Got a diagnosis, finally

[Silat]

Well I finally got a diagnosis of having E today.

I hate having seizures, but it turns out they're not so bad to have when you're actually sitting in a room with your doctor...

For the longest time he was skeptical, since all my tests have been normal. However I was showing him my journal, talking to him about them, and talking to him about how my medicine (Generic for Keppra) was different because the pharmacy changed manufacturers, and then boom. Seizures showed up to say "hello" from out of nowhere.

Wound up having 5 partials, 2 partial-complex seizures, and an absence seizure. I didn't believe him about the absence seizure because I never knew I had them... I didn't realize anything had happened.

So he was taking notes and studying what was going on, and I was trying to explain to him what I was feeling and experiencing when I could. He decided that this was definitely E related seizure activity, and said likely the generic switch was metabolizing differently, so he put me on name-brand Keppra to control them better and I agreed to let him bump my dose up slightly.

I shook his hand, then left the room, turned back around to say "thank you" one more time, and went into a tonic clonic seizure.

I'm not entirely sure what this means, but he said once I'd come out of it and was functioning again that he "could tell from my movements and my eyes that the seizure was epileptic in origin". Again, I don't know what that means, but the guy has been a neurologist for something like 35 years so I'll trust him on his opinion. I certainly didn't see my eyes so I can't comment on what he meant by that. At the time, I didn't much care either.

So after causing quite a drama at the Neurologists office today, I finally got a diagnosis. I'm a little bit out of it, but I'm recovering faster than normal, and the medicine feels like it's working a lot better than the generic was, and it's only the first day of taking it. Hopefully things will go better from this point on...

Not sure what to think of today, to be honest.

[Nakamova]

The lengths we have to go to get our doctors to believe us...

Well, I'm glad your neurologist was able to see and evaluate your symptoms firsthand, and that. more importantly, his evaluation agrees with yours. I hope you feel better soon, and that the brand-name med does the trick for you.

[Nakamova]

he "could tell from my movements and my eyes that the seizure was epileptic in origin"

Probably your eyes were open, and moving up or to the side in a rhythmic way. And the pupils may have been dilated too.

[Silat]

As far as the diagnositic phase goes, I'm not done yet. They know they're real and seem to be quite common over the past few weeks, and they know from CT and MRI scans it's not a tumor or abnormality, but as far as origins and such goes, we still don't know. Still haven't had one show up on an EEG or anything, so time will tell.

Thanks for explaining that Nakamova. I had no real idea what he was talking about.

[nicholas:)]

I'm thrilled for you Silat, if thrilled is the right word. I certainly could give you a 'man' hug!
Take care of yourself - don't dwell on it too much - I hope your meds manages your 'condition'.

WoW- what a day for you!

[Cint]

I'm glad to hear you finally got a proper diagnosis. But then to have a tonic clonic in the neurologist's office.... well, I guess it could not have happened in a better place.

I have to take name brand Keppra, also. Generic's don't work for me. Hope this works for you.

[Silat]

I'm thrilled for you Silat, if thrilled is the right word. I certainly could give you a 'man' hug!
Take care of yourself - don't dwell on it too much - I hope your meds manages your 'condition'.

WoW- what a day for you!

What a day indeed.... I think I could go for a nap

*insert man hug, bro fist, or other such manly displays of affection here*

I'm not dwelling on it at all. I've had them for 6 years give or take a few months, so it's actually nice to have a diagnosis other than "seizure activity". I'm pretty satisfied with just having a name to officially associate with my problem. For me, identification was one of the biggest problems. I wanted to know what the problem was.

What I feel bad about, to be honest, is that the neurology place I go to also deals with other conditions. There was an old man there who I could tell had previously had a stroke and that's why he was there. When the tonic clonic happened, I probably just about induced another stroke for the poor guy...

[julie wishes]

I have no idea why I'm smiling. Just am. One thing that stands out is that the day befor all of my trouble with Keppra started, I changed pharmacies becase it was cheaper. I wonder if the new formula of Keppra started all my junk? I noticed the pill looked different right away (being a nurse and all, so I looked it up on the internet to make sure it was generic Keppra and it was so I took it. After two doses all my troubles started. But, I had a similar reaction with the other brand as well. So???

Anyway, I'm relieved for you in a way. No more trying to convince anyone. Get some rest. Thanks for sharing.

[CQ:)]

Hi Sliat.

That's great news that you finally got a diagnosis. I hope the brand name Keppra works for you.
I've taken brand name Keppra for 4 years (never taken any generic epilepsy meds) & it has worked fine for me. I am probably one of the few people who haven't had any issues with kepprarage lol.

[Silat]

Thank you everyone

[JustcallmeG]

I almost find it silly that we are all so happy that you found out you are epileptic, any random person would think we all need to be in an actual padded room. I had no clue what you meant by tonic clonic seizures, I was so confused I had never heard them called that before. A.K.A Grand Maul, I just read... thats what I have, I have them terribly, and currently, I am going to be taking some notes to take to my dr for the next appt, to see if some other symptoms i am getting might be something different. I am glad that you did everything where it needed to be done... but poor man with the stroke, those are bad enough for a healthy person to see. YUCK

[Silat]

I almost find it silly that we are all so happy that you found out you are epileptic, any random person would think we all need to be in an actual padded room.

It's so true! But hey, it's taken almost 6 years to reach this point for me, so I'm pretty thrilled that at least something has become official.

[thornton8000]

Glad to hear you finally got some answers!
My talk doc listened to me and is looking into my "psychogenic non-epileptic seizures diagnosis" and wants me to get back to him after all my other appointsments but cheers to you and hopeing to a long road of freedom of relief to you my friend!
mike

[Silat]

That's great news Mike! Hopefully you'll be getting some answers soon as well!

[thornton8000]

here's to hoping as well, my body is getting used to the dose of meds i'm on and need's to be up'd but my current neurologist wont touch tthem till I see the new epileptologist on the 26th so I'm stuck in a rut till then unless the the new neurologist wants to make changes I see on the 21st see's a serious need for change too. but thanks man and glad you got your answers but not in the way you needed them to be found!
bro fist!
mike

[Silat]

Ah... I hate when I build a tolerance to a med... I'm doing that constantly. Every 6 months is an adjustment or a switch or something else. It's like my body just decides randomly "Okay, had enough of that medication. Not gonna accept any more."

Are your symptoms at least tolerable for the next week or two? Hope you feel better and this goes by quick!

[graceface]

Sad for you that you have epilepsy but glad you have a diagnosis , hopefully this clarity will help you manage things a bit better. pretty sure it helps when your doc believes you and knows what your body is doin.

[RunningGirl85]

I almost find it silly that we are all so happy that you found out you are epileptic, any random person would think we all need to be in an actual padded r

HA so true! It's sadly funny that I considered myself "lucky" to have had an abnormal EEG/a diagnosis after my second tonic clonic. I keep thinking my brain must've been all sorts of haywire cause I didn't even feel any different when they found the activity. Anyway - glad you got the diagnosis!

Sent from my Vortex using Tapatalk 2

[thornton8000]

they are tolerable for now photosenitivty is getting worse avoiding the Mall of america espically the old navy sign thats my biggest trigger I've found it gave me 2 startle triggers when rounding a corner I tried to look down but had to watch my kdis and wham! when looking at them I saw it and starting havng a minor simple partial seizures but of course my current neurologist says its just a spell nothing to worry about just keep taking your meds and talk to the new epileptologist and we'll go from there I'm just so tires and cant keep doing their games.
Thanks man and Good luck down the line!
Mike

[MomThreePointOh]

Welcome to the club

You're dealing with it a lot better than I am though.