Hi everyone I am new to this forum but my God for the first time in a long time I have hope listening to your stories. I was diagnosed with complex partial seizures when I was six and now I am 36. I can related to your stories because I am going through this now. I have had two neurologists diagnose me with complex partial seizures and in the last year and a half I have had problems with headache changes, ongoing seizures that I have had since I was six, different parts of my body going to sleep, and severe spells of vertigo. I went to a new neurologist to see what these problems were to see if seizure patterns could change or if there was another problem. My old neurologist told me that people with complex partial seizures do not always show seizure activity often enough to catch on an mri or eeg which is of course what happened so now these new doctors are not listening to me and saying that because eeg and mri was clear I have PNES. And now they are saying my seizures that I have had since I was six never were seizures but PNES. I am so frustrated because I have had these for thirty years and I know what my seizures are and these new problems are not what my seizures have always been but they are not listening. If I would have known all this was going to be so problematic I would never have went to the doctors for these problems. Anyone have any advice I could really use some because I also have had no tramatic events or anything that could bring on PNES.
Hi Everyone
- Thread starter roseycoe
- Start date
Welcome to the Coping With Epilepsy Forums
Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.
Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!
epileric
Veteran
- Messages
- 4,499
- Reaction score
- 1
- Points
- 163
Welcome roseycoe
It seems a lot of doctors tend to base everything on the EEG without taking into consideration that it may not pick up seizures if they are too deep in the brain.
Mine often don't show up on the EEG. A couple of neurologists thought my seizures were PNES but after 39 years they found a lesion deep in my brain (on the hypothalamus) so nobody else made that claim.
There are a lot of neurologists who do acknowledge that not all seizures show up on an EEG. I think it's just a matter of you finding the right neurologist.
Also, I gave your post its own thread so that everyone can welcome you here.
It seems a lot of doctors tend to base everything on the EEG without taking into consideration that it may not pick up seizures if they are too deep in the brain.
Mine often don't show up on the EEG. A couple of neurologists thought my seizures were PNES but after 39 years they found a lesion deep in my brain (on the hypothalamus) so nobody else made that claim.
There are a lot of neurologists who do acknowledge that not all seizures show up on an EEG. I think it's just a matter of you finding the right neurologist.
Also, I gave your post its own thread so that everyone can welcome you here.
little fruitcake
New
- Messages
- 165
- Reaction score
- 0
- Points
- 0
Welcome Rosey, glad you are here and I hope you find all the answers you are looking for. I wish I could be of more help.
Welcome!
I'm so sorry that you are going through this.
I really don't understand the idea of a dr. saying a 6 year old can have psychogenic seizures...unless of course they have been through something extremely emotionally traumatic.
There are other people here too that were diagnosed with epilepsy as children and then when the seizures return as adults but test results are clear it's like Dr.s totally change their minds. Some doctors really rely on test results alone and in very black and white terms. But epilepsy is complicated because the brain itself is complex.
You just wanted a little help and now it's opened a whole new struggle for you.
I wish I had advice. I'm still in the middle of a similar battle but epileric is right.
Just keep on looking for a neurologist who doesn't just see test results but takes in the whole picture. You know your own body and trust your instincts.
I'm so sorry that you are going through this.
I really don't understand the idea of a dr. saying a 6 year old can have psychogenic seizures...unless of course they have been through something extremely emotionally traumatic.
There are other people here too that were diagnosed with epilepsy as children and then when the seizures return as adults but test results are clear it's like Dr.s totally change their minds. Some doctors really rely on test results alone and in very black and white terms. But epilepsy is complicated because the brain itself is complex.
You just wanted a little help and now it's opened a whole new struggle for you.
I wish I had advice. I'm still in the middle of a similar battle but epileric is right.
Just keep on looking for a neurologist who doesn't just see test results but takes in the whole picture. You know your own body and trust your instincts.
huskymom
New
- Messages
- 1,197
- Reaction score
- 0
- Points
- 0
Welcome Rosey! I am glad to meet you. I have complex partial seizures as well. Mine didn't start until my 40's. My first Neurologist just basically went through the motions without really hearing me. I have recently found an Epileptologist that I love! She is great and really tuned into what I have to say. Is there a chance that you could find one where you live? They specialize in seizures and epilepsy. Don't let them get you down, you need to stand up for what is right. You know best how you feel. Keep us informed 
Hi Rosey,
Welcome to CWE.
I had several Neur. and each one did all the test, MRI, EEG and so on. Nothing even showed up, until I went to a teaching Hosp. in Atlanta.
The MRI, finally showed something on the right side of my brain, that was causing my seizures. (I can't remember how they worded what it is) I asked to get a copy of that MRI, and they did give me a disk. I take that with me to every new neur. I go to.
I now ask for copies of each Dr./Neur. visit.
I don't know if this inform. can help you.
Welcome to CWE.
I had several Neur. and each one did all the test, MRI, EEG and so on. Nothing even showed up, until I went to a teaching Hosp. in Atlanta.
The MRI, finally showed something on the right side of my brain, that was causing my seizures. (I can't remember how they worded what it is) I asked to get a copy of that MRI, and they did give me a disk. I take that with me to every new neur. I go to.
I now ask for copies of each Dr./Neur. visit.
I don't know if this inform. can help you.
Hi everyone I thank you so much for all your support. I did find out some news since I last posted and though it does not pertain to my seizures my old neurologist did say that my seizures would flare up if I was sick somewhere else. I got my metabolic blood work back and I have had an inflamed lymph node behind my right ear for about a year and a half right when all these new symptoms started. Well my blood work came back with a high white, red, hemoglobin, and hematocrit count. I have no idea what any of this means but I have an appointment with my family doctor on Monday so at least I can go in there and he will know this is not in my head and PNES. I am releived to know that at least they cannot say well nothing is wrong with you so you have a psychological disorder. Which I disagree that PNES are all based on psychological disorders anyway I only have an associates in psychology but I think sometimes a seizure can be so deep down the eeg will not pick it up. I also think that brain waves should be studied individually and not grouped together. A person might have seizures so light that the eeg does not pick them up as an abnormal brain reading. But they could still be just as bothersome to that person as to someone's whose seizures are deep in their brain. I told the epilepsy psychiatrist if I had a psychological disorder I would know it. The epilepsy psychiatrist also said I have all the characteristics of complex partial seizures including hypergraphia and he disagrees with the neurologist so I hope he can help me out. Keep you all posted and thanks so much for listening.
Hi Everyone,
I am new to all of this, and I have to say it is all very disconcerting. I have been getting simple partial seizures at night with a lot of head bobbing in my sleep, and my head will hurt and burn afterwards, maybe a little nausea and headache the next day. How very awful to be told your illness is a mental illness because the source of the seizures can't be found. I've had the MRI and EEG, and I am due for a sleep study. The neuro doesn't want to see me back until all three tests are done, and I really am now kind of leary of it all. How horrible to be dismissed as mentally ill. I would rather deal with the symptoms in silence than to not be taken seriously.
Okay, thanks for letting me vent. Like I said, this is all so new to me.
I am new to all of this, and I have to say it is all very disconcerting. I have been getting simple partial seizures at night with a lot of head bobbing in my sleep, and my head will hurt and burn afterwards, maybe a little nausea and headache the next day. How very awful to be told your illness is a mental illness because the source of the seizures can't be found. I've had the MRI and EEG, and I am due for a sleep study. The neuro doesn't want to see me back until all three tests are done, and I really am now kind of leary of it all. How horrible to be dismissed as mentally ill. I would rather deal with the symptoms in silence than to not be taken seriously.
Okay, thanks for letting me vent. Like I said, this is all so new to me.
Hi Levihope
I know it can be very frustrating. I went without medication for my complex partial for most of my life. And sad to say I also have asked myself if I was better off just dealing with it. the epilepsy psychologist asked me why after being diagnosed with it if I thought I was still having them why I did not seek medical treatment. I told him I had no insurance or money for a neurologist and neither did my mother. I don't think these doctors understand that there are several reasons a person does not seek treatment or gives up 1 doctors blow them off and don't listen 2 no money and 3 people become frustrated with trying to get diagnosed. Doctors do not realize that when you are poor or do not recognize what you have you learn to adjust. They act amazed that people do that but what do they think people did before anti-epileptic meds. As frustrating as it is don't give up. I was on the verge of doing that just the other day and found this forum. It takes a while and is a hard road to travel but there is hope that sometime the doctor will preform a test and it will show and prove your seizures. If you know you have them they will find them so don't give up. But I do understand I am going through this too and the doctor I have is not listening. But I am going to keep trying until I find one that does.
I know it can be very frustrating. I went without medication for my complex partial for most of my life. And sad to say I also have asked myself if I was better off just dealing with it. the epilepsy psychologist asked me why after being diagnosed with it if I thought I was still having them why I did not seek medical treatment. I told him I had no insurance or money for a neurologist and neither did my mother. I don't think these doctors understand that there are several reasons a person does not seek treatment or gives up 1 doctors blow them off and don't listen 2 no money and 3 people become frustrated with trying to get diagnosed. Doctors do not realize that when you are poor or do not recognize what you have you learn to adjust. They act amazed that people do that but what do they think people did before anti-epileptic meds. As frustrating as it is don't give up. I was on the verge of doing that just the other day and found this forum. It takes a while and is a hard road to travel but there is hope that sometime the doctor will preform a test and it will show and prove your seizures. If you know you have them they will find them so don't give up. But I do understand I am going through this too and the doctor I have is not listening. But I am going to keep trying until I find one that does.
little fruitcake
New
- Messages
- 165
- Reaction score
- 0
- Points
- 0
Welcome Levi, I know exactly how you feel. I too remain silent, mainly because I don't know the right words to tell people and then I also don't want to worry my family and friends.
Welcome to CWE!
I have had 11 doctors so far, am looking for number 12. Number 11 did listen to me and i listened when he talked. We talked about side effects of different meds i may of gone on. He listened when i told him what hospital i would not go to in boston as that place told me i had not every had epilepsy ( only had it all my life-over 50 yrs)
You need to find a doctor who listens to you, and explains things to you. This is your body, you deserve to have all your questions answered by the doctors. I finally have them tell me what the blood test is ( not just the medical name i want english), before i go get it done.
I have had 11 doctors so far, am looking for number 12. Number 11 did listen to me and i listened when he talked. We talked about side effects of different meds i may of gone on. He listened when i told him what hospital i would not go to in boston as that place told me i had not every had epilepsy ( only had it all my life-over 50 yrs)
You need to find a doctor who listens to you, and explains things to you. This is your body, you deserve to have all your questions answered by the doctors. I finally have them tell me what the blood test is ( not just the medical name i want english), before i go get it done.
Hi everyone
I can also relate to keeping it quiet because back in the early 80's almost every child was told they would outgrow it. I found out from my last neurologist that only about 40% of children actually outgrow it. I went from about eight when I went off meds and did not go back on them until I was 34. I am now 36. I kept it quiet because I figured no one could tell I was having them anyway so I might as well leave it alone. Finally when I turned about 34 I started having them more often and they were becoming a problem with my job because people were beginning to notice. I finally had insurance so I decided to go.
I can also relate to keeping it quiet because back in the early 80's almost every child was told they would outgrow it. I found out from my last neurologist that only about 40% of children actually outgrow it. I went from about eight when I went off meds and did not go back on them until I was 34. I am now 36. I kept it quiet because I figured no one could tell I was having them anyway so I might as well leave it alone. Finally when I turned about 34 I started having them more often and they were becoming a problem with my job because people were beginning to notice. I finally had insurance so I decided to go.
JLogefeil
New
- Messages
- 279
- Reaction score
- 0
- Points
- 0
I m sorry that this is all happening to you. It's kind weird it seem that alot of people are going though the same thing with PNES. Doctors think that's what I have and so I started a YouTube channel with advice from doc and what my psych has been telling me and also what I m learning.
It might help or you might or might not learn anything but if you go to www.youtube.com and type in the search box jujub428 and my video should show up start from video one. There not very long and I think I kinda sound stupid but I do know what I m talking about.
By chance can you talk to the doc that diagnosied you the first time and run things by them and see what they have to say?
It might help or you might or might not learn anything but if you go to www.youtube.com and type in the search box jujub428 and my video should show up start from video one. There not very long and I think I kinda sound stupid but I do know what I m talking about.
By chance can you talk to the doc that diagnosied you the first time and run things by them and see what they have to say?
Hi JLogefeil
I watched your you tube video and I did find it helpful. I had a golden retriever that we had to put down last November because he went into status epilepticus. I completely understand about not having insurance. I did not have insurance for a long time. It has also been my personal opinion that I have had better luck with older neurologists than just out of medical school younger ones. The older neurologists seem to go based more on symptoms and less on technology which only works if they catch a seizure or if a person has seizure activity often enough to be picked up on. PNES is a cop-out diagnoses I think. If a neurologist can't catch one they say you are faking it which as I put in an earlier post I think may be wrong. I think every person's brain waves are different and what may be normal for me may not be normal for the next person. Also I find if you put these doctors on the spot they often cannot answer the question anyway. I have a new neurologist and since I have been going to him I feel like I know more about epilepsy and seizures than he does. And you made a great point on your you tube video seizure feelings are very hard to put into words and if you cannot describe the exact feeling they want to hear you are faking it. Just keep going. I thought I was all alone with these problems and then I came here. Sometimes it takes years to get a real diagnosis. Have you gone to the psychiatrist yet?
I watched your you tube video and I did find it helpful. I had a golden retriever that we had to put down last November because he went into status epilepticus. I completely understand about not having insurance. I did not have insurance for a long time. It has also been my personal opinion that I have had better luck with older neurologists than just out of medical school younger ones. The older neurologists seem to go based more on symptoms and less on technology which only works if they catch a seizure or if a person has seizure activity often enough to be picked up on. PNES is a cop-out diagnoses I think. If a neurologist can't catch one they say you are faking it which as I put in an earlier post I think may be wrong. I think every person's brain waves are different and what may be normal for me may not be normal for the next person. Also I find if you put these doctors on the spot they often cannot answer the question anyway. I have a new neurologist and since I have been going to him I feel like I know more about epilepsy and seizures than he does. And you made a great point on your you tube video seizure feelings are very hard to put into words and if you cannot describe the exact feeling they want to hear you are faking it. Just keep going. I thought I was all alone with these problems and then I came here. Sometimes it takes years to get a real diagnosis. Have you gone to the psychiatrist yet?
JLogefeil
New
- Messages
- 279
- Reaction score
- 0
- Points
- 0
Yes I went to him and he ruled them out saying the not fake or stressed related.
I don't know the older doc go off of symtomes mostly not so much of technology. My Nurologist is pretty old, so I hope he go s off of things I tell him and not so much on the tests.
I keep being told it can take yes to get a diagnosis. My psych said that I prob wount get a diagnosis for about 5 to ten years unless I find a really good doc that knows a lot, and thoes good doc are hard to find.
I m glad you watched them did you watch al of them.
I m sorry to hear about your dog
I don't know what I would do if I had to do that.
Well I m here if you want to text or talk.
Keep Being Strong.
I don't know the older doc go off of symtomes mostly not so much of technology. My Nurologist is pretty old, so I hope he go s off of things I tell him and not so much on the tests.
I keep being told it can take yes to get a diagnosis. My psych said that I prob wount get a diagnosis for about 5 to ten years unless I find a really good doc that knows a lot, and thoes good doc are hard to find.
I m glad you watched them did you watch al of them.
I m sorry to hear about your dog
I don't know what I would do if I had to do that. Well I m here if you want to text or talk.
Keep Being Strong.
Hi JLogefeil
Thank you for being sorry about my dog. That was hard to watch. I think it is true that it might take a long time before doctors stop throwing out PNES. I have to go to the grocery store because my neurologist won't let me drive anymore so I have to wait until my husband is home on the weekends to go. I only watched the first video and I will watch the rest when I get home. Talk to you later and keep smiling.
Thank you for being sorry about my dog. That was hard to watch. I think it is true that it might take a long time before doctors stop throwing out PNES. I have to go to the grocery store because my neurologist won't let me drive anymore so I have to wait until my husband is home on the weekends to go. I only watched the first video and I will watch the rest when I get home. Talk to you later and keep smiling.
little fruitcake
New
- Messages
- 165
- Reaction score
- 0
- Points
- 0
JL, I know just what you mean. You feel lilke a burden and its a blow to your self-esteem. We need our freedom.
Hello! I understand it really good.
Epilepsy is a part of us, and it is a problem when someday you hear- it isn't epi. It is a question- what??? You know you have epilepsy, and after years part of your world brakes down. I have the same now. One way- I think life without disease is beautiful, but with epi you can live and it isn't so bad, so why to change it after years?
And one more thing- for me a diagnose "psychogenic non-epileptic seizures" would be like words from doctor: "you are a liar, go out". Really- with dis diagnose you cannot do nothing, and with epilepsy you could fright or be friend...
Yuki
Epilepsy is a part of us, and it is a problem when someday you hear- it isn't epi. It is a question- what??? You know you have epilepsy, and after years part of your world brakes down. I have the same now. One way- I think life without disease is beautiful, but with epi you can live and it isn't so bad, so why to change it after years?
And one more thing- for me a diagnose "psychogenic non-epileptic seizures" would be like words from doctor: "you are a liar, go out". Really- with dis diagnose you cannot do nothing, and with epilepsy you could fright or be friend...
Yuki