Is my epilepsy a disability?

[resaebiunne]

I'm confused... or maybe in denial? Both? Anyway. I'm in a pickle because of insurance complications that will come soon (COBRA is going to expire... I'll post another thread about that). I'm curious to know if you think my situation warrants being called a disability or not. I feel like my situation is not nearly as bad as some people here have it so I'm confused and I'm looking for some feedback. Here's some brief background:

I've had epilepsy since I was 12. Back then it was no big deal, my seizures were minor, and I couldn't drive anyway. I have primary generalized epilepsy which has been confirmed over and over again by many different doctors doing many different types of EEGs. My typical seizure is basically a jerking of the head along with a rumbling noise that lasts about 1-2 seconds. Back in 2015 (age 29), I moved back to Florida from Texas and started having tonic clonic seizures the day I got back. From age 19 to 29 I was not on medication as the neurologist at that time wasn't concerned. I was started on Keppra by the neurologist I had in the hospital and who I continued to see for a short while. Up until that point I'd never had a tonic clonic seizure. My seizures have never, ever been controlled. Even now, after seeing an epileptologist for 15 months, have my seizures been controlled. I'm currently on Depakote, Vimpat, and Keppra. Back when I had the tonic clonics in 2015 however, I lost my driving privileges; it has been 2 years since I've been able to drive (and I probably never should have in the first place). My neurologist back in 2015 had my driving license permanently suspended until my seizures were controlled with medication. So far, that hasn't happened (and probably won't without good insurance). At least I can say that I've not had any tonic clonic seizures since 2015, however I have wound up status epilepticus and went to the ER (3 days before christmas of 2016 ).

The issue regarding my insurance running out stems from being laid off... I'm on COBRA (with a really great PPO plan thank God). Since I haven't found a job after nearly 16 months, I have to go on ObamaCare in 2 months. Is not being able to drive enough to constitute claiming a disability and applying for Medicaid? I'm also going to be pretty low income this year, heck even $10k might be pushing it. I'm working as a research assistant for a professor I formerly worked with but funding will run out soon. Ugh this sucks.

Any thoughts would be much appreciated.

 

[resaebiunne]

Well I guess I found the answer to my own question: http://www.disabilitysecrets.com/applying-for-disability-with-seizure-disorder.html

Problem now is, how do I get my medications and will I have to change doctors. It's surprising that they don't consider medication side effects or lack of driving privileges. I guess I'll talk to a lawyer.

There's no way in hell I'm going to bother to tell my family every time I have a seizure, nor am I going to the ER every time I have a seizure. So WTF...

 

[Nakamova]

If you qualify for Supplemental Security Income (SSI), then you automatically become qualified for medicaid. But In order to qualify for disability-based SSI, you need to have a certain amount of work history and then there's a 5-question process found here:
https://www.ssa.gov/planners/disability/dqualify5.html There's detailed info about Epilepsy and Disability Benefits found here: http://www.disabilitysecrets.com/medicine-medication-prescription-drugs-epilepsy.html

 

[Nakamova]

Just saw you found the link.
A lawyer may be useful -- sometimes it takes multiple attempts to qualify for disability.

 

[resaebiunne]

Thanks Nakamova!

I've gone ahead and bit the bullet. I used the disabilitysecret's "attorney matching service" and got hooked up with an attorney. I now have a meeting next week to discuss next steps.

It may be worth pointing out to other users that epilepsy is not my only concern here; I've mentioned elsewhere on the forum that I also have schizoaffective disorder bipolar type. But there too I'm confused because while I've had hallucinations and paranoia, I've never noticed my mood symptoms (I never noticed the paranoia or hallucinations either until much later, upon self reflection). If you think epilepsy meds have bad side effects, try an antipsychotic! Meds work fine, but they are extremely sedating and give me tremors, which I take propranolol for, which by itself is a sedative. Anyway...

 

[Nakamova]

Good luck! If you can, keep us posted on how the disability stuff works out. I'm sure CWE members will appreciate hearing about your experience negotiating all the red tape.

 

[Cint]

T

I've mentioned elsewhere on the forum that I also have schizoaffective disorder bipolar type. But there too I'm confused because while I've had hallucinations and paranoia, I've never noticed my mood symptoms (I never noticed the paranoia or hallucinations either until much later, upon self reflection). If you think epilepsy meds have bad side effects, try an antipsychotic! Meds work fine, but they are extremely sedating and give me tremors, which I take propranolol for, which by itself is a sedative. .

Mood disorders and epilepsy go hand in hand. Some folks do experience some types of hallucinations with Temporal Love Epilepsy. I suffer from depression and was seeing a "shrink" for years. Actually, I was seeing a neuropsychiatrist in the beginning, but when I moved, I could only find a psychiatrist. He diagnosed me as "bi-polar" and prescribed an anti-psychotic, which in turn, brought on Type 1 Diabetes for me. So, be careful before taking any anti-psychotics!! Ask your PHARMACIST about any side effects!!

Have you checked out this website:
http://www.epilepsy.com/learn/impact/moods-and-behavior/mood-and-behavior-advanced/psychosis

 

[resaebiunne]

Hi Cint,

I too was fortunate enough to see a neuropsychiatrist when I lived back closer to Tampa. In fact, University of South Florida at Tampa has an entire neuropsychiatry department. In general though, I didn't find the experience with the neuropsychiatrist to be much different from seeing a "normal" psychiatrist.

Anyway more rambling. The definition of epilepsy as a disability, or a mental illness, seems to follow the "clinical" definitions of these illnesses. Now this makes sense but I've wondered (mostly shortly after my first proper diagnosis) how I met the clinical definition of schizoaffective without more intense scrutiny to have been given a diagnosis of schizoaffective. Yes, I have very real symptoms even with medication, but reading these online descriptions of disability requirements or even just DSM interpretations is very misleading. It's judgement best left to the doctors (assuming they're competent).

 

[Topcat]

Insurance

If you qualify for Supplemental Security Income (SSI), then you automatically become qualified for medicaid. But In order to qualify for disability-based SSI, you need to have a certain amount of work history and then there's a 5-question process found here:
https://www.ssa.gov/planners/disability/dqualify5.html There's detailed info about Epilepsy and Disability Benefits found here: http://www.disabilitysecrets.com/medicine-medication-prescription-drugs-epilepsy.html

Are you sure it's medicaid and not medicare? I don't really know the difference.
But I'm on medicare with a supplemental insurance as well.
I didn't have any problem getting on medicare. I think that the neurologist I was going to expedited things.
I can't remember how it happened. But poor memory is part of my problem as well as seizures.

 

[Nakamova]

Basically, Medicaid helps with health insurance you're low-income and Medicare does the same when when you're old (over 65 that is).

https://www.medicareinteractive.org...-the-difference-between-medicare-and-medicaid

 

[Topcat]

I was only on in my early 40s when I started collecting but I'm on medicare have the card and everything.

https://www.medicare.gov/people-like-me/disability/get-a-and-b-automatically-disability.html#collapse-3099

You automatically get Part A and Part B after you get disability benefits from Social Security or certain disability benefits from the RRB for 24 months.

I don't know what one is supposed to do before one is to 24 months;
perhaps get Medicaid, or a COBRA, or pay for it themselves?

 

[Nakamova]

Yes that's true, there are health-related exceptions to the age 65 rule:
http://www.aarp.org/health/medicare-insurance/info-06-2008/ask_ms__medicare_10.html
With epilepsy, is has to be considered "severe", and as you note, you already need to be be receiving Social Security benefits. If someone wants to find out if they qualify for Medicare under these circumstances, and how to enroll, they can call Social Security at 1-800-772-1213.

 

[Mantis]

I wish it was simple. I don't think this question should require various articles, but I've encountered a similar problem and I needed help to specify my disability.

At the risk of sounding like Captain Obvious (though I think he'd make a better lawmaker than most), having a disability simply means you're unable to do a (or more than one) particular thing. Epilepsy is a disability since it is probably preventing you from doing a lot of things most people can. Epilepsy itself is very catch-all in most countries as even if your seizures are minor (it doesn't matter what kind either) there will be driving limitations, for example. That in itself is a disability. But of course, on paper it's a different thing and I'm unaware of US states' laws on this.

As an off-topic side note, I don't like the word "disabled" since it's an umbrella term that carries a vague implication (disabled in what way?), and if you have what is often considered an invisible illness (outside of the seizures themselves), some people will show doubt since they often associate the word "disabled" with something permanently physical. It's taken having a tonic-clonic in front of somebody before for them to take me seriously. The ignorance astounds me sometimes.

 

[Jeanbean]

About 3 years ago I decided to apply for disability and was turned down three times and finally got an attorney free up front. A friend helped me to get all of my medical information seizure dates, medications, since age 12. It helped to have a big picture of my medical life. I kept losing jobs, started as a caseworker and now work a few hours a week just to get out. I was awarded disability and got Medicare and a supplement and prescription insurance. I had first started with Medicaid with Obama care because I was so poor I didn't qualify for anything else. Prior to that I was on regular full time insurance. As my seizure disorder continued and more meds were added and had to stop driving a few years ago I knew I needed to do this. So it took a while but it was worth it. There are two types of disability one is if you are financially qualified SSA and the other doesn't SSDI. I read the NOLO books which are so helpful. It is important to include medications that affect our memories etc. Good luck and if you have any questions would be happy to help. Jeanne

 

[Sabbo]

I had also applied for disability & was turned down twice. They said "epilepsy/seizures can be controlled with medications."
The next time I apply, I definitely will go through a lawyer. What's surprising is that the doctor they sent me to one of those times had filled in everything saying that I should receive disability. Recently, I've had complex partials that are even more dangerous.

 

[Jeanbean]

Sabbo
I think it is worth the time and effort to apply. I got the lawyer first and they took what I had from applying the three times and took over from there. It is based on work and whether you can do the jobs you were able to do prior to increased seizure problems and medications. I was fortunate, tongue in cheek!!, that I had lost so many jobs due to my inability to do them due to meds, being so tired, seizures, etc. You get medicare which is usually for older folks but once you get disability you qualify. I had a problem at the beginning when I first got medicare with meds being very expensive but I was able to work with my epileptologist and she changed two to generic and I have not had any problems with that change. It's worth a try. Good luck!! Jeanne

 

[Lonewolf]

I had also applied for disability & was turned down twice. They said "epilepsy/seizures can be controlled with medications."
The next time I apply, I definitely will go through a lawyer. What's surprising is that the doctor they sent me to one of those times had filled in everything saying that I should receive disability. Recently, I've had complex partials that are even more dangerous.

When you apply for disability you are usually turned down twice. The third time is when you can get it once the doctors have a look at your medical records that you do need it and epilepsy is considered a disability. I've had many complex partials Sabbo.

 

[Topcat]

I was so out of it when I got it I don't remember anything about it. I guess that's why I got it.
Not only do I have seizures but with the way some of the drugs I'm on effect me it's no wonder I'm still on it.

 

[Sabbo]

I completed a Bachelors Degree with a double major (prior to the complex partials starting), and I often joke that I wasted my time doing so. Those seizures started about a year later.
One even occurred when I was at the train station--if another person hadn't been there, I'd have fallen onto the tracks!! Another scary complex partial occurred when I got off work one evening. I recall coming out of the building, & the next thing I knew, I was coming to at the hospital. Apparently, I had collapsed on the sidewalk.

 

[Topcat]

Falling

People have been really nice when I've fallen. The last time it happened I didn't even have a tonic clonic seizure. I had a Focal seizure (simple partial) I didn't lose awareness but it startled me and I lost my footing and went into a fairly busy street. Fortunately there is a bike path there. Some people in a care that was passing noticed it and stopped to see I was okay. I was really close to home (it was just around the corner) so I said yes and just went there.