My 15 year old daughter has been having seizures for 5 months now. Was admitted to the hospital two times. Video eeg and MRI was done. Normal test results. Doctor basically told us if it doesn't show on the EEG we should seek psychiatric help. Wasn't comfortable with that response which brought us to another neurologist how feels strongly that it is temporal lobe epilepsy. A typical episode for my daughter starts with what she calls a spacey feeling which could last for hours. She then loses her vision, which fades in and out. I have seen eye twitching at this time. Her legs and right arm shake uncontrollably. She is conscious the entire time. Her skin gets very flushed and hot to the touch. The episode could last up to 25 minutes of this uncontrollable shaking. Whenever I mention to doctors that she is conscious and that it lasts 25 minutes they look at me as if I am crazy. From what I read if you have a partial seizure you are conscious. My gut feeling is that this is neurological and not psychological but 25 minutes for a seizure seems extreme. The current neurologist is treating her with Tegretol 300mg per day. She was seizure free for 4 weeks which was an improvement. Just the other day she again had a seizure. The doctor increased medication to 400mg per day. I can't help but go back and forth between whether this is Temporal lobe epilepsy or a pseudoseizure. I would appreciate any feedback or experiences.
Why would you think your daughter would fake seizures?
I have seizures, without a diagnosis of epilepsy, and have just started to see a therapist. Not because I am faking, but because I can no longer relax because I am afraid I will seize. That is when seizures hit. BTW, my test are all normal too, but I still have a seizure disorder.
Anyway, having someone to talk to throughout this ordeal is not a bad idea. Don't be afraid to take your daughter to a therapist, it can only help.
Thank you for your response. I have been taking my daughter to a therapist to help her get through this trying time in her life. She for the most part has been extemely upbeat and brave. The therapists first impression was that this was not a pseudoseizure. I get such mixed opinions from other neurologists that I guess I am concerned about whether or not we are handling this the right way.
Well, I will tell you one thing and this is from the side of the "seizuree" if you will.
I am 38 and married. So, not only do I deal with my husband and 3 wonderful boys, 17, 12 and 7. I have to deal with my family and his. My family is wonderful and supportive.
HIS is not nice at all. They treat me like I am faking. They talk about how much MONEY I am costing their son. We are uninsured and have incured major expenses. His Mom is old school and almost whispers the word seizures, as if it is something dirty. It is upseting to me and I want very little to do with my inlaws. I make no bones about it, as I have discovered recently that life is to dang short to put up with people who treat me so bad. When I have to hear people talk like that, I feel like I am a mutant!!
So, if you are positive, supportive and loving, towards your daughter when she is seizing and after that is what she needs. That is how my Mom is. I need that and I am a grown woman.
Keep your daughter around positive, upbeat people and she will be better for it in the long run! It sure sounds as if she has a good attitude.
How many docs have you been to? Doesn't it tell them something that the Tegretol has stopped her seizures?
Lots of indicators of BOTH (which a lot of actual epileptics have-- something like 40% of "real epileptics" also have pseudoseizures)....most people with pseudoseizures are not deliberately "faking" anything...but they aren't real neurological, physical seizures....they're emotional, but cause the similar symptoms. Malingering is faking on purpose...not everyone with non-epileptic events are deliberately doing anything to cause their symptoms, and are NOT malingering.
25 minutes is way to long for a true physical seizure, unless she's in status; and true- many people with simple partial seizures are completely aware of what's going on. Just because the MRI is normal doesn't exclude seizures. If she had episodes while being video-monitored, and was hooked up to an EEG, that is pretty diagnositic of physical seizures/epilepsy or non-epileptic events....there are specific wave forms that define many types of epilepsy (including partial seizures)... if someone is having episodes that don't match the sort of waveform, it's really hard to get a doc to believe that the episodes are physiological...
Has your daughter had some sort of trauma that may be coming out in these episodes-- doesn't make them her fault at all, or indicate that she's doing it on purpose, but maybe she doesn't know how to talk about what she's feeling. (teenagers are lousy at getting to real feelings in general....
"whatever" seems to be their main vocabulary, from my experience!! It could be that she's got some emotional stuff that is just to hard for her to express other than to basically shut down, and release the physical stuff with arm and leg movements.....just an opinion....
There's a list about the differences between "pseudoseizures" and seizures somewhere on the net....if you entered pseudoseizure definition in your browser, and hit search you should be able to find it... I've got a copy of it somewhere, but we can't list actual addresses here.... not sure if you can message me on the board or not (still learning the rules, and don't want to do anything that messes that up).
A big clue-- do the episodes ONLY happen in the presence of other people?
Does she ever get hurt? Is she ever incontinent (although many with seizures don't lose control either). Does she get up immediately, and not have any fatigue or "foggy time" afterwards?
Even if she's got pseudoseizures (or whatever that new name is that is less "blaming" of the patient), there's a reason behind it, and it's doubtful that she's going through all of this just for the heck of it.... even emotional disorders cause real pain (and sometimes symptoms suggestive of a lot of other things).... but if the episodes on video/EEG did not show epileptic activity, that's a pretty strong indicator, although nothing is absolute with this disorder. Best wishes in your search for the real diagnosis, and in getting good help with it....
My daughter does have a wonderful support system. We are trying to be positive with her and tell her all the time how proud we are of how she is handling this. We have experienced people who just don't understand epilepsy and feel we aren't doing enough for our daughter. I hope your husbands family finds understanding for your health situation.
Thank you for sharing. My daughter has not had any trauma and was a pretty happy teenager until this all happened. When I told family and close friends that this could be pseudoseizures they could not believe it because my daughter is very out going and easy going. She is the kind of person who doesn't get bothered by things. Most of her seizures have been in front of people however there was a time when we had a party at our home and she went to her room and had the seizure by herself because she didn't want to ruin the party for us.
I have felt from the beginning that this was something physical and not psychological. Not all of her seizures lasted 25 minutes, some only a few and the longer ones the ambulance came and gave her oxygen.
I hope you can get some answers....there's nothing worse than being doubted, or not getting the help that's needed. I still think the word "pseudoseizure" conjures up all sorts of ideas that the person is deliberately doing them, and that's so often not the case, and adds to the stress which can make any sort of seizure activity worse..... my thoughts go out to all of you... and hope that the doc comes up with something more definitive, so that this can be put to rest for you all...it's got to be horrible to go through.
Hi just read your letter, my 20 year old had her first temporal lobe seizure 17 hours and 3 psuedo seizures, so called by doctors at St marys Paddington and National Neurological Hospital London, during June & July this year. She is on Tegretol Retard 600mgper day. She had to give up a medical school place and later(oct) went to uni to study Forensics but had to give up this too as she was so tired, sleeps 12 hours a day and lacks concentration. She is resting again and slowly getting better but would love to know any others thoughts on will she ever get full brain power back. She has reapplied to uni next Oct and would like to think she can do it. Doctors no help and say its not to do with Tegretol. All her MRI,scans tests etc came back negative. She is alo worried about hallucinations, bad dreams she gets and during pseudo seizures goes into twilight state for 1 or 2 days, talks a lot of nonesense is awake but not really there. Her leg and hip twitch 1 to 5 times a day often making her stumble. Anyone experienced this? What to do. If she is seizure free for a year her consultant will wean her off Tegretol. Is tegretol now the major problem or is it the temporal lobe epilepsy. She won`t see a counsellor but I know as I am sure all of you do the psuedo seizures are real, frightening and debilitating. Any shared experiences, comments would be appreciated.
I've also got an autonomic nervous sysem disorder that causes some weird symptoms, that have been verified by medical tests, and make me look drunk, even though I"m very aware of what's going on- one arm might be hot, the other cold, pale, and blue fingernails and lips, speech slurred, gait unsteady, blood pressure and pulse all over the place, delayed responses, etc....it's possible that there's something besides seizures going on in addition to them....When I get the "uh oh" feeling before either of them, I head for someplace where I can't be found (which isn't too safe, but I just don't want to be seen like that). You might check out dysautonomia (not the familial sort, but "plain" dysautonomia) and see if this answers any questions. There can be a bazillion different symptoms, and they don't always happen together, but often the person may have one or two patterns of symptoms. The other sort I have is neurocardiogenic syncope, which is a form of dysautonomia, where I just fall over in a dead faint.....regardless- I sleep for hours, and feel out of sorts for a day or two, whether it's the seizures or dysautonomias
Any new news? My husband came home today after a video eeg for 4 days. He had 6 seizures, and the eeg was normal during all 6. The dr, an epileptologist in Houston, one of the best, sugessted he is suppressing something and that they are psychological seizures, but REAL seizures none the less. He said that 30% of the people that go into that unit for the test (people that don't respond to meds) have this and its not uncommon. After reading numerous posts tonight I dont know what to think!