I came to Phoenix Rising because I typed the following search into Google:
abnormal eeg and "functional neurological disorder"
I found the link entitled "You think ME is bad - try having a psychogenic movement disorder"
Intrigued I clicked and read the first and following entries to a thread that impressed me so much I wanted to be part of this very intelligent and insightful forum.
Actually, the first thing I thought was 'oh my god, if people with ME feel sorry for people with my diagnosis, then I really am bummed!' But I appreciated the gesture. It was a rare validation of a quiet struggle by a group of unhappy souls who really need some help - and perhaps a kick in the pants. We live with uncertainty and are locked in a dance with the psychogenic fallacy. What a beauty! No wonder I'm so dizzy.
I made myself known to the forum as one such subject of the discussion and we go from there.
Two weeks ago I had an EEG. That was because I had one of my "pseudoseizures" in front of my psychologist. Having never had an EEG I was still considered to be having fake shakes of no real importance. Such are the words whispered over my head while I am vaguing out and unable to speak intelligibly - while my eyes are fixed and my face has gone alarmingly red and puffy, my heart is racing and one corner of my mouth drooping down - you know... all that fake stuff. I don't know whether she passed on the info to the neurologist because I said something about wanting an EEG or whether the neuro thought that was weird enough to warrant a look. Whatever reason it was, I received an unexpected phone call asking me to book in.
During the hyperventilation part of the EEG I had another seizure. The technician wouldn't tell me anything about the readings because of course I couldn't possibly understand the complexity of all those squiggly lines. No I had to wait for the more elevated mind of a young, rugby playing lad to read it and interpret it in a much more sensible way than I ever could. They are the keepers of the knowledge, after all, doncha know.
I went to see my psychologist last week and was told the EEG was abnormal. It wasn't enough to be epileptic, apparently, but it was enough to show something. What that is and what it means for my treatment or dx I will find out - I hope - tomorrow when I go for my scheduled neurology appointment. Again no one could tell me what exactly it was because it's far too sacred.
I'm feeling ridiculously agitated about this visit tomorrow. I'm actually a bit grouchy about having to go at all.
I hate having FND dx. It is boring, tedious and not at all useful to me. It helps me not a jot, just loads more stress and drains my depleted energy stores with constant exhausting day trips.
I have to admit to entertaining the dx when I am engaged with it in appointments. It's just plain easier to let them have the reins. I keep hoping one day I might display something that demonstrates a symptom that diverges from the known ones. But FND is so all- inclusive it can't be disproven by any symptom. It's sticky. LIke an old licked toffee apple you picked off the ground because it still looked yummy then realised it isn't an appropriate thing to be seen holding, but now you can't get rid of it cos it's all over you.
I have become troubled from what I have read on this site - intelligent and thought provoking insights from the perspective of those ME/CFS people who have gone before and KNOW about what one must do to gird one's loins against psychobabble. I am upset by the overwhelming volume of these medico voices joined as one in smug satisfaction that they know the truth but are condescending to allow me my little dalliance with thinking I know I'm not hysterical - it's all part of being hysterical. I am challenged by the passion and courage of the people posting and I am ashamed of my passivity towards my dx. My futile dance is starting to become repugnant to me. The music sucks, the perfume stinks. The steps are all wrong. I'm starting to feel like a fraud unto myself (or is it a Freud unto myself). Either way, I am not maintaining any level of integrity by pretending to be okay with it.
However, i have told myself that should my abnormal EEG be passed off as just another weird symptom, I shall dump the lot of them. I may be bowing out of the next sticky dance...
abnormal eeg and "functional neurological disorder"
I found the link entitled "You think ME is bad - try having a psychogenic movement disorder"
Intrigued I clicked and read the first and following entries to a thread that impressed me so much I wanted to be part of this very intelligent and insightful forum.
Actually, the first thing I thought was 'oh my god, if people with ME feel sorry for people with my diagnosis, then I really am bummed!' But I appreciated the gesture. It was a rare validation of a quiet struggle by a group of unhappy souls who really need some help - and perhaps a kick in the pants. We live with uncertainty and are locked in a dance with the psychogenic fallacy. What a beauty! No wonder I'm so dizzy.
I made myself known to the forum as one such subject of the discussion and we go from there.
Two weeks ago I had an EEG. That was because I had one of my "pseudoseizures" in front of my psychologist. Having never had an EEG I was still considered to be having fake shakes of no real importance. Such are the words whispered over my head while I am vaguing out and unable to speak intelligibly - while my eyes are fixed and my face has gone alarmingly red and puffy, my heart is racing and one corner of my mouth drooping down - you know... all that fake stuff. I don't know whether she passed on the info to the neurologist because I said something about wanting an EEG or whether the neuro thought that was weird enough to warrant a look. Whatever reason it was, I received an unexpected phone call asking me to book in.
During the hyperventilation part of the EEG I had another seizure. The technician wouldn't tell me anything about the readings because of course I couldn't possibly understand the complexity of all those squiggly lines. No I had to wait for the more elevated mind of a young, rugby playing lad to read it and interpret it in a much more sensible way than I ever could. They are the keepers of the knowledge, after all, doncha know.
I went to see my psychologist last week and was told the EEG was abnormal. It wasn't enough to be epileptic, apparently, but it was enough to show something. What that is and what it means for my treatment or dx I will find out - I hope - tomorrow when I go for my scheduled neurology appointment. Again no one could tell me what exactly it was because it's far too sacred.
I'm feeling ridiculously agitated about this visit tomorrow. I'm actually a bit grouchy about having to go at all.
I hate having FND dx. It is boring, tedious and not at all useful to me. It helps me not a jot, just loads more stress and drains my depleted energy stores with constant exhausting day trips.
I have to admit to entertaining the dx when I am engaged with it in appointments. It's just plain easier to let them have the reins. I keep hoping one day I might display something that demonstrates a symptom that diverges from the known ones. But FND is so all- inclusive it can't be disproven by any symptom. It's sticky. LIke an old licked toffee apple you picked off the ground because it still looked yummy then realised it isn't an appropriate thing to be seen holding, but now you can't get rid of it cos it's all over you.
I have become troubled from what I have read on this site - intelligent and thought provoking insights from the perspective of those ME/CFS people who have gone before and KNOW about what one must do to gird one's loins against psychobabble. I am upset by the overwhelming volume of these medico voices joined as one in smug satisfaction that they know the truth but are condescending to allow me my little dalliance with thinking I know I'm not hysterical - it's all part of being hysterical. I am challenged by the passion and courage of the people posting and I am ashamed of my passivity towards my dx. My futile dance is starting to become repugnant to me. The music sucks, the perfume stinks. The steps are all wrong. I'm starting to feel like a fraud unto myself (or is it a Freud unto myself). Either way, I am not maintaining any level of integrity by pretending to be okay with it.
However, i have told myself that should my abnormal EEG be passed off as just another weird symptom, I shall dump the lot of them. I may be bowing out of the next sticky dance...