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Is there any hope for answers ?? Normall EEG ?? Seizure Like Episodes Occuring!!!

Sun, 09/08/2013 - 23:26

Our journey began in Nov 2012 when we first noticed our 14 year old Daughter may be having seizures and quickly turned into a nightmare.  While out shopping one afternoon It seemed that My Daughter was just ignoring me and wouldn't respond to me when I would address her or ask her a question.  I got aggravated and punished her and told her I did not appreciate her ignoring me and disrespecting me.  She acted as if she was clueless of what I was even talking about which did not make me any happier with her.  I then noticed one day while I was talking to her and she was looking right at me but something wasn't quit right.  She was in like a zoned out in a deep blank stare.  I even waved my hand in her face and she did not respond to the movement.  I kept calling her name and then after a few seconds I noticed her eyes roll back and she would snap out of it and say " Huh, what did you say?"  this happened several times before I witnessed a much larger type of episode take place.  I started to watch her closer and observe her more at all times of the day and one day she just wasn't feeling well.  She told me that she was tired and just feeling bad so I told her to rest and go take a nap.  I too went to my room to take a nap when she came in my room and said "I don't feel good" then her eyes began to twitch, along with her hands and arms jerking then she went into that deep blank stare or unconscious and her whole body then jerked but not violently.  Her eyes glassy and fixed into a deep stare as the eye lids would twitch. She does drool a good bit and choke on saliva which scares me to death being I had suspicions that she was having these type of episodes in her sleep.  This type of episode will last from 3-8 minutes (she has had two that lasted 35+ min) then all the jerking and eye twitching stops she will either go into a deep sleep or cry with a severe headache until she goes into a deep sleep.  If we try to get her communicate she isn't able to do so. Her eyes dance all over the place or go crossed. She cant talk to us or even understand what we are asking her, She has short term memory loss, she is disoriented and confused and very tired and weak.  She will then sleep very hard for several hours to through the night and once awake the next day she will either one be normal just feel tired, weak and sore or two she is not herself and very slow to react and respond, off balanced, short term memory loss and it takes her about a week to fully recover from the episode.  She has had several of these to occur and we have had all kinds of test done from blood work, MRI, EEG, hospital stays, ER visits and we still have no answers and the neurologist has not treated her for seizures.  He actually told us he feels that its not epilepsy and that she may be suffering from a kind of mental disorder to have her evaluated by a mental counselor.   We followed through and done as he asked and that lead to another dead end.  The counselor tested our daughter and she found nothing mentally unstable or wrong with her.  She said she has very good coping skills and she found no signs of any mental illnesses or any reason for her to be having these kind of episodes.  The counselor wrote a letter to the neurologist asking that he dig deeper and reevaluate her from a medical point of view not a mental case. Has anyone else experienced this kind of episodes have a bunch of test ran and they all seem to be normal but your having these seizures?  Are they really seizures?  I know My Daughter and I know what I witness is REAL!! I just don't understand why she continues to suffer from them and the Doctors don't see any harm in them occurring or do anything to get them under control.  My fear of them happening in he sleep was confirmed just last night.  I finally witness her go into one while sleeping.  She was napping next to me on the couch and I felt her jerk.  This sudden Jerk happened about 3 more times so I started looking her over and I seen her eyes closed but they were dancing all over the place and her lids began to twitch.  Then the upper body and soon to follow lower body jerking began. This lasted for 8 min then it just stopped and she remained asleep.  I waited about 15 min then I tried to wake her up but she did not respond.  I waited another two min and tried again and this time she opened her eyes but she could not focus them at all. They were going crossed and she was not coherent and non responsive. She could not control her body movements, sit up or walk or talk.  She had tears running down her check and she would grunt if asked a question as if she could hear us but she just couldn't get her body to work and respond.  This lasted for about a hour and a half then she drifted back off to sleep and slept through the night and today she has done nothing but slept. She is off balance and dizzy along with being very weak and tired.  She is able to talk and communicate but doesn't unless we address her first.  You can see she just isn't feeling so swift and it kills me to watch her go through this and we cant seem to get any answers or treatment for her.  Has anyone taken all the test and they all appear normal but you still have these episodes occur? Has anyone been told its not epilepsy its a mental disorder or a trauma that your not aware of?  Looking for answers and any information anyone can share with Us...

 

Thanks

Comments

Re: Is there any hope for answers ??

Submitted by Masterjen on Mon, 2013-09-09 - 00:01

This is not the time to wonder if they are seizures or not, but to assume they are until proven otherwise.  There are many types of epilepsy where the seizures might be considered "unusual" or "atypical" to a doctor not fully trained in all seizure types. And I would say the majority of people who are diagnosed with epilepsy have many or all tests normal.  An Epileptologist (neuroologist who specializes in seizures) is the best person to make a diagnosis.  Has she been admitted to a seizure investigation unit - where they monitor her 24/7 via video and EEG for about a week?  This would allow her seizures/episodes to be recorded and observed at the same time EEG recordings are being made.  Depending on where in the brain some seizures are coming from  the EEG may still be normal, but experts will be able to observe her seizures and make interpretations.  There are some safer/less harmful anti-seizure medications out there, and an epileptologist sometimes puts someone on one of these medications to see if there is improvement.  

Just don't let the doctors say they are not seizures until you are also convinced, and/or other treatment is suggested that works to reduce these episodes.  Get a second opinion if necessary.

 

This is not the time to wonder if they are seizures or not, but to assume they are until proven otherwise.  There are many types of epilepsy where the seizures might be considered "unusual" or "atypical" to a doctor not fully trained in all seizure types. And I would say the majority of people who are diagnosed with epilepsy have many or all tests normal.  An Epileptologist (neuroologist who specializes in seizures) is the best person to make a diagnosis.  Has she been admitted to a seizure investigation unit - where they monitor her 24/7 via video and EEG for about a week?  This would allow her seizures/episodes to be recorded and observed at the same time EEG recordings are being made.  Depending on where in the brain some seizures are coming from  the EEG may still be normal, but experts will be able to observe her seizures and make interpretations.  There are some safer/less harmful anti-seizure medications out there, and an epileptologist sometimes puts someone on one of these medications to see if there is improvement.  

Just don't let the doctors say they are not seizures until you are also convinced, and/or other treatment is suggested that works to reduce these episodes.  Get a second opinion if necessary.

 

Re: Is there any hope for answers ??

Submitted by JessR96 on Mon, 2013-09-09 - 09:37

yes she has been hospitalized twice and had the EEG study done.  However the first one she never had a episode and the second time she had a very small episode and they pulled the plug and made their decisions based on that one small episode.  They said they did not see any epileptic waves.  This was done by a neurologist and he is the one that said he felt it could be a mental disorder but that she was not making herself do this on purpose.  He said that she was totally unaware of it happening and unconscious while it happens.  I have googled and searched the question... Can you still have epileptic seizures and the EEG not detect the activity?  and I cant find a direct answer.  From everything I have read and all the videos of different people in an active seizure it describes exactly what I witness happen to my daughter. Its so frustrating to always hit a dead end every single time you seek medical care.. the ER does nothing so we have quit taking her there.  The neurologist told us to continue to take her if the seizure last longer than 5 minutes but its pointless when they tell us they cant do anything for her but make sure her vitals are stable.  I can do that at home.  She is so tired of living this nightmare and she has lost so much due to it.  She cant live a normal life due to the episodes.  I am searching and seeking for answers .... 

yes she has been hospitalized twice and had the EEG study done.  However the first one she never had a episode and the second time she had a very small episode and they pulled the plug and made their decisions based on that one small episode.  They said they did not see any epileptic waves.  This was done by a neurologist and he is the one that said he felt it could be a mental disorder but that she was not making herself do this on purpose.  He said that she was totally unaware of it happening and unconscious while it happens.  I have googled and searched the question... Can you still have epileptic seizures and the EEG not detect the activity?  and I cant find a direct answer.  From everything I have read and all the videos of different people in an active seizure it describes exactly what I witness happen to my daughter. Its so frustrating to always hit a dead end every single time you seek medical care.. the ER does nothing so we have quit taking her there.  The neurologist told us to continue to take her if the seizure last longer than 5 minutes but its pointless when they tell us they cant do anything for her but make sure her vitals are stable.  I can do that at home.  She is so tired of living this nightmare and she has lost so much due to it.  She cant live a normal life due to the episodes.  I am searching and seeking for answers .... 

Re: any hope for answers?NormalEEG? Seizure Like Episodes Occur

Submitted by pgd on Mon, 2013-09-09 - 11:31
The idea of zoning out/lights on - no one is home - is associated with a number of different challenges including petit-absence epilepsy, Inattentive ADHD, central auditory processing disorder (CAPD/APD); brain concussions, head injuries, car concussions, rear-end car accidents, motorcycle accidents, sports concussions, brain injuries, (incomplete list), etc. You might take a look at brainline (Google) and fairly new and unheard of terms like cerebellar cognitive affective syndrome and physiatrist. Truth is stranger than fiction. For those who don't believe that, there are books about the brain such as Nerves in Collision by Walter C. Alvarez, M.D. and the How To Cure Hyperactivity book (1981) about Inattentive ADHD, auditory processing, dyspraxia, and nutrition by C. Thomas Wild, introduction by Anita Uhl Brothers, M.D. There actually is a term called pseudo-seizures which means that there are epilepsy-like events which are not deemed to be classic epilepsy but something else (like the terms mentioned above or other terms like spasms, dyskinesias, etc.). It's possible to gain partial insights into aspects of what your topic is about by looking at some of the above resources. Frankly, it seems to me that you haven't met the right doctor yet because the right doctor can give you a little more help than what you've gotten so far (my view). Be patient and politely persistent. Sometimes it takes time to slowly figure out what's going on. Good luck.

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