Oh "the Spells" ! I get them a lot, get overwhelmed then can't function, can't speak etc, actually it doesn't matter where I am, I can be home and not be able to talk or think properly.

M-i-m:

I was told seizure activity doesn't always show up on EEG's, doesn't mean you're not having them so it's good you're going to the Epilepsy center.

I'm told I have staring spells, just stop talking and stare then come out of it, don't know I'm doing it. I lose time and also feel like I'm in a dream state which lasts for 1-2 minutes or so, get a wavy feeling in my head and it feels like my brain suddenly shifts, things can look different.

One time here comes the brain shift and I started shouting the same words over and over like a robot, couldn't stop, then my left arm shook, muffled voices then I came out of it, hard to talk to begin with.

Hope you are ok and get answers.

Absence seizures.

Hi Sitke,

Thank you for your well wishes. I have been told my staring spells can last anywhere from 5 to 20 minutes long. Sometimes I can tell when they are about to happen because I' become suddenly confused, and my reaction time slows way down to stopping. There is usually an incredible pressure/ pain that starts on the left side of my head just in front of my ear and all around it that shoots across the top of my head to exactly the same spot an the right side of my head, like a too tight head band.

I used to shake like crazy on my right leg and then the right arm. Now the spells seem to stop all movement, and even affect my walking, as I need assistance (and once a wheelchair) to get to a place where I could sit or lay down.

I had one incidence at Neuro Rehab when I had a spell that sent me to the ER on an ambulance, where out of nowhere my left arm and leg started to flail and my right leg was shaking so severely, the therapists had to surround me to keep from falling off my chair. I was sobbing out loud with incoherent speech which started and stopped abruptly. I remember this happening, but I, too, felt like I had no control over my actions and "robot-like". Just came out of nowhere. This was on of two bad ones I had while in Neuro rehab that sent me to the ER by ambulance.

I was told that these spells were not absence seizures because with those you resume your activities as if nothing had happened, and I always have a period of confusion and need help to remember what I was doing just before the spell began. The confusional period can last 5 to 10 minutes, or sometimes I can slip into another spell almost immediately.

Unfortunately, I am becoming less and less aware of when they happen. I also feel when I come out of them the typical confusion, slight to moderate, but I feel as if I was only "gone" for a moment, like 1-2 minutes. Always surprised to hear it lasted 5 or more minutes, then additional 5+ minutes or more to come out of the confusion stage. WOW!! I am so shocked by the time differences between me and whoever is with me to observe the spells.

Hopefully I will get some answers. I hope you get the answers you are looking for as well. Take care, M-i-m

Wow MIM, I hope they figure that out soon. Sounds so scary. Are there triggers you recognize?

Jace

Hi Jace,

The only triggers I see as consistent are the sudden confusion ( don't know what I am doing) and slowing down, and the head pressure and pain. They mostly happen when I'm with other people, but as I found out in Neuro rehab, they can happen when I'm alone doing something like chopping veggies. In fact, that was one of my first complaints to my OT in rehab. I told her it would take me forever to chop veggies ( as noted by the clock) and I couldn't figure out why. She saw it happen when I was cooking in rehab on a number of occasions.

Now, I set a timer of 5 minutes and if I do not get it done in that time frame, I am to take a small break and resume with the same method until finished. Still haven't finished in 5 minute time frame sometimes. Oh well!

Please take care, M-i-m

Hi M-i-m,

Seems like professional's have conflicting opinions, this is why I am so pleased you are going to an actual Epilepsy center as they will know for sure. It does sound to me like you are having seizures but of course I'm not a Dr.

There are different kinds of seizures and you can have several types.

How long has this been going on for you? Did anything happen beforehand?

I had a severe concussion last year, hit my head but don't remember it, lot's of cognitive problems then started with all this.

I too remember the shouting I did, I knew it was me but couldn't stop,so hard to explain, I have heard some people get extremely upset as you did in the ER.

I totally understand the sudden feelings of confusion and slowing down, this happens to me, it feels like my brain suddenly shifts and I know something is wrong, if I'm in a store I just stand still and everything is slowed down and dreamy. This can be known as an aura.

I was told absence seizures only last for a few mins (who knows though) I don't have any recollection of going in to anything weird, I just feel like I wake up but then realize my brain has been somewhere else as time has passed, don't know where it's been though! no thoughts. I can even be walking when it happens, on the phone, watching TV.

I've had electric and shaking feelings in my arms. I've gone in to places I know very well but they seem new to me, I get confused where I am then it passes.

Do you ever look at something and it just doesn't look right? one time during a spell the table did not look right and my short term memory is shot, how is your memory?

Please let us know who things go? hope you are okay, obviously something is going on and hope you get answers as this is scary not knowing.

Don't mean to go on about me, just wondering if you experience any of these other symptoms, I totally understand everything you are describing.

Do you drive? be careful, I don't like to drive now, a few times I've had spells on the road and thank God there was no other traffic around me as I suddenly stopped the car then "woke up" and realized I'd stopped.

Take care...

Hi Sitke,

I am so relieved (yet sad for you) that I am not the only one that knows what I am talking about. I don't know if I recall seeing things that "just don't look right", however, I have experienced lack of coordination and fumbling of objects in my hands at the beginning of the spells. I never had this happen before the accident.

When you said your "brain suddenly shifts and you know something is wrong"...yeah, I've had exactly that. I call it a sudden confusion, as I hesitate in movement or in speech, because it's as if I suddenly don't know what's going on. Then it all begins.

I don't drive. I did for a short while after the accident and before the Neuropsych testing, because I kept getting reassured by Neurologists that I didn't have a severe brain injury, since I was never in a coma. But I can tell you, I had moments when I drove, I would stop accelerating and slow way down on a number of occasions without knowing why I couldn't maintain pressure on the pedal. One time, I had to pull over and let my son finish driving us home, because I couldn't keep my eyes on the road, but kept looking around and losing concentration. (Thank God nobody was behind me at those times). I know I cannot drive until these spells and my cognitive abilities improve. Just did not know what was happening to me back then.

My last spell just happened yesterday while eating dinner with my husband and son. Both told me my pupils we huge, just filling up the whole colored area while I was not responding and staring, then returned to normal size when I came out of it. Neither of them had seen this before, so definitely something I will bring up when I see the M.D.

I hope you can get some answers, too. It's strange not knowing why these keep happening, and I feel like most of the Neurologists I've seen are all too ready to dismiss these as psychological. In fact, I wouldn't even mind if they found them to be psychologically induced, because at least I'd have an answer, and I could start to get treatment for them.

The not knowing is tough. Please take care, M-i-m

Hi M-i-m,

I know, I'm also relieved that someone else understands this yet also sad you're going through it too.

Neuro's say it's psychological!! well, it is in the brain but no not the way they're thinking!!

Yes! when you were driving and not knowing why you were slowing down, me too, brain not working properly, my husband would ask me why I was slowing down, the light is green but I just didn't feel right, confused about everything around me.

If you don't mind my asking, what kind of accident were you in, did you hit your head and have a concussion? sorry, not been reading a lot of posts lately so must have missed it.

Your eyes changing like that last night is showing something is not right, I'm sorry you're going through that.

When was your accident? Do you know a brain injury doesn't always show up right away, symptoms anyway, it can actually take a long time in some people or just several months, these spells started with me 6 months after my accident but I had severe cognitive problems form the start.

i am seeing a neurologist in August and hope he can figure out what is happening, I just know I'm going to be extremely upset if he dismisses me.

I saw a chiropractor yesterday for other injuries still going on and he is actually sending me for a head/brain MRI to rule out a brain scar etc to see if it will show what's causing this, at least he was very caring and concerned.

These spells also seem to happen in clusters, 2-3 a day for days then they will stop for several days then start up again. When it happens out I feel scared especially when I'm alone, I just stand there.

Please be careful, can you let us know how things go, I am very interested and hope you find an answer, at least you will know, hugs....

Yesterday I overdid. I could feel the fatigue setting in. My mom dropped me at Walgreens front door to get a bottle of water. I can count on one hand how many times I've done something like this on one hand

I was in that light headed dreamy state and took a while. She parked and came in just as I was at the register. I put my things on the counter and he rang me up and I just stood there. They stared at me. I had no clue what to do next and wasn't even thinking of the next step. My Brian was just floating.

My mom looked at me odd and I looked at the clerk and it took me a bit to put it together. I eventually paid but messed that up.

Over stimulation does this to me. Sounds, movement in my vision, lights, thinking, talking, all of it. Going out is very hard still

I don't think I have seizures but I can relate to you both.

Yesterday I overdid. I could feel the fatigue setting in. My mom dropped me at Walgreens front door to get a bottle of water. I can count on one hand how many times I've done something like this on one hand

I was in that light headed dreamy state and took a while. She parked and came in just as I was at the register. I put my things on the counter and he rang me up and I just stood there. They stared at me. I had no clue what to do next and wasn't even thinking of the next step. My Brian was just floating.

My mom looked at me odd and I looked at the clerk and it took me a bit to put it together. I eventually paid but messed that up.

Over stimulation does this to me. Sounds, movement in my vision, lights, thinking, talking, all of it. Going out is very hard still

I don't think I have seizures but I can relate to you both.

Still messy today and brain fatigue