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so I went to the new Neuro (upsetting)
patnjess7 posted:
I'm very upset. So we went threw the exam and everything, I had a hard time talking I was so nervous and shaking. Anyway he told me he wanted to do a video EEG right away that he had "a feeling", and to follow up with my regualr dr. He said, "we'll see if you even need it it." to back up, he does agree most of my other symptoms were probably from topamax.
so they hooked me up. and they had me do the heavy breathing which almost caused me to pass out, then they started the lights. I guess soon after I went into a seizure. Now my friend, who is an RN was there and crying she said it looked awful.
after it was done the dr came in and told me I have a mental condition. That my seizures are not real, and I need a psyciatrist. I can't even fathom it. I dont' understand. I'm so upset. I don't know. So that is where we are. He told me had a feeling about me cause I look like such an anxious person.
so that's where I am. He told me to stop the antiseizure drugs, and I need therapy, and possible antianxiety, antidepressents. Well now I'm really depressed. I'm so sad. I don't understand.
so they hooked me up. and they had me do the heavy breathing which almost caused me to pass out, then they started the lights. I guess soon after I went into a seizure. Now my friend, who is an RN was there and crying she said it looked awful.
after it was done the dr came in and told me I have a mental condition. That my seizures are not real, and I need a psyciatrist. I can't even fathom it. I dont' understand. I'm so upset. I don't know. So that is where we are. He told me had a feeling about me cause I look like such an anxious person.
so that's where I am. He told me to stop the antiseizure drugs, and I need therapy, and possible antianxiety, antidepressents. Well now I'm really depressed. I'm so sad. I don't understand.
6 Replies |Watch This Discussion | Report This| Share this:so I went to the new Neuro (upsetting)I'm very upset. So we went threw the exam and everything, I had a hard time talking I was so nervous and shaking. Anyway he told me he wanted to do a video EEG right away that he had "a feeling", and to follow up with my regualr dr. He said, "we'll see if you even need it it." to back up, he does agree most of my other symptoms were probably from topamax.<br /> <br />so they hooked me up. and they had me do the heavy breathing which almost caused me to pass out, then they started the lights. I guess soon after I went into a seizure. Now my friend, who is an RN was there and crying she said it looked awful.<br /> <br />after it was done the dr came in and told me I have a mental condition. That my seizures are not real, and I need a psyciatrist. I can't even fathom it. I dont' understand. I'm so upset. I don't know. So that is where we are. He told me had a feeling about me cause I look like such an anxious person.<br /> <br />so that's where I am. He told me to stop the antiseizure drugs, and I need therapy, and possible antianxiety, antidepressents. Well now I'm really depressed. I'm so sad. I don't understand.
I understand how upset you are and how difficult it is to fathom everything you were told. I obviously did not review the EEG or the video, but am responding on the assumption that his diagnosis is correct. He basically told you that the events you were having were NOT epileptic in origin. This means that the behavioral events that you are having are not due to abnormal electrical activity in the brain, but rather are driven by emotional distress. In many ways, it is good news as you don't have epilepsy. The most common name for these events are "psychogenic non-epileptic seizures", and they are sometimes called "pseudo-seizures". These behavioral events resemble epileptic seizures (hence the original diagnosis) but arise from emotional issues not brain abnormalities. The events to you are as real as an epileptic seizure is to someone with epilepsy. It is important for you (and those around you) to realize that you are not doing it "on purpose" and you are not "faking it". In addition, it does not mean you are "crazy" or have a severe mental illness. The best way to look at it, is that this is your minds way of asking for help in dealing with some suppressed emotional issues. Psychogenic seizures are all to common so you are not alone. Many times the individuals with psychogenic seizures have a past history of physical or emotional trauma (rape, sexual abuse, emotional abuse). It's also important to realize that the emotional issues or stress that may be driving this problem need not be present right now, but frequently occurred in the distant past. If you don't feel comfortable with the diagnosis you certainly see a different neurologist or epileptologist for another opinion. If the diagnosis is correct, the goal then is to identify a good mental health professional who will work with you to get better. This may include medicine to treat anxiety and depression, but the treatment should also include counseling to help you deal with your past traumas. The good news here is that most people get better and gain control of the events through the mental health treatment.
Report This| Share this:so I went to the new Neuro (upsetting)I understand how upset you are and how difficult it is to fathom everything you were told. I obviously did not review the EEG or the video, but am responding on the assumption that his diagnosis is correct. He basically told you that the events you were having were NOT epileptic in origin. This means that the behavioral events that you are having are not due to abnormal electrical activity in the brain, but rather are driven by emotional distress. In many ways, it is good news as you don't have epilepsy. The most common name for these events are "psychogenic non-epileptic seizures", and they are sometimes called "pseudo-seizures". These behavioral events resemble epileptic seizures (hence the original diagnosis) but arise from emotional issues not brain abnormalities. The events to you are as real as an epileptic seizure is to someone with epilepsy. It is important for you (and those around you) to realize that you are not doing it "on purpose" and you are not "faking it". In addition, it does not mean you are "crazy" or have a severe mental illness. The best way to look at it, is that this is your minds way of asking for help in dealing with some suppressed emotional issues. Psychogenic seizures are all to common so you are not alone. Many times the individuals with psychogenic seizures have a past history of physical or emotional trauma (rape, sexual abuse, emotional abuse). It's also important to realize that the emotional issues or stress that may be driving this problem need not be present right now, but frequently occurred in the distant past. If you don't feel comfortable with the diagnosis you certainly see a different neurologist or epileptologist for another opinion. If the diagnosis is correct, the goal then is to identify a good mental health professional who will work with you to get better. This may include medicine to treat anxiety and depression, but the treatment should also include counseling to help you deal with your past traumas. The good news here is that most people get better and gain control of the events through the mental health treatment.
dancer86442 responded:
Hi Patnjess,
Phylis, (I hope) will send you a link to a discussion on coping-with-epilepsy.com, where they had a very interesting Topic on NEAD w/ lots of input.
But, I agree w/ the DR. If you don't think this neuro is rite, then try, try again.
NEAD, psuedo-seizures are very common, very real. And, yes, need to be treated, only in a different way.
Thing is you MITE have both. Just hasn't been determined by tests. So, find another neuro or search/try an Epileptologist (seizure specialist) Go ahead & follow thru w/ the shrink, though. It can't hurt.
Love Candi
Phylis, (I hope) will send you a link to a discussion on coping-with-epilepsy.com, where they had a very interesting Topic on NEAD w/ lots of input.
But, I agree w/ the DR. If you don't think this neuro is rite, then try, try again.
NEAD, psuedo-seizures are very common, very real. And, yes, need to be treated, only in a different way.
Thing is you MITE have both. Just hasn't been determined by tests. So, find another neuro or search/try an Epileptologist (seizure specialist) Go ahead & follow thru w/ the shrink, though. It can't hurt. Love Candi
Report This| Share this:so I went to the new Neuro (upsetting)Hi Patnjess, <br /><br />Phylis, (I hope) will send you a link to a discussion on coping-with-epilepsy.com, where they had a very interesting Topic on NEAD w/ lots of input. <br /><br />But, I agree w/ the DR. If you don't think this neuro is rite, then try, try again. <br /><br />NEAD, psuedo-seizures are very common, very real. And, yes, need to be treated, only in a different way. <img src="http://img.webmd.com/community/images/smile.gif" align="top" border="0"> Thing is you MITE have both. Just hasn't been determined by tests. So, find another neuro or search/try an Epileptologist (seizure specialist) Go ahead & follow thru w/ the shrink, though. It can't hurt. <img src="http://img.webmd.com/community/images/smile.gif" align="top" border="0"><br /><br />Love Candi
patnjess7 replied to dancer86442's response:
I don't want to try anymore tests. see when I was first diagnosed I didn;t believe I had epilepsy. and took my meds for months, then thought it was ridiculous and stopped, then this past couple weeks, I came to figure I guess they are right. Well Its too much. No more tests. I just want to dig a hole and go away. No more poking and dr's self esteem can't take much more.
Report This| Share this:so I went to the new Neuro (upsetting)I don't want to try anymore tests. see when I was first diagnosed I didn;t believe I had epilepsy. and took my meds for months, then thought it was ridiculous and stopped, then this past couple weeks, I came to figure I guess they are right. Well Its too much. No more tests. I just want to dig a hole and go away. No more poking and dr's self esteem can't take much more.
dancer86442 replied to patnjess7's response:
Patnjess,
Please, take a deep breath & think about this. You can't dig a hole & hide away. What about your children? You love your children! Maybe you are tired of being poked & prodded & led down one path just to discover ya gotta take another 'side road' to get where you are going. But, your kids are worth that effort. Trust me! Do you want to set an example for them & beat what ails you or bury your head in the sand?
If you do have NEAD, I say you are very fortunate. W/ the help of a shrink & possibly some anti-depressants or similar med you could lead a 'normal' life in a very short time & enjoy your time w/ your children. W/ Epilepsy you would be on a constant DR/med merrygoround trying to find an AED &/or treatment that works for you. That MITE take YEARS! Then every 6 mths to a yr, there would be more tests & followups w/ the neuros.
At least talk w/ a psych. Then, take it One Day at a Time. Is that too much?
Love Candi
Please, take a deep breath & think about this. You can't dig a hole & hide away. What about your children? You love your children! Maybe you are tired of being poked & prodded & led down one path just to discover ya gotta take another 'side road' to get where you are going. But, your kids are worth that effort. Trust me! Do you want to set an example for them & beat what ails you or bury your head in the sand?
If you do have NEAD, I say you are very fortunate. W/ the help of a shrink & possibly some anti-depressants or similar med you could lead a 'normal' life in a very short time & enjoy your time w/ your children. W/ Epilepsy you would be on a constant DR/med merrygoround trying to find an AED &/or treatment that works for you. That MITE take YEARS! Then every 6 mths to a yr, there would be more tests & followups w/ the neuros.
At least talk w/ a psych. Then, take it One Day at a Time. Is that too much?
Love Candi
Report This| Share this:so I went to the new Neuro (upsetting)Patnjess,<br /><br />Please, take a deep breath & think about this. You can't dig a hole & hide away. What about your children? You love your children! Maybe you are tired of being poked & prodded & led down one path just to discover ya gotta take another 'side road' to get where you are going. But, your kids are worth that effort. Trust me! Do you want to set an example for them & beat what ails you or bury your head in the sand? <br /><br /> If you do have NEAD, I say you are very fortunate. W/ the help of a shrink & possibly some anti-depressants or similar med you could lead a 'normal' life in a very short time & enjoy your time w/ your children. W/ Epilepsy you would be on a constant DR/med merrygoround trying to find an AED &/or treatment that works for you. That MITE take YEARS! Then every 6 mths to a yr, there would be more tests & followups w/ the neuros. <br /><br />At least talk w/ a psych. Then, take it One Day at a Time. Is that too much?<br /><br />Love Candi
phylisfeinerjohnson replied to dancer86442's response:
Here's some info I researched on NEAD:
Seizures that are psychological in origin are often called psychogenic seizures. These seizures are most likely triggered by emotional stress or trauma. Some people with epilepsy have psychogenic seizures in addition to their epileptic seizures. It's a legitimate seizure and should be treated that way, but it is not caused by a problem in the brain.
Then there are physiologic nonepileptic seizures which can be triggered by some sort of change in the brain — typically a change in the supply of blood or oxygen rather than electrical activity.
http://www.everydayhealth.com/epilepsy/understanding/when-are-seizures-not-epilepsy.aspx
Here's a really good thread on "pseudo seizures" from CWE: http://www.coping-with-epilepsy.com/forums/f20/pseudo-seizures-2-years-getting-worse-6287/
P.S. You're not crazy. I've had both.
Phylis Feiner Johnson
www.epilepsytalk.com
Seizures that are psychological in origin are often called psychogenic seizures. These seizures are most likely triggered by emotional stress or trauma. Some people with epilepsy have psychogenic seizures in addition to their epileptic seizures. It's a legitimate seizure and should be treated that way, but it is not caused by a problem in the brain.
Then there are physiologic nonepileptic seizures which can be triggered by some sort of change in the brain — typically a change in the supply of blood or oxygen rather than electrical activity.
http://www.everydayhealth.com/epilepsy/understanding/when-are-seizures-not-epilepsy.aspx
Here's a really good thread on "pseudo seizures" from CWE: http://www.coping-with-epilepsy.com/forums/f20/pseudo-seizures-2-years-getting-worse-6287/
P.S. You're not crazy. I've had both.
Phylis Feiner Johnson
www.epilepsytalk.com
Report This| Share this:so I went to the new Neuro (upsetting)Here's some info I researched on NEAD: <br />Seizures that are psychological in origin are often called <i>psychogenic seizures.</i> These seizures are most likely triggered by emotional stress or trauma. <b><i>Some people with epilepsy have psychogenic seizures in addition to their epileptic seizures.</i> It's a legitimate seizure and should be treated that way, but it is not caused by a problem in the brain.</b><br /> <br />Then there are <i>physiologic</i> nonepileptic seizures which can be triggered by some sort of change in the brain — typically a change in the supply of blood or oxygen rather than electrical activity.<br /> <br /><a rel="nofollow" href="http://www.everydayhealth.com/epilepsy/understanding/when-are-seizures-not-epilepsy.aspx">http://www.everydayhealth.com/epilepsy/understanding/when-are-seizures-not-epilepsy.aspx</a> <br /> <br /> <br />Here's a really good thread on "pseudo seizures" from CWE: <a rel="nofollow" href="http://www.coping-with-epilepsy.com/forums/f20/pseudo-seizures-2-years-getting-worse-6287/">http://www.coping-with-epilepsy.com/forums/f20/pseudo-seizures-2-years-getting-worse-6287/</a> <br /> <br />P.S. You're not crazy. I've had both.<br /> <br />Phylis Feiner Johnson<br /><a rel="nofollow" href="http://www.epilepsytalk.com/">www.epilepsytalk.com</a>
patnjess7 replied to phylisfeinerjohnson's response:
the only thing that doesn't make sense is my left sided issues they are still there, and still week. He didn't say anything about that, but I guess I could be making that up too? thanks for the links. I'm talking to my neighbor today. She is a licenseed mental health counselor phD, and we are close, and ironlically has been here iwth one of the big seizures. She intrested in pursuing this.
Report This| Share this:so I went to the new Neuro (upsetting)the only thing that doesn't make sense is my left sided issues they are still there, and still week. He didn't say anything about that, but I guess I could be making that up too? thanks for the links. I'm talking to my neighbor today. She is a licenseed mental health counselor phD, and we are close, and ironlically has been here iwth one of the big seizures. She intrested in pursuing this.
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