Name for Type of Seizure

Discussion in 'The Watercooler' started by susiestar, Sep 22, 2011.

  1. susiestar

    susiestar Roll With It

    Jess and I were talking just now and I was trying to help massage away some pretty nasty muscle spasms in her arms and hands. She is having a bad day and is hurting a lot, so I was trying to help distract her and to loosen up the worst of the muscles. These are not from overuse, the spasms come in just a few seconds time with no warning and the muscles go from normal to rock hard to the point that she can't straighten her fingers. She either has to use her other hand or she has to have someone help her straightne them - and it is not easy. So I was looking at her hand as I worked on it.

    I looked up because her face moved in a strange way - saw something that caught my attention from the corner of my eye and it pulled my attention from her hand to her face. She was thrusting her tongue out enough to push her lips out but not to stick it out of her mouth, her mouth wasn't totally closed. It is not something she does normally, not a habit or symptom seen before.

    Her eyes were rolling up in her head, eyelids flickering - just as I saw the whites of her eyes I could tell the eye was moving back and forth quickly but could only see the very bottom of her iris and I said her name and she sort of snapped out of it and had no idea what was going on. She said that she felt a huge wave of pain, worse than she was already in, and felt almost like she was falling asleep. Was not hot or cold, didn't smell anything funny or have a strange taste in her mouth. She wasn't even super tired before/after, just that all of a sudden falling asleep feeling.

    While she felt like she was falling asleep, this was not like any falling asleep I have ever seen.

    What type of seizure would cause her eyes to roll up like that, the tongue thrusting, the sudden falling asleep feeling? I don't know if it is related to the pain and muscle spasms or not. Sadly, the muscle problems have happened before, way more than once, but never did the other stuff happen.

    No recent medication changes have happened so t couldn't be because of that. She had an eeg done on Mon but I don't think they found anything - tech made a comment to herself that I overheard and basically she wished she had seen something, so it makes me think it didn't catch anything. This practice does seem to know taht just because an eeg didn't catch it this time doesn't mean it isn't happening - eeg tech told us this and so did the nurse who took a brief medication history over the phone.

    We see the doctor on the 11th of Oct, but I am going to call today - both the neuro and the reg doctor.

    If anyone has a clue of what type of seizure could cause that, please let me know. not so much cause the muscle spasms, but cause the eyes rolling up and the tongue thrusting, etc...

  2. keista

    keista New Member

    I'm no expert on seizures. Researched them some last spring and learned little more that I already knew. BUT I did just do a quick look up and found this site rather detailed and helpful.

    Scroll down the page, and then click on the types for more info. It actually gives a 'scenario' of what each type looked like. I quickly scanned through them and recognized Atonic seizures as something you described a few weeks ago - Jess was just falling over.
  3. Hound dog

    Hound dog Nana's are Beautiful

    Susie, she was having a seizure, although I can't tell you what type. I'm no expert although Travis has had them most of his life........and he's had some pretty darn unusual ones. As I recall some of the ones that were causing the unusual symptoms were temporal lobe seizures.

    In nursing they honestly teach very little about seizures, which as far as I'm concerned is neglectful.

    But catching one via eeg is all in the timing, in other words, you pray you're lucky. Otherwise, they diagnosis by symptoms, so keep doing your log. If you have something that takes video, record it if you can.

    We were lucky with Travis. His eeg was one long continual seizure, and he had one long eeg too. When an eeg scares the doctor, you can pretty much bet on the fact you're in uncharted territory. He was so stunned by what he found he actually was compelled to show it to me and explain, well he could explain what was happening.....he couldn't explain why because in a lifetime of practice he'd never seen anything like it before.

    It's good that this practice understands they won't always be lucky enough to catch it on the eeg.

    I have a vague memory of sometimes a person being admitted and monitored with eeg equipment for at least 24 hrs, maybe more, in an attempt to catch what is going on. Don't bank on it, but I have a vague memory of someone (no clue who) having to resort to that to find out what was going on. I used to belong to the NIH board back when it existed and hung out in the neuro section/ Traumatic Brain Injury (TBI) area as much as I hung out here, I'm guessing that may be where I heard it.
  4. susiestar

    susiestar Roll With It

    We did a 24hr eeg in Dallas last year. But she was on seizure medications so they didn't see anything and used that as proof she wasn't having seizures and to cut off her seizure medications. It is why I came home from Dallas so furious.

    She had 2 more in the last hour or so. I saw one and then husband saw one. The one I saw was accompanied by her muscles all going into that spasm that it is hard to move them out of, the super sleepy feeling, and the eye roll. The tongue thing didn't happen with the one I saw and husband was too freaked out to remember if he saw it. I have called the docs, but doubt they will do anything until the appointment on the 11th. At least we didn't have a 3 month wait to see the doctor, Know what I mean??
  5. Hound dog

    Hound dog Nana's are Beautiful

    Ok. Maybe I'm stupid, but I don't understand that reasoning. Why would you remove seizure medications because an eeg showed no seizure activity? I mean, to me that would mean that the medications are working to some degree. That doesn't mean she can't have seizures regardless of the medications. Actually, eeg is how they monitored if Travis' medications were working at their current doses. So that doesn't make sense. I'm thinking you had a major dud in a neuro there.

    Often his medications had to be increased because of increased eeg activity.
  6. slsh

    slsh member since 1999

    Susie - the eye twitching thing sounds like nystagmus. Boo has partial complex seizures (affecting only part of his body, he's unresponsive and is not aware of his surroundings) that rapidly zoom into secondary generalized seizures (typical grand mal). If the seizure doesn't get stopped, he then goes into a nonconvulsive seizure (there's no obviously movement of extremities - he's actually pretty loose-toned at this point - but his eyes are rhythmically going back and forth (nystagmus) and he's still unaware and unresponsive) and then he'll flip back and forth from generalized to nonconvulsive and back until he's hit with enough Ativan to stop them.

    I've never really looked at Boo's mouth (other than to check for cyanosis) so I have no idea what his tongue may be doing.

    To my layman's eye, it sounds like Jess is having partial simple seizures because she's still aware, though may be unable to respond. The nystagmus just sounds like a new layer, I would guess because of the seizure activity moving to a different part of the brain. Maybe the falling-asleep feeling is her moving to a more partial complex seizure type - I dunno.

    Did she have any weakness after any of the episodes? Boo usually gets Todd's palsy afterward - weakness on 1 or the other side of his body - usually the opposite side from where the seizure started. Because he can't use his extremities anyway, I'm not sure how much they are affected, but his face is where it really shows up. He'll smile at me and only half of his mouth will move. Freaked me *out* the first time - I thought he'd had a stroke. Usually resolves in 24-48 hours.

    It never ceases to amaze me the lack of knowledge about seizures in the medical community. It's really quite scary. Last sz, they wouldn't let me in until he was "stable". Which, of course, he wasn't - he was having his nonconvulsive thing going on but I couldn't get anyone to listen until he started back up with the tonic-clonic movements. We're fighting the assumption that because he has CP, he's near-comatose anyway (what a stupid assumption), so I've had blankets printed up with- a warning about nonconvulsive activity. Boo is alert and responsive at baseline. If he's not responsive and has nystagmus, he's seizing. So even if they won't let the overprotective mom back in the ER, the info will be right there on his body.

    I hope this new neuro knows his stuff and will listen. If you have a video camera, I'd get these episodes documented. In spite of 13 years of epilepsy here, Boo's never had an abnormal EEG. Seeing is believing.

    Hugs to you and Jess.
  7. Steely

    Steely Active Member

    I am just going to ask a probably stupid question, but has her potassium been checked? Probably, but FWIW, I had all of what you are describing happen to me traveling from dallas to arizona. I had to get out of the car, fell to the ground, all of my muscles seized up, I could not move any parts of my body without my mom prying my hands open, my tongue was thrust forwards, and I could not talk. I was care flighted to the hospital (because I managed to have this happen in no-mans land - and also because the paramedics thought it was something serious.) By the time I got there things had stopped, and when they did my blood work they found that my Potassium was extremely low. I had gotten severely dehydrated moving and that caused my Potassium to be really low....However, to this day I still have to take Potassium or I will start to have the same types of muscle problems. I have not found out the reason that my body never has enough Potassium, but it is probably related to my kidney problems. It is a simple thing to have her bloodwork quickly checked, if she hasn't had it done in 6 months, just to rule that out.
  8. susiestar

    susiestar Roll With It

    Sorry to leave you all hanging with-o any info/answers/update. It has been quite a day.

    Steely, the potassium/electrolyte thing is the first thing each doctor checks. none of them believe the lab tests from the other docs, even if they work in the same bldg and use the same lab and it was done a month ago. Annoying, but bloodwork isn't a big deal to any of my kids - anything that involved a needle means ice cream, so they are just fiiiiiine with that, lol. We have played with various supplements and vitamins with two of the pediatrician neuros, but they didn't do anything.

    Lisa, there is NOTHING stupid about you. That reasoning did not make sense to any of the nurses. The main neuro we saw looked me in the eye and said that even if she was on medications they would see the seizure activity, it just wouldn't cause any other part of her body to react to the seizure. His nurse looked at him like he just swore that Tinkerbell and Peter Pan were standing on Jessie's head. I have no respect for the man - and he clearly has no respect for a parent's ability to read and use common sense. Several times I found nurses whispering about how what he told us didn't make any sense, but I am sure he would not have listened to them.

    The nurse at the neuro says this is clear seizure activity - classic is what she called it though she didn't say a type. The appointment won't be moved up unless the primary care doctor calls and asks them to. We are seeing the primary care doctor on Tues, being worked in and I am betting they will call the neuro.

    Today was terrifying for Jess. I spent the day curled up next to her, cuddling her. First she did the eyerolling, head to toe pain/spasm thing. Ten mins later felt a bit better but then suddenly got SUPER hot all over. I made her get into a comfy position because that is our cue that the freezing, unable to move type of seizure is going to happen. She was able to keep her hands moving, and her eyes and after about thirty minutes could talk and swallow. Too two HOURS more until she could move her legs even a little bit. Twenty minutes later that hot feeling hit her again, again I had her get comfy where I could stay near her, and this time her hands and arms and head were more mobile, but her legs felt nothing and could not move. When she couldn't see me I stuck a needle into her foot to see if she could feel anything. NO reaction at all, and that was 90 min after that freezing thing happened.

    This is the koi the pcp tried to tell us "might not be normal for others but just might be normal for you". When we saw him last tme he blushed when I brought it up. Also said he had seen her records (by the latest visit) and that he was wrong when he said it might be normal for her - or anyone. He hadn't realized all we had already done/dealt with/tried/found out.

    Thanks for the info about some people never having eegs that show seizures. I will remember that and use it to help push for help for my daughter. I hate this stuff and so much just don't want her to hurt or to deal with this koi.
  9. Steely

    Steely Active Member

    And what happens if you call 911 when she has a day like this? Will it move up your appointment faster?
  10. susiestar

    susiestar Roll With It

    No. We are in a very different and strange area for 911. They probably would take her to the local ER, but the ER isn't going to do anything. been there done that and all they will do is look at her, tell her to take deep breaths and relax and it will all go away. Seriously. The ER staff here has already told us that they don't believe that most of what people are told are seizures are actual seizures - except the grand mal kind. I know this sounds NUTS. I really do. I am NOT making it up. The most the local podunk ER will do is give her a benadryl, I have NO faith in these people. They are the ones who said that she couldn't have been hit by a car because she wasn't dirty. Gee, the pile of baby wipes at home that we used to clean her up because a lot of it was dried grass and gravel? Would not have been believed to have been used to clean her up if they had done it themselves or the paramedics had seen us do it.

    We have a 90 min ride to the big city ER and I don't have a lot of faith that they will do anything either. It svcks great big ostrich eggs, but getting the family doctor to call them Tues is what will get us the fastest help. The city ER, regardless of which city we choose, will tell us that they can't do anything and give us a prescription for a 24hr EEG. Which cannot be done in this state with-o the approval of the neuro we are going to see in Oct. I already danced that dance twice, having gone to the children's ER in both of the big cities and gotten the same thing. I do have faith that this neuro will listen to us.

    He has in the past. He is not a total unknown because he is the one who diagnosis'd Jessie's seizures in the first place, and asked if he could use her eeg and her video with classes he was teaching because it is rare to get one to show exactly what a textbook case looks like. We agreed, but there is still a copy in her chart. He was pretty awesome the first time around, for the most part. I didn't ask enough questions, and should have asked about some things I didn't at the time, but now I know more of what I am dealing with.

    I just HATE knowing that I can take my kid into an ER and get nothing in the way of help for her. Thanks for letting me vent here. If she loses consciousness, we will call 911 no matter what, and I will keep calling her doctors and pushing for that earlier appointment time. But it is a heck of a lot shorter wait until Oct 11 than the 3-4 month wait we have usually had to see a neuro after a problem. Dr. Scream couldn't be seen for problems any sooner than 3 mos from the time we called.