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Hi Yuki1991
I also agree with you. I have an associates in pstchology so when they gave me that diagnosis I knew what they were saying right away. You are a fake. When they gave me that diagnosis they thought I was going to be upset and were very surprised that I was not mad. They asked me why I was not mad about what they thought and I told them I was not surprised at their diagnosis. I explained that my old neurologist explained that not every person has seizure activity often enough to pick up on it. I don't think they were happy to here this at all because they do not like to be thought of as wrong by the patient. And it is hard to be without froeedom. I can't drive anymore either and it is hard because my husband is great about doing everything but I feel like it is all on him and I am no help whatsoever. I can't wait until I can find out what is really going on with me. I go to my family doctor tomarrow.
 
Hi JLogefeil
I hope we can all get these diagnoses right soon. It is hard enough to live with this illness let alone to get diagnoses that are incorrect. Especially because they are not listening to us.
 
I know I just keep telling myself that my timing isn't God's timing. But I still get impatient.
 
Me to really bad. But do you or any one ever thought it could be really in our heads? I know ur mind is a powerful thing. I think about it.
 
In some cases mind over matter works very well. In other cases chemical substances in the brain do alter a person's ability to excercise mind over matter to their full capacity. Now I figure there must be some kind of facts to back up a PNES diagnosis. Schizophenia, bipolar, even common depression has factual evidence in abnormal brain chemicals so PNES must also have a chemical imbalance somewhere in the brain. So my question is why if a doctor can diagnose depression based on symptoms can a doctor not also go with symptoms for epilepsy. After all that is how they discovered epilespy to begin with. And if they believe PNES to be so correct and factual in diagnosis then why are neurologists using anti-epileptics drugs to treat this disorder without doing futher brain chemical testing for imbalances such as those found in depression, schizophrenia, and bipolar.
 
You have a good point. Have you ever talk said anything to a doc about this. I m site if they do they will give you a deer in the headlights look.
Honestly, I think doctors get trained to be closed minded and forget the real reason they become a doc.
It's weird, I want to be a doc but knowing what we people who have to deal with them and what we/other people think. I think I changed my mind. I do t want people to think that about me. Does that make sence?
Anyways......:) enough about that. How are you doing today?
 
roseycoe said:
Now I figure there must be some kind of facts to back up a PNES diagnosis. Schizophenia, bipolar, even common depression has factual evidence in abnormal brain chemicals so PNES must also have a chemical imbalance somewhere in the brain. So my question is why if a doctor can diagnose depression based on symptoms can a doctor not also go with symptoms for epilepsy.
Click to expand...

The problem is that not all seizures are measurable, especially those that are deeper in the brain.

To make it even more confusing, psychogenic seizures are defined not by what is there but what is not so it can be hard sometimes for the doctor to play detective.
 
Hi everyone
Went to my family doctor this morning and he gave me some great insight. But he does want to refer me to another neurologist. I was wondering if anyone can help me though. I am currently on oxcarbazepin 600 mg twice a day. And now my neurologist added garbapentin 300mg twice a day as a backup. I have been having problems with tingling and numbness in my legs, hand, arms, and feet and severe vertigo attacks. My doctor referred me to an ears, nose, and throat specialist because my ears have always been bad. But my question is my doctor said he has heard stories about tingling and numbness being connected to seizures. Now I havn't had a seizure since the 23rd of June so can this still be seizure related does anyone have any ideas. Also does a neurologist hand out 2 anti-epileptic meds for PNES my doctor said he did not think so because usually they do not combine 2 seizure meds unless they think there could really be a problem. What do you guys think any opinion would be appreciated very much.

Hi JLogefeil
I am doing ok. I have not told the doctor this but I did ask my family doctor if 2 anti-eps were really necessary especially since they are trying to say PNES. I did ask how a child of six could describe auras and become non-responsive without it being seizures. And how two other neurologists could diagnose complex partial seizures and they can't. Their response was they didn't know.

Hi epileric
I do agree with you that neurologists have to play detective based on symptoms they cannot find facts to. I was wondering if you know I just got done reading about refactory seizures and how an eeg reading can show up normal with refactory seizures going on. Do you know if they are talking about epileptic or non-epileptic seizures or both in refactory seizures?
 
roseycoe said:
Hi epileric
I do agree with you that neurologists have to play detective based on symptoms they cannot find facts to. I was wondering if you know I just got done reading about refactory seizures and how an eeg reading can show up normal with refactory seizures going on. Do you know if they are talking about epileptic or non-epileptic seizures or both in refactory seizures?
Click to expand...

My understanding is that non-epleptic seizures do not show up on EEGs but if the epileptic seizures are occurring too deep in the brain the EEG won't read it either. Do you have a link to what you were reading?

Mine are refractory too and rarely show up on EEGs because they are deep in the brain. Sometimes they can still show up if I have a seizure during the scan & it generalizes to other parts of the brain where the EEG can read the neural misfiring.
 
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Hi epileric
I can't post link, they said I am still to new to forum. But after all this reading I think it is safe to say that unless I have a seizure they can catch I am going to be in trouble. They will take me off my meds and I am doing really well right now. My seizures have lessened at least and the other problems I am working on. I suppose if they don't believe me and take me because they can't catch one I can just deal with the seizures. I only had meds from about 6 to 8 years old and started on meds again at about 34. Other than that I was on my own. But it still makes it hard but unless I have a seizure they can catch that looks like the route they are going to put me on from what I have read.
 
Have you been keeping a journal of your symptoms and how they are responding to the medication? If so, you might be able to show the docs, and convince them to continue your rX. In the absence of a positive EEG, a neurologist can still make an epilepsy diagnosis based on the actual symptoms you are experiencing, and on whether they respond to anti-seizure medication.
 
Hi Nakamova
I have been keeping a journal but I don't think I am doing it right. Everyone here that talks about their journal seems to keep such accurate records and all I do is write down how I am feeling and not everyday either. If I feel ok that day with only little dizziness I don't write it down. Fedup was talking about keeping track of foods and drinks which I never knew but it sounds like a very good idea. The problem is that because I went for years and years with no insurance or even a family doctor I have just tried to manage the best I can when I have them. I never knew about journals and keeping such accurate information. The epilepsy psychiatrist and I talked last Tuesday and he said I explained strong characteristics of hypergraphia when I was younger and didn't have meds. But I never kept any documentation like my old journals so that won't help me now. But do you think I should start a new journal with everything I have always done that is quirky like the hypergraphia and then keep track of foods and everything else everyday?
 
I think a new journal is a good idea -- it may be easier if you do one tracking symptoms, medications, and side effects, and a different one for things like diet/and sleep habits. There's some information here about different types of seizure journals that you may find helpful: http://www.coping-with-epilepsy.com/forums/f23/seizure-journals-10776/

It may take a few tries before you figure out what works best for you. On the plus side, you may eventually discover triggers or patterns.
 
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