Diagnosis getting confusing

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Hi! This is my first time to use the forum though I have read alot here! We have a beautiful 19 year old daughter who had a witnessed "grand mal seizure" a year ago at work that sent her to the ER. The ER could not do an EEG so one was done three days later, outpatient. It showed spikes and slow waves that indicated a seizure disorder. Her history included 8 prior years of bizarre symptoms with altered levels of conciousness and in the last two years escalated to episodes of unconciousness and near unconciousness. She received a diagnosis of syncope and was put on treatment for that, this did not help the symptoms much and she did eventually have a grandmal seizure while having this treatment. Topamax was started after the EEG showing spikes and slow waves and miracuously ALL the mysterious symptoms have vanished for the entire past year. We felt we had found the true cause of her poor health after 8 years, then the Topamax and later added Lamictal was causing sedation and a "drugged" affect so she has been sent to the epileptologist at a level four center. The new neuro. feels they are not true "epileptic" seizures and then another neuro. saw her during a video monitoring stay and virtually had about nothing to say. Now, we have been told it is syncope again ( positive tilt table) and meds have been reduced so I am holding my breath that there is not another seizure soon at work. Her final night in the Monitoring unit she was very sick and had an unbearable headache, the EEG tech said she saw spike activity but the next morning the Neuro denied this and said nothing happened-though she had not reviewed the tapes yet from the last night she said. We were sent home feeling defeated because nothing was captured. We were told to follow up with Cardiology for the syncope and come back to the neuro in four monthes. Today the Psych. from the stay called the house and stated he felt the seizures were " stress seizures" which now is another new diagnosis on her record and adding to her confusing history. I was very upset. It seems no one really knows what to think. Three doctors have said "It is not unheard of to have more than one condition" but no one can give us ANY definitive answers. I am slowly seeing agitation and anxiety reoccuring as the meds were reduced ,her agitation and anxiety levels were greatly heightened the week before her witnessed grand mal last year so I am nervous about what could happen next. In my gut I feel like anti- seizure meds would not have been effective for a year if it was just syncope and or "stress seizures" Does anyone have children or maybe themselves who has had a LONG road to a proper diagnosis or had any of these other suggested diagnosis? At this point I do not know what to do or what to pursue other than to keep gathering information and relaying it to the other doctors involved...but some of them don't want to hear all the information we have to offer about her medical history. Repeatedly the unconcious episodes have been described as long with convulsing at the end and a very blue color to her face and a long recovery. We are told she had a "faint" It certainly does not look like a faint I ever saw. I feel like we are spinning our wheels trying to get her to a healthy basis and to have a proper treatment for a proper diagnosis. Any advice or similar experiences would be fantastic from anyone who would like to share! Thanks!

Comments

Re: Diagnosis getting confusing

Submitted by rikk on Tue, 2009-06-02 - 03:57

hi,

the best thought i have is that none of the doc's has any idea of what is going on. none can agree. the eeg at best is a reference point. all to often it is used to diagnose epilepsy. it is not a great tool for that. it is especially bad if there is not an agreed diagnosis when people are discharged. The best evidence is video. that is not that good. history that has been by people is the most valuable. For some unknown reason doctors have made a global decision. if it can be found on eeg, it is not epilepsy.

With reguard to your daughter. the anti seizure medications worked. that should give someone a clue. There are psyc. problems that respond to the same meds. The cardiac issue is questionable at best. it should be ruled out, but.. that is the end of that one. Keep a record of what is happening, write it down day and time. give it to the doc. only a copy, don't give the original. Be a very polite very knowledgable patient/parent, an be the biggest polite pain in the tush you can be. don't allow the docs to dictate what is going on,, when you as sure that your questions have not been answered. I am the one with seizures, i am, i do, and i don't give the docs an option other than to listen and to work with me. it is either that or refere me to another doc.

After forty years of fighting., tests. ,medications, they the wonders of modern medicine, were finally able to see what i had been saying. I just enjoy the idea of after so long they had to eat their words. i made them admit they were wrong, after that, there has been not stupid questions, from doctors that have no idea what it is like to be treated in the manner they routinely treat their patients.

My advice, keep up the fight. find people that will listen and not depend so much at testing, and fight, document, and question. educate yourself and your daughter about what is going on. write down everything that you want to discuss and do not let your emotions get out of control. That is a weapon that is use against people. Written down they have no choice but to at the least put it in your record.

probably not alot of help, but i hope some. rikk

hi, the best thought i have is that none of the doc's has any idea of what is going on.  none can agree.  the eeg at best is a reference point.  all to often it is used to diagnose epilepsy. it is not a great tool for that. it is especially bad if there is not an agreed diagnosis when people are discharged.  The best evidence is video.  that is not that good.  history that has been by people is the most valuable.  For some unknown reason doctors have made a global decision.  if it can be found on eeg, it is not epilepsy. With reguard to your daughter.  the anti seizure medications worked.  that should give someone a clue. There are psyc. problems that respond to the same meds.  The cardiac issue is questionable at best.  it should be ruled out, but.. that is the end of that one.   Keep a record of what is happening, write it down day and time.  give it to the doc.  only a copy, don't give the original.   Be a very polite very knowledgable patient/parent, an be the biggest polite pain in the tush you can be.  don't allow the docs to dictate what is going on,, when you as sure that your questions have not been answered.  I am the one with seizures, i am, i do, and i don't give the docs an option other than to listen and to work with me.  it is either that or refere me to another doc. After forty years of fighting., tests. ,medications, they the wonders of modern medicine, were finally able to see what i had been saying.   I just enjoy the idea of after so long they had to eat their words.  i made them admit they were wrong, after that, there has been not stupid questions, from doctors that have no idea what it is like to be treated in the manner they routinely treat their patients. My advice,  keep up the fight.  find people that will listen and not depend so much at testing, and fight, document, and question.  educate yourself and your daughter about what is going on.  write down everything that you want to discuss and do not let your emotions get out of control.  That is a weapon that is use against people.  Written down they have no choice but to at the least put it in your record. probably not alot of help, but i hope some.   rikk

hi,

the best thought i have is that none of the doc's has any idea of what is going on. none can agree. the eeg at best is a reference point. all to often it is used to diagnose epilepsy. it is not a great tool for that. it is especially bad if there is not an agreed diagnosis when people are discharged. The best evidence is video. that is not that good. history that has been by people is the most valuable. For some unknown reason doctors have made a global decision. if it can be found on eeg, it is not epilepsy.

With reguard to your daughter. the anti seizure medications worked. that should give someone a clue. There are psyc. problems that respond to the same meds. The cardiac issue is questionable at best. it should be ruled out, but.. that is the end of that one. Keep a record of what is happening, write it down day and time. give it to the doc. only a copy, don't give the original. Be a very polite very knowledgable patient/parent, an be the biggest polite pain in the tush you can be. don't allow the docs to dictate what is going on,, when you as sure that your questions have not been answered. I am the one with seizures, i am, i do, and i don't give the docs an option other than to listen and to work with me. it is either that or refere me to another doc.

After forty years of fighting., tests. ,medications, they the wonders of modern medicine, were finally able to see what i had been saying. I just enjoy the idea of after so long they had to eat their words. i made them admit they were wrong, after that, there has been not stupid questions, from doctors that have no idea what it is like to be treated in the manner they routinely treat their patients.

My advice, keep up the fight. find people that will listen and not depend so much at testing, and fight, document, and question. educate yourself and your daughter about what is going on. write down everything that you want to discuss and do not let your emotions get out of control. That is a weapon that is use against people. Written down they have no choice but to at the least put it in your record.

probably not alot of help, but i hope some. rikk

Re: Diagnosis getting confusing

Submitted by pewter on Tue, 2009-06-02 - 11:37

I feel for you and your daughter.

I started having "spells" as I'll call them for now soon after a car wreck. I was told, while in the hospital for 21 days afterwards (bad wreck), that upon further examination of a CT scan of my head made while in the ER on the 1st day - the docs had found I had suffered a Closed Head Injury and the doc telling me this went on to tell me what that was and how it happened, any possible after affects, etc...

See, while in ICU within the first 24 hours I complained of the absolute worse headache I'd ever had. I was sick to my stomach and my eyesight was blurry. As the time passed that day, the headache worsened and I literally cried and screamed at the nurses and residents that evening because they wouldn't give me anything for it. The resident (it is a teaching hospital) told me it was likely caffeine withdrawal and left me. I drifted into unconsciousness and didn't wake till sometime the next morning.

I told my Neuro all this not even a year later when I started having "spells" where I smelled a certain smell, then found myself looking up at the ceiling, confused & dazed, muscles weakened and hurting all over, fatigued and exhausted wanting to sleep for hours. No where in my medical record for the time of the accident and my 21 day stay is it documented that I was found with a CHI, no where nor would she re examine the CT or MRI film. She went by the dictated reports because my record was 3 charts thick.

My MRI in June 2008 showed an abnormality in the Hippocampi region and she said in July of 2008 when she first met me that based on my symptomatology and the MRI she was diagnosing me with Partial Complex Seizure Disorder. I questioned her as to whether she truly was diagnosing me? She said yes.

That changed in September 2008 when I developed an intolerance for a higher dose of Topamax and because I had an intolerance and sensitivity to Lamcital, Neurontin, and Depakote from where I've previously been treated for Major Depression and suspected Bipolar... she said I wasn't responding to meds properly and the EEGs were all normal (had 1 at that time) and therefore... it was all pseudoseizures. It's been pseudoseizures ever since with this woman though I've had yet another strange MRI and 2 normal EEGs since.

I even had a EEG technician during my sleep deprived EEG get all hyped up when I told her I was driving to work. She wouldn't say what she was seeing but got very adamant that I needn't be driving and I needed to find a job much closer to home and wasn't I taking meds for seizures? She noted that my brain waves were showing me to be drowsy and sleepy yet I couldn't actually sleep... Neuro said the EEG showed nothing and that I was wide awake during the whole procedure.

Yet, oddly the low dose of Topamax is helping me with my seizure symptoms and in fact when I weaned off of it myself this past March & April due to cost and the Neuro insisting it was psychological... a month after I started weaning down and had got to every 2 days I'd take the med... I had 2 seizures back to back. I'm back trying to titrate myself back up but I know the Topamax is helping me - the Neuro in February didn't believe me and literally shook her head and said she didn't believe me.

Point of this long rambling story: If your daughter was showing improvement while taking the AEDs then the AEDs were apparently helping her. If she is showing a decline and/or increase in symptoms now that she is being weaned off - then there is a issue. If you have to go to yet another doctor - go. Your daughter needs someone to believe her and help her. Psychological stress can trigger seizures that are epileptic in nature and EEGs aren't accurate unless you are truly having one while it's going on or you have them daily or every 2-3 days - the Neuro and a higher up Neuro in the department did acknowledge this much to me.

I'm not returning to my Neuro. I have no money and no insurance and I've been refused permission to switch to another provider within that same department. So... I'll have to see if my GP can help me till I can fund myself the ability to see another Neurologist. If you are able to have your daughter checked out by another - that's something you might want to look into.

I feel for you and your daughter. I started having "spells" as I'll call them for now soon after a car wreck.  I was told, while in the hospital for 21 days afterwards (bad wreck), that upon further examination of a CT scan of my head made while in the ER on the 1st day - the docs had found I had suffered a Closed Head Injury and the doc telling me this went on to tell me what that was and how it happened, any possible after affects, etc... See, while in ICU within the first 24 hours I complained of the absolute worse headache I'd ever had.  I was sick to my stomach and my eyesight was blurry.  As the time passed that day, the headache worsened and I literally cried and screamed at the nurses and residents that evening because they wouldn't give me anything for it.  The resident (it is a teaching hospital) told me it was likely caffeine withdrawal and left me.  I drifted into unconsciousness and didn't wake till sometime the next morning. I told my Neuro all this not even a year later when I started having "spells" where I smelled a certain smell, then found myself looking up at the ceiling, confused & dazed, muscles weakened and hurting all over, fatigued and exhausted wanting to sleep for hours.  No where in my medical record for the time of the accident and my 21 day stay is it documented that I was found with a CHI, no where nor would she re examine the CT or MRI film.  She went by the dictated reports because my record was 3 charts thick. My MRI in June 2008 showed an abnormality in the Hippocampi region and she said in July of 2008 when she first met me that based on my symptomatology and the MRI she was diagnosing me with Partial Complex Seizure Disorder.  I questioned her as to whether she truly was diagnosing me?  She said yes. That changed in September 2008 when I developed an intolerance for a higher dose of Topamax and because I had an intolerance and sensitivity to Lamcital, Neurontin, and Depakote from where I've previously been treated for Major Depression and suspected Bipolar... she said I wasn't responding to meds properly and the EEGs were all normal (had 1 at that time) and therefore... it was all pseudoseizures.  It's been pseudoseizures ever since with this woman though I've had yet another strange MRI and 2 normal EEGs since. I even had a EEG technician during my sleep deprived EEG get all hyped up when I told her I was driving to work.  She wouldn't say what she was seeing but got very adamant that I needn't be driving and I needed to find a job much closer to home and wasn't I taking meds for seizures?  She noted that my brain waves were showing me to be drowsy and sleepy yet I couldn't actually sleep... Neuro said the EEG showed nothing and that I was wide awake during the whole procedure. Yet, oddly the low dose of Topamax is helping me with my seizure symptoms and in fact when I weaned off of it myself this past March & April due to cost and the Neuro insisting it was psychological... a month after I started weaning down and had got to every 2 days I'd take the med... I had 2 seizures back to back.  I'm back trying to titrate myself back up but I know the Topamax is helping me - the Neuro in February didn't believe me and literally shook her head and said she didn't believe me. Point of this long rambling story: If your daughter was showing improvement while taking the AEDs then the AEDs were apparently helping her.  If she is showing a decline and/or increase in symptoms now that she is being weaned off - then there is a issue.  If you have to go to yet another doctor - go.  Your daughter needs someone to believe her and help her.  Psychological stress can trigger seizures that are epileptic in nature and EEGs aren't accurate unless you are truly having one while it's going on or you have them daily or every 2-3 days - the Neuro and a higher up Neuro in the department did acknowledge this much to me. I'm not returning to my Neuro.  I have no money and no insurance and I've been refused permission to switch to another provider within that same department.  So... I'll have to see if my GP can help me till I can fund myself the ability to see another Neurologist.  If you are able to have your daughter checked out by another - that's something you might want to look into.  