Hi all this is a first post of mine. Sorry for its length.

In October last year (2016) I was dx with "seizure disorder" having had both focal seizures (2013) & then a focal dyscognitive seizure in July 2016. After the fist focal seizure I had an MRI which showed a posterior L temporal lobe lesion (T2 hyperintensity). I wasn't started on any AEDs until the focal dyscognitive, in October I was started on lamotrigine & haven't had any sx since.

I just want to share my experiences of the focal seizures to see if any others have had similar sx as I also have some mental health concerns that I feel may be of relevance (panic disorder & bipolar II).

I was getting ready for work, put my left sock on, not focusing on what I was doing, I repeatedly failed to put my right sock on for unknown reasons. I felt weird, dizzy & I had this burning sensation in my chest/stomach, my heart started racing, I felt panicky & anxious & sweaty & nauseated. I stood up & walked over to the ensuite, I remember thinking where's my right arm? Like I couldn't see it, my right arm was numb/tingling but it was actually tensed & up behind my head. I'm not sure if I was just feeling vague & confused so like scratched my head or something, or the tensing was just anxiety. I felt anxious like something bad was going to happen & walked out to find my partner in the kitchen. I tried to say I felt weird & describe what was happening but I couldn't figure out the words? Like I knew what I wanted to say but couldn't somehow. I kept getting stuck & saying what the f*** repeatedly. I sank to the floor & backed into a corner, the whole house felt weird, like foreign, I had this sense of unreality, like I was in a dream, everything just felt unfamiliar. It all lasted probably 90 seconds. I then regained the ability to speak & thought wow I either just had a TIA or that was one of those weird focal migraine things like that reporter on TV that started speaking gibberish. I wonder if this is more a panic attack?

The focal dyscognitive started the same then apparently I went blank, was staring, lip smacking & picking at my clothes then became lethargic & confused for about 10 minutes after. I don't remember this but woke with a headache.

Anyone had similar experiences?

Hi Wanderlust90.

What you are describing sounds just like a complex partial seizure and I've had them for over 40 yrs. The feeling you go when things didn't look familiar are called jamius vu and that happens sometimes right before a complex partial seizure. The blanking out, smacking lip, wandering around and pulling at your clothing is all part of the complex parital seizure also.
My advice to you is to have your family Dr. refer you to see a Epileptologist these Drs. specialize in epilepsy and can figure out the cause of the seizure and keep you on the least amount of med. Try taking vitamin B12 1000 mcg. once a day for adult and cut back on the starch and carbs. I have found that taking Diamox, mysoline and vimpat have helped me the most to reduce my seizures. Also stay away from anything with nutra sweet because the nutra sweet causes more electrical activity in the brain which can trigger seizures for some people.
I also have temporal lobe epilepsy but its on the right side. The next time you get that weird feeling tighten up all the muscle in your body and make your hands into fists for a few seconds by doing this you can sometimes stop the seizure. I learned about this back in the 1970's from the neuro I had and it has stopped many seizures. Wishing you only the best and May God Bless You!

Sue

Hi Wanderlust and Porkette,

That sort of seizure seems very scary! Jamais vu is the opposite of Deja vu.

Deja vu is the feeling of having seen something before, of reliving an event.

Jamais vu means the feeling of never seeing something that is happening. In other words, you don't live the event because you are blanked out.

I have just been referred by my Neurologist to a Epileptologist and I am so hoping that my Myoclonic Seizures can be controlled/eliminated. The most difficult are the seizures, called Negative Myoclonus which cause me to collapse to the floor/ground.

Isn't it great that we can share our experiences, get help, and need not 'hide away' as people with epilepsy so often did in the past.

By the way I have had two EEGs and nothing has shown up (so far).

Hugs, Elaine

Quote:

Originally Posted by Porkette Hi Wanderlust90. make your hands into fists for a few seconds by doing this you can sometimes stop the seizure

HEY SUE....

Just FYI, what you posted here - pertaining to "making fists". Oddly, this is strange but true... I've been told to drum fingers ... some type of activity. What it does is, cause your brain to "snap out of it" as there's some activity occurring. It works about half of the time that is... if you get it before it starts!

However that seems to just work for Temporal Lobe, won't work for the other types of seizures ... I am curious to find out what others says... for me it was just the TLE's... I could... I've tried what you stated above on other types - CP, ABS, etc... etc... etc... for me, it won't...

However, so with those with TLE's we seem to be able to accomplish much of the time if we performed some type of motion-type behavior.

So have you had any success with doing this with other types of seizures? I'm curious what others would have to state.....

Hello Elaine;

Just for your information: One can spend 6 hours in Dr's Office to Outpatient all the way to being in Hospital with VEEG ...

No seizure activity? Not unusual; one can have epilepsy and not get it recorded. The critical problem is this: Seizures do not come with a Remote Control where one can click it on to start and click it off to cease!

:-/

From my personal experience, you collapsing on floor - so as you noted - how did they come up with Myoclonic to begin with? It sounds to me you've got Atonic Seizures... I get those once in a blue moon in a blue year.

The best way to describe it... you go limp and kerboom by Murphy's Law, of what is up must come down... to the floor, to the ground, to the pavement, etc... You may or may not be aware of what is happening. With me, I'm always aware, it's just like I'm paralyzed for a brief moment. I may or may not go into a blank, but almost always winds up being in a daze...

Frequently during an Atonic Seizure, I do behave somewhat if I were drunk, but I'm not. My speech would be slurred or incoherent. I would sometimes feel kind of "numb" (not the numbness, an expression).

You do not have the seizure manifestation. Since you've repetitiously said. You didn't blank out, You didn't this or that... this wold be an Atonic Seizure:

This is a good one to view:

Wiki: Atonic Seizure

Read and see if this clears up anything - Good Luck!

Hi Southie, (this is Boston's Southie?)

Yes, the falling is atonic in nature. I don't really experience the fall from the start like you do when you trip, I just realize that I'm almost on the ground and then I am on the ground. I do NOT lose consciousness, I do not lose bladder control, I am not confused, I don't have a headache. I can get right up and go on. BUT it its very very unnerving and I am emotionally upset by the experience.

I have literally collapsed, even if I'm holding on to something, I just let go and down I go.

I also have jerking for brief periods, always on my left side, sometimes my trunk, and left shoulder or head, too.

The myoclonus is the jerking part of what happens.

Once I was holding a full coffee pot (Mr. Coffee) and the jerking started (I'm left handed) and I couldn't let go, and coffee (hot) went everywhere. I had also broken a piece out of the bottom with the jerking.

So there are two pieces to my weird 'things'. Falling (atonic) about once a month and Jerking (myoclonic) very often.

At this point, since I've had lots of EEGs, I think my problem may because of temporary lack of blood flow to parts of my brain. I have some plaque in my arteries in my brain and some areas that are damaged by lack of blood.

This shows up on MRI's and is called glosis in the white matter. I am almost 75 and this is a common problem for older people. The brain begins to have problems from lack of blood supply. I guess eventually I'll have dementia?
But right now that is the best I can conclude from my research.

It leads to several problems, and since it is worse on the right side of my temporal lobe, it probably affects my left side. I have no idea, really.

But my husband is a research immunologist and taught in medical school for 25 years and knows a lot. this is his theory.

I take Gabapentin for the pain of neuropathy and it is an anti seizure drug. It doesn't help at all with this problem.

At this point I don't know what to do next. The epilepsy doctor says it is NOT epilepsy and I tend to agree, He thinks it is autonomic, and there is a clinic at Duke where I can be tested, but I'm not sure it really it autonomic.

I would like to go to the Mayo, to find out what true experts decide...but is it worth all the trouble for something that probably can't be fixed? And at 75?

So I watch TV series, and play Words with Friends, and read books. And try not to think too much about this. But that doesn't work too well, does it?

Hugs, Elaine

No - Southie is my nickname, because I'm a south-paw aka lefty (but I'm a true ambidextrous individual) and plus being a Southern Native American of Florida... hence, too many girls with same name in class; it was easier to call me Southie and it got stuck.

Ok, now I see what you're in reference to; so you would have Atonic as well as Myoclonic. It is not, I repeat, IS NOT - unusual to have two or more various seizures...

Having a variant of seizures back to back is common; (it includes back-to-back-to-back seizures) however, having multiple variants (types) of seizures together is very rare!

Atonic Seizures are what you just described - almost like a water on a duck's back... while the awareness does surround... it is very, very dangerous! While this event is extremely rare to me (it does occur once in a blue moon);

I had a dear precious friend (she passed away after a massive clonic-tonic-clonic with a cardiac arrest) - she suffered from Atonic sporadically; however, all was well until that one morning, boiling a dozen of eggs moving the pot to the sink to transfer eggs to a icy cold water... went half way across before the Atonic seizure floored her, sustained 2nd and 3rd degree burns... while a skin graft wasn't necessary (surface burns, not very deep). What the Dr's did was allow it to heal by itself, then surgically cut her so they could stitch over the bad area. She did have a small scar that wasn't really that noticeable as it was inside of her upper right arm location (as she held the pot AWAY from her). Her oldest sister was there when it happened, so that helped a lot.

The sad part here was my old neighbor's friend, who's son has Epilepsy. He wasn't supposed to be living anywhere higher than the 1st floor (meaning he had to remain on ground floor due to his seizures, even though while his was controlled (finally) but still at a very high risk of anything that could happen) after 21 years of being "seizure-free" (still on meds, but the Epileptologist reduced the dosage so he was taking half of what he had been taking much of his life). His wife-to-be, insisted on they living on the 5th floor of an apartment (somewhere in Boston). From what my old neighbor's next door neighbor (their friend) had told me. The balcony wasn't very stable; according to the fiancee who was in the living room painting the wall, he went over to tighten the nuts that were holding the balcony rails to the concrete; and was having trouble. Somehow, when he rose up, his body suddenly shook violently, and the rail didn't contain him in the balcony and it came completely off and he fell, head first to the pavement below. The parents of the deceased file suit against the Apartments (they won, even though they appealed to the fact - "he had epilepsy", the trial jury found health issue wasn't a factor - the fact the Apartment Management KNEW about the rail on the balcony, it was damaged and reported by 7 previous occupants. The award was given to that family for the sum of 1.4 million, a a portion went to the Epilepsy Research; and the remaining...which they divided it in half with his fiancee - I believe this was posted years ago in the EFA about this - having epilepsy and living in "high rise" buildings? I cannot remember - there might be some folks here who recollects it. That is the article when it talks about - is the matter I just posted.

As for Myoclonic... I do not sustain a true "Myoclonic" - I get them, but they're usually associated with the trigger seizure. I do not get Myoclonic "by itself"... Even though it is recorded on EEG and VEEG - Dr's and Surgeons wouldn't declare having Myoclonic; as one summed it up best ... "you just have an after shock from the original offender..." (In other words, if I had sustained a TLE (Temporal Lobe Epilepsy) episode then a Myoclonic followed after it... they will not combine the two and two, it was plain old TLE. Same goes with Absence, Tonic-Clonic, etc ... I like what one Neurosurgeon said it best.... "a true Myoclonic is by itself. Does not precede after another major seizure." [NOTE: to avoid any confusions - this just pertains to me, myself; this is not to say it applies to others. As others can have multiple seizures of the same or other variants which may occur.]

My primary issue is rather the Nocturnal - I get a lot of flat-liner; and it happens every time I lapse into Stage 3 and 4 sleep.. so it seems I bounce right back from those Sleep Stages. Hence, the waking hours is not a true issue with me ... it's the sleeping hours that is very dangerous! Even though I have multiple variants of Epileptic Seizures... bottom line here is; they do not "explode" unless I had sustained a massive Nocturnal seizures from the night/morning before...

I know this might sound "odd" or "strange" that's the way the ball rolls with me... I'm stuck with it; not a candidate for anything...

NO WAIT! I can be a candidate for President!