Feel crazy when I explain my seizures

[Beanogirl]

I was just diagnosed with simple partial seizures a few weeks ago. I've been having symptoms for 4 years now but thought they were anxiety related. I only brought them up once to a doctor when I was being treated for anxiety and she didn't even look up or stop writing when I mentioned deja vu so I just glossed over it. I always FELT crazy when I explained them to my husband that the first sensation I get is one of deja vu so I never wanted to say that to a doctor. It took until this past Feb. for me to look into it. I was 7 wks pregnant at the time and these episodes started waking me up at night and during the day they seemed to be happening more regularly. I googled anxiety with deja vu and simple partial seizures popped up. I never in a million years thought seizures. I was just looking for a better way to explain the feelings I had to the doctor without sounding like a total nut. Anyway, I made an appt with a neurologist who was very kind and didn't make me feel crazy at all. She said my episodes did sound like seizures and after several appts, some testing and a hospital stay for a video eeg I now have my diagnosis of epilepsy. So you would think after all of this I wouldn't feel crazy explaining to people when they ask about my seizures but I do. Just yesterday at my OB appt. the doctor asked me what was going on and I gave her an update. I never seen her before so she asked to explain my seizures. When I did her eyes got really big and she made a comment that was "weird" and she never heard of a seizure like that before. I felt crazy all over again. Does anyone else feel this way when they explain their seizures? I know I am sensitive about this so maybe it is more me than them. This is all new to me and I am still adjusting. Thank you for reading.

[Loopy Lou]

I have temporal lobe epilepsy, and some of my seizures are so difficult to explain! I know exactly where you're coming from. I only got diagnosed with epilepsy after i'd started having tonic clonic seizures a few years ago, but i have been having partials for much longer than that. First odd thing i remember was when i was around 7 or so, but i didn't know how to explain it and thought it was just the way i was.

I work in a place where everyone has to have mandatory epilepsy training but even so most people look at me funny when i try to explain what my seizures are like.

Anyhoo, you're in fine company here, most of us will understand where you're coming from.

[mel239]

Boy do I know how you feel! I am a single mom and am very paranoid.I always thought if I was truthful it would be in a record somewhere and come back to haunt me.I still feel this way and still am not completely truthful.Nothing that goes on has every put my kids in harms way but the way the court system works and the scary stories I have heard about people losing their kids i will NEVER take that chance!

[Cint]

Yes, I used to feel crazy when I first started to explain my seizures to people years ago. But remember, they have no idea where you're coming from because they've probably never witnessed a seizure, let alone, experienced one. So for us to explain to outsiders what we're going through is very difficult.... sometimes hard to put into words.

And for that ob/gyn, she needs to do some more reading on seizures, the fool. And sometimes it still happens in doc's offices or when going for testing. A few years ago I had another EEG done and the technologist said: "You don't look like you have seizures"
Another fool.

So hang in there and don't let those out there get you down. Keep coming back for answers and support.

[Loopy Lou]

I had another EEG done and the technologist said: "You don't look like you have seizures"

I've had that said to me before a couple of times too lol. I usually just smile and sweetly ask "Ok, what should a person with seizures look like then?"

[Cint]

I've had that said to me before a couple of times too lol. I usually just smile and sweetly ask "Ok, what should a person with seizures look like then?"

Great comeback! And what is their reply?!

[Loopy Lou]

The last one just sort of stared at me blankly, stuttered a bit and then wisely shut up haha.

I did have a girl who i worked with once tell me that i didn't look like someone with epilepsy. I said "What, should i wear a flashing neon light above my head or something?"

To which she replied "Wouldn't that like.... set you off or something?". She said this with a completely straight, guileless face.

I couldn't keep a straight face at that.

These conversations normally happen with new members of staff when they ask me why i can't do certain things at work.

[Nakamova]

I'm lucky because I have the "classic" epilepsy that everyone's heard of. But when I get on my epilepsy soapbox, the first thing I tell people is that majority of epilepsy cases DON'T involve convulsions and full loss of consciousness. I usually have to tell them a few times before it sinks in. It's hard for people to grasp something they can't see, and most TV shows just go for the "dramatic" kind of seizure.

[mel239]

because I dont hve the dramatic episodes,those around me assume its really no big deal.Their opinion is so what if you lose a few minutes-you are just in a different place.So what if you have memory issues-you are getting older and I (meaning them)have worse experiences.So what if you dont remember a cut or burn-you still put a bandaid on it same as everyone else.So what if you have weird religious personality issues-thats what happens when you sit home bored without working for 3 years.So what you cant drive-people quit asking you for stuff.so what you have anger or mental issues-you are a single mom with money problems.So what you smell funny things-your house gets clean that way---SORRY I could go on and on but nobody seems to think its a big deal and its so quick and mild compared to grandmals that their opinion is I can work my life around this minor annoyance.So somebody tell me--Why cant I? Are they right?

[Cint]

So what if you have memory issues-you are getting older and I (meaning them)have worse experiences.So what if you dont remember a cut or burn-you still put a bandaid on it same as everyone else.
So what if you have weird religious personality issues-thats what happens when you sit home bored without working for 3 years.So what you cant drive-people quit asking you for stuff.so what you have anger or mental issues-you are a single mom with money problems.So what you smell funny things-your house gets clean that way---SORRY I could go on and on but nobody seems to think its a big deal and its so quick and mild compared to grandmals that their opinion is I can work my life around this minor annoyance.So somebody tell me--Why cant I? Are they right?

I've had simple partial's, complex partial's & tonic clonic's (grand mals), so I DO know what each one feels like. To me the simple partial's are more like auras and the complex partial's ARE a big deal and the tonic clonic's are a much bigger deal. I've been burned to the point of hospitalization and surgery when I had my 1st tonic clonic seizure. I also had a complex partial seizure and was burned. It required surgery, too. I've struggled with deep depression for years and could not drive or work. So even if one doesn't experience tonic clonic's, the other types and the side effects of all the meds plus depression, etc. all is more than a mild annoyance. It is a change of life style. No one can understand until they have gone through it themselves, unfortunately.

[valeriedl]

I know what you mean by trying to explain your seizures to people. I've had the deja vu before, feeling that something had already had happened - even if it didn't. I didn't realize that was a type of seizure before until I joined this site and saw that others experienced the same thing.

I had a seizure last week while I was washing windows. I was having so much trouble trying to explain to my husband as to what I was feeling during it. I knew what I was doing, but I didn't know what I was doing. I had all the window cleaning stuff around me and I knew it was supposto be there but I couldn't figure out why. After a minute or two I finally came back into reality and realized what I was doing.

I've been doing alot of spring cleaning (or whould it be summer cleaning now?) And it seems like almost every time I start to do the cleaning or working around around the house I'll have a seizure. Does this mean that I should stop cleaning altogether and make my husband do all of it?

[Loopy Lou]

Valerie - yes, yes it does lol. He should be responsible for all cleaning :P

[Chel]

every time I start to do the cleaning or working around around the house I'll have a seizure. Does this mean that I should stop cleaning altogether and make my husband do all of it?

Hey, that works for me *wink*

[elizzza811]

Don't feel bad...most doctors thought I was psycho, too, and two even said outright, "Your symptoms are all in your head. I strongly suggest you take something if it is offered (Cymbalta)."

It took crashing my car into a ditch for doctors to believe my symptoms were real, were not related to an anxiety disorder, and were not related to my OCD-ing over my health. In fact, just prior to my car accident in December, I made an appointment with my family doctor because my symptoms were worsening, and she refused to order any neurological testing on me whatsoever until she saw my psych records. I refused, crashed my car a month later seizuring, and I have to say that being right never felt so good.

[mel239]

I just keep pushing on--the weeds from last year are here this year and will be here next year,Valerie and the same goes for cleaning--its never ending do what you can do--if I can only can jam and not tomatos then so be it--if I can do both I do a bunch maybe for a couple years--who knows how I will be next year

[Endless]

People think I'm nuts, too, when I tell them what simple partial temporal lobe seizures are like. They think I belong in a mental ward.

Their next comment is, "but that's unusual, not the norm at all." I actually had a doctor say this to me, and I had to educate her on the fact that partial seizures are the most common type (not generalized convulsive or absence seizures), and of those temporal lobe seizures are the most common. Sheesh. You'd think a doctor would know that.

So I tell them for people with seizures, I am pretty much the norm. So their next comment is, "If it's the norm, then why haven't I heard about it?!" (delivered with an accusing look). And I say, "well, there's the problem. Our community isn't organized like breast cancer or autism, and not nearly as well publicized. And Epilepsy is more common than breast cancer and autism combined."

Now the listener just wants to get away from the crazy lady. They shut down. They walk away. They think I'm full of it and just plain wrong. And they don't want to hear about it anyway.

Even my family had this reaction at first. At least the ones who had the decency to google it acted differently and understood. So there's hope.

[valeriedl]

Their next comment is, "but that's unusual, not the norm at all." I actually had a doctor say this to me, and I had to educate her on the fact that partial seizures are the most common type (not generalized convulsive or absence seizures), and of those temporal lobe seizures are the most common. Sheesh. You'd think a doctor would know that.


I know when I was first diagnosed with epilepsy my family and friends they were terrified that they would be out with me and I'd fall to the ground and start shaking like crazy.

I had to explain to them what my seizures were like, I'd usually just stop talking and stare off into no-where land. Or if I did talk it wouldn't make any since at all. People just don't realize that there is more than one type.

Luckily when my husband and I started dating and my family explained what I usually did when I had a seizure he wasn't scared. Even when I had my first seizure with him he didn't freek out during it. He did call my parents to make sure what I was doing was normal when I had a seizure and just waited till I came out of it. I did end up in the er because about 15 min or more had gone by and I still wasn't out of it but that was my parents idea not his.

This was 8 years ago and I think I've had every different seizure known to man with him and he's still here.

[Beanogirl]

Thank you all for your feedback! I'm glad I'm not the only one who feels this way. I kind of expect it from regular people (without a medical background)when I explain it to them but a DOCTOR! I didn't expect her to react like that even if she never heard of a seizure like this before. I also love when I tell people about the deja vu and they say, "oh I've had that before. That's not a seizure", as if they know better than my neurologist. I try to explain that I know everyone has moments of deja vu but I have other symptoms too and mine happen in clusters every single month. I try to be understanding but sometimes it's just annoying