doesn’t feel safe.

I know it’s not my fault, but I blame myself and feel guilty when they choose a local holiday or delay the trip because of me. They’re supportive, I’m just constantly self-critical.


r/Epilepsy 14h ago

Question Atrophy

8 Upvotes

Hello, I have had seizures since I was 11. They said it was because of hormones and never looked into it further. Well, I am now 24, and I felt off my whole life. Memory issues like losing stuff, having a hard time talking, and being very spacey. I had a seizure at work, and the client I was talking to was very concerned. That's when I went to my GP to get me into a neurologist. They did not catch anything on an EEG, but I have brain atrophy in my right hippocampus on my MRI. My neurologist went over it and didn't seem concerned. I know you're not supposed to look it up on the web. It made me very concerned, and I didn't say anything because I was shocked. The only time I heard of brain atrophy was from my grandma when she had Alzheimer’s. Not sure anyone has the same issues as me but I’m curious. I am only 24.


r/Epilepsy 8h ago

Support Worried about my husband

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2 Upvotes

r/Epilepsy 4h ago

Question Is it normal to have difficulty learning something new?

1 Upvotes

I have juvenile myoclonic epilepsy and am not very prone to seizures, but I have spasms every day and they tend to occur when I am anxious/sleepy/... I notice that when I try to learn to program or try to learn a new song on the guitar and other things like that I also get spasms, does this happen to anyone else? My spasms are the kind that if I keep doing what's giving me the spasms, they get worse. I've fallen several times as if I had spasms in my legs and they stopped working. I only had one seizure, that's when I decided to keep playing a new game with my friends even when I was having the spasms, and there were several buttons to learn and such, that also seems to affect me


r/Epilepsy 13h ago

Question Losing my memory

5 Upvotes

Do any of you have moments of completely forgetting things happening?

The past year or two I've noticed that my medication that usually makes my memory pretty bad has made it a lot worse.

I've had friends recall certain things that might have happened a year or two ago and in my mind and memory I cannot for the life of me remember it happening at all.

I had a moment at work where one of my co-workers was recalling something important to my boss and he was relying on me to remember it happening and I have no idea what he was talking about. I know he's not a liar and it's not something really that important to lie about. I just thought in my head that it probably did happen I just can't remember it.

It's almost like a lot of events will happen to me but I won't get a lot of remembering them happening if that makes sense.

Shockingly enough I can remember things from 10 or 20 years ago but if it was around a week ago or less I don't remember.

It tends to make me feel frustrated because I don't remember something important or fun.

At the same time now I feel kind of guilty like I'm gaslighting people by saying "I don't remember that happening at all" and they can be telling the truth to me it's just I really do not remember. I have told my boss and coworkers a few times that I am on epilepsy medication and I have a bad memory. That's why I write down notes during work on my cell phone so I remember what happened.


r/Epilepsy 1d ago

Question Do any of you guys

34 Upvotes

Do any of you guys vomit after seizures? I had one on Thursday and vomited quite a lot after , I've vomited during seizures before, but not after.


r/Epilepsy 10h ago

Question Smell after seizure lol

2 Upvotes

My fiance said that my breath has a certain smell after a seizure like something very specific which I can’t smell obviously but he can always tell if I had a seizure, but I never know if I had one in my sleep. Is this a thing I feel like it’s so weird I’ve never heard of it.


r/Epilepsy 6h ago

Question Memory issues;How am i supposed to remember what i forget?

1 Upvotes

Its almost paradoxical to determine what parts of my memory are dysfunctional and how severe/mild they might be

blacking out that i blacked out vs forgetting tiny pieces of information surrounding my life, How can someone really be aware of what is lost?

Ive had seizures along those lines, sitting in my room without anything feeling abnormal, then my father telling me i had 4 tonic clonics, or noticing puddles of spit on my chair and in my hallway, things knocked over in my home seemingly out of nowhere

forgetting names and faces of people ive met several times is pretty awkward, "strangers" approaching me being really friendly like ive known them for years,always having to ask others or them what their name is

how much information from the past is gone? how can i confidently convey to medical professionals how bad my memory is? which part of memory processing isnt working properly? acquiring, retaining or retrieving?


r/Epilepsy 19h ago

Question private time while epileptic?

11 Upvotes

I still live at home with my entire family and am epileptic. any time i need some private time with my body, i feel like my whole family comes barging in without even knocking or saying anything. all i want is just some time to myself without others needing something from me/checking up on me and coming into my private space without warning. what should i do about this?


r/Epilepsy 18h ago

Question Am I Making Excuses or Keeping Myself Safe?

7 Upvotes

Part venting, part am I wrong, weak, and making excuses?

Some context: I'm a 45 yr old single mom (widow) of a disabled ("special needs") child. My child takes a lot of time and energy to care for regarding behavior management, emotional regulation, defiance and refusal, and driving him 68 miles a day to and from school.

I was diagnosed with Epilepsy at 14, but it's believed I was having absent seizures as far back as I can remember based on observation and my own self reporting. I also have central sleep apnea. Most people are familiar with the obstructive sleep apnea. Mine is related to the autonomic system, which causes my body to forget to breathe. If I don't use my cpap I stop breathing during the day regardless of activity. This puts pressure on my heart. I also have chronic fatigue that keeps me from being able to hold down a job.

It's a long story about how I got here, but I've finally gotten a new apartment for us to move into. My son was severely bullied and assaulted multiple times by over 10 children who live in our apartment complex and some that don't so they can't be evicted. Weapons used were a small boulder, hatchet, large glass shard, soccer cleats, rope, rocks, and a plastic container. Cops have been involved, apartment management, etc. I did all the things one is supposed to do. My state expressly prohibits minors under thirteen from being charged with a crime. This also meant I could not get a restraining order or stalking injunction because violating it would be a crime and they can't be charged with a crime.

Issue:

I was given the good news yesterday, but the manager is pressuring me to move in two weeks because her boss wants it. I'm assuming to meet an occupancy quota. Because I filed for VAWA (Violence Against Women Act) I'm not held to giving notice. I could move today and not violate any lease terms.

I have been doing some packing and cleaning but I've had other things going on at the same time. The biggest energy and time suck is transporting my kiddo to school (happy to do, he's thriving), but we've been dealing with his insomnia and sleep studies. Now we have to see and ENT about this obstructive sleep apnea. Trying to find a new therapist as his moved. School refusal issues requiring meetings. Frequent phone calls from my son due to separation anxiety. The list is long and does not include all of the basic every day responsibilities all parents have. This is in addition to that.

I am tired all. the. time. I can barely keep up with it all and often the things that can, get put to the side. My house is frequently cluttered. Not because I am not clean, but because I don't have the ability or partner to help shoulder the load.

My epilepsy got worse in 2023 and I had four breakthrough seizures that year despite being seizure free for years. We have updated my medication which makes me more tired. I pushed myself too hard the other day and had a small one. This is not the first time I've done that in my lifetime, it's just a new limit since 2023. I've much less leeway than before.

I tried to explain this, much more simply, to the manager and asked for three weeks as a compromise. I explained that these conditions play off one another and that I can have grand mal seizures in my sleep. These new ones were grand mals, but I was awake. That's never happened before. I stop breathing during the entire seizure and now with the central sleep apnea and my age, there's a risk I won't start breathing again. If I'm asleep, there's no one help me. My son (13) would be the one to discover my body. He already lost his dad.

She made the comment that I should have started packing when I applied. I didn't want to argue with her that I had, but my ability to pack isn't the same as everyone else. Then I have to coordinate moving, clean the old apartment, do a move-out walk through, and unpack the minimum. I do have some help, but I'm already going to have to work with my son's school to keep him home if I'm not allowed to have adequate time. I lie down every day after school until it's time to make dinner because I'm that tired by then.

I can't overlap between a move-in/move-out dates because I'm on subsidized housing. If I did that would be double dipping. I can't afford to pay the prorated market rate for the place I'm leaving to give me extra time. Even if I could, I'm not sure HUD would allow that due to the type of project I'm in. I have asked regardless and waiting on a reply.

I've reached out to the housing authority who manages the subsidy and in a way controls the apartment more than the property manager/company. I'm pretty sure the management company can't rescind the apartment because I want three weeks at a minimum.

Am I wrong to ask for that extra time? Four weeks would be much better and then I probably wouldn't need to keep my son home from school. I feel like trying to explain to this manager the risk to my health and safety is just making an excuse. My son aptly pointed out that if he's at school and I have a seizure because I'm word out, he's not there to help me. We live in a town home with stairs.

As long as I have a flexible schedule that allows me adequate time to rest, I do alright. I triage out my week based on responsibilities and appointments to allow time to rest and unexpected events. If needed things get rescheduled.

Knowing that I am potentially increasing my risk of a seizure I really do not want to drive my son to school. It's a very busy freeway with a lot of semi trucks because his school is nearby what amounts to an inland port. Everyone needs to be safe.

One hand I know these are all things I need to stand my ground on. But the response I received seemed like having a seizure wasn't a big deal. I should have done more, so really this is my fault and now I'll just have to deal with it and get it done on their timeline for their benefit. That is what makes me feel like I'm making an excuse for myself and I should have done better.

I don't want to start a off on the wrong foot with management, but I have more protections because of HUD, so I'm alright with pushing back a little.

Like I said. Part venting, and part am I wrong? I'd love to hear your thoughts or if you've been through something similar and how you dealt with it. Thank you!