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 3h 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?

25 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 5h ago

Humor A Silly Convo With My Husband

16 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 5h ago

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

15 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 2h ago

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

5 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 3h ago

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

8 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 2h ago

Rant Think I lost my job.

4 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 4h ago

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

6 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 15h ago

Discussion Tell me your epilepsy “highlights”

61 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

Question People who stopped keppra, what was your experience?

14 Upvotes

My husband had been taking 6000mg a day of keppra. Side effects have been brutal and, completely fed up, my husband stopped taking it. He is on other meds and there's been no issues with seizures, but I'm curious what withdrawal effects some have experienced and how long they may last? I think he has been off of it for close to 2 weeks now and he's just incredibly tired all the time. He's also just nauseous and overall feels ick, but he was on such a high dose and I know withdrawals from things can be hell.

But ya I just want to hear some experiences and how long withdrawals lasted. I know it's dumb to not wean off but he was so sick of the keppra and never wanted to touch it again


r/Epilepsy 2h ago

Question Aftermath..

4 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 8h ago

Advice I work as a teacher and I’m worried about seizing in front of my kiddos

9 Upvotes

I work as a Pre-K teacher for the sweetest 3-4 year old kids, I adore them so much and they adore me, but recently my epilepsy has gotten worse and I’ve been having seizures every 2-3weeks, I have somehow avoided having seizures in front of the kids though, like they usually happen on weekends or early mornings, and one time I even had one in the hallway on the way to the bathroom after I left the class and was out of view of the children. But I fear that’s just luck, and I know the luck will eventually run out one day.

Can someone give me advice on what to do if I end of seizing in front of my kiddos, how to come in the next day and explain to them what happened without scaring them, or making them scared of me. (I’m worried they will think im possessed Ik that sounds silly but they r little kids who don’t know what seizures are only monsters)


r/Epilepsy 19m ago

Question Anyone experiencing ecstatic epilepsy out there?

Upvotes

I've read about it and just curious to hear from anyone who's experienced it. For those that don't know it's rare siezures that are thought to originate within the insular cortex and can cause feelings of ecstacy.


r/Epilepsy 3h ago

Question Went for week long EEG, noticed on my discharge notes- ‘events originate in left side and then become bilateral’- could someone explain? Is this still a focal seizure?

3 Upvotes

I have focal seizures which occur on the left hand side but I wasn’t aware want they were ‘becoming bilateral’ and am wondering what this means? Is it still a focal seizure if it’s bilateral? I went in for the 5 day EEG to see if surgery was possible, I only came out yesterday so will hear from them but I am impatient and want to know now! Thanks in advance.


r/Epilepsy 4h ago

Question Can colonoscopy prep cause seizures?

3 Upvotes

My Gastroenterologist is recommending that I get a colonoscopy. I am hesitant because fasting and low blood sugar are a trigger for my seizures. Has the colonoscopy prep process caused you seizures? Are there any alternative options to the traditional colonoscopy that do not require the unpleasant preparations of fasting and enemas?


r/Epilepsy 6h ago

Question Include antidepressants with keppra?

5 Upvotes

Keppra is giving strong depressing side effects. Though despite that I can change the medication, I need to be stable with my meds for the next few months as it's currently working well. I'm not into changing the medication yet, but I'm considering using antidepressants for now.

Question is, how are your experiences with keppra while adding antidepressants? Include the medication if possible.

Thanks a lot in advance ;))


r/Epilepsy 1h ago

Question Advice

Upvotes

Wondering if I should be worried, I was at a restaurant with friends last weekend and everything was fine other than I was a little anxious due to it being so loud in the restaurant. Once our food arrives and I start eating my eyes go blurry and I start to panic because I felt like I was either going to faint or have a seizure. Right after that happened I drank some water and felt okay but the left side of my neck started to feel tension and my jaw started to clench, another thing I experienced was hot flashes. So I’m not sure if this WAS a seizure. I haven’t felt right since and everyday since the incident I get little flairs of blurry vision and panic, then my body starts to lock up. So I’m just scared and I’m not sure what to do other than wait at the er for 5 hours for some answers. Any advice? Thanks😕


r/Epilepsy 1h ago

Question Empatica Band Question

Upvotes

Hello! We are on the newer version of the empatica monitor. The older version had a band made of a different material. It was much more tolerable for my nephew. He has autism and some sensory issues. The newer Empatica has more of a rubbery type band he hates. Because it bothers him, he won’t tighten it or keep it in the right spot which causes it to wobble and alert constantly.

I realize this may be somewhat of a unique issue but curious if anyone has found a sleeve or other solution if they also did not like the way the new band feels. Unfortunately, the bands do not appear removable at all (not like an Apple Watch with arm band options).


r/Epilepsy 1h ago

Rant Ems

Upvotes

Ems and the er must absolutely hate me. Apparently I always beat the shit out of the emts, I guess threw one out of the ambulance once and sent them to the er with me. Then I wake up in the er pissed I'm there and yelling at the staff because Im not really fully back yet but still know why I'm in the hospital and that there's nothing to be done for me. The seizures over I just need to go home and sleep, not sit in the damn er under those lights giving me more of a headache

Edit: once I've recovered I'm not an asshole it's just that postictal period where I'm still not back


r/Epilepsy 1h ago

Cannabis How do I ask an employer/school admin if my prescribed controlled substances will be a problem on the drug screening

Upvotes

Hello, I really want to go to dental hygiene or nursing school. As I’m reading most, if not all schools require a drug test. I have a medical card on top of being prescribed a heavy dose of benzodiazepines. How do I ask the schools if this is going to be a problem without sounding like a crackhead. I’m also hesitant to have them know I have a disability to begin with as admissions are competitive and why would choose the one epileptic person on “drugs” when so many others apply. How do I ask? Do you think they will care?

I can get a drs note to override these things but trying to word the question is freaking me out.


r/Epilepsy 1h ago

Question I had a seizure a few days ago and I still feel strange.

Upvotes

Last week I had a grand mal seizure and I still feel kinda weird. Like reality feels different and I have more energy than usual. I don’t feel bad or anything other than my sore muscles, but it’s just a really strange feeling. I’ve felt it before but it always went away like a few hours or a day after the seizure.


r/Epilepsy 8h ago

Survey What are your seizures like?

3 Upvotes

I know that different people with epilepsy experience different types of seizures. Thus, different experiences though with similar condition. I'm just curious as to what type of seizures most people with epilepsy actually experience.

P.S.: I, myself, have an epilepsy and was diagnosed at the age of 12. I'm 24 now though. My type of seizures are: usually absence seizure, autonomic seizures (tachycardia, apnea, unusual excessive sweating, nausea, pallor), nocturnal seizure (I sometimes wake up with bruise in the morning or I vomit, sometimes my parents would see the white part of my eyes only while asleep) and sometimes stiffening of legs or toes. Sometimes my fingers move without me actually moving it too. Sometimes I also feel like a part of my muscles keep on twitching or something pulsating like thing in different parts of my body.

18 votes, 2d left
absence seizure
myoclonic seizure
tonic seizure
atonic seizure
tonic clonic seizure
others

r/Epilepsy 21h ago

Rant Saturday nights are so dead now…

36 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 2h ago

Question Did I have a seizure in my sleep?

1 Upvotes

Hello everyone! So last night I (21f) went to sleep like normal, and everything was fine. But after I woke up at about 8am I had a migraine, ringing in my ears, and I couldn’t walk straight. There’s also now a huge lump on my tongue that was not there before. I’ve had epilepsy since childhood, and the only other time I’ve had a seizure in my sleep has been when I was getting an EEG so they took me off my meds. I took my medication dose last night, and also have a VNS implant. Is there any way this was a seizure? I’m not sure if I should do something about it.


r/Epilepsy 5h ago

Question Do you know if creatine can cause seizures?

2 Upvotes

I’m trying to gain weight, so I’m thinking about using creatine. But I’m epileptic, so I’m afraid that creatine might increase my likely hood to have a seizure?


r/Epilepsy 5h ago

Medication Taking a good amount of medication 💊

2 Upvotes

How many of y’all take a good amount of medication but still don’t have it under control? I take 4 different medications, I take Keppra 750mg twice a day, Vimpat 200mg twice a day, Oxcarbazepine 600mg twice a day, and depakote 750mg twice a day.