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Undiagnosed idiopathic non-epileptic seizures
by skyehi714, Jan 11, 2009 08:45PM
Hello,
A friend of mine (17 years old female, Caucasian/Hispanic) has been suffering from what APPEAR to be non-epileptic tonic-clonic seizures since May of 2008. These episodes have not been witnessed by medical professionals; therefore, I am calling them seizures because that's what they present as (severe muscle convulsions, loss of memory of episode, 'glossy', absent look beforehand). They began after an injury to the major muscles of the right side of the back, I believe called the "trapezius and latissimus dorsi" muscles. They continued for a week after onset, occuring on average one a day for up to an hour, until she was put on Valium and Darvoset (I believe another form of Vicodin). They then stopped until she once again agitated those muscles severely enough to cause another round of seizures, which occured once a day for three days or more. They slowly tapered off and "remissed," so to say, until a month later. At that point, she had been in physical therapy for a few weeks to try and relieve the intense muscle pain she had been experiencing in her back, shoulders, and especially neck, which had been occurring since the start of a sports season, but had increased dramatically since May. Then, upon receiving the first "deep-tissue" massage, she once again had a seizure, this time only one, if my memory serves me correctly. They abated again until she stopped physical therapy in August, and then almost immediately after the cessation of physical therapy, they came back tenfold. I witnessed only one of these, and it was the worst I had ever seen. For about 20 minutes before the seizure started, she had a very glassy look in her eyes, like she wasn't present at all... then what we called the "twitching" started, just a few muscle spasms, which then escalated into very severe convulsions... it looked as though her body was folding in on itself. She had difficulty breathing, and got "stuck" in the position she was laying in... her body seemed to freeze completely. This lasted for probably 20 minutes, I can't be sure. Afterwards, she was, of course, very tired, and the next day she had very little memory of the event, just as she had of the other "seizures." For the next three days she had a seizure a night, until they stopped. But during and after this, she was very sick, very nauseous and dizzy and very, very, very sore. She had another seizure in September. She was then given a CT scan, which was normal, as well as an MRI with contrast, which was also normal. She had a 4-hour EEG, which showed nothing, and a round of x-rays were taken of her neck, which were also normal. She has since been on an anti-seizure medication called Keppra, which has stopped the seizures for almost six months. She has been seizure-free since September.
My question to anyone here is... has anyone else experienced something like this? Any ideas? Family has history of brain aneurysms, hypoglycemia, heart problems, breast cancer... and other things that I am not aware of. I want to know if there's anything anyone has to say about this, because, while the anti-seizure meds are working, I just can't seem to let this go. Because the doctors never saw any of this (she was VERY secretive and did not want anyone to know about it), they did this testing and then just said to wait and see. Should I still be concerned even though the anti-seizure meds are working? I feel like this could be something that could recur once she is weaned off the meds (which is predicted at March) and I just... want answers. It was very scary to witness and I just want her to be well.
Symptoms List:
-severe muscle convulsions, shaking, and/or pain or tightness in the upper, middle, lower back, chest and throat, abs and surrounding muscles, sides, shoulders, neck, arms, and now, legs
-severe headaches
-fever
-tingling/numbness in foot (at one point)
-getting "stuck"
-difficulty breathing
-fatigue
-nausea
-loss of control over speech (occured once after seizure... was trying to talk but I had NO idea what she was saying)
-dizziness/vertigo
-loss of concentration/focus (occured during/after seizure)
-emotional fluctuation (depression, anxiety, anger- switched quickly between the three)
-"heavy" feeling in limbs
Please note that most of these occured in the period after physical therapy, before she was put on Keppra. Right now, she is okay. She is in a lot of pain, but she has been seizure-free. I am just wondering if this should be taken more seriously than it has been by the doctors (general doctors) and the neurologist she's seen.
I'd really appreciate any help anyone has to offer. Thank you.
A friend of mine (17 years old female, Caucasian/Hispanic) has been suffering from what APPEAR to be non-epileptic tonic-clonic seizures since May of 2008. These episodes have not been witnessed by medical professionals; therefore, I am calling them seizures because that's what they present as (severe muscle convulsions, loss of memory of episode, 'glossy', absent look beforehand). They began after an injury to the major muscles of the right side of the back, I believe called the "trapezius and latissimus dorsi" muscles. They continued for a week after onset, occuring on average one a day for up to an hour, until she was put on Valium and Darvoset (I believe another form of Vicodin). They then stopped until she once again agitated those muscles severely enough to cause another round of seizures, which occured once a day for three days or more. They slowly tapered off and "remissed," so to say, until a month later. At that point, she had been in physical therapy for a few weeks to try and relieve the intense muscle pain she had been experiencing in her back, shoulders, and especially neck, which had been occurring since the start of a sports season, but had increased dramatically since May. Then, upon receiving the first "deep-tissue" massage, she once again had a seizure, this time only one, if my memory serves me correctly. They abated again until she stopped physical therapy in August, and then almost immediately after the cessation of physical therapy, they came back tenfold. I witnessed only one of these, and it was the worst I had ever seen. For about 20 minutes before the seizure started, she had a very glassy look in her eyes, like she wasn't present at all... then what we called the "twitching" started, just a few muscle spasms, which then escalated into very severe convulsions... it looked as though her body was folding in on itself. She had difficulty breathing, and got "stuck" in the position she was laying in... her body seemed to freeze completely. This lasted for probably 20 minutes, I can't be sure. Afterwards, she was, of course, very tired, and the next day she had very little memory of the event, just as she had of the other "seizures." For the next three days she had a seizure a night, until they stopped. But during and after this, she was very sick, very nauseous and dizzy and very, very, very sore. She had another seizure in September. She was then given a CT scan, which was normal, as well as an MRI with contrast, which was also normal. She had a 4-hour EEG, which showed nothing, and a round of x-rays were taken of her neck, which were also normal. She has since been on an anti-seizure medication called Keppra, which has stopped the seizures for almost six months. She has been seizure-free since September.
My question to anyone here is... has anyone else experienced something like this? Any ideas? Family has history of brain aneurysms, hypoglycemia, heart problems, breast cancer... and other things that I am not aware of. I want to know if there's anything anyone has to say about this, because, while the anti-seizure meds are working, I just can't seem to let this go. Because the doctors never saw any of this (she was VERY secretive and did not want anyone to know about it), they did this testing and then just said to wait and see. Should I still be concerned even though the anti-seizure meds are working? I feel like this could be something that could recur once she is weaned off the meds (which is predicted at March) and I just... want answers. It was very scary to witness and I just want her to be well.
Symptoms List:
-severe muscle convulsions, shaking, and/or pain or tightness in the upper, middle, lower back, chest and throat, abs and surrounding muscles, sides, shoulders, neck, arms, and now, legs
-severe headaches
-fever
-tingling/numbness in foot (at one point)
-getting "stuck"
-difficulty breathing
-fatigue
-nausea
-loss of control over speech (occured once after seizure... was trying to talk but I had NO idea what she was saying)
-dizziness/vertigo
-loss of concentration/focus (occured during/after seizure)
-emotional fluctuation (depression, anxiety, anger- switched quickly between the three)
-"heavy" feeling in limbs
Please note that most of these occured in the period after physical therapy, before she was put on Keppra. Right now, she is okay. She is in a lot of pain, but she has been seizure-free. I am just wondering if this should be taken more seriously than it has been by the doctors (general doctors) and the neurologist she's seen.
I'd really appreciate any help anyone has to offer. Thank you.
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Val
Thanks for your response!