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Old 06-30-2014, 11:15 AM #1
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Default Going to an Epilepsy Center

Hi all,

Just got the call I've been waiting for from my Neuropsychologist: going to the Epilepsy center on July 10th to get an actual diagnosis for my seizure-like activities. (YEAH!!)

I will keep you updated on the findings. I know there are others out there experiencing these, and I hope to find some answers and maybe help you all out with your situations, too. I know how frustrating it is to experience something that no one has adequate answers for. I hope I find the right answer and stop these things from happening.

Hang in there. M-i-m
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Old 06-30-2014, 12:16 PM #2
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Originally Posted by music-in-me View Post
Hi all,

Just got the call I've been waiting for from my Neuropsychologist: going to the Epilepsy center on July 10th to get an actual diagnosis for my seizure-like activities. (YEAH!!)

I will keep you updated on the findings. I know there are others out there experiencing these, and I hope to find some answers and maybe help you all out with your situations, too. I know how frustrating it is to experience something that no one has adequate answers for. I hope I find the right answer and stop these things from happening.

Hang in there. M-i-m
Finally, some good news. I hope you get some answers. Keep us posted.
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Old 06-30-2014, 07:15 PM #3
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YAY!! Omg, I am so happy for you, at least something is being done and if anyone is going to figure out if it's epilepsy it's the epilepsy center!! they are known to be top notch.

Is a Neuropsychologist the same/similar to a Neurologist? I see an Neurologist next month.

How are you doing now? any more spells? mine are still happening, over the weekend I was sitting down and suddenly closed my eyes, head fell forward and almost fell asleep, felt like a dream and I wanted to shout out that I couldn't speak...then I opened my eyes and it felt like a fixed stare, have you ever experienced this?

Don't mean to hijack your thread but this is scary isn't it and just wondering if you've had that.

So pleased for you that you have that appt and not too far off now

I am intrigued as to what they will say. Look after yourself.
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Old 06-30-2014, 07:45 PM #4
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Hi Sitke,

The differences between a Neurologist and a Neuropsychologist are a Neurologist is usually a medical doctor or osteopathic doctor who specializes in disorders of the nervous system, including the brain, and a Neuropsychologist is usually a PhD (doctorate degree) who is a psychologist who specializes in brain behavior and functions.

My Neuropsychologist gave me a specialized test which showed the specific areas of my problems after the injury, like slow processing and graphomotor ataxia. My Neurologist diagnosed PCS and ordered EEG's.

I am so sorry to hear about your episode over the weekend. I haven't experienced anything like what you described, but it sounds scary. I do still experience these episodes, but they don not seem as severe as the ones I had during Neuro Rehab.

I will update you on my status. It does not matter what they are coming from ( brain or psychogenic or other) just so long as they can get them to stop. I am just as intrigued as you. Please get some rest.

Take care, M-i-m
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Old 06-30-2014, 09:23 PM #5
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I wanted to shout out that I couldn't speak...then I opened my eyes and it felt like a fixed stare, have you ever experienced this?
I have had an experience where, I'm aware what is going on around me, but I can't speak or move. It only lasts a few moments.

I don't know what this is. It could just be that my brain has forgotten, at that instance, how to speak and move. I have moments, all the time, when my brain seems to get stuck and I just can't do something, like zip my coat or button my shirt or lift my leg up a step. Sometimes I seem to forget how to swallow or even breath.

When it happens, my neuro-psychologist told me to kick start my brain by changing my circumstances. For example, switch to my non-dominant hand to complete a task. That seems to work.

It is so weird.
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Old 07-01-2014, 07:11 PM #6
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Thanks for the info about the Neuropsychologist, all very interesting really but just wish you weren't having problems in the first place.

I was diagnosed with severe concussion then PCS...enough now though, can you just all stop..lol (I try to find humor in there somewhere but it's hard at times

Hockey: I'm the same way, I am aware of what's happening most of the time but it feels like I can't speak and when they're happening I don't move, seem to stare at one thing until it all passes and it only lasts...it changes, but anywhere from 30 secs to a few mins. Definitely the brain is not working properly then.

Had an MRI and MRA which showed lesions on the frontal lobe, at least 7 of them, you go can nuts wondering what's happening, I think we all just want answers.

Anyhoo...I'm rambling on, M-i-m, please let us know how you're doing and how your visit goes...take care.
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Old 07-10-2014, 05:21 PM #7
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Hi everyone,

Just got back from the Epilepsy Center. After a long interview with me and my husband, a review of my medical records, and a brief physical exam, the Epileptologist is going to have me do a 5 to 6 day EEG with video monitoring in the epilepsy hospital there at the end of the month.

I have never done this type before, and I can only hope and pray that they are able to catch one of my episodes on this to finally get a diagnosis and treatment. It has been a long time since these started, and I feel the most confident that this Neurologist will finally provide me a diagnosis. I know, one more Neurologist!!(LOL!!) He'll be the fourth one I have seen since the injury. But this is his specialty, so I hope I won't be left to feel confused like I had after the previous EEG studies.

I will keep you posted on my results. Hang in there, M-i-m
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Old 08-02-2014, 04:50 PM #8
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Hi again,

Just finished 5 days at the Cleveland Clinic Epilepsy Center. I have been diagnosed with non-epileptic seizures. I am grateful to finally have the answer. I experienced one episode on Thursday night after sleep deprivation. The nurses and doctors were all great. I was told no abnormal electrical brain wave activity recorded, but they saw the effect on me physically.

I did not know what to make of this diagnosis at first. But I spoke to a social worker and a psychiatrist before my discharge today. They reassured me I was not "faking" these, and that many people once thought to have epilepsy turn out to have this type of seizure instead, confirmed by the ineffective use of seizure meds to help them.

I once thought after reading many of your posts I was lucky to have missed the depression and anxiety issues that often accompany brain injuries. But I guess I manifest my psychological injury by having these spells/ seizures instead. It makes sense, I guess, as many of you who experience depression or anxiety or both did not choose to be burdened with these issues as a result of your injuries, just as I did not choose to have these happen to me.

I was told that deep trauma, great loss, sudden change or built up stress can be the root of the cause of these seizures. I can probably check all of the above since my injury. I will be going to a psychiatrist or psychologist who deals with this kind of condition. There seems to be a 40% to 70% success rate at stopping these. I am hopeful.

I also hope that all of you still experiencing seizure-like activity will get thoroughly checked out, so you can get the answers you need to move forward, too.

Thanks for letting me bend your ears. Take care, M-im
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Old 08-02-2014, 07:16 PM #9
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Hey MIM, so glad you got some answers. I was wondering what are your symptoms specifically? or please lead me to the post where I can read about them. I get shaky feelings(like my inside is having a seizure, my head wants to shake, but it's all just a feeing). also I have involuntary muscle contractions that get worse with psychological stimuli.

Stike, I used to get the heavy feeling in my head. Like my head would actually fall onto one side because that side gets(feels) so heavy. Sometimes my head would just move about on its own as the weight shifts around in my head. I was so scared, but no doctor paid much attention to it. Now it's gone though(fingers crossed). So hopefully yours will resolve on its own as well.


Quote:
Originally Posted by music-in-me View Post
Hi again,

Just finished 5 days at the Cleveland Clinic Epilepsy Center. I have been diagnosed with non-epileptic seizures. I am grateful to finally have the answer. I experienced one episode on Thursday night after sleep deprivation. The nurses and doctors were all great. I was told no abnormal electrical brain wave activity recorded, but they saw the effect on me physically.

I did not know what to make of this diagnosis at first. But I spoke to a social worker and a psychiatrist before my discharge today. They reassured me I was not "faking" these, and that many people once thought to have epilepsy turn out to have this type of seizure instead, confirmed by the ineffective use of seizure meds to help them.

I once thought after reading many of your posts I was lucky to have missed the depression and anxiety issues that often accompany brain injuries. But I guess I manifest my psychological injury by having these spells/ seizures instead. It makes sense, I guess, as many of you who experience depression or anxiety or both did not choose to be burdened with these issues as a result of your injuries, just as I did not choose to have these happen to me.

I was told that deep trauma, great loss, sudden change or built up stress can be the root of the cause of these seizures. I can probably check all of the above since my injury. I will be going to a psychiatrist or psychologist who deals with this kind of condition. There seems to be a 40% to 70% success rate at stopping these. I am hopeful.

I also hope that all of you still experiencing seizure-like activity will get thoroughly checked out, so you can get the answers you need to move forward, too.

Thanks for letting me bend your ears. Take care, M-im
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Old 08-02-2014, 07:34 PM #10
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Will, the neck thing could be related to having to strengthen the muscles my neck.
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