Hi everybody, I'm new here and I'm new to the whole epilepsy thing too! I was told I have abnormal activity in the left temporal lobe region last week by a psychiatrist after I had an EEG (I initially went to him as I thought I was going crazy). However, the psychiatrist appears to be IGNORING this information and continuing to diagnose me with drug induced psychosis which is absurd considering I have not taken anything stronger than an aspirin or smoked marijuana for 15 years and most of the symptoms I have described to him seem to fit simple partial seizures..? I had no idea what temporal epilepsy actually was until I left his office and began to look it up on the net and now, I'm 100% sure the symptoms I have been hiding and coping with since my teens is in fact temporal epilepsy. I have an appointment with my family medical doctor tomorrow to discuss this and I will ask her to request the EEG report from the psychiatrist but I'm scared...a diagnosis of drug induced psychosis will ruin my life and my career and I cannot accept it, especially when I know it is not right...I really need your help - any information on temporal lobe epilepsy gratefully received! x
Temporal epilepsy info required
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epileric
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Welcome to CWE Lillyrush
I know a lot of medical professionals don't like it when patients diagnose themselves, especially if it contradicts what they say. Did you ask the psychiatrist why s/he doesn't find your EEG relevant or if s/he's reading something different into it?
My personal opinion is that you should ask a neurologist if you have been having seizures. Make sure you mention the EEG to them so that they can have it transferred & take a look at it. They'd be much better trained to tell if that really is what you're experiencing.
I know a lot of medical professionals don't like it when patients diagnose themselves, especially if it contradicts what they say. Did you ask the psychiatrist why s/he doesn't find your EEG relevant or if s/he's reading something different into it?
My personal opinion is that you should ask a neurologist if you have been having seizures. Make sure you mention the EEG to them so that they can have it transferred & take a look at it. They'd be much better trained to tell if that really is what you're experiencing.
Well, even many neurologists seem rather poor at diagnosing temporal lobe symptoms sucessfully from what I know, mostly through being apparently worse informed than you would hope, which causes them to confuse TLE symptoms with psychoses. So it's perhaps not surprising that a psychiatrist is going to want to look for psychiatric explanations from the outset, especially if you seem to fit the critera he's looking for. It may seem an absurd diagnosis when you know you haven't been using drugs, but perhaps he doesn't believe you, has seen a lot of cases with similar features in the past that he's attributed (rightly or wrongly) to drug use, perhaps has a personal vendetta against drug use and is inclined to blame drugs for any case where he knows a person has used in the past, etc. There's no way for anyone to tell whether or how far he's justified in believing what he does from here. What's important at this stage is that you don't agree with his diagnosis and that he doesn't seem to want to change his mind.
He's not likely to have the expertise to diagnose TLE or interpret the results of your ECG as well as as a trained neurologist in any case, so I think as Eric said you need to get further medical opinion. It's something you owe to yourself if you think he has your symptoms wrong.
TLE manifests with an incredibly diverse array of symptoms, which is one of the things that make it difficult to diagnose. It would take a long time to list all the things that COULD be part of it. What I did when I came on here was to describe some of my own symptoms and ask others if they had experienced what I was describing or knew it to be a likely TLE symptom. No one on here can actually diagnose you, or should be trying - but I did find the feedback I got from that useful and informative. I was already pretty sure what lay at the root of my symptoms and had done a lot of research, but interacting with others who had actually experienced something similar themselves was still very helpful.
He's not likely to have the expertise to diagnose TLE or interpret the results of your ECG as well as as a trained neurologist in any case, so I think as Eric said you need to get further medical opinion. It's something you owe to yourself if you think he has your symptoms wrong.
TLE manifests with an incredibly diverse array of symptoms, which is one of the things that make it difficult to diagnose. It would take a long time to list all the things that COULD be part of it. What I did when I came on here was to describe some of my own symptoms and ask others if they had experienced what I was describing or knew it to be a likely TLE symptom. No one on here can actually diagnose you, or should be trying - but I did find the feedback I got from that useful and informative. I was already pretty sure what lay at the root of my symptoms and had done a lot of research, but interacting with others who had actually experienced something similar themselves was still very helpful.
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I have temporal lobe epilepsy. I was dx'd at the age of 18 months old. Been on medications since then. Ive had alot of EEG's done, my first VEEG done this year. My parents took me to a pediatric neurologist when I was a child and from then on, Ive gone to see a neurologist that adults go to. I would suggest going to a neurologist first. A family doctor doesnt have alot to go off of. All they can basicly do is probably referr you to a neurologist or guide you in the right direction. I have had complex partial seizures and grand mal seizures growing up. This year, after going from two seizure medications, down to one, Ive been having simple partial seizures. Heck of a lot better than the grand mal seizures! 
If you have any questions, feel free to ask me!
If you have any questions, feel free to ask me!- Messages
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Hi Lillyrush, welcome to CWE!
I echo what others have said above about seeing a specialist who can make an informed diagnosis. One thing that might be helpful is for you to write down all the symptoms you may have experienced, and a timeline for when you've experienced them. Include things you're not sure about -- it's the neurologist's job to sort out what's going on. Good basic info about TLE: http://www.epilepsy.com/epilepsy/epilepsy_temporallobe
Best,
Nakamova
I echo what others have said above about seeing a specialist who can make an informed diagnosis. One thing that might be helpful is for you to write down all the symptoms you may have experienced, and a timeline for when you've experienced them. Include things you're not sure about -- it's the neurologist's job to sort out what's going on. Good basic info about TLE: http://www.epilepsy.com/epilepsy/epilepsy_temporallobe
Best,
Nakamova
Thanks everybody for your responses - much appreciated! I went to see my family doctor today and she also thinks my symptoms are temporal lobe related and not psychosis and she also told me I need to get the psychiatrist to refer me to the neurologist. My next appointment with the psychiatrist is in January so hopefully, I will be able to change his mind..
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I had a similar experience. In march after having a video eeg done, instead of having grand mal seizures or complex partial seizures, i was having simple partial seizures. So my dr said he felt comfortable only putting me back on 1 medication, instead of 2 like I was on prior to that. But he felt that the seizures that I was having was possible non epileptic seizures. So he did set up an appointment with a psych dr, and I went to see her a few times. One thing this dr pointed out to me is that first off, when she saw my EEG, she could see Epileptic activity on it, indicating I did in fact have real seizures. The second thing she pointed out was that seizure medications wont stop non epileptic seizures from coming. Because I was put back on keppra xr before returning home and I didnt have any more after that, that was a big reason for her to say that what I had during my VEEG was in fact real epileptic seizures. That was 9 months ago, and the only time Ive had a seizure was when I was put on some medications to treat gerd, and it interferred with my seizure medications, causing seizures to occur. Once I quit that medication for the gerd, the seizures went away. So I would say going to the psych dr would be a good idea. Have them referr you to a neurologist, and hopefully they will give you the tests like a EEG to see what kind of activity they can get to diagnose you. Now just like alot of others here have said, not all EEGs will pick up seizure activity. My dr beleives that the seizures I was having when I was in for my VEEG could have been too deep within my brain for some to be picked up. So its possible that you could have epilepsy, but come back with a normal EEG too. But I will hope that the drs will help you to find the answers you need. Hang in there!
thank you for your response - very much appreciated! i have actually had an EEG and it recorded abnormal activity in the left temporal lobe region. The problem is I initially went to a psychiatrist as I thought my symptoms were psychosis of some kind and I was really scared I was going crazy! My psychiatrist listened to my symptoms (episodic vagueness and audio & visual hallucinations with smells and tastes too) and he then ordered an MRI (which was clear) and an EEG (which was not clear). This psychiatrist is now ignoring the EEG findings and is still trying to diagnose me with psychosis despite the fact my abnormal EEG which has been reviewed by a neurologist states the findings indicates temporal lobe epilepsy...
I have since met with my family medical doctor who also thinks I have possible temporal epilepsy and has told me to go back to this psychiatrist and demand to see the neurologist...So, I have made an appointment and I have to see him on 17th January. I feel like I'm in such a terrible right mess now, trying to prove I dont have psychosis to a consultant psychiatrist that has over 30yrs of experiance...I'm really scared as a diagnosis of psychosis will really screw up any chances of a job and will totally wreck my career
I have since met with my family medical doctor who also thinks I have possible temporal epilepsy and has told me to go back to this psychiatrist and demand to see the neurologist...So, I have made an appointment and I have to see him on 17th January. I feel like I'm in such a terrible right mess now, trying to prove I dont have psychosis to a consultant psychiatrist that has over 30yrs of experiance...I'm really scared as a diagnosis of psychosis will really screw up any chances of a job and will totally wreck my career
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I agree with Nakamova! Ive had left temporal lobe epilepsy all my life. When Ive had EEG's all mine come back abnormal, and when I have MRI's they all come back normal. just because you are having normal MRI's doesnt mean they rule out having epilepsy. I would recommend getting a second opinion. Ive found myself a great doctor, and it took him some seeing from a psych dr that I indeed do have epilepsy. hang in there!
Maybe I'm just being particularly obtuse here, but I'm having trouble seeing why your own doctor couldn't just refer you to a neurologist directly. She referred you to the psychiatrist to start with, when you were concerned yourself that these episodes were psychiatric in nature. I don't see what's stopping her doing a new referral to a neurologist if she now agrees herself that there's sufficient reason to reevaluate your symptoms as being possibly epileptic in nature.
My guess is that there's some professional politics feeding into this, in the form of an unspoken agreement not to step into the territory of other doctors (especially a senior specialist whom she may feel professionally intimidated by). If that is the reason her duty of care to the patient (yourself) really needs to come before her worry about what this psychiatrist might think of her for referring you to a neurologist without his say-so (which in fact she does NOT need as your primary care practitioner), when so much is apparently at stake for you from a misdiagnosis. It would be different if she didn't agree herself that there are grounds for referring to the neurologist, but since she does she has both a right and a duty to do it herself rather than passing the buck to the psychiatrist, I believe. My understanding is that medical referral to someone who is in a better position to diagnose and treat the patient's symptoms is an obligation based on the best interests of the patient, not something that exists to preserve the delicate professional egos of doctors. I'm pretty certain that somewhere in her ethical code (the Irish one, I presume) something to this precise effect will be stated.
I'm just saying this in case you get more issues with the psychiatrist being uncooperative and unwilling to consider your perspective, which seems to be a legitimate concern for you after what's already happened. I'll also add that I think you probably have a right to a second opinion or a referral which is independent of the psychiatrist's pesonal diagnosis, and that it might help to hold your ground and insist on your rights to a referral next time you see him, without getting bogged down in trying to "prove" that you don't have psychosis, which he might just take as showing that you are in denial about your condition if he remains set on his diagnosis despite the contrary indications of the ECG. It would probably help you also if you did some research to find out exactly what his obligations to refer you are.
My guess is that there's some professional politics feeding into this, in the form of an unspoken agreement not to step into the territory of other doctors (especially a senior specialist whom she may feel professionally intimidated by). If that is the reason her duty of care to the patient (yourself) really needs to come before her worry about what this psychiatrist might think of her for referring you to a neurologist without his say-so (which in fact she does NOT need as your primary care practitioner), when so much is apparently at stake for you from a misdiagnosis. It would be different if she didn't agree herself that there are grounds for referring to the neurologist, but since she does she has both a right and a duty to do it herself rather than passing the buck to the psychiatrist, I believe. My understanding is that medical referral to someone who is in a better position to diagnose and treat the patient's symptoms is an obligation based on the best interests of the patient, not something that exists to preserve the delicate professional egos of doctors. I'm pretty certain that somewhere in her ethical code (the Irish one, I presume) something to this precise effect will be stated.
I'm just saying this in case you get more issues with the psychiatrist being uncooperative and unwilling to consider your perspective, which seems to be a legitimate concern for you after what's already happened. I'll also add that I think you probably have a right to a second opinion or a referral which is independent of the psychiatrist's pesonal diagnosis, and that it might help to hold your ground and insist on your rights to a referral next time you see him, without getting bogged down in trying to "prove" that you don't have psychosis, which he might just take as showing that you are in denial about your condition if he remains set on his diagnosis despite the contrary indications of the ECG. It would probably help you also if you did some research to find out exactly what his obligations to refer you are.
I think your right - I am stuck in the middle of power politics between doctors but there not a lot I can actually do..I mean, there is only one neurologist in my area and he doesnt take referals from GP's!! I have no idea why but he doesnt, he will only take referals from a consultant - which leaves me to go back to the psychiatrist (who's a consultant) to ask him if he will refer me!! And they think I'm crazy!! lol!! Anyways, I have an appointment with the psychiatrist on 17th January so I am hoping he will refer me without any major fuss..hope hope..on another note, I have stopped taking the Tegretol, It worked ok for about a week then I began to feel really sick and also like I was stoned or drunk or something, so bad I couldnt concentrate or drive so I stopped taking it - anyone else heard of this? x
Ahh, seems like the politics was a bit different in nature to how I guessed then. Maybe I was a bit too quick to judge your own doctor! It didn't even occur to me that you would have trouble getting a referral from her because the neurologist wouldn't accept it.
I'd actually never heard of such a thing, and it confused the heck out of me that he only took referrals from other consultants until - I had an idea, which a quick search on the all-knowing interwebs quickly confirmed: I guessed there might be a shortage of neurologists near you and the refusal to take referrals from general practitioners was therefore a contrivance to lower the total number of referrals, and therefore his workload.
This guess was correct, but I hadn't imagined just how bad the shortage is in Ireland. Neurological services are seemingly in an absolute MESS there and chronically understaffed with senior practitioners. Having the worst rate per capita of neurologists in the "Western" world by a large margin says something, and it's not a good thing for anyone there who wants to get a proper neurological diagnosis any time soon. I thought the situation was bad in the uk (which it is), but this kind of stuff looks alarming... Is there much publicity about these shortages? It seems like there SHOULD be, but maybe people find other things to get excited about.
http://www.nationalepilepsycentre.ie/dynamicdata/epilepsyinireland.asp
http://www.irishhealth.com/article.html?id=9464
I wish you the best of luck anyway; it sounds like getting a diagnosis from the neurologist may be a long hard road, even if that IS what all the signs point to. It's possible in the circumstances that the psychiatrist may be reluctant to refer even if he does suspect seizures, as a matter of a policy of wanting to exhaust all other possibilities and drag things out before he refers you to the neurologist - who probably simply doesn't have the time to deal with all the people that need to see him. I do hope you get seen and get properly evaluated for temporal lobe symptoms soon - but if not, it's the system that's to blame, not yourself - so I hope you manage not to take it too personally if there are further delays and doubts.
In any case, I've found people here to be pretty supportive in general, so don't hesitate to come back if there's more you need.
I'd actually never heard of such a thing, and it confused the heck out of me that he only took referrals from other consultants until - I had an idea, which a quick search on the all-knowing interwebs quickly confirmed: I guessed there might be a shortage of neurologists near you and the refusal to take referrals from general practitioners was therefore a contrivance to lower the total number of referrals, and therefore his workload.
This guess was correct, but I hadn't imagined just how bad the shortage is in Ireland. Neurological services are seemingly in an absolute MESS there and chronically understaffed with senior practitioners. Having the worst rate per capita of neurologists in the "Western" world by a large margin says something, and it's not a good thing for anyone there who wants to get a proper neurological diagnosis any time soon. I thought the situation was bad in the uk (which it is), but this kind of stuff looks alarming... Is there much publicity about these shortages? It seems like there SHOULD be, but maybe people find other things to get excited about.
http://www.nationalepilepsycentre.ie/dynamicdata/epilepsyinireland.asp
http://www.irishhealth.com/article.html?id=9464
I wish you the best of luck anyway; it sounds like getting a diagnosis from the neurologist may be a long hard road, even if that IS what all the signs point to. It's possible in the circumstances that the psychiatrist may be reluctant to refer even if he does suspect seizures, as a matter of a policy of wanting to exhaust all other possibilities and drag things out before he refers you to the neurologist - who probably simply doesn't have the time to deal with all the people that need to see him. I do hope you get seen and get properly evaluated for temporal lobe symptoms soon - but if not, it's the system that's to blame, not yourself - so I hope you manage not to take it too personally if there are further delays and doubts.
In any case, I've found people here to be pretty supportive in general, so don't hesitate to come back if there's more you need.
thank you so much for your support - it means a lot to me. I am hoping things will work out in the new year for me with everything, my main aim is to get the drug induced psychosis diagnosis squashed and a referal to a neurologist (Santa if your listening, this is what i want for christmas lol!)... I will probably have many more questions and such in the new year so hope to chat again real soon! anyways, thanks again for your support and hope you have a happy christmas and new year! take care xx