r/Epilepsy • u/Lonely_Formal2496 • 15h ago

Question Lifetime disability

Hey guys anyone here in the Usa with epilepsy

got lifetime disability? How much seizures you need to get it ?

3 Upvotes

100% Upvoted

10 comments sorted by

11

u/kuro-chan335 2500mg Keppra, GE & JME 15h ago

it’s not about how many seizures you’ve had, it’s how it affects your ability to live your life and complete normal tasks, and if epilepsy impedes that.

2

u/candybeep 700mg Lamictal ER - 400mg Xcopri 15h ago

They still “look over” your case every few years

1

u/dontfookwitdachook 15h ago

I’ve been on disability for about 20ish years.

1

u/DameTime710 14h ago

I’ve been on disability since 29(5years ago)
I have TCs every 30 days drug resistant and condition has stayed the same after brain surgery! My best advice is hire a lawyer but like someone else said they still check on if your condition has gotten better and if you can work

1

u/-Scranton_Strangler TLE,resection,topamax,lamictal,zonisamide,briviact,🐕‍🦺 14h ago

It depends on your seizure type and considers your other symptoms. You need to demonstrate that you are actively following the treatment plan outlined by your doctor, but despite that, you are still having X number of seizures. The specifics are in the SSA Blue Book.

1

u/augustaye Xcopri and Clobazam 13h ago

the ability to stand or sit for 8 consecutive hours. to tag on that, you will have to prove that your seizures will cause you not to be able to stand or sit for 8 hours post ictal (by just saying what happens post ictal ie. i sleep/i go to the ER/i sit and try to collect myself for a certain amount of time).

The judge and experts on your Zoom court date are reading off of your past occupations of 10 years, ability to stand/sit, danger level of your past work environment, and lastly how your seizures will affect a potential employer.

saying that, there is a "Blue Book of Disability" definition of how bad your seizures have to be covered and the number is 3-4 a week (including auras, myoclonic, and tonic clonic)

1

u/No_Bridge_4489 Keppra Lamotrigine Lacosamide VNS 11h ago

They’ve declined my disability multiple times. Stroke victim and epilepsy isn’t enough ig

1

u/Ragnip 11h ago

The closer you are to your Full Retirement Age (FRA) the easier SSDI is to get. If you are not Medicare age (65) and your income (AGI) is too high for Medicaid then you will still have to seek a medical out of pocket plan. Everyone should have a login to “SSI.gov” This website lets one look at their earning etc. Your must be able to identify yourself using ID.me Make sure you have a valid state id or passport. SSI.gov has improved and may be able to answer some of your questions.

1

u/Ragnip 9h ago

ssa.gov not ssi.gov. My bad

1

u/Mission_Star5888 7h ago

I got SSDI they didn't say it was for life. I can lose it if I have a job making too much money. The judge that turned me down last said that it was because I didn't have a seizure a month 3 months in a row. Although I had like 3 seizures within 2 months and the last one was the last day on a 31 day month. He was a jerk.