"Auras" on VEEG

[Kgartner]

My 16-year old daughter has complex partial seizures with secondary generalization, and is on Onfi. At the end of July, after a really bad week in which she had 5 seizures, her doctors took her Onfi dose from 20mg/day to 40mg/day, and also switched her to 3x/day dosing. Since then she has not had any more tonic-clonic seizures, thank god.

However, after the dosage increase she started to have 30-90 second "episodes" which feel to her just like her pre-seizure aura. Before a complex partial she always has an aura in which she says she feels "weird" like the world is unreal, gets a panicked sensation, and then feels the world "tilting" (her words). Her auras have no motor symptoms and she can speak normally during them.

Now she has episodes where she gets the "weird" feeling and the panic, but it doesn't progress. Sometimes she has 3 or 4 of them in one day, sometimes a few days go by without one; they can be very mild, or quite intense. She generally calls for me, grips my hand, tells me she "feels weird" and is clearly in the grip of a strong internal sensation. When they are intense she is convinced she is about to have a "big" seizure, but then after about 60 seconds the feeling is gone and she is fine.

A few weeks ago we had a VEEG to check these out. She was in for 24 hours and had a handful of the milder episodes. Her doctor said (quite categorically) that they are not seizures because they did not show up on the EEG. He suspects that they are anxiety or panic attacks. She does suffer from anxiety, and has had a few panic attacks (3 in the past 18 months) but they don't look anything like these short episodes. We were hoping that if she knew that they weren't seizures that they would start to go away - but they have continued, even though her overall anxiety level has diminished considerably. Yesterday, after a couple of nights of not enough sleep, she had 4 episodes, with one very intense one.

I don't want them to be seizures - but I do want to get a handle on what's going on! We want to celebrate her being 2 months seizure free, but that's hard when she keeps feeling like she's about to have a seizure every day or so! It would be easier to sort through this if her episodes were not purely a subjective feeling - but that's the same way her auras are as well. I'm finding this all very confusing.

Have any of you had a VEEG in which your simple partials or auras did not show up as seizures? Conversely, has anyone had experiences with anxiety or panic that mimicked your seizure type?

 

[BIGMAN131307]

It sounds like the Onfi is working to a certain extent. It has stopped the tonic-clonic seizures, which is great.

But those "episodes" that she is still experiencing are Auras or Partial Seizures. Auras or Partial Seizures as some doctors refer to them as, are signs of bigger seizure coming. But in your daughters case the Onfi is stopping them. Which is what its supposed to do.

Improving her sleep pattern, and diet could always help. A 24hr VEEG is not enough time to determine that these are not seizures. EEG tests are not perfect. Often it takes several testings to catch the seizures. A 3-5 day VEEG would be more effective in determining that.

 

[Kgartner]

But those "episodes" that she is still experiencing are Auras or Partial Seizures. Auras or Partial Seizures as some doctors refer to them as, are signs of bigger seizure coming. But in your daughters case the Onfi is stopping them. Which is what its supposed to do.

Yes, that was my first thought when they started happening. But even before the EEG her doctor was pretty convinced that they were not seizure activity, and once the VEEG was negative he told us with certainty that they were "not seizures." We go to a Level 4 pediatric epilepsy center (CHOP in Philadelphia) and he is an epileptologist (or in training as one - he's a fellow). He seems sure that they are anxiety related, and I want to believe him - but right now I just feel unsettled about the whole thing.

Not sure what to do. Do VEEGs typically miss mild auras? and if so, why wouldn't he tell me that, or at least allow for the possibility of that?

 

[masterjen]

My seizures are considered "too deep" to be picked up by an EEG, so no, my auras have not been picked up on an EEG.
My seizures are complex motor and tonic, and the pre-seizure feeling is very similar to that muscle fatigue/weakness/tingling feeling one can have 12-24 hours after a strenuous work-out. Because I do work out regularly, for a long time it was hard to distinguish whether the sensation was post-workout or pre-seizure. It didn't trigger panic or anxiety for me, just concern and that "oh no" feeling. In time I learned to convince myself to relax, do something to take my mind off the sensations, and carry on. Your daughter is young and may not be capable of convincing herself to "relax" or whatever. Is she someone who would be into self-help books, perhaps about teens with epilepsy, panic disorders, etc.?

 

[Cint]

Well, IMO, if he (the dr.) is in training to be an epileptologist, even at a Level 4 Center, he's not there yet. He doesn't know everything like HE thinks he does! Like Bigman said, those 'auras' are simple partials and they DON'T always show up on EEGs. The VEEGs may miss the rather mild ones. When I was going in for observation for brain surgery, they initially did the VEEG on me, but for more info, they had to do the fMRI, just to make sure they were getting the right area.

If you don't feel right about this dr., trust your instinct. Ask for a 2nd opinion-- someone a bit more experienced.

For more info :http://www.epilepsy.com/learn/diagnosis/eeg/video-eeg

 

[BIGMAN131307]

Yes, that was my first thought when they started happening. But even before the EEG her doctor was pretty convinced that they were not seizure activity, and once the VEEG was negative he told us with certainty that they were "not seizures." We go to a Level 4 pediatric epilepsy center (CHOP in Philadelphia) and he is an epileptologist (or in training as one - he's a fellow). He seems sure that they are anxiety related, and I want to believe him - but right now I just feel unsettled about the whole thing.

Not sure what to do. Do VEEGs typically miss mild auras? and if so, why wouldn't he tell me that, or at least allow for the possibility of that?

That right there is one reason I would request a longer VEEG session. Not that he is bad, it's that he is still learning about seizures.

Yes, it is possible for the VEEG to miss mild auras. The technician may fail to spot them because auras very in people. IMHO the epilepsy training is lacking. It's like everything revolves around tonic clonics. They fail to learn about the others types of seizures.

When I was in for my hopefully last VEEG session I experienced first hand. When I was having a CPS, my family pushed the alert button. The nurse came in and began to examine and talk with me. When I wasn't responding to him, he asked my family what was wrong with me. He clearly wasn't properly trained about CPS seizures. So I'd assume he wouldn't know much about Auras or Partial Seizures either. On the better note, when I did have a Tonic Clonic he and other nurses knew exactly what to do.

Even if those technicians and nurses just looked at site like this one, it would help some.

http://healthtalkonline.org/young-p...epsy/experiences-different-seizures-and-auras

You need to be proactive in your daughters care.

 

[Kgartner]

Thanks everyone. You are validating my instincts here.

I am wondering if his opinion of what is going on is being colored by the fact that she does suffer from anxiety - she had anxiety issues before she developed epilepsy, and has had some pretty awful anxiety attacks since then, which were considerably worsened when she was on Keppra. However, these events are nothing like her anxiety attacks - they are not "emotional" in nature at all. The panic or worry comes after the initial feeling of "weirdness" or unreality, which is the primary experience.

I feel like he is ignoring or rationalizing the fact that we keep telling him that these episodes feel almost exactly like her auras. From my outside point of view, the way she acts during them is the same way she acts during her pre-seizure aura. And they are short, with a clear beginning and ending. I feel like he's suggesting that she's developed psychogenic simple partials that just happened to coincide with an uptick in seizure activity and medication increase - that they couldn't possibly be an epileptic seizure if they don't register on an EEG. (BTW he's never once suggested that her complex partials and t/c seizures were PNES; we've never had an EEG during one, but their clinical presentation is 100% consistent with epileptic seizures, plus they've been very responsive to medication.)

He is out of the country right now, and we will have an appointment in October - in the meantime I am writing EVERYTHING down. If I am unsatisfied at that point I will put my big girl panties on and ask for a second opinion.

 

[SlimBlue]

they couldn't possibly be an epileptic seizure if they don't register on an EEG.

Absolute BS. The posts above are totally correct. I've been having full t-cs for 20 years, and all of my tests have just described 'potential epilepsy'. I would look for another neurologist if I was you.

They sound like classic simple partials/auras. I can't believe a neurologist wouldn't see that, and would be more willing to diagnose it as very rare psychogenic seizures.

Well I can, it just saddens me greatly

You mentioned your daughter's anxiety problem, so maybe that is just a trigger. It's obvious more detailed analysis of her condition is needed. I would definitely get a second opinion.

P.S. 'big girl panties' sound awesome

 

[Kgartner]

They sound like classic simple partials/auras. I can't believe a neurologist wouldn't see that, and would be more willing to diagnose it as very rare psychogenic seizures.

To be totally clear, he never said "psychogenic seizures" or pseudoseizures to me. He just said that he thought that they weren't seizures, but an "anxiety or panic issue." But since they feel like auras/simple partials to her, it seems to me that that is what he is implying. Luckily these episodes are short and not particularly dangerous - just very frightening to my daughter.

In general we have really really liked our neuro. He replies to my calls and e-mails in a timely fashion. He correctly identified some of the issues she was having last year as medication side effects and advocated switching her meds; and after a seizure recurrence in June worked really hard to find a medication that allowed her to take a long-planned overseas trip. But on this issue I am really feeling like we are not being heard - that he paying more attention to the EEG and what he thinks things generally look like than to what we are saying to him.

 

[Navy Veteran]

I get them all the time. I call them deja vu because I feel like I've been there, done that or I feel like I am dreaming. Whenever I do start getting these feelings, if anyone is around, I give them a heads up that a major seizure or a gran mal is on its way. New terms for them but I like to use "lay man" speak because I recently have been having trouble with my memory, though I can still out think most people with my little peanut of a brain Sorry, veered off topic.

I have had 5 VEEG's over the last three years going for a week at a time, and 2 of them I was in for 11 day's. Wow, did this suck. Not able to leave your room all the while wearing dread locks and in my case, losing at least 7 pounds during each because that food was baaaaad. My wife was able to bring me food once when I had one down here, but the others have been done in L.A. which is about a 5 hour drive in traffic.
Sorry, got off on a tangent.

The auras you are describing are seizures. I am in no way a doctor, I am just going by what my own doctors have told me. They do show up on my readings, on average about 15 times per "lock down" at the hospital. I also have, on average, about 3 of the flopping around like a dead fish. Sorry, that is my description of what happens to me during a gran mal.

Anyhoo, keep asking questions of all your doctors. Do not accept just one opinion. Doctors are there to help you. Do your research and ask about what you have found. Not sure if I am able to post links yet, but if you google to Epilepsy it will direct you to a page that explains all the different types. Another site you may be interested in is Patients Like Me. Google this. It has a feature that you can fill in everyday describing how many, type, what happened before etc. and it keeps a chart of the seizures. It organizes them, which is helpful to bring to your doctors. I hope what I have posted is helpful. Just my :twocents:

 

[SlimBlue]

He does sound good up till now, but I've had this problem with doctors before

Stay strong, you obviously know what you're doing, and what these episodes most probably are.

Don't be embarrassed, or worried about offending your doctor by getting a second opinion, or even a third.

The diagnosis for the cause of my epilepsy is so vague and tenuous it would make you laugh. The only reason they chose it was because the symptoms kind of matched- even though the actual test results were negative.

They're a lot less clever than they make out..

 

[skyfire322]

He does sound good up till now, but I've had this problem with doctors before

Stay strong, you obviously know what you're doing, and what these episodes most probably are.

Don't be embarrassed, or worried about offending your doctor by getting a second opinion, or even a third.

The diagnosis for the cause of my epilepsy is so vague and tenuous it would make you laugh. The only reason they chose it was because the symptoms kind of matched- even though the actual test results were negative.

They're a lot less clever than they make out..

I echo these sentiments. With my latest testing, my doctor offended me big time (saying I should blame my parents for this genetic disorder), so you most certainly have the right to get a second, third, and even fourth opinion.

You've got a very strong support group here, so if you need anything, let us know!

 

[MAB]

My 16-year old daughter has complex partial seizures with secondary generalization, and is on Onfi. At the end of July, after a really bad week in which she had 5 seizures, her doctors took her Onfi dose from 20mg/day to 40mg/day, and also switched her to 3x/day dosing. Since then she has not had any more tonic-clonic seizures, thank god.

However, after the dosage increase she started to have 30-90 second "episodes" which feel to her just like her pre-seizure aura. Before a complex partial she always has an aura in which she says she feels "weird" like the world is unreal, gets a panicked sensation, and then feels the world "tilting" (her words). Her auras have no motor symptoms and she can speak normally during them.

Now she has episodes where she gets the "weird" feeling and the panic, but it doesn't progress. Sometimes she has 3 or 4 of them in one day, sometimes a few days go by without one; they can be very mild, or quite intense. She generally calls for me, grips my hand, tells me she "feels weird" and is clearly in the grip of a strong internal sensation. When they are intense she is convinced she is about to have a "big" seizure, but then after about 60 seconds the feeling is gone and she is fine.

A few weeks ago we had a VEEG to check these out. She was in for 24 hours and had a handful of the milder episodes. Her doctor said (quite categorically) that they are not seizures because they did not show up on the EEG. He suspects that they are anxiety or panic attacks. She does suffer from anxiety, and has had a few panic attacks (3 in the past 18 months) but they don't look anything like these short episodes. We were hoping that if she knew that they weren't seizures that they would start to go away - but they have continued, even though her overall anxiety level has diminished considerably. Yesterday, after a couple of nights of not enough sleep, she had 4 episodes, with one very intense one.

I don't want them to be seizures - but I do want to get a handle on what's going on! We want to celebrate her being 2 months seizure free, but that's hard when she keeps feeling like she's about to have a seizure every day or so! It would be easier to sort through this if her episodes were not purely a subjective feeling - but that's the same way her auras are as well. I'm finding this all very confusing.

Have any of you had a VEEG in which your simple partials or auras did not show up as seizures? Conversely, has anyone had experiences with anxiety or panic that mimicked your seizure type?

They sound just like partial seizures to me. I had a partial seizure while I was having an EEG and nothing showed. All my seizures started the day I had a stroke so we are sure they are seizures even though they have never showed up on either of the EEG's I've had.

Any time an aura does not progress to another type of seizure they are partial seizures, not auras.

 

[Kgartner]

Well, I think we may have our definitive answer. My daughter had a really strong aura in school today, and when she didn't feel 100% better afterwards she went down to the nurse's office. Shortly after that she had another aura followed by a complex partial/grand mal. Luckily she was with the nurse, who took great care of her. Sucks big time. I basically hate being right about this.

Her regular doctor is out of the country, so I'll be talking to someone else today. Maybe they will listen to me a bit more.

 

[Kgartner]

We just got back from my daughter's neurologist and I have another update.

Her neurologist is now convinced that these "episodes" are seizure activity. Apparently while no seizures were recorded in her EEG, she does have some "slow wave" activity in her temporal lobe - which seems to be a new development (her previous EEG was normal). In addition, I think that he has finally really listened to our description of her seizures and now really understands that these "episodes" are EXACTLY like her seizure aura. So it's like BIGMAN131307 said - the Onfi is working to suppress the t/c seizures, but not being effective with the partial seizures.

This means that she is officially refractory since this would be the third medication she failed (other 2 failures were due to side effects). In addition, it seems that her epilepsy has worsened in the past year.

They want to capture some of her seizures, so she will be checking back into the EMU some time in the next few weeks - but this time they'll be withdrawing her medication. They really want to see what's going on, and also to evaluate if she is a surgical candidate. She is totally against the idea of surgery right now, and we do have other good medications to try (lamictal will be next, then vimpat), but it will be good to know if that his an option.

Kind of a lot to take in. But I wanted to let you know that our neurologist did come around and we feel very supported by him.

 

[BIGMAN131307]

They want to capture some of her seizures, so she will be checking back into the EMU some time in the next few weeks - but this time they'll be withdrawing her medication. They really want to see what's going on, and also to evaluate if she is a surgical candidate.

Hopefully they can locate a focal point to determine if she's a surgical candidate.

She is totally against the idea of surgery right now, and we do have other good medications to try (lamictal will be next, then vimpat), but it will be good to know if that his an option.

Kind of a lot to take in. But I wanted to let you know that our neurologist did come around and we feel very supported by him.

I totally understand, epilepsy surgery is scary.

But the AEDs side effects can be even scarier. I didn't like the idea of surgery either. So I went with the medication route. Over my twenty+ years dealing with seizures I was on fourteen (yes 14) different AEDs. Because of those meds I ended up having gallstones, gallbladder removal surgery, kidney stones, ulcerative colitis, irritable bowel syndrome.

I was fed up with having seizures, side effects, etc. So I decided it was time for the surgery. If I knew then what I know now, I'd be a lot healthier now.


Good luck with the EMU testing session.