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Gleck

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Hi all,

Nice to see there is a place like this to get the advice and support of others.

A bit about me: Firstly, my father had epilepsy from when he was a young child, with grand mal seizures. He was on depakote for ~25 years but hasn't had a seizure (and has been med-free) for 27 years now. I had an abnormal EEG (in temporal lobe?) about 12 years ago, after going to a neurologist for a weird thing where my one leg buckled underneath me when standing up to leave a movie theater. I chose not to do anything about it then but recently had to see a neurologist again, after a high impact rear end collision (guy was texting, going 75 mph, hit me while I was at a complete stop). Though I thought I was fine right after the accident, I had a severe headache later in the day that lasted weeks as well as a "fainting" episode, which landed me in the ER. They did a CT scan, which came back normal and released me with pain meds. Follow-up with my doc resulted in referral to neurology, another EEG and abnormal results again (waiting to see what is abnormal about it in followup).

I have had some other weird neurological symptoms over the years, including: migraine headache (not so weird), these episodes where my eyes feel misaligned (lasts less than a minute), smell auras (where I smell something "chemical" but others don't smell it), hemifacial spasm (where one half of my face twitches to the point of being totally contracted on one side- I looked like I had a stroke). Anyhow, each of these things either hasn't been particularly disruptive (e.g. the eye thing or the smell auras) or was treated (e.g. headaches with advil, sleep it off; botox for facial spasm). I guess some of this could potentially be more atypical symptoms of epilepsy? Not sure. But other than that, I haven't had anything that I would think was a seizure. Ever.

I guess I'm concerned because the neurologist- at my exam before the EEG- said the ER doc should have taken my license away (and I fear he may do this very thing when I go back for my follow-up). I'm also thinking seriously about whether I should consider taking meds or not. I'm sure the doc will try to push something on me. When I had the initial abnormal EEG some years ago, the neurologist understood my concern about side effects of the meds. I felt the side effects might outweigh whatever problems epilepsy (?) might be causing me. I say might because I remember reading somewhere that children of people with epilepsy can have an abnormal EEG even though they don't have seizures. Has anyone here heard of that before?

Anyhow, my dilemma may return. Certainly, I don't want to not take meds and cause whatever might be going to get worse (does that happen?). ANd who knows- maybe I will suddenly be much sharper if medicated appropriately. Wouldn't that be nice?! ;) On the other hand, I worry about side effects being worse than what I am experiencing. And of course, I also worry about not being allowed to drive.

I welcome any insights, experience and advice others may be able to offer.

Thank you!
 
Welcome, and I remember reading somewhere here on the board that sometimes you can get abnormal readings on EEG without actually having epilepsy? They most likely won't push meds unless they actually diagnose you with epilepsy, but they don't diagnose epilepsy without you having at least one seizure. However, auras themselves are a type of seizure called simple partial seizures (these are not the same as the auras you get before a migraine). Do your auras that you mentioned precede a migraine?
 
Hi Gleck, welcome to CWE!

As Josie says, you may already be having seizures -- the kind called Simple Partials, which take the form of sensory disturbances like phantom smells or vision problems. (More about Simple Partials here: http://www.epilepsy.com/epilepsy/seizure_simplepartial). If these symptoms are progressing in frequency, duration, or nature, then it's important to get them under control. Keeping a symptom diary is a good way to gauge if this is happening, and can potentially help identify triggers as well.

If you are diagnosed with epilepsy, you'll need to weigh the risks of untreated seizures against the possibility of side effects. As for driving, ordinarily where there's no alteration or loss of consciousness, your license wouldn't be suspended. The laws vary from state to state, including whether or not it's the responsibility of the physician to inform the DMV. If there's a chance that your fainting episode was seizure-related however, you might want to consider voluntarily avoiding driving, at least until you have a better sense of what's going on. Hopefully your EEG results will provide some guidance. EEGs can produce both false positives and false negatives (regardless of whether there's epilepsy in the family history); a neurologist will use the test results in combination with your actual symptoms and any other relevant factors (head trauma, possible genetic link) to make a diagnosis.

Let us know how things go.

Best,
Nakamova
 
Thank you, all.

It does sound like if I am having any sort of seizure, it would fit into the simple partial category. The smell aura is not usually followed by a migraine but rather by the weird sensation that my eyes are not aligned. It's hard to describe. Sometimes, I will have a headache after that. I have had visual auras related to migraine- looks like shards of light swirling around, like a kaleidescope.

I still feel like these little things (luckily) aren't very disruptive to me, whatever is causing them. Mostly, they are increased when I am running on less sleep (e.g. right after I had my baby, after this recent car accident)- then they can happen daily, sometimes a few times each day. Otherwise, they aren't even very frequent, maybe just a few times a month. I always just figured they were normal neurological hiccups.

I did avoid driving for a few weeks after the fainting episode, to be sure it didn't happen again. And it didn't. Since then, I've still been very careful but haven't had any indication of a problem. And if I am having seizures with these other symptoms, I am not losing consciousness. I am fully aware of when they are happening, how long they last, etc.

I do think doctors must have to report to dmv in my state (California) since the neurologist commented to his resident that the ER physician should have taken away my license and could get in trouble for not doing so, when I went in for the fainting episode. He backed off this view a bit when I explained that my previous abnormal EEG wasn't entirely conclusive considering it wasn't clear I'd had a seizure and if I did, it was only one time (the leg weakness). He also said that an abnormal EEG can be from epilepsy or migraine (which I've been diagnosed with), and that EEG wasn't a good test for distinguishing between the two (and then he ordered me to get one). I still don't understand that!

Anyhow, I thank you all again for the info you've provided.
 
I think (correct me if I'm wrong?) part of the benefit of the EEG is that they can also observe you and your behavior. They like to try to trigger a seizure to see how it looks on the test, and to see what your seizure is like. If they can trigger an episode, and it appears on the test, and they see that it is an apparent seizure, they could diagnose you based on that. (I think... it's been a while since I had mine...)
 
You mentioned that the smell auras are smells that others don't smell--have those you were with you during these auras ever said if you seemed different, appeared different in any way, such as eye fluttering or involuntary movement, or anything like that? I have been told I do or say things during a simple partial seizure that I don't remember saying or doing. I remember having the seizure, but there are details that I am not aware of.
 
Yeah, I didn't experience anything seizure-like (even the aura symptoms that may be of the simple partial type) during the actual EEG. Would you have to have a seizure during the EEG for it to appear abnormal? Or could it be abnormal if you are having seizures at all? Also, does anyone know what else can manifest as an abnormal EEG? Are those things distinguishable from epilepsy via the EEG results alone? Or is it more based on a differential history?

My husband has been around numerous times when I have the smell aura and doesn't think there is anything much different about me. When I ask him if my eyes look messed up at all, he can't really tell. I've even looked at my eyes myself in the mirror and taken pictures, and I'm not really sure they look different. They feel more misaligned than they actually look- maybe look a little "crazy-eyed" but it's barely perceptible, if different at all. I also feel a little "distant" or "removed," if that makes sense- kind of like when you're distracted by something. But nothing that I would consider outside of the normal range. At least my normal :) I am totally conscious and even able to carry on a conversation.
 
Well, if I understand correctly, one can have an abnormal EEG without having epilepsy, so I deduce then that you can get the "blips" without having seizure. I have no source on that, however, so take it with a grain of salt. I don't know if there are specific scenarios of abnormal EEGs in people without epilepsy.

When I was diagnosed, they administered three EEGs (only one came back abnormal), an MRI (showed an abnormally formed temporal lobe), blood tests and physical exams, episode history, and family history. I had a 30 minute EEG, an hour EEG, and a three hour EEG. I had a seizure during the three hour EEG, and that was when they diagnosed me. It helps if they actually see one.
 
Would you have to have a seizure during the EEG for it to appear abnormal?
Click to expand...
Nope. Some kinds of epilepsy can produce very characteristic "interictal" patterns -- that is, even when you are between seizures, certain kinds of abnormal brainwaves are produced. That was the case for me -- I've never had a seizure during an EEG, but I've definitely had abnormal EEGS.

EEGs can produce false negatives and false positives. What's normal in a child's EEG can be abnormal in an adult EEG, and vice versa. Brainwaves that are normal when you are asleep may be abnormal if they appear when you are awake. So context is a big part of EEG interpretation, and a skilled neurologist will be able to identify any relevant results and explain if they are definitive one way or another or merely "suggestive" of a diagnosis.

EEGs may miss abnormal brainwaves that are too transient, or that originate too deep in the brain to register. This can be the case particularly for frontal lobe epilepsy and some temporal lobe epilepsies. In these instances, a longer vEEG might be helpful, or the neurologist may need to make a diagnosis based on clinical information -- i.e., your actual symptoms. This is why keeping a diary and having a good witness can sometimes be key in getting a diagnosis.
 
Thank you. That's all very helpful. I'm hoping to learn more at my follow-up appointment. I'm sure you'll all hear from me then :) Thanks again!

Gena
 
Update

So, upon reviewing my initial post, I was pretty much right on target, and I am not very happy. I went back to the neurologist yesterday after pushing for an earlier appointment (they originally wouldn't schedule me until Feb. 25!), even though the dr. mentioned in an email that my EEG results were extremely abnormal. He started by saying he was glad I pushed for an earlier appointment because my EEG was very abnormal. He wouldn't say a lot more than that despite me asking for further detail RE: what made them abnormal. He explained that there really wasn't enough time to go over it all with me, that it was very complicated but clearly abnormal, no question. Based on that, along with a fainting episode I had (from being on lots of meds for terrible headache and not eating) after a car accident, he is recommending treatment for what he is saying was a complex partial seizure. I am not convinced that episode was a seizure. In fact, I am fairly sure it was not. The ER doctor I saw concluded I just fainted from the aforementioned reasons. Sigh.

Anyhow, the part that has me so upset is that he wants me to try meds that have terrible potential side effects, not the least of which is cognitive impairment and risk of neural tube defects in future babies. My career is intellectually demanding, and I have plans to have an other child in the near range (I am 36). Whatever seizures I may be having (if any) have not been disruptive to me, certainly not as much as I fear the meds would be. But there was a veiled threat when I mentioned my concerns RE: meds- that "the DMV will not be happy if you decide not to treat this."

I live in California where driving is necessary. I know you all do not know me, but I am a very responsible individual. I would absolutely not drive (especially with my baby daughter) if I thought I had even the slightest chance of having a seizure that would interfere with my driving. Period. After my fainting episode, I personally refrained from driving for a few weeks to be sure I didn't faint (or even feel like I would). All of the light-headedness and headache started immediately after my rear-end accident, and I have no doubt those symptoms were a direct consequence of that. They have slowly faded away but now I am being forced to take meds I don't want OR not be allowed to drive.

I also have a slight worry that the EEG results could potentially be indicative of something else wrong with me that is being attributed to epilepsy/seizure because of the coincident fainting spell. I figured the EEG would probably be abnormal since it was abnormal 12 years ago, and I have had nothing happen in all those years. My guess is if I had an EEG done right this minute, it would be abnormal. My brain activity is just weird, for some reason.

I really don't know what my options are. Do I have any recourse? Anyone have any thoughts?
 
In California, physicians are required by law to report disorders characterized by lapses of consciousness to the DMV. They may also report any other condition if they believe it would affect the driver's ability to drive safely. If you think the neurologist is going to report you, you may want to be proactive and seek a second opinion. Ideally, a different neurologist would have access to your EEG report, and be able provide more information than the current doc about any other diagnoses that might be relevant.

Some of the symptoms you describe are consistent with simple partial seizures. If they are epileptic in origin, there's the risk that they might progress or generalize. If you feel reasonably confident that they aren't related to epilepsy, then you needn't opt for medication. I recommend that you continue to monitor your symptoms to track whether they are changing in frequency, duration, or kind. If there is any loss of consciousness in the future, then you would need to consider the risks of continuing to drive and remaining untreated.

You might also want to look into non-medication treatment approaches such as neurofeedback. If you are regularly producing abnormal brainwaves, that would make you a good candidate in terms of establishing a protocol and gauging progress.
 
Welcome to CWE. We all understand what you are going through. I first had my license revoked because of epilepsy while living in California. It is as Nakamova said.

About the EEG, I would ask for a phone consult to better explain the results, or possibly a referral to another neurologist for a second opinion.

I understand your concerns about medications and pregnancy, but some of the newer drugs are safer than the older drugs. If you choose to be on an AED, be sure and tell your doctor about your plans for a future pregnancy.

Take care and watch the caffeine and stress levels.

Maryk
 
Can you be my doctor? :)

Seriously, that all sounds very reasonable.

There is no question that I would stop driving immediately if I had another episode with loss of conscuousness. In that case, I would be absolutely open to trying medication as well. Even if I didn't have loss of consciousness but rather the simple complex partial seizures (if that is what they are) became disruptive, same thing. But based on one questionable episode and without further information RE: the nature of the EEG abnormalities, I just can't justify the potential costs. BTW:The neurologist actually didn't think any of the other weird things I described (eye thing, smell auras, etc) were seizures.

I think a second opinion is definitely in order. Not sure how that works exactly, and it's possibly complicated by the fact that our insurance will change come Jan 1st. I would also be interested in learning more about alternative treatments, such as the biofeedback you mention. I'll search around the forums for more info.
 
I am not sure where you live, but UCSF and UCLA have top notch epilepsy programs. I can see where you are coming from. You have not had a seizure that you or family/friends were aware of and your neurologist is pushing some of your symptoms off to the side, i.e. smells, eyes, etc, which sound like simple partials to probably most of us, yet he says your EEG is totally abnormal and wants you to start medications, yet he does not have time to review your results. Has he diagnosed you with epilepsy? You owe it to yourself and your family to get a second opinion from a caring neurologist. I am truly sorry you are going through this. It will be okay though, there are many on this board who have gone through similar with their neurologists.

MaryK
 
Thanks, MaryK. I live in San Diego actually. Not sure if there is an epilepsy center here, but I'm going to look in to it. I want to find someone good for a second opinion. He did not say he had diagnosed me with epilepsy. He said that based on my abnormal EEG and the fainting episode, he felt it was a complex partial seizure. Not sure if that automatically means a diagnosis of epilepsy or not.
 
Hi Gleck, I have just skimmed your posts. Not happy with a doctor that brushed off your questions about the EEG results. Insulting to say the least you are obviously an intelligent man and deserved an answer.
I worry for you too when medication is the first recommendation. We went that route with my daughter and life spiraled out of control. Beginning with the headaches I would be suggesting that you do some research on Magnesium. Working up to the higher levels. Also check into the benefits if food quality fish oil, Vit D, and also perhaps check out the posts here on Neurofeedback. I am using my phone app for the forum otherwise I would be linking you to everything.
I am not saying to not listen to you medical team but do trust your instincts. I didn't at first and it through us into a 3-4 yr spiral while I learned all I could about seizures. Even went to UCLA as mentioned above and had a terrible experience.
We have found that my daughters system becomes out of sync when her blood sugar is not regulated it throws her hormones into a tizzy which lowers her seizure threshold. She is also a competitive athlete so she has increased needs.

Do not rush your decisions.
I did and now I regret it.

Epilepsy is only a label. It means two or more seizures. Whatever the cause of your father's seizures might or might not be the reason for your symptoms. There is a lot written on the brain gut connection. You might also look into that.

Give me a call out if you have any specific questions to what I have written. My daughter is almost 2 yrs seizure free and taking no meds
 
Sorry to hear that you and your daughter went through such a hard time, RobinN :( Glad it sounds like things have gotten better. And thank you for your suggestions.
 
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