[LOAx3]

I hope this is the right area for this...

First, I do not mind if any of this ends up in an article or anything - as a matter of fact, I think this should be explored further in order to enrich understanding in the mental health community (it's not addressed at all, that I can see, on the main site here) and in society as a whole.

My purpose for posting this here is twofold - to increase general awareness of this and to see what, if anything, any professionals or others who are 'in the same boat' might have to say.

Since I've been studying all things related to the brain and psychology, I discovered that individuals with Temporal Lobe Epilepsy (TLE) can sometimes have comorbid issues such as bipolar disorder, schizophrenia and/or psychosis.

According to the Wikipedia article (I know that's not entirely reliable, but I've found a few other - perhaps more reputable - sources which discuss behavioral/personality changes in those with TLE) there have been some patients who were misdiagnosed as having one of those three disorders when the real problem is TLE, or rather, the accumulative effects of having seizures can cause disruptions in the brain which can mimic these other mental issues.

This is a concern for me because I have TLE and it seems that I have exhibited some symptoms of schizophrenia or psychosis (if I'm to judge by some reactions from people that I interact with) - though I do not show said symptoms on a regular basis and of those that I do, I feel they are actually a result of other health problems (which cause mood swings, irritability, etc.) and I'm also a survivor of abuse - but that's another topic. In any case, I have never been diagnosed with these mental health disorders.

I should add that TLE and bipolar disorder/schizophrenia/psychosis CAN co-exist and not be related (in other words, one is not necessarily the cause of the other) - and of course, the mental disorders can certainly be present without a seizure disorder. Seizures can go undetected though, depending on the type (like Petit Mals can look like the person is just daydreaming).

That said, I feel that this is very important in terms of treatment plans and medications.

[Perna]

Hi, LOAx3, welcome to PsychCentral (PC).

Yes, lots, if not most, people here have had multiple diagnoses and gone through years of being misdiagnosed before finding a diagnoses that has "helped" them. There are others here with TLE too, hope they comment on this thread with their stories for you.

We all relate as peers here, from all walks of life. There is no research or anything done on this site/in these forums, they are support forums for people with various mental health problems themselves (or with friends/relatives who have mental health problems who they would like to know more about).

[shezbut]

Hi LOAx3

Welcome to Psych Central!

I have TLE myself, and am fully committed to increasing general knowledge in society about epilepsy. My epilepsy has impacted my life in countless ways ~ intimately and generally.

I have heard that those with TLE are at a higher risk for developing mental illness. This fact fascinated me, so I've studied the brain and brain illnesses extensively (for a "normal" person, not a doctor . The temporal lobe is in charge of awareness, storing information, emotions, basic desires (eat, sleep, sex), as well as Wernicke's speech area. When a complex seizure occurs, the hippocampus in the temporal lobe on both sides of our brains become involved in the activity. The hippocampus is the part of our brains that is responsible for storing memories. That is the reason why we cannot recall X amount of time of our activity/ behavior during the seizure. The seizures were not recorded in our memory because the area responsible for storing memories were involved in the misfiring.

One of the difficulties of TLE, other than typically being dificult to treat, is the damage that is done to our hippocampus'.

My seizures began in early childhood, but were not recognized and finally begun treatment until the age of 26. I thought that I was psychic, due to very frequent intense deja vu's. People didn't add 2 + 2 and figure it out back then. The result was extensive damage to my hippocampus in both temporal lobes. The size of my left temporal lobe was considerably small as well. Many medications and almost 10 years passed before I gave in to surgical removal of my focal point.

I have fought with major depression and self-hate throughout my life. However, I also have extenuating circumstances (S.A. and a very unhealthy family). Years after diagnosis and treatment, my cause of epilepsy has been determined to be a lesion in my brain ~ caused by an extensive fever around age 2. I had pneumonia and it was then that my parents discovered that pennicillin doesn't work for me. My parents have said that we drove for hours, up in Montreal, to get treatment for me.

I do lean towards borderline personality disorder. The surgery intensified those characteristics of my personality ~ making me more sensitive and extreme. Quick to emotions, including overwhelming.

That's my experience....best wishes to you!

[LOAx3]

Thanks Perna

Indeed. I meant that this particular issue is not addressed in the main articles on the site insofar as being related to the mental health issues described there and it should be due to the overlapping symptoms and people that are misdiagnosed - particularly since more and more people are reading sites like this and using it make a self-diagnosis (whether they seek professional assistance or not is another story, they can only be advised to do so) or to at the very least, understand what the problem is.

As far as research goes, I suppose it depends on what kind of research you're referring to. I can say that I'm researching something and mean that I am attempting to expand my knowledge - reading/learning about new things is research. That is generally what I mean when I use the word in relation to myself (though I did not in my OP). I'm interested in learning about these things to better understand how my brain works.

That really shouldn't be a problem as I was not suggesting that we participate in scientific experiments, data collection or analysis - which is what I think is meant by the prohibition of research here and I support/respect that.

I was suggesting that more psychologists, particularly the owners/contributors of the site (not the forums as I realize they are intended for support and I read the rules before posting), explore TLE and how it relates to mental health disorders. How they go about exploring it is their business.

I looked up schizophrenia symptoms and a disclaimer said that a person exhibiting them is not necessarily schizophrenic because there could be other factors involved (such as TLE or other neurological issues). I saw that the articles on this site said no such thing and thought it was a bit odd, not to mention incomplete. It's up to the site owner to add it or not, I just think it would be helpful if they did so, that's all.

I hope the others share their experiences with this as well. It helps to know I'm not alone.

[sabby]

Hi LOAx3,

Your "research" is absolutely fine here. You are researching for personal growth and information which is what most of us here have and are still doing. That's what we are all about at PC. Finding the information we need/want and making connections along the way

Indeed, the kind of research we do not allow is for students who are studying, data collection etc. You got that right!

I hope you find the information you are looking for.

Take good care!

[LOAx3]

Ack, sorry for the double post! I can't seem to edit to add this...perhaps after I'm out of the mod queue...??

Thanks to you as well, Shez!

I've had some psychic/intuitive experiences myself - dreams that came true days or months later, that sort of thing. They were not connected to seizures though as some things really did happen (dreams or 'passing thoughts' that came true days or months later and they were not hallucinations or delusions, they really did happen). It seems that there is quite a bit of discussion elsewhere that people with TLE are susceptible to such things and are frequently drawn to mysticism.

It seems that we have some similar circumstances. S.A., depression, extremely sensitive emotions. There is also bipolar disorder in my family, but I don't get manic and attribute the depression to my history and the problems I have with concentration (which makes working difficult, but I'm not severe enough to qualify for disability benefits). I also had febrile convulsions as an infant, which stopped after the last one at 18 months where I was said to be clinically dead for a few minutes.

I've never had brain surgery and my first grand mal happened when I was 18. I have not had a seizure for a few years now.

[salukigirl]

I also have TLE but I think some of that depends on the root cause. I played several sports from the time I could walk to now (I'm 23 now) and have suffered at least 5 concussions that I can recall immediately. I already have hearing issues due to damage done to the part of my brain that interprets speech. And it was brought up in my last appt with my neurologist that my TLE could very possibly have been brought on by continuous brain damage over the years of sports injuries.

In my case, I don't see any correlation between my TLE and any kind of schizo- or psycho- disorder. However, genetics that control brain disorders could very well be related.

My neighbor has schizophrenia and psychosis. He is on about a dozen different medications. But then he goes an smokes pot. I think he is an exception because I don't understand why you would smoke a drug considered a mild hallucinogen when you already have psychotic episodes?

Also, my TLE was described as "abnormal" by my neurologist. I don't lose consciousness. I get very lightheaded and feel deja vu sometimes but that's where the similarities stop. I then lose my vision, everything goes black, and I feel like I'm about to fall over. After my EEG it turns out that being tired is my 'trigger'. The test with the strobe lights and the breathing did nothing but when I fell asleep on the hospital bed my EEG went nuts I guess.

The thing to remember is that everyone is an individual. It's pretty difficult to make generalizations, especially about neurological disorders, because everyone experiences them differently. Not only that, but how I might describe an experience could be very different than how you describe it. So just the simple act of portraying your symptoms that can vary.

Since I was upped on my meds I haven't had any seizures, which has been about 2 months now

[GRUMPYPA]

Hello and welcome LOAx3, Its good to see someone with an interest in epilepsy I like many others have been affected by it. Ive lived with it for over twenty five years now having good runs on meds then hitting rock bottom. Unfortunately it has caught up with me now having a stroke and now early dementia but still annoying the wife. Epilepsy has never really been out in the open like diabetes or cancer and it can still be a killer. nice to meet you and hope you keep in touch

[shezbut]

Originally Posted by salukigirl

Also, my TLE was described as "abnormal" by my neurologist. I don't lose consciousness. I get very lightheaded and feel deja vu sometimes but that's where the similarities stop. I then lose my vision, everything goes black, and I feel like I'm about to fall over. After my EEG it turns out that being tired is my 'trigger'. The test with the strobe lights and the breathing did nothing but when I fell asleep on the hospital bed my EEG went nuts I guess...

Since I was upped on my meds I haven't had any seizures, which has been about 2 months now

Hi salukigirl,

Just wanted you to know that your experience of a complex partial seizure is pretty common. They tend to start with a scary deja vu, along with a strange "pins/needles" sensation throughout the body. At that point, we become only partially conscious. We lose sight, awareness and hearing. The physical weakness tends to kick in just as we are re-gaining awareness.

I've noticed that my sight comes back gradually, the area starts out dark and slowly becomes lighter. Sound is also a gradual sense recovered, and always comes a couple of minutes after sight (for me).

Triggers do vary for different people, but frequent triggers for all of us are: lack of sleep (HUGE trigger), stress (another BIGGIE), hyperventilation, flashing lights, physical stress. Some people are triggered by music even, but that is not a common thing.

Hope that seizure control is maintained well for you. Best wishes!

[salukigirl]

Shezbut - Thanks! I had been going to the doc for close to a decade without having a dx. I even went to a neuro. and asked about epilepsy and MS and he said that my symptoms were not typical of TLE. I told him about getting ringing in my ears and losing my vision but remembering it and he said that wasn't that common. Actually my GP was the one who ordered my EEG, not my neuro. And when he saw that I had 2 sharp waves from my temporal lobe, he said "well you may just have atypical epilepsy".

I thought my experiences were weird. That makes it even crazier that it took over 7 years to get a dx! I was told I was hypoglycemic, had hypothyroid etc... and all were misdiagnoses. Oh well. It's fixed now. Thanks for the info!

Hello and welcome!

It's great to see that you've taken an interest in learning more about TLE & co-morbid disorders. I have TLE and have been diagnosed with Bipolar Disorder, Borderline Personality Disorder, and OCD. I've only been diagnosed with these things for 2-3 years now. I have never been checked to see if my mental illnesses are due to my epilepsy. As far as my psychiatrist is concerned, they are mental illnesses independent of my neurological disorder.

[shezbut]

Originally Posted by salukigirl

Shezbut - Thanks! I had been going to the doc for close to a decade without having a dx. I even went to a neuro. and asked about epilepsy and MS and he said that my symptoms were not typical of TLE. I told him about getting ringing in my ears and losing my vision but remembering it and he said that wasn't that common. Actually my GP was the one who ordered my EEG, not my neuro. And when he saw that I had 2 sharp waves from my temporal lobe, he said "well you may just have atypical epilepsy".

I thought my experiences were weird. That makes it even crazier that it took over 7 years to get a dx! I was told I was hypoglycemic, had hypothyroid etc... and all were misdiagnoses. Oh well. It's fixed now. Thanks for the info!

((salukigirl))

You are welcome!

It's amazing to see how many neurologists aren't well-versed in epilepsy! There are so many different types of seizures (40+), but complex partials are pretty darn common. Too bad that you had to go 7 years before your GP finally brought up the possibility. My first neuro was kind of jerky, and it took my GP's assistance & interest to get me off Dilantin. It was causing a loss of sensation in my extremities, which is known to happen (but usually after many years on the med). My neuro, however, was adament that the Dilantin wasn't the cause for me. With my GP's back-up, the neuro gave in to getting me onto another med ~ and shazam! ~ I was able to regain feeling in my feet and fingers after a couple of weeks.

I was lucky, with my second, wonderful neuro who gracefully admitted that he wasn't experienced enough in E to manage my case. Thankfully, he was humble. He had tried me on several meds and dosages, to control my sz's, but just had no luck. He said that his knowledge of the brain and nervous system is more general. I required an epileptologist's treatment, in his opinion. There are, unfortunately, many neurologists who don't admit needing a specialist's help.

Thank goodness for the epileptologists in this world! They are neurologists who choose to specialize in diagnosis/treatment of seizure disorders. As a result, they are much more aware of the many types of seizures as well as various treatments. I highly recommend meeting up with an epileptologist to all people with E (unless the neuro has been terrific and very "on the ball")!

[lavieenrose]

Over 20 years ago, TLE was suggested to me but not diagnosed. I've had several potential brain traumas, anoxia at birth, and extremely high fever with Scarlet Fever at age 6. I've always had poor memory and concentration. About 3-4 years ago, I had the abrupt onset of a very weird symptom. One article called it an "i-pod in the brain", music that I hear, and cannot stop. It's very faint, and will loop continuously all day. I can think of another song, and that will take the place of the first, but that's all the control I have over it. It will fade if I'm in conversation with someone. If I listen to actual music, when it ends, I'll hear it faithfully reproduced in my head. Mercifully, the music fades as I fall asleep, but it returns within minutes of waking. It disappears for weeks at a time, but always returns. I occasionally smell a stale cigarette smell also. I don't know anything about TLE, other than odd sensory experiences can be symptoms. I'm seeing a neurologist, so maybe recent tests will reveal something.

[shezbut]

Originally Posted by lavieenrose

Over 20 years ago, TLE was suggested to me but not diagnosed. I've had several potential brain traumas, anoxia at birth, and extremely high fever with Scarlet Fever at age 6. I've always had poor memory and concentration. About 3-4 years ago, I had the abrupt onset of a very weird symptom. One article called it an "i-pod in the brain", music that I hear, and cannot stop. It's very faint, and will loop continuously all day. I can think of another song, and that will take the place of the first, but that's all the control I have over it. It will fade if I'm in conversation with someone. If I listen to actual music, when it ends, I'll hear it faithfully reproduced in my head. Mercifully, the music fades as I fall asleep, but it returns within minutes of waking. It disappears for weeks at a time, but always returns. I occasionally smell a stale cigarette smell also. I don't know anything about TLE, other than odd sensory experiences can be symptoms. I'm seeing a neurologist, so maybe recent tests will reveal something.

((lavienrose))

It certainly could be recurrent seizures. Some people have different types of symptoms. I know many people that have had the music following them. Very frustrating!

I've also heard others complain that music, from next door or whatever, will send them into a tonic-clonic seizure (aka: "grand mal").

The strange, yucky smell has been reported by many with TLE. Although the particular smell differs somewhat, it never smells good. I haven't ever heard a person say that they smell something delicious when a seizure is coming on.

Hope that your tests are conclusive and answers are found to treat your symptoms. Best wishes to you!

[lavieenrose]

Thanks Shezbut for your informative note of support.

[hentaywee]

A big thank you to LOAx3 for starting this thread. As well as others who have TLE and have responded. I was dx at age 12 with E, unknown when they started. But around the same time, along with all the symptoms that go with the sz's, I began to experience a lot of mental difficulties (depression, hypomania, mood swings, memory probs, etc.). My new pdoc changed my dx to bipolar disorder with anxiety just last year. So I too have been spending quite a bit of time learning about the possible links between them all. It's fascinating how my anti-convs are also used in the treatment of mental disorders. Looking back, there was definately a difference in my mental status when on Tegretol & Topamax. Since being weaned off both and now take Keppra & Lyrica, my moods have been a rollercoaster

Best Wishes to all living with multiple dx

[lavieenrose]

I still don't have a diagnosis, and the neurologist told me 2 days ago that the EEG's were "within normal". Still, he prescribed gabapentin, an anti-convulsant, for the musical pseudo-hallucinations, which he also called, "Musical Ear Syndrome". Very confusing. Just one pill is sedating. I'm supposed to increase gradually to 4 pills. That'll certainly stop the music, because I'll be asleep!