Newly dx focal seizures
 

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

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