\\ No one witnesses my so-called seizures.

[Jan4you]

Ok I am off work on disability for recent Diagnoses of MS and Temporal lobe seizures (sp and cp) with 3 other complicating syndromes..now moving toward long term. Social security is now involved and sent me paperwork where someone close to me who has witnessed my seizures is supposed to fill out a report.

I dont have ANY obvious signs/symptoms that I am having a seizure and live alone. My husband, now deceased had a liftetime of seizures so I witnessed them and helped him with HIS SSDI. So.. who could fill out this paperwork. Anyone here ever have NO ONE wittness seizures?

First of all until this January I had no idea I was even having seizures until I had some driving experiences=jamais vu..and distorting of time and space while driving.

For years, I kept saying I was just stressed..that I have no memory of saying..doing something..made written mistakes.."blanked" out when running a therapy group or doing an assessment. I think of ALL the mistakes I made that I DID NOT know of..geez. Sometimes I would find that I wrote some aimless nonsens in a patients chart (billing part)

I feel they wont accept that NO one has ever truly witnessed me having a seizure. I had dejevu in hospital in March and also hallucinatory seizure.

But my auras dont really evolve to something weird enough to tell me I "did" have a seizure...except that I get GOOSEBUMPS all day long every day.

Am I just weird?? (leaving this open now for YOUR interpretation lol)

Jan

 

[dfwtexas]

Hi Jan...I joke about having my simple and complex seizures at work and no one noticed! I always say, just how weird am I? LOL
My son did finally witness a seizure last fall.
When my seizures started, I would have them when driving. When I went to my doctor, I described it as extreme sleepwalking. As a child, I was sleepwalker and it reminded me of that time. I would come to and be some where else and not remembered how I got there and what I did.
I am still working and my Keppra has helped a lot. But I know I would be in trouble if I had to prove I have E. My mother still struggles with believing it as she has never seen it.
jenn

 

[Endless]

Jan,

How frustrating.

You aren't alone. I live alone, so don't have a lot of witnesses hanging around. Partial seizures can be really weird, and the only one who knows we are having one is us. I try to cover them up when I'm with my family, if I can. Otherwise they get freaked out.

My mom has seen me have a few, but she only knows what I tell her I'm feeling. There's nothing for her to observe. Though, she's gotten so she can tell sometimes by looking in my eyes.

My complex partials... I handed my dog's leash over to a neighbor once, turned on my heel, and without a word walked away. But that neighbor has moved. I'd have no idea where to find her. I did something inappropriate at work once, but my employer would never let me ask the person who witnessed it to say something on my behalf (or for any other reason talk to her about it again).

Do you have an attorney helping you with your SSA claim?

 

[Jan4you]

Thanks Endless for your response. I feel so different than the rest of you.

Often feel like I am never having seizures..but not sure.

Today.. I was trying to warm up the end of my coffee..while..making a new pot..while making toast. All 3 I was trying to manage the plugs.

I got out the bread..was searching for the chord..plugged it in..decided to wait to start the coffee maker..stood at the sink for some reason..then the toaster popped up. I looked.. and looked and noticed finally there was NO BREAD in the toaster. Absentminded..dazed..not sure.

But now I have to write all these things down..will have my video EEG in the hospital..and write out surveys for Social Security.

Actually Soc Sec did my application over the phone. AND the Long term insurance co for my job is going to really help by going after docs who drag their feet in sending out records. So.. no decision yet.

I know all about Soc Sec as I used to have to help MY clients when I was a therapist.

I look like I am making this up as I dont' have any knowledge of CPs and neither does anyone else.. my SPs are so minor with only auras it seems.

Good grief.. thanks for responding friend

Jan

 

[Endless]

Oh, yeah. I recognize those!

Like playing backgammon online, getting impatient waiting for the other person (it's their turn!), only to realize it was my turn and they left the virtual room long ago. I remember nothing about it. (Complex partial?!)

My doctor and I worked up a kind of criteria - that something outside of me tells me i had one. I still tell him about the others (like the one above), but for driving, etc. purposes we're only counting the ones with objective evidence. Like:
- things broken all over and I have no memory, or
- a huge cut or deep bruise and I dont' know it got there, or
- i'm in a completely different location, like outside, and I have no idea how I got there, or
- i'm naked and dont' know how I got that way!

I've only had a couple of complex partials that someone has told me about, to the best of my knowledge. Others may have happened and whomever didn't tell me.

 

[sally richards]

onder:Jan; Were you going to get an V-EEG this month? My memory is that of many with E, so forgive me if I am wrong. May be you will have vidio witnesses and many to fill out the forms. If that doesn't work ask a friend to "remember one" for ya. Sally

 

[Jan4you]

Yes Sally thanks for trying to remember me..yes I am having a video EEG but in middle June. Yeah I thought of that but they will get the records anyway.

I'll just have to let that part go..for SocSecurity. I cannot imagine I am the ONLY one who doesn't have anyone to view these seizures. I live alone

Thanks again

Jan

 

[sally richards]

Jan, One hard part about not knowing when you have an event or remembering what happened when, or being confused for sometimes days, is thinking about what someone else noticed or witnessed is not part of oour experience. Living alone makes this so much worst. Sorry honey. Son't have any other idea's. May be something will offer an oppertunity in the comming weeks. Good luck, Sally

 

[Zoofemme]

No Jan, you aren't weird {{{{HUG}}}} Like many on here, most of my seizures occur when I'm alone too. Won't SS accept your sez diary as partial evidence since you do live alone? I know they want you to submit as much supporting documnetation as possible so if your doc will sign off on it I should think they would accept it? Sorry I can't offer up more than that. Beth

 

[JRuner]

Jan, I am so sorry you are having such I hard time. I hope that you able to get SSDI and soon! I know with whatever siezures I have I remember a lot less then my wife observes. I personally believe from reading all of your post's you should qualify. If you ever need to talk just PM me.