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

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 Additional Info.

Can a person die from epilepsy?

Driving Laws database

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

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

Living with epilepsy

What causes memory problems or medication,

What are rescue medications and how are they used?

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!

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.

• 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.

• Social

• 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/

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 !

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 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

o https://www.rxassist.org/

o https://costplusdrugs.com/

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

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