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Temporal Lobe Epilepsy?


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for the past few months, i've had jerky movements, back pain, and severe dizziness while also having psychological symptoms such as dissassociation (actually been going on for a few years now, but has gotten worse recently) and near psychotic symptoms as well. i also have a lot of muscle twitches and i get this weird sensation throughout my body as if electrical currents are shooting off everywhere. i have stereotyped movements such as rapidly moving my fingers up and down in a tapping motion, that seem to get worse at certain times- when i'm more stressed or even when i eat something or drink water. i came close to being diagnosed with schizophrenia a couple times, but mostly just for negative symptoms. nobody really knows what's wrong with me, but i think TLE might be causing it. thing is, i had an EEG and MRI done 3 years ago and nothing showed up. though i still think that might be what's wrong with me, but i'm not sure if a neurologist will even want to see me or believe me at all. so the question is, how hard is TLE to diagnose and what should i tell the neurologist in order for them to see me? thanks

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Well, the thing is...you NEED to see a neurologist...jerking movements, tingling, tapping of your hands...essp. when your stressed...could...and I stress the word 'could' be a sign of something wrong...but you need to see a doctor about this. I have JME, and it starts in my hands, and it is essp. bothersome when IM stress...but it has always shown up on an EEG...but, then again, if you are having more symptoms now...something might be more apt to show up on a test...

My advice would be to schedule a doctors appointment as soon as you can. As far as how hard TLE is to detect, well...it depends on your symptoms, and what shows up on your tests. A neuro will be able to diagnose...and as far as what to tell the neuro when you go in...EVERYTHING...keep a journal...tell him/her every symptom, medication, etc. Be detailed. Let him/her know this is very important to you, this is your health and you are concerned, and want to know whats going on. And as weaseltine said, don't go into the office self diagnosing...dont say "I have TLE..."or anything like that...just describe symptoms...leave the doctoring to the doctor...

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Thanks for the replies. I just feel so disconnected from my body and my mind all the time, that I'm almost positive it's not all in my head. I always feel like my mind just goes wild and I can never just be in the moment and enjoy anything, physically or mentally. This "anxiety" that I feel all the time persists even when I'm by myself, or not really doing anything that would provoke such feelings. I have this feeling of unrest as well where I just can't really seem to pay attention to much of anything and just be "there", if that makes any sense. I've tried SSRI's and Antipsychotics, but they mostly just made things worse (I've read that both can lower the seizure threshold). I think with the right medication i.e. an anticonvulsant, things might be able to return to normal. I'm just fearful that either a doctor won't want to see me or they won't be able to discover anything...but who knows. Hopefully things will work out.

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for the past few months, i've had jerky movements, back pain, and severe dizziness while also having psychological symptoms such as dissassociation (actually been going on for a few years now, but has gotten worse recently) and near psychotic symptoms as well. i also have a lot of muscle twitches and i get this weird sensation throughout my body as if electrical currents are shooting off everywhere. i have stereotyped movements such as rapidly moving my fingers up and down in a tapping motion, that seem to get worse at certain times- when i'm more stressed or even when i eat something or drink water. i came close to being diagnosed with schizophrenia a couple times, but mostly just for negative symptoms. nobody really knows what's wrong with me, but i think TLE might be causing it. thing is, i had an EEG and MRI done 3 years ago and nothing showed up. though i still think that might be what's wrong with me, but i'm not sure if a neurologist will even want to see me or believe me at all. so the question is, how hard is TLE to diagnose and what should i tell the neurologist in order for them to see me? thanks

<{POST_SNAPBACK}>

id say check with your neurologist and if you don't have one then talk to your primary doctor about your symptoms and see if s/he wants to make a referral to one.  also, are you currently taking medication?  some of the symptoms can be med-related.

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I'm not on any meds right now, but when I took Risperdal and Lexapro my symptoms only seemed to get worse.

<{POST_SNAPBACK}>

If you are having any sort of seizure problems...(have you been to the doc yet???need to get checked for this!!!)...both Lexapro and Riperdal can lower seizure threshold...I can't take either one. Matter of fact...I can't take any anti-depressants...and Im pretty med sensitive and have to discuss every med with my doc, that includes OTC and vitamins and supplements, with my doc b4 I think about taking them. I have never had a doctor refuse to see me based on symptoms I am having...if you tell a neuro your symptoms, he/she is genuinely treat your condition.

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  • 1 month later...

So I went to the neurologist and she really didn't seem to believe anything I said (I even told her about the finger tapping while drinking water and the jerky movements, but she chalked most of it up to "anxiety"), but she still agreed to give me an MRI and a 90 minute EEG. My question is, will the 90 minute EEG be long enough or if there is something wrong, might it not show up?

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So I went to the neurologist and she really didn't seem to believe anything I said (I even told her about the finger tapping while drinking water and the jerky movements, but she chalked most of it up to "anxiety"), but she still agreed to give me an MRI and a 90 minute EEG. My question is, will the 90 minute EEG be long enough or if there is something wrong, might it not show up?

Well, generally during the EEG they do various things that can potentially trigger activity. During the one they used to diagnose me last year, they started out by just having me lay there for a while and get unstimulated/"normal" readings, and then did a couple other things, like have me hyperventilate, and flashed a strobe light at me at various speeds.

In my case, it was during the strobe sections that the abnormal readings showed up (I have TLE, which is the most common kind of epilepsy, and it's photosensitive, which is actually fairly uncommon, despite the stereotypes). Anyway, 90 minutes is a decent/standard amount of time, and they'll probably try to encourage your brain to act up, since they can't really afford to keep everyone there to monitor them for a week-long EEG to see what happens.

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  • 4 weeks later...

I'm fucked. So everything came back fine on the MRI (said there was a lot of sinus stuff though) and EEG but I know that there's something neurologically wrong with me. All this shit that's been happening over the past months/years can't be a coincidence. The dissassociation, paranoia, back pain, jerky movements, repetitive shit like grinding my teeth or rolling my eyes in my head, whatever. I couldn't even fall asleep during the EEG and it only lasted an hour at most. I can't go on any longer feeling like this but of course no other doc will ever take me seriously or give me any more tests; they'll just continue to say it's "all in my head." even though the ssris and antipsychotics only made me feel worse, like i was going to pass out, and made the feelings of fear plus back pain and shit worse. fuck i dont know what to do anymore. I really don't. This is bullshit

Everytime I feel an emotion it's always to the extreme and my back will start hurting or I'll start shivering for no reason plus my finger will start twitching and I'll start feeling dizzy as well. I came so close to being diagnosed as having a psychotic disorder and then POOF! all of a sudden those symptoms go away and the doctors are stumped. This has to be something neurological but who fucking knows if I'll ever get any answers

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I'm fucked. So everything came back fine on the MRI (said there was a lot of sinus stuff though) and EEG but I know that there's something neurologically wrong with me. All this shit that's been happening over the past months/years can't be a coincidence. The dissassociation, paranoia, back pain, jerky movements, repetitive shit like grinding my teeth or rolling my eyes in my head, whatever. I couldn't even fall asleep during the EEG and it only lasted an hour at most. I can't go on any longer feeling like this but of course no other doc will ever take me seriously or give me any more tests; they'll just continue to say it's "all in my head." even though the ssris and antipsychotics only made me feel worse, like i was going to pass out, and made the feelings of fear plus back pain and shit worse. fuck i dont know what to do anymore. I really don't. This is bullshit

Everytime I feel an emotion it's always to the extreme and my back will start hurting or I'll start shivering for no reason plus my finger will start twitching and I'll start feeling dizzy as well. I came so close to being diagnosed as having a psychotic disorder and then POOF! all of a sudden those symptoms go away and the doctors are stumped. This has to be something neurological but who fucking knows if I'll ever get any answers

Normal MRI is not equal to normal brain. It only means worms (or a psychotic episode) didn't eat your brain. However, in many cases depression or psychosis would show up somehow on MRI (as, for example, enlarged lateral ventricles due to hippocampal atrophy).

There are also cases when epileptic person has normal EEG, although it's probably rare now they have these high resolution machines with analysis tools etc

Have you noticed any patterns with that or something? Like, particular tasks, environment, emotions, food?

Sinus stuff may influence things too. As can many other medical conditions.

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I've noticed that things seem to get worse i.e. finger twitching and feeling extra anxious/jittery whatnot when I drink water or eat food (not always anything in particular). A lot of times when I feel a certain emotion it's very intense and I start to feel like I'm going to pass out and it's hard to control what I feel most of the time (And I used to always be good at handling myself in that area). Today while on break at work I was just sitting and the sun was in my eyes, and I felt the muscles in my face clinching up as the jittery feelings came back again. I guess I could try to see another neurologist, maybe for a longer EEG, but who knows how long that'll take.

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  • 1 month later...

Is it possible to have a normal EEG but a positive PET? I'm almost positive that I have something neurologically wrong with me, but the last EEG I took was negative as well. I started having various symptoms during the test such as jerky movements and the various automatisms and it was videotaped too but the doctor said that there was no evidence of seizures (I even took a couple antidepressants beforehand so I would have the jerky movements, which made my symptoms worse). Maybe it's just a really subtle form of Temporal Lobe Epilepsy, but I don't know what to do and I'm running out of options. My life is basically in shambles because I feel like a zombie every day and am so disassociative. The neuro wants to recommend me to a psych but I've seen various ones throughout the months and they haven't helped at all. I have no idea what I can do anymore...

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Takabe,

I myself am a 26yr old with TLE-bipolar-synaesthesia-Geschwinds and your story is one i have myself recently endured, and i beleive i can offer some advice. I have had similar symptoms to you my whole life, and these symptoms got worse in my early twenties. Despite my atheism, i have had several "near death experiences" and have perceived "heaven and god" in my fits, deja vu, vivid hallucinations ( as a child for example, i would often hallucinate my parents morphing into animals), bout of "capagras" (beleiving people are imposters) and several other equally bizzare seizures , its not suprising i too think i am going crazy sometimes!. i recently got out of hospital with severe death anxiety after having 8 bizzare fits in a day, which is a common symptom around "seizure time". When i was diagnosed The first 2 EEgs came back negative, likewise MRI-CT scans, so instead they sent me to a mental home (against my will) for two weeks, and later again, and later again. "Face facts jim" they'd tell me "your a pre-schizophrenic with bipolar, accept this reality", "ive been this way my whole life though, pre-schizophrenic for 20 yrs?" theyd glare at me "yes your are ". The third time they locked me up, for the crime of being open about my experiences of "god" and "heaven",i sat overlooking the park at the mental home, it was raining and about 11 at night, and a procession of nude men began to play (rather latently homosexual!)rugby in the rain! i wasn't "seizing"or anything. Okay jim i said, this is the turning point, face it this (nude rugby in the rain at night) is very unlikely, if you were schizophrenic you wouldn't know, you are hallucinating, and cannot distinguish reality! I cried, i thought of my future, kids, career, it sank in, i am now a schizophrenic, i looked over at the nurse, knowing that if she said there was no nude rugby being played, my life would take a much more difficult course, and this would be confirmed in a flutter of her tongue. I braced myself and asked her,"actually yes they are, and have been for the past half hour" she said. I felt a sense of both relief and resentment, Psychologically they had been drumming "schizophrenia" into me for so long, with such carelessness, i believed it to the point of severe depression, no counselling on the implications of this, just endless "drilling" on my lack of acceptance. My family knowing me well insisted it was TLE, knowing i am too aware of my experiences as anomalous, as opposed to being legitimate "objective" experiences, they flew to Sydney, quite upset at my predicament. I now refused to take the anti-psychotics,i too realised they made me more psychotic! (they tend to be stimulants). My family got angry and dare i say quite forceful in their views about my treatment. It was quite clear at this point, i had fallen through the "cracks" of the health system, probably due to the "anomality" of my condition. I had a week long EEG. And then it turned from "your not epileptic your a schizophrenic in denial take these (stimulants)" to "your a chronic temporal lobe epileptic (100 seizures a yr) with a chip on your shoulder". By this point i was near traumatised and angry with my medical treatment, the wasted 2 yrs of my life etc, and now I couldnt drive (but thats ok!) And thus began a long trial of drugs, all of which were horrible, and none of which worked! TLE is notoriously drug resistant, they talked of lobotomy,( err my friend died having one, is it worth the risk?, maybe? prob not?). I bored myself to death with the neurology/psychology of TLE, (check "the neuropsychological bases of god beliefs" Michael Persinger, "Seized" Eva laplante, Chp8 "phantoms in the brain" v.s.Ramachandran, theres is more also! newberg & d'aquili). I have gotten over the trauma of my "prolonged diagnosis", which is funny in light of the fact I went in trying to get over the trauma of my condition! It is hard Takabe, and i feel your pain and torment, i was there with you.

As i say im no doctor, and it would be irresponsible for me to say you def' have TLE, but as aTLE sufferer and in light of my experience, i feel it is probable.

EEGs read the activity on the surface of the brain, the temporal lobes by contrast lie deep within the brain and this can make diagnosis difficult. In additon you must be seizing at the time of the recording, and to aid this i would recomend staying up late, coffee-stimulants, hypoxia, hypoclycemia, and generally fucking yourself up with fatigue for the sake of being done with the "stasis" of diagnosis, i feel your pain (with the lack of direction and diagnosis, it is hard to have hope for the future). That said, it is possible the electricity may still not appear on the surface electrodes in any identifiable manner. Takabe we are strange people, us TLE sufferers, we live with a schizophreniform illness (but not schizophrenia), we have strong emotions, strange ways of thinking, unusual complusions, visions- hallucinations and can because of these factors and others feel isolated and different. Yet we lie merely at one end of the continuim of humanity, albeit a strange one, rather than an isolated pocket. Many great artists, composers, philosophers, writers and scientists have also, if not directly suffering from TLE had many similar experiences, it maybe true their lives were a little harder, but it might also be said, their discoveries and creations are all the more subtle & enriched because of it. In the throes of anguish it can be hard to discern the benefits, but remember, my friend of the gift you are to humanity, you are a good person and a good friend, and if you hold this close to your heart there is always hope,

Try and get a week long EEG and hopefully youll clear this saga up!

I understand what you've been through and it aint easy but i can tell you are strong person Takabe, just hang in there, i know youve got it in you!!

Don't hesitate to contact me if you want to talk either mate,

yours truly,

jamessherringhamATyahooDOTcomDOTau

[edit: changed email format ~navy~]

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Takabe-

This is my concern. In an effort to just be done with it and have a diagnosis you really seem to be pushing for any sort of result that will just give you a quick answer. I don't think there is one. I think you should take the referral that the neuro wants to give you and go. You're unhappy and disconnected and it doesn't seem like you have been interested in receiving much help from psychiatrists- maybe that is why it hasn't made much of an impact. Your options do become more and more limited as you reject the help you are offered. You need to seriously explore this avenue of treatment also and you seem to be out right rejecting it, though it can be helpful in many different ways. There may be more than one thing going on- physically/neurologically, emotionally/psychologically, and a pdoc can help you also look into things like neuropsych testing which can help you and the pdoc figure out if there are any specific areas of concern. But if you entirely reject any psychiatric component to your symptoms, whatever they may be, you are not going to improve.

At this point you seem so overtaken by anxiety and preoccupied with what may or may not be wrong with you that you need to get other help and maybe put the neuro stuff on hold for a bit. If you are at the point where you are trying to induce symptoms with medications, you have to take a step back. You might just be exhausting yourself right now, maybe you just want a fucking solution to everything. Sometimes the harder we push, the harder it is for us to continue. It can take a while to untangle and you can't just show up at one doctor's office and say "Fix all of me now."- you will likely get pointed to the exotic species section for further study. Our bodies effect our brains which effect our minds but we have to figure out how and why.

There is rarely just one thing happening and often it is not quite what you suspect. If you aren't sure what to do, go see who ever this person is that your neuro is recommending and give it a serious chance for a while. Not all pdocs are the same. Sometimes all you can do is give doctors a chance to work with you in figuring things out. We don't come with a handbook. No one would be able to lift it.

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I never said that I was rejecting the thought of seeing a psychiatrist. I started seeing one over the past few months on my own accord and the only reason that I stopped was because of insurance problems. I know that counseling can help, but I'm almost positive that there's something physically wrong with me that hasn't been found yet. I've tried antipsychotics and antidepressants, which only made things worse like I said. Antipsychotics made me feel more dissassociative and actually more psychotic, and the SSRI's gave me weird feelings in my stomach and made me feel a false sense of euphoria. I've been having some of these symptoms for three years or more, but things started getting really bad over a year ago and my search for answers has been going on since then. This isn't something I can undo by myself; I know I need medication. But even if I'm offered a mood stabilizer/anticonvulsant for my problems with controlling my emotions, I'd refuse because I know this is physical as well as mental. This isn't a "fix me all now" thing either. I've been going through absolute Hell for the past 12 months and I just want some answers. I wasn't working for 7 months because I felt so shitty physically and mentally, but I sucked it up and got a fulltime job just so I could get insurance and just so I could see a neurologist and have those tests done, which took a total of 5 months. I know I'm coherent enough to not be psychotic or too out of it (at least in the day time; it gets worse at night), but I'm also aware enough to know that something is wrong that goes outside the bounds of it just being "all in my head." I did think I was going Schizophrenic at first when my symptoms started to get really bad. I worried and worried and started seeing a few counselors, but they told me "No, you're not schizo." And then a few months later they thought it was a possibility and referred me to a Study for Schizophrenia and I was almost diagnosed with being Schizo, even though nobody would listen to me when I first shared my concerns. Nobody was quite sure, but I finally realized that I wasn't Schizo because I was so aware of what was going on and wasn't technically psychotic either. It was the same case with antipsychotics. I pleaded for the doctors to put me on Risperdal again and again because I felt so paranoid and basically out of it, but they kept telling me to wait and see how things progress. Finally, a few months later they told me that I had to be on some kind of antipsychotic because I might be going Schizo. The antipsychotics only made me feel ten times worse, so I stopped and the doctors got mad even though they were the ones who were so hesitant in the first place to give them to me. After a while, I accepted the fact that I might be going Schizophrenic and could live with that; it was only the part about not knowing for sure that drove me crazy. (Something similiar happened throughout 11th grade when I started feeling dissassociative and had a lot of physical problems. All the doctors told me it was all in my head, but then I found out in 12th grade I was highly allergic to corn and wheat and once I stopped eating those things I started feeling better physically and also a lot less dissasssociative and pararnoid as well)

I guess my point is that doctors make mistakes, and I'm aware of what all is going on so much and from what I've read, more than likely it is something neurological. I'm not trying to change anyone's minds; I stopped caring about that a long time ago. I just want answers.

And I know this is more than just anxiety. I feel so detached mentally and physically and so jittery when I'm just doing any normal activity like watching tv or listening to music where there's nothing that would provoke any sort of anxiety.

All of this started happening for no real reason at all. I just want to get back to feeling like myself and doing the things that I once enjoyed doing. If I continue on like this much longer who knows what'll happen

I may be selfish, but I do want something done NOW. It took me 3 months just to get insurance, and another 2 to see a neurologist and pretty much 2 more just to get the tests done. It's easy to tell someone to "hold on" and have patience when they don't have to go through the shit you do every day of their lives. (Not directing that towards you, just in general). I can't hold on much longer, but I know I might have to either way. Irony is a bitch, isn't it?

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