Questions about potential epilepsy...

[Volshe]

I saw a neurologist today due to 'episodes' I have been having that have greatly impacted my quality of life. He ordered an EEG. However, he said a lot of things that I don't know if they're true or not.

They started around three years ago at this severity but I have a history of having milder episodes throughout my life. I'm 19. Since I was little I had episodes where I'd feel fluffy, get deja vu, and space out for a minute or two. My teachers noticed and thought I was daydreaming, but I never was.

In the past three years, they became episodes where I'd first feel very dizzy and spaced out for about half an hour. I'd often get deja vu, too - then I'd get other symptoms. It'd start with my heart racing, my breathing going out of control, my face going pale, a horrible knot in my stomach, gasping and swallowing air, feeling like I was not there or I was going to pass out, curling up into a fetal position then stretching out, sometimes crying or laughing, tingling in my hands and feet, and shaking like I had been in frigid weather. After that happens for about 5-15 minutes, it finally stops. The symptoms fade in about 30 seconds. Then, I get a terrible dizziness and headache for about half an hour. Then fatigue. I can sleep for a full 7-8 hours after one of these episodes.

Just about daily, I have the milder episodes where I feel very spaced out like when I was younger, and my limbs get weak and I get nauseated. It lasts only about 30 seconds and I also get sleepy after that.

Now the neurologist said these are panic attacks, but he's doing the EEG "to be sure". But the reasons he gave me didn't exactly sit well with me? Plus I have already tried numerous anti anxiety medicines to stop them, and it never worked. Not even the sedatives. In fact, a few sedatives actually triggered an episode. So did metoclopramide.

He said I couldn't have epilepsy because I don't have triggers, I don't have a history of epilepsy, and because my episodes last too long. Is 5-10 minutes too long for a seizure? Is the fact I have had those space out episodes for years not significant? And the episodes do have triggers - I get them when I have illnesses like the flu, watch flashing lights (green strobe lights most for some reason), have my period, smell certain chemicals (like bleach or Axe), or I overexert myself (and cause myself to breathe fast). I mean, the fact I had those triggers were what made me see him. I thought maybe they weren't just episodes of dizziness. Maybe they were seizures.


Is there anything anyone can tell me about this? Is epilepsy actually a possibility?

Sorry for it being so long. I'm really confused. Thanks in advance.

 

[Nakamova]

Hi Volshe, welcome!

He said I couldn't have epilepsy because I don't have triggers, I don't have a history of epilepsy, and because my episodes last too long.

This makes no sense. If he means there was no primary trigger (like head trauma), then he should know that the vast majority of people with epilepsy never know the primary cause. Did you tell the neuro about the things that trigger your epilepsy? If so, then he should know that these are relatively common secondary triggers for seizures. I think you might want to see a different neurologist -- one who has a better understanding of epilepsy.

You might want to check out the links below to familiarize yourself with some of the different kinds of seizures:
http://www.epilepsy.com/learn/types-seizures/absence-seizures
http://www.epilepsy.com/learn/types-seizures/simple-partial-seizures
http://www.epilepsy.com/learn/types-seizures/complex-partial-seizures

Now the neurologist said these are panic attacks, but he's doing the EEG "to be sure".

A positive EEG can help rule in an epilepsy diagnosis, but a negative one can't rule it out. And partial seizures (which sound a lot like the symptoms you describe) don't always show up on an EEG. Plus, they can be misdiagnosed as panic attacks.

Keep a detailed diary of when your symptoms occur, what happens, how long they last, etc. If someone has observed them, ask them to write down everything that the see. This kind of information will help a trained epileptologist understand what is going on.

Best,
Nakamova

 

[Kgartner]

Now the neurologist said these are panic attacks, but he's doing the EEG "to be sure".

I want to second what Nakamova said.

Those do sound like what could be partial seizures. The original shorter episodes sound to me like classic temporal lobe partial seizures. The newer episodes are longer than simple partial seizures tend to be, but there are many many variations in how seizures present, and sometimes it can be hard to distinguish where the seizure ends and the post-ictal period begins. It is also possible that you are experiencing both seizures and panic attacks.

Also, while an EEG is a very good idea, a negative EEG does not necessarily mean that you are not having seizures - particularly with partial seizures. My daughter was already diagnosed with epilepsy (she had had several tonic-clonic seizures) when she started to also have episodes of "feeling weird" that did not progress to larger seizure events. We were told that they were "anxiety or panic attacks" even though she was already diagnosed with epilepsy! When she went in for an EEG, none of these events showed up - however, it eventually became clear that they were all seizures because on a subsequent EEG when she had an aura followed by a t-c seizure, the aura did not show up either. So her partial seizures are too deep in the brain to register on a scalp EEG.

I would go ahead with the EEG your neurologist is recommending, but if nothing shows up I would get a second opinion. And good luck!

 

[Cint]

And I re-inforce what Nak and Kgartner have said. What you have explained does sound like simple partial seizures. And when I started having seizures at the age of 22, I didn't have a history of E nor does it run in my family. Plus no head injury or meningitis either. The first dr. I saw mis-diagnosed me and the idiot told me I had hypothyroid when I was having simple partial, complex partial seizures. But then I had a major TC seizure and ended up with a serious injury and that is when I was finally diagnosed properly.

Go get that EEG and get a 2nd opinion. Good luck!

 

[lindsayschu2]

I agree with all--these sound like possible seizures, and while they do also sound similar to panic attacks, everything you list as things that trigger them are considered classic seizure triggers. If it were me, I might not wait to get a second opinion. Some of the things your doctor has said don't inspire a lot of confidence. I have had a fair number of bad neuros in 40 years of having epilepsy, and many specialize in diseases other than epilepsy and have only an acceptable understanding of the disorder. Another neuro may come to the same conclusion but at least you will have covered all bases and feel a greater sense of confidence. Or a more trained epileptologist or neuro specializing in epilepsy may decide they could be seizures and want to try a seizure med rather than an anxiety med to see if you have better success.

 

[Volshe]

I am going to get a second opinion, I am going to get the EEG first though. The general consensus from my GP and other sites seems to be that it is very likely to be some form of simple partial seizures.

 

[valeriedl]

I agree with the others. Those do sound like simple partials. If you black out during any then it could be complex partials. I'm no dr though so don't take my word on that.


Most of my seizures, simple and complex partials, last between 5 to 10 minutes. Some less, some longer.

I do have triggers for my seizures - stress, lack of sleep and too much caffeine are the major ones. Other than that my seizures just come out of the blue. Sometimes I'll have a simple partial before hand and other times it will be a complex partial with no warning.

I'm one of the lucky ones (if you want to put it that way) because they knew I was having right from the start. I was 27 when I had it and it was a serious grand mal that I had to be put into a coma because they couldn't get it to stop. All the testing they did showed brain damage. They still don't know what caused the first seizure because I didn't have any sort of seizures before hand and I didn't do anything, like a concussion, that caused it.

Defiantly get an EEG. If they say they aren't seizures or you don't have epilepsy then you probably want to see another dr to get a second opinion.

 

[Joyful]

Yes, I too agree w/ what everyone else is saying. Sounds like some type of partial seizures.
I would definitely get a second opinion.