"don't sweat the small stuff" (or do?)

[Sweet Pea]

Basically: Don't worry about certain symptoms, or tell all the silly little details?

Just this past year my new Neurologist started looking into my "episodes" seriously, after I was worried/complaining about possible seizures. And he has been focused on the "episodes" (as he calls them) that myself and family have identified (and he agreed) as simple and complex partials.

But what I am wondering is, what about every other oddity? Other than the full on 2-7 minute complete textbook "episodes" which are obvious (and less often)?

Like the 4-10 seconds of complete confusion (no idea where I am/who I am with/what I was doing/where I was going - better turn the car around!).

Or getting goose bumps on one side of my body.

Or getting tingling on one side of my face/head/or top of my scalp that lasts for a few seconds and I have trouble regulating other sensory input during that time? But no other symptoms?

The staring spells - where at times I may or may not be completely conscious. However I am not able to reply/communicate, yet I have no dissociation like my usual simple partial "episodes"?

Or "episodes" of staring spells with the claw hands/mouth movements?

Or JUST eye fluttering/eye rolls/spastic eyes (going side to side) with NO other symptoms? Well besides my awareness is skewered - but not absent!

Also, what about unknown facial expressions? I recently found out (through taping myself while on the computer) I make facial expressions that I have no idea of, but when I mentioned it to my family they said "oh yeah you do that all the time."

I don't even know if any of this is relevant to seizures or epilepsy, or if it's normal stuff (cause some do happen all the time, ya know? my family actually chuckles when I try to tell them my "staring spells" may be part of my "episodes". THAT kind of normal/all the time occurrence).

I have an appointment the end of this month to "discuss" my video EEG that apparently didn't show anything? And what to do next. Which should be fun (not).

I'm worried my case will be dropped without all my concerns being looked at or validated. But also: I am concerned to bring up most of this stuff because I don't want to piss off my neurologist and be set back months :O

I am already untreated for anything but my chronic "common" and "complex" migraines (50mg of Topamax). I am terrified it will stay that way

 

[notime]

For a while I was having problems where I would just get a little dizzy, lose memory, and so forth and I came back to being normal after a few minutes. At first, I thought they were absence seizures. He talked about it being rare in adults, and even then they aren't aware of it and somebody has to point it out to them. Since I have generalized form of epilepsy, he said it's possible that it could be myclonics which is like simple partial I assume. I thought it could be the side effects of my medication, and when he reduced the keppra these went away after a few weeks, I still get them but nothing like they were it's only like once every 3 weeks now. I don't sleep right or eat the correct diet so that's another reason that's possible. I've had memory problems before I had epilepsy. :/


I was fortunate enough to be diagnosed with epilepsy without being tested hundreds of times. I've read how frustrated people have became trying to get it... Usually it depends on the symptoms, medical history, and MRI and EEG scans are very helpful for making a diagnosis. Just because it is clear it does not rule epilepsy out or rule that it is pseudoseizures. Want to see the frustration? There was a video about it on TED https://www.youtube.com/watch?v=cRqqRFr5ceQ

These feelings that you get, do they happen before you start shaking or get confused? If so that would be called auras which happens before a seizure which is some kind of warning. I have generalized epilepsy with no warnings. I heard it could be a taste, a dream, deja vu, strange feeling or something like this.

This could be simple partial with complex partial seizures together, but it is possible you have another form of seizures or could be something else. If your doctor isn't taking you seriously, then in my opinion you may want to get a second opinion. A neurologist is a good doctor, don't get me wrong but epilepsy is far more complex than people assume. There are doctors that are epileptologists basically a neurologist who took additional training in epilepsy. You may want to go to one of those.

 

[arnie]

Hello and welcome. I agree with notime about needing to see an epileptologist. Regular neurologists, for the most part, simply do not have the expertise needed to adequately treat epilepsy. As to EEG results, an abnormal EEG can show that you have epilepsy, but a normal EEG does not mean that you do not have it. I have never had an abnormal EEG and I have had epilepsy for over 30 years. I thought I had never had an abnormal MRI until I went to an epileptologist who looked at an MRI of mine from 2013 (that had been pronounced "unremarkable" by my previous neurologist) and pointed out 6 or 7 gross abnormalities, many of which could have been caused by decades of improperly treated seizures. Here's a link to a thread I started which goes into this in a lot more detail. Best of luck and keep us posted!
http://www.coping-with-epilepsy.com/forums/f23/get-thee-epileptologist-23319/

 

[Cint]

It sounds like you're suffering from Simple Partial/Complex partial seizures. The simple complex are actually 'auras', sort of a warning before a complex seizure or a TC. Those staring 'episodes' sound like Complex partial seizure(s). My CP seizures start with an 'aura' or simple partial, and then continue into a CP, where I will stare into space. My friend or family will speak to me, but I will not answer them. They say my eyes get a glazed look in them. I may try to speak or move my mouth, but all that comes out is gibberish. So yes, this all very relevant to seizures. This IS a seizure.

As said previously, get a 2nd opinion if not being properly diagnosed. Best to be seen by an epileptologist, which I've been seeing since 1990.

Go to this great website that tells all about types of seizures:
http://www.epilepsy.com/learn/types-seizures/complex-partial-seizures

 

[Sweet Pea]

I want to start off with a thank you for your replies I did read them, and I am familiar with the idea of seeing a Epileptologist.

And I did see a Epileptologist (but only for VEEG testing). And they were not exactly impressed or supportive of my case. I had no episodes during my 5 day stay, and when the doctors came in they would just say "okay, tell me something". Which was largely disappointing because I can barely express why I am there verbally, let alone what I experience.

And considering my health insurance, I am unable to seek out another Epileptologist anytime soon. Also I would like to have the summary (and thoughts) from my neurologist about my VEEG.

However I DO need to ask a very general question that I just do not get. I asked it in my original topic but I may have not communicated it correctly ):

But...

Those symptoms individually, can they be qualified as an actual seizure event?

Like just the staring spells with motor movements (but NO aura) as a single event, or the tingling/goosebumps in designated areas as a single event, and especially the eye fluttering as s single event?

Or does a Simple Partial Seizure have to include everything mentioned in a textbook?

My neurologist agrees it sounds like I'm having Simple Partials that sometimes continue into Complex Partials. But the only events he takes in account are the ones that include everything: dissociation, tingling/pins and needles, confusion, ear ringing, and if it turns Complex: blacking out/loss of time, automatisms.

These feelings that you get, do they happen before you start shaking or get confused? If so that would be called auras which happens before a seizure which is some kind of warning. I have generalized epilepsy with no warnings. I heard it could be a taste, a dream, deja vu, strange feeling or something like this.

Yes, and I am aware I have auras/SPs. And my neurologist agrees they that's what they sound like. He's pretty sure that they are, just that they might be non-epileptic due to a history of anxiety.

And I don't get shaking or convulsing. I have never had a Tonic Clonic/Grand Mal in my life (thank goodness. and I hope it stays that way!).

Hello and welcome. I agree with notime about needing to see an epileptologist. Regular neurologists, for the most part, simply do not have the expertise needed to adequately treat epilepsy. As to EEG results, an abnormal EEG can show that you have epilepsy, but a normal EEG does not mean that you do not have it. I have never had an abnormal EEG and I have had epilepsy for over 30 years. I thought I had never had an abnormal MRI until I went to an epileptologist who looked at an MRI of mine from 2013 (that had been pronounced "unremarkable" by my previous neurologist) and pointed out 6 or 7 gross abnormalities, many of which could have been caused by decades of improperly treated seizures. Here's a link to a thread I started which goes into this in a lot more detail. Best of luck and keep us posted!

My neurologist told me I could be a "brain model" from my MRI. I have noticed my neurologist, even though he is a great listener and treats my migraines, barely knows what symptoms of seizures are. Or knows of any kind of knowledge outside of general for that matter. For instance, I asked him if he knew anything about 'face blindness', as it is a problem I have had for years. He told me "he heard of it once, but doesn't really know what it entails". So I dropped it. Its difficult, because he is convinced normal EEG and MRI = Brain Model. I'm at my wits end ):

My CP seizures start with an 'aura' or simple partial, and then continue into a CP, where I will stare into space. My friend or family will speak to me, but I will not answer them. They say my eyes get a glazed look in them. I may try to speak or move my mouth, but all that comes out is gibberish. So yes, this all very relevant to seizures. This IS a seizure.

That is how a lot of my 'staring spells' look like to other people as well. Expect I do not speak or respond and I do not have auras before them. So that is what makes me wonder if it is a seizure? And if it is helpful or hurtful to mention?

 

[valeriedl]

Before I joined this sight I thought there were only two types of seizures - Tonic colonic, the type were you shake and complex partial, the type where you blank out and loose memory. These lasted about 5 minutes or longer. These were the kinds that I have and what I would tell my neuro about when I had them.

When I read about simple partials I saw that I was having them too and that they were also seizures. My lips would tingle, I'd get very confused about things, I'd have trouble talking and many of the other things that you described. They would only last about a minute. I told my neuro about them and we realized that I was actually having more seizures than I was telling him about.

Tell your neuro about anything that is going on, wither you think it's a seizure or not. It could be a side effect from one of your meds also.

If whoever it is that you are seeing for your epilepsy doesn't listen to you then I'd defiantly go to someone else. I was seeing my neuro's nurses practitioner every few visits. The woman didn't listen to a thing I had to say. Any answer to any question I asked was "You aren't taking your medicine and that's why 'whatever' is going on". She gave me absolute no advice on anything either.

The last time I saw her I blew up in the office, actually yelling at the receptionist, telling them that I was never seeing her again. I told her that if I ever had to see or talk to the nurses practitioner again I was finding a new neuro. The only time I've ever seen her now is when I'm in the waiting room and she won't even look at me, I think she's afraid to. It's pretty funny!