"Normal" EEG, but I crashed my car. Please help.

[elizzza811]

Sorry, but I think I'm having a nervous breakdown right now. My 24-hour EEG came back 'normal', and I crashed my car back in December. If you remember, I was unable to respond to my neighbor who was freaking out on me while I was crashing. I also wake up having seizures...memory problems, confusion that lasts for hours afterwards. Atonic 'leg collapse' seizures as well, though not as frequent, and I have a scar on my knee to prove it.

I've read that partial or absence seizures are hard to pick up on an EEG...and I had no 'events' during it...but I'm very concerned that the neurologist was ready to just send me on my merry way? Do I have to be dead before they will listen to me?

My questions...what next? Do I request a prolactin test? I forget who told me this, but apparently an elevated prolactin after an 'event' can prove seizures? Which brings me to my next question...are they going to require I 'prove' my seizures, just like they are making me do the impossible with my chronic Lyme, before they put me on seizure meds? I've only had 3 seizures since that one in December. What are the chances that a 48- or 72-hour EEG will pick anything up if they are that infrequent? Infrequent or not though, all it takes is one to crash my car again.

 

[Cint]

My questions...what next? Do I request a prolactin test? I forget who told me this, but apparently an elevated prolactin after an 'event' can prove seizures? Which brings me to my next question...are they going to require I 'prove' my seizures, just like they are making me do the impossible with my chronic Lyme, before they put me on seizure meds? I've only had 3 seizures since that one in December. What are the chances that a 48- or 72-hour EEG will pick anything up if they are that infrequent? Infrequent or not though, all it takes is one to crash my car again.

Your next step may be to have a VEEG so the dr. can actually witness the seizure while viewing the EEG.

In my case, it took a bad seizure and fall in the hot shower, suffering 2nd, 3rd burns on my arm and back before they would listen to me.

 

[Endless]

Elizza,

Many of us go years without a diagnosis before there is something definitive. Many seizure specialists (epi's) may put you on seizure meds before their is a positive EEG, based on case history. A video EEG will probably be in their list of tests.

Partial seizures sometimes don't show up on an eeg. Generalized seizures do, for the most part. An absence seizure is a generalized seizure, so I'm wondering if your type of seizure is different - maybe a complex partial? You can look up the types of seizures on the epilepsy.com site. You may recognize yourself in some of the descriptions.

http://www.epilepsy.com/epilepsy/types_seizures

After reading that site, what type(s) of seizures do you think are most likely your type?

On Prolactin:

Prolactin tests are most helpful for tonic-clonic seizures.

There are several limitations on the usefulness of postictal serum prolactin elevation as a test to distinguish epileptic from nonepileptic seizures:

Postictal serum prolactin elevation cannot be used to differentiate simple partial seizures or absence seizures from nonepileptic seizures.

Prolactin levels may increase during syncope, demonstrated during tilt table studies.92

Complex partial seizures that do not arise from the temporal lobe do not lead to prolactin elevation.

10% to 20% of patients with tonic-clonic seizures may not show a postictal prolactin rise.

Ambiguous test results, such as a twofold elevation, are difficult to interpret.

Prolactin level rises predictably only after a single seizure. Patients who have more than 2 seizures in 12 hours have progressively smaller elevations, presumably because stored prolactin from the pituitary lactotrophs is exhausted.

http://professionals.epilepsy.com/page/hormones_postictal.html

Many neurologists will put you on seizure meds based on a history alone. I think it's a smart move, though, to rule out the usual physical suspects first. Physiological non-epileptic seizures wouldn't show up on an eeg, either. Like TIAs (mini-strokes), or the myriad of other physical diseases that can cause non-epileptic seizures.

 

[elizzza811]

Thanks, everybody. I'm thinking simple partial seizures and atonic, for sure. Possibly absence seizures, too.

This is scary though. You would think the neurologist would want to put me on something to prevent another car accident.

What is a video EEG though? And how long does it last? Can it done at home?

I really need like a month-long EEG to truly 'catch' one of my seizures.

...I just read about video EEGs. How is this any better than say a 72-hour regular EEG? I don't thrash around or anything.

My atonics happen maybe twice a year, so they'll never be caught on video. And my simple partials happen once a month (sometimes twice). When I had that seizure in December, it took 5 weeks for the next 'event', and more recently, I've had one every 2 weeks. But they don't do 2-week EEGs.

 

[Endless]

A video EEG is typically in-patient at the hospital, though some people have had one done at home. The hospital one lasts 2-5 days (usually). There is no real pain involved, except perhaps minor pain from putting in the IV line they have just in case of emergencies. They glue electrodes on your head, train a camera on you, and you just relax for a few days - eat, read, watch tv, etc. I tried to think of it as a spa week, without the spa.

 

[elizzza811]

But it's no different than a regular EEG though then, right? In other words, if I don't have an 'event' in the hospital, it'll come up normal?

 

[Endless]

Not necessarily. Generalized seizures usually show up, even if it's inbetween seizures. Partials may or may not show up inbetween seizures, or even during one. It depends on how many permanent changes have been made in the brain. Not enough seizures, not enough changes in the brain... no-show on the eeg inbetween seizures.

Sometimes people have seizures and they aren't aware of it, like in their sleep. Those may show up, too. At my hosptial they kept waking me up all night asking, "Are you okay?" (The protocol for when the computerized brain wave alarm goes off) Sheesh, I was just switching between brainwaves in my sleep! And that happens about 10 times a night! Like, yeah, I'm okay. Let me sleep now!

 

[elizzza811]

I'm not sure I'm having generalized seizures though? I have to reread what they are.

Are these seizures though?...I'll call them 'doze attacks' and 'swallow attacks'...?...

...Picture youself lying on a couch and just as you begin to doze, you are 'jolted' awake as if the phone suddenly rang...only the phone didn't ring. This happens to me periodically, and when it does, I can be 'jolted' awake 4 or 5 times in a row or more, basically each time I 're-doze'. Occasionally a 'house creak' might jolt me awake one of these times, but not every time...most of the time it's quiet and I'm still 'jolted' awake multiple times. In fact, the last two nights this has been happening.

Also, last night, during one of the above 'doze attacks', I also had a 'swallow attack'. By that I mean that during the 'doze attack', I was forced to jolt myself forward in a panic (and sit up) because I felt like I was choking on my post nasal drip or something and needed to swallow immediately?...Perhaps I couldn't breathe for a second for some reason? Are these 'swallow attacks' seizures, too?

 

[Bee91]

I had several normal EEGs and the neurologist all told me I was fine-or even told me they were psychiatric!!!

Finally, I got a 48 hour EEG that came back abnormal. Then they changed their minds!

But seizures are sometimes hard to pick up on EEGs, especially short term ones.

 

[Endless]

Elizzza,

Have you had a sleep study done? What you describe, jolting awake, could also be a sleep disorder. It takes a good doc to figure out what's what.

 

[elizzza811]

No, I never had a sleep study done.

But they told you that you were basically psycho and nothing was wrong with you, knowing these types of seizures are hard to pick up on an EEG...that's scary.

Do you think the neuro will put me on something as a precaution?...or is she going to make me prove crashing my car wasn't a psychiatric phenomenon???

 

[Endless]

Meds or no meds? It depends on the doc. The first neuro I saw was crazy herself. She said to relax that it's just menopause and my emotions going up and down, along with hormones. Oh, brother! I went to another neuro to get a second opinion.

The second neuro I give more credit to. He didn't start me on meds, but did recognize it might be a seizure disorder, inbetween actually laughing at me when I described my hallucinations, weird smells, and lost time. He referred me to an epi (seizure specialist), which I thank him for. The epi turned out to be one of the best in the region, and is a real whiz. The epi diagnosed my seizures and got me on meds.

That same epi sent me to a headache specialist who figured out I have IIH (Idiopathic Intracranial Hypertension) which is cerebral fluid pressure that is too high, pressing on the brain. That might be the root cause of my seizures.

It's a long hard road to diagnosis. If you don't get a satisfactory answer, keep climbing the doctor food chain until you get to the best. Sometimes it takes a lot of courage and emotional stamina to keep going, but you need to.

I'm just so sorry you are at your particular stage of diagnosis. It's so incredibly hard. We feel sick enough without having someone tell us we're nuts. Keep looking for that "right" doc.

Hugs to you.

 

[Birdbomb]

I'm not sure I'm having generalized seizures though? I have to reread what they are.

Are these seizures though?...I'll call them 'doze attacks' and 'swallow attacks'...?...

...Picture youself lying on a couch and just as you begin to doze, you are 'jolted' awake as if the phone suddenly rang...only the phone didn't ring. This happens to me periodically, and when it does, I can be 'jolted' awake 4 or 5 times in a row or more, basically each time I 're-doze'. Occasionally a 'house creak' might jolt me awake one of these times, but not every time...most of the time it's quiet and I'm still 'jolted' awake multiple times. In fact, the last two nights this has been happening.

Also, last night, during one of the above 'doze attacks', I also had a 'swallow attack'. By that I mean that during the 'doze attack', I was forced to jolt myself forward in a panic (and sit up) because I felt like I was choking on my post nasal drip or something and needed to swallow immediately?...Perhaps I couldn't breathe for a second for some reason? Are these 'swallow attacks' seizures, too?

The jolts are myoclonic jerks but the "swallowing attacks" could very well be Sleep Apnea
My suggestion is to seek another doctor.

 

[elizzza811]

I didn't even know epileptologists existed? Do they exist in Pennsylvania?

And yea, since I was 40 or 41, they've been trying to blame all of my symptoms on menopause. With untreated Lyme Disease my one remaining ovary did konk out on me for a time, but antibiotics for this infection helped pull me out of menopause. In fact, I now think menopause is NEVER normal...but rather, that some untreated infection is involved.

But these seizures are different...this is definitely something that kicked in maybe 10 years ago and hasn't gone away with antibiotics. Sleep apnea is a possibility, too. Thanks!

 

[Endless]

Elizza,

Look here for an epi near you. There are regional epilepsy centers in PA. You're sure to find one there.
http://www.naec-epilepsy.org/find.htm

 

[elizzza811]

Thanks! I found one near me...now I just have to find a ride. I do see my regular neurologist on Wednesday. Thanks again!

 

[Birdbomb]

I recommend you make a list of your symptoms and questions. If the doctor is any good, he'll listen and actually be glad you have the list. Please keep us up to date of how it goes.

 

[elizzza811]

Today's my appointment. I will let you know how it goes. Wish me luck!

 

[elizzza811]

The neuro was leaning towards putting me in the hospital and doing some sort of longer-term video EEG-ing. But with pets, nobody living close enough to feed them, my fear of going a week or more without a cigarette (when I already can't sleep) - and, of course, the fact that (so far) anywhere from 9 to 37 days can elapse between seizures (possibly longer), I asked her about a prolactin bloodtest instead. She gave me a slip, especially when I pointed out my prolactin level was elevated in the past (but the cause was never found).

She mentioned though that an elevated prolactin might not prove seizures? I thought it did? She mentioned something about a possible pituitary issue if it does turn out elevated?

I am POSITIVE (after reading an entire book last night) that these ARE complex partial seizures (and atonics), but now I'm worrying about a pituitary tumor, too? A lot of my symptoms (in the interum between seizures) seem pituitary tumor-ish (trouble sleeping, drenching sweats, palpitations, elevated blood pressure, diminished sex drive), and apparently pituitary tumors can cause seizures? I'm freaking.

My questions...

Will an elevated prolactin level prove seizures at least?

How long AFTER my next seizure do I have to get myself to the lab for the prolactin bloodtest? In other words, if I have one in the evening when the lab is closed, would my prolactin level still be elevated by morning?

Any ideas? Thanks for your help!

 

[elizzza811]

Found one answer...

http://www.medscape.com/viewarticle/413689

...Prolactin blood levels should be drawn 10-40 minutes after the clinical episode (optimally 10-20 minutes) and should be compared with a baseline, drawn before or several hours after the clinical episode (the same time the next day is OK). Hyperprolactinemia is usually defined as a high level, which is more than twice the baseline level...