Why am I having to 'prove' these partial seizures anyway?

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elizzza811

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Paramedics (twice) witnessed my seizures. Neighbors (twice) witnessed them.

-I wake up confused, not knowing what day it is, what I'm supposed to be doing.
-Funny chemical taste, sometimes with 'lip smacking'.
-Dizzy spells, though my eyes remain wide open, and during one of them I actually put my arms out in front of me and clenched both fists.
-I am unable to respond, though sometimes I am able to do automatic tasks (like putting the car in park after crashing it). And sometimes I am able to resume the task at hand as if nothing ever happened (putting stamps on bills I had been working on just prior to the seizure).

Is it my insurance?

And why can't they just give me a slip to take to the hospital on a day I am actually seizuring? My seizures can be anywhere from 9 days apart to 5 weeks or longer. A one or two week long video EEG will likely show nothing with those odds.

Or why can't she just try me on a seizure medication?

By the way, my prolactin level came back normal, and my neurologist claims that even if I had suffered multiple seizures prior to getting it drawn (and I did!), the levels would remain elevated all day. That's not what I read.
 
Time to get a new doctor. Find an epi (seizure specialist) if you can. He'll sort it all out. I went through 3 PCP's and 2 neurologists before I found my epi and got a diagnosis & treatment. Then another neuro diagnosed my other neurological problem (IIH). It gets tiring, emotionally & physically dealing with all these docs. It's hard perservering. Keep going, though. You need to help yourself to get to the end of this crazy road.
 
Thanks! I hope I can find one though in this area? Allentown, PA?

And I am sooo frustrated anymore. It almost seems as if I could grand mal right in front of the neurologist, and yet she'd still require spikes on an EEG to prove it...frustrating!!!
 
You really DO need a new neurologist.

A good place to find an epi is a regional epilepsy center. Here's a link to find one near you: http://www.naec-epilepsy.org/find.htm

It's going to require a referral from a neurologist to get in. Ask your current neuro - say you want a second opinion. She isn't likely to refuse that.
 
Thanks, I found this list of 'good' doctors, too...

http://epilepsytalk.com/2011/03/08/...ologists…neurosurgeons…and-pediatric-doctors/

The problem is many of these doctors (when I look them up separately) are listed as neurologists, just like the one I'm seeing now. And quite a few of them list psychogenic, non-epileptic seizures as their 'specialty', which I honestly can't handle 'going there' again after crashing my car.

I'm not sure what to do?
 
They will all be listed as neurologists, because that's what they are. They just happen to have a specialty in seizures. I don't know what to say about them specializing in psychogenic seizures. Is that listed as one amoung many things that they handle, or that alone?
 
That seems strange for a neuro to list psychogenic seizures as their speciality,dont you think?I thought they tried to pass them off to the psych docs.I dont know if I would want to see one of them.seems to me that for some reason they would be LOOKING to make a psychogenic diagnosis.Maybe im just the suspicious type-sorry.
 
I forget. I'd have to check again. I think it was one among many though.

I'm just worried they're going to call them 'psychogenic seizures' though, when my seizures so far have been 37, 9, 13, 28 days apart...in that order. So a 72 hour ambulatory EEG most likely would show nothing, as would even a one week video EEG.
 
Unfortunately,at least in my situation,having a validated eeg by the epi still does not mean a hill of beans.He is still looking for a reason why every 4 months they seem to creep back.According to him,the true epileptic seizures would stop with the meds so he feels there is something else.I disagree,I think my body becomes used to the trileptal.but he is the doc and went to school for this so he must be right?
 
How long would a video EEG last? 1 week? 2 weeks? Until I seizure?

I have so little faith in doctors anymore because I've had to have phone consults with a nurse practioner out-of-state for treatment of my chronic Lyme. Plus, I read strep in the blood can cause OCD (which I also have), and no doctor will test me for that, let alone treat me.

Actually, infection could be behind all of this...my chronically elevated rheumatoid factors, my OCD, and now my seizures. I was repeatedly exposed to strep when all of this really picked up speed...my daughter had strep every month, it seemed.
 
I was going to post the same link as endless. Get to a level 4 epilepsy center there's quite a list for your area. Personally I prefer the larger hospital based ones and ones who call themselves comprehensive. There's one in Hershey and one in Philadelphia. Its worth traveling to get a good one and they should be able to get you a local contact for emergencies.

As for your seizures they sound exactly like mine. I too crashed my car but I was on my tractor at the time.

Be patient and remember you have to be your own advocate Dr's are not God you have great support and info right here.
 
I go to the adult epilepsy unit at cleveland clinic-after 3 visits with a great epi that were 6mos apart,he told me his nurse would see me once a year from now on because he only he sees patients on Mondays and his bosses say his slots must be filled with new cases-we all answer to someone dont we?
 
mine was 8 days no luck but I was under influence of meds-ativan for first 4 days then had what they term nonepileptic event and they basically wrote me off-no lights,no exercise,no inducement although I tried sleep deprivation myself-they never cared what I ate or drank-although I dont know if that even matters
 
I had one event on the last day of my eeg. There were some breakthough waves but the neuro said that wasn't enough. Had I been smarter I would have smuggled in the one thing that is sure to cause a seizure in me - alcohol. I drink and 5-8 hours later, BANG. They probably would have thrown me out of the hospital if they caught me, though.
 
So basically a video EEG will likely prove useless with my seizures being so infrequent and would give them even more ammo to label them 'non-epileptic, psychogenic' events?

It doesn't matter anyway. In this area an ER 'referral' isn't enough...I'd need one from a family doc. And my family doc is the one who refused me a referral to a neuro, thinking I needed a shrink, which is why I seizured behind the wheel to begin with. So unless I see a new family doc, I'm screwed.

I'm seriously having a nervous breakdown over this....
 
You need to start bugging your insurance company daily I would think the accident itself would be enough of a referral or try working backwards and have the hew Neuro get a referral from a family doc, they have ways around all the insurance bull shit.

Alcohol was one of the things offered during my 6 day EEG but I was having so much activity they didn't need it darn.
 
PS If that doesn't work give us your family Docs number and we can bug the hell out of him or her. I'd love to bitch slap an arrogant Doc. Sadly its not all their fault they are poorly educated in this area.
 
Aloha Elizzza- don't panic, you have many more hills to climb, so save your stregnth.., I am about 15 years into this and I have had almost as many neuros. Med changes too many to list and enough tests to be my own nightlight. I still struggle with the 'psyco' suggestion even though my SECOND round of in hospital 24/7 test finally showed everything. Oddly enough I left the hospital after a week feeling pissed that 'nothing had happened' durring my stay. Can you say complex partial? That said, keep your connection with this site for stregnth and info:e:
 
Thats funny because there was someone next to me said same thing but I dont know if they let him have it
 
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