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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 2 to 26 of 26. Go back in thread:
Posted by Elizabeth on May 18, 2001, at 21:01:16
In reply to Temporal Lobe Epilepsy-anyone out there?, posted by Mitch on May 18, 2001, at 11:46:40
> Does anyone out there have a *confirmed* diagnosis of Temporal Lobe Epilepsy or know someone that does?
I know someone who does, yes. She also has been diagnosed with rapid-cycling bipolar II disorder with dysphoric hypomanias and borderline personality disorder. She has occasional hallucinations and illusions, as well as spells when speaking is very difficult for her (often associated with the hallucinations).
> I went through a TLE checklist and went to the ADD checklist site and came up with an ADD diagnosis with "temporal lobe problems" response.
Me too, but there's never been any conclusive evidence that I have any sort of epilepsy (3 EEGs (one sleep-deprived, one 24-hour), 3 MRIs, all unremarkable. (However, I *still* haven't gotten my hospital records with the writeup about my SPECT scan, which I have been told was abnormal in some really obvious way.)
> Anyway here are some of the symptoms I experience and have experienced with various medications:
>
> 1) Occasional explosive temper with a lot of autonomic arousal followed by panic anxiety and depression."Anger attacks" are common in some kinds of depression. They are occasionally associated with TLE but I think this is very rare.
Treatment approaches for anger attacks include, on the one hand, serotonergic antidepressants (SSRIs, MAOIs, Effexor, etc.), or, on the other, mood stabilisers (lithium, valproate, carbamazepine, etc.). It's hard to predict which will work for whom.
> 2)Constant gastrointestinal problems that seem to worsen and coexist with the mental phenomena.
Ever heard of "irritable bowel syndrome?"
> 3)I like to write a lot (as you can see). I am a technical writer where I work and can type 115 wpm.
I don't think this is pathological.
> 4) I don't get deja vu, I just found out the experience I rarely get is *jamais vu*. An unusual feeling of strangeness in a familiar place.
Me too; it's associated with panic attacks in my case. An alternate word for the experience might be "derealisation."
> 5) Rare mystical experiences-specifically brief intense feelings that God is right there with me (not talking to me or anything-just the *feeling* of presence).
A lot of people have had these, not just epileptics. It's something that has always interested me, although I've never experienced it myself.
> 6) Feelings of changes of scale around me. Everything seeming "bigger" or "smaller". Kind of like getting new eyeglasses. Usually when I change or add a med.
I think this is related to the spacy, unfamiliar, unreal feeling you described above (#4).
> 7) Changes in perception of color intensity with different meds. For some reason Prozac and especially Effexor made colors very very vivid-red almost glowed!
OK, that's just weird. I have no idea what to make of it.
> 8) All SSRI's seem to intensify my ability to hear music in my head (carry a tune around). I can *wakeup* with music playing! I could play music sometimes on Prozac and hear *other* music playing with it that was not there!
I have had something similar happen while on MAOIs, in particular Nardil and Marplan. I don't know what causes it. I've met a couple of other people who experienced this side effect on MAOIs.
> 10)When I was taking Effexor I was frequently smelling things that weren't there. I would be at work and smell something and mention it and noone else could smell it.
It's possible you just have a better sense of smell than most people, although olfactory hallucinations are considered to be very suggestive of TLE.
What kind of smells were they?
> 11) All SSRI's also have this tendency to produce a knee-jerk laughter response to all sorts of stuff.
Sounds like marijuana to me!
> I was off of all AD's for a while and was taking Adderall and that STOPPED and my head was very "quiet"-my mood cycling also stopped.
Lots of people find that stimulants have this effect. I conceptualise it as being able to keep up with your racing thoughts. Whatever the cause, it's common with ADD-spectrum conditions.
Book recommendation: _Dysthymia and the Spectrum of Chronic Depressions_ by Akiskal and Cassano.
> 13)I recently added a low dose of Lithium to my meds and I experienced a couple of episodes where I noticed what looked like a "black hole" in my peripheral vision and it shrank and dissappeared suddenly, very odd.
I think illusions are pretty common with lithium.
Tremor is a common side effect of most ADs.
> 14)I took a single 37.5mg dose of Effexor one time and experienced a full-blown manic episode about an hour after taking it, but it just lasted for an hour or two.
My pdoc says he finds "side-Effexor" to be one of the worse culprits in inducing mania. I had a very serious episode on Effexor XR. Another time, when I tried regular Effexor (immediate-release) 37.5mg, I started shaking violently all over.
> 15)I have had people tell me that my facial expressions seem to change a lot-and I am not really aware of it.
I think that's natural. People communicate a lot through facial expressions, and they aren't always aware that they're doing so.
> 16) When I was a teenager (and now at times) I had a big problem with echolalia (I would repeat out-loud and sometimes unknowingly the last word of every sentence that someone was speaking to me).
I think this is associated with some types of schizophrenia. I don't know much about it, though.
> 17) My mother had generalized nocturnal seizures and my sister had severe dyslexia and temper problems. My dad was temperamental and both his eyes would get to "jiggling" especially when he was upset-to the point where he couldn't hardly drive.
That's called nystagmus (the vibrating eyeball thing). I think that the tendency for epilepsy and ill temperedness in your family may both be contributing to your emotional problems and perceptual quirks.
Sorry I couldn't be of much help. I hope you will check out that book; it includes discussions of the concept of "characterological"/"neurotic"/"atypical" depression, depression associated with ADD, residual and premorbid schizophrenia, etc. I think you might find something in there applicable to you.
A lot of people do have weird perceptual disturbances on ADs. If it's mainly a side effect, I don't think it indicates epilepsy. My suggestion would be to show your list to your pdoc or GP and ask if s/he thinks you could use a referral to a neurologist.
-elizabeth
Posted by zeke on May 18, 2001, at 21:21:39
In reply to Temporal Lobe Epilepsy-anyone out there?, posted by Mitch on May 18, 2001, at 11:46:40
I had nocturnal temporal lobe seizures when I was a teenager. But I've known a number of other people with epilepsy and with 'epileptic' personality or behavioral characteristics.
First I want to say that the psychiatric aspects of epilepsy are very controversial and not universally accepted. (It is much less frequent with modern antiseizure meds; Most people with complex partial aka temporal lobe epilespy don't have this syndrome.) So you might choose the neurologist carefully. A neuropsychiatrist or behavioral neurologist might be a better choice.
Second, an EEG could demonstrate epilepsy, but a normal EEG can't rule out epilepsy. A number of people with clear-cut clinical seizures have 'normal' EEGs. The medial temporal lobe -- where temporal lobe seizure foci usually occur -- goes deep in the brain and away from the scalp where the electrodes are placed.
You're right, people with TLE syndrome often exhibit hypergraphia (write a lot) and also verbosity -- often described as "sticky". They very often develop deep religious (or philosophical) interests and corresponding deepened morality. Sexuality is often effected, most often hyposexual but sometimes hypersexual. These folks are described as usually being "good natured" such as attempting to be unusually helpful to others. You mentioned anger: in TLE syndrome anger isn't generally so short-lived as in ADD. Anger becomes grudges for example.
Several things you mention are similar to epileptic auras -- the beginning of a seizure that may or not develop to a clinical seizure. Smells in particular. These are usually described as sickening, burning or rotting. Depersonalization or derealization is also common (but also common in anxiety or mania).
The ability of antiseizure drugs to relive TLE behavioral symptoms seems to be mixed. In some people they help. But in people with longstanding clinical seizures, as the seizures become controlled (with meds) the psych problems sometimes become worse. In such folks they often reduce seizure control for the sake of mental relief. (In fact this relationship led to the discovery of induced seizures to relieve depression: initially using insulin but then electricity -- ECT.)
Did either the Neurontin or Adderall improve the TLE related symptoms? Neurontin is used in psychiatry but it is marketed for partial epilepsy. Amphetamine (Adderall) also has antiseizure effects. In fact, it sounds like you did best (so far) when you were on Adderall. Neurontin and Adderall also are reported to have antimanic effects as well.
Another option to an ambulatory EEG would be a standard EEG with Nasopharengic or Sphenoidal leads. These are more sensitive to the medial temporal lobes.
Good luck.
Posted by niss on May 18, 2001, at 21:36:26
In reply to Temporal Lobe Epilepsy-anyone out there?, posted by Mitch on May 18, 2001, at 11:46:40
I just finished reading an excellent book called "Healing ADD". It describes the 6 types of ADD, Temporal Lobe included. It goes into great detail and actually shows brain imaging for the differnt types of ADD. Additionally,it discusses epilepsy in that area. It actually discusses, again in great detail, the proper medications for each area. Anticonvulsants appear to be the most effective for the temporal lobe area. I looked into the brain imaging and found that it costs $1000 for each image and you pay first and then submit to your insurance. Although, often it is not needed. It also discusses head injuries and ADD or problems that result from these injuries.
I purchased the book off of amazon.com. Really good!
You may be able to get information on the website:
www.amenclinic.comI hope this helps!
niss
> Does anyone out there have a *confirmed* diagnosis of Temporal Lobe Epilepsy or know someone that does? I want some input, please! If anybody knows a neuro could you show this to them and get their response? I went through a TLE checklist and went to the ADD checklist site and came up with an ADD diagnosis with "temporal lobe problems" response. I started thinking about some of my symptoms and am reconsidering getting that 24-hour ambulatory EEG (just got a new MasterCard maybe that will cover what the insurance won't pay!) Anyway here are some of the symptoms I experience and have experienced with various medications:
>
> 1) Occasional explosive temper with a lot of autonomic arousal followed by panic anxiety and depression.
> 2)Constant gastrointestinal problems that seem to worsen and coexist with the mental phenomena.
> 3)I like to write a lot (as you can see). I am a technical writer where I work and can type 115 wpm.
> 4) I don't get deja vu, I just found out the experience I rarely get is *jamais vu*. An unusual feeling of strangeness in a familiar place.
> 5) Rare mystical experiences-specifically brief intense feelings that God is right there with me (not talking to me or anything-just the *feeling* of presence).
> 6) Feelings of changes of scale around me. Everything seeming "bigger" or "smaller". Kind of like getting new eyeglasses. Usually when I change or add a med.
> 7) Changes in perception of color intensity with different meds. For some reason Prozac and especially Effexor made colors very very vivid-red almost glowed!
> 8) All SSRI's seem to intensify my ability to hear music in my head (carry a tune around). I can *wakeup* with music playing! I could play music sometimes on Prozac and hear *other* music playing with it that was not there!
> 9)When I was taking Prozac, and someone handed me a report to read at work and I knew the author (talked with them knew their voice and mannerisms), I could read it and "hear" *their* voice reading it in my head-just like THEY were reading it to ME.
> 10)When I was taking Effexor I was frequently smelling things that weren't there. I would be at work and smell something and mention it and noone else could smell it.
> 11) All SSRI's also have this tendency to produce a knee-jerk laughter response to all sorts of stuff. I was off of all AD's for a while and was taking Adderall
> and that STOPPED and my head was very "quiet"-my mood cycling also stopped.
> 12) Whenever I get tremor from a medication it is *always* on my left side-never the right. And it is usually in my hand/fingers and face/eyelids. Also esp. on SSRI's I have a "tingling patch" on my shoulder just to the left of my spinal column.
> 13)I recently added a low dose of Lithium to my meds and I experienced a couple of episodes where I noticed what looked like a "black hole" in my peripheral vision and it shrank and dissappeared suddenly, very odd.
> 14)I took a single 37.5mg dose of Effexor one time and experienced a full-blown manic episode about an hour after taking it, but it just lasted for an hour or two.
> 15)I have had people tell me that my facial expressions seem to change a lot-and I am not really aware of it.
> 16) When I was a teenager (and now at times) I had a big problem with echolalia (I would repeat out-loud and sometimes unknowingly the last word of every sentence that someone was speaking to me).
> 17) My mother had generalized nocturnal seizures and my sister had severe dyslexia and temper problems. My dad was temperamental and both his eyes would get to "jiggling" especially when he was upset-to the point where he couldn't hardly drive.
> 18) I take low-dose Neurontin, but when I was on higher dosages I could wake up in the morning and it was like my entire visual field was "cleaned" or "windexed". I could close my eyes and it would be black-no "snow" or "noise" in there-very weird.
>
> Sorry for the long post-I am going to get my pdoc to do a referral to a neuro-I feel like I just have to know now one way or the other.
Posted by niss on May 18, 2001, at 21:38:11
In reply to Temporal Lobe Epilepsy-anyone out there?, posted by Mitch on May 18, 2001, at 11:46:40
ps-
in addition, the book has a list of doctors (neurologists, ect) for every state listed in the back.> Does anyone out there have a *confirmed* diagnosis of Temporal Lobe Epilepsy or know someone that does? I want some input, please! If anybody knows a neuro could you show this to them and get their response? I went through a TLE checklist and went to the ADD checklist site and came up with an ADD diagnosis with "temporal lobe problems" response. I started thinking about some of my symptoms and am reconsidering getting that 24-hour ambulatory EEG (just got a new MasterCard maybe that will cover what the insurance won't pay!) Anyway here are some of the symptoms I experience and have experienced with various medications:
>
> 1) Occasional explosive temper with a lot of autonomic arousal followed by panic anxiety and depression.
> 2)Constant gastrointestinal problems that seem to worsen and coexist with the mental phenomena.
> 3)I like to write a lot (as you can see). I am a technical writer where I work and can type 115 wpm.
> 4) I don't get deja vu, I just found out the experience I rarely get is *jamais vu*. An unusual feeling of strangeness in a familiar place.
> 5) Rare mystical experiences-specifically brief intense feelings that God is right there with me (not talking to me or anything-just the *feeling* of presence).
> 6) Feelings of changes of scale around me. Everything seeming "bigger" or "smaller". Kind of like getting new eyeglasses. Usually when I change or add a med.
> 7) Changes in perception of color intensity with different meds. For some reason Prozac and especially Effexor made colors very very vivid-red almost glowed!
> 8) All SSRI's seem to intensify my ability to hear music in my head (carry a tune around). I can *wakeup* with music playing! I could play music sometimes on Prozac and hear *other* music playing with it that was not there!
> 9)When I was taking Prozac, and someone handed me a report to read at work and I knew the author (talked with them knew their voice and mannerisms), I could read it and "hear" *their* voice reading it in my head-just like THEY were reading it to ME.
> 10)When I was taking Effexor I was frequently smelling things that weren't there. I would be at work and smell something and mention it and noone else could smell it.
> 11) All SSRI's also have this tendency to produce a knee-jerk laughter response to all sorts of stuff. I was off of all AD's for a while and was taking Adderall
> and that STOPPED and my head was very "quiet"-my mood cycling also stopped.
> 12) Whenever I get tremor from a medication it is *always* on my left side-never the right. And it is usually in my hand/fingers and face/eyelids. Also esp. on SSRI's I have a "tingling patch" on my shoulder just to the left of my spinal column.
> 13)I recently added a low dose of Lithium to my meds and I experienced a couple of episodes where I noticed what looked like a "black hole" in my peripheral vision and it shrank and dissappeared suddenly, very odd.
> 14)I took a single 37.5mg dose of Effexor one time and experienced a full-blown manic episode about an hour after taking it, but it just lasted for an hour or two.
> 15)I have had people tell me that my facial expressions seem to change a lot-and I am not really aware of it.
> 16) When I was a teenager (and now at times) I had a big problem with echolalia (I would repeat out-loud and sometimes unknowingly the last word of every sentence that someone was speaking to me).
> 17) My mother had generalized nocturnal seizures and my sister had severe dyslexia and temper problems. My dad was temperamental and both his eyes would get to "jiggling" especially when he was upset-to the point where he couldn't hardly drive.
> 18) I take low-dose Neurontin, but when I was on higher dosages I could wake up in the morning and it was like my entire visual field was "cleaned" or "windexed". I could close my eyes and it would be black-no "snow" or "noise" in there-very weird.
>
> Sorry for the long post-I am going to get my pdoc to do a referral to a neuro-I feel like I just have to know now one way or the other.
Posted by judy1 on May 18, 2001, at 21:47:46
In reply to Temporal Lobe Epilepsy-anyone out there?, posted by Mitch on May 18, 2001, at 11:46:40
Yes, me, with the bipolar, panic, PTSD, dissociation... Actually TLE covers a lot of the symptoms and really isn't that unusual with a bipolar and/or panic dx. My shrink sent me to an epileptologist (sp?) the naso-pharangeal EEG sucks, and the 24hr is just boring. The MGH site has lots of good info on their epilepsy forum- and lots of bp disordered people posting (me included). The treatment is all the same Mitch it's just the semantics. Best of luck- judy
Posted by Sunnely on May 18, 2001, at 23:14:10
In reply to Temporal Lobe Epilepsy-anyone out there?, posted by Mitch on May 18, 2001, at 11:46:40
Hi Mitch,
Only a thorough neurological history, examination, and lab tests can provide a more accurate diagnosis of temporal lobe epilepsy (TLE) or complex partial seizures.
Here's my own 2 cents:
Based on your info, I noticed a couple of symptoms that may (but not necessarily diagnostic) indicate TLE:
1. Feelings of "jamais vu."
2. Hypergraphia (writing a lot). Not an uncommon inter-ictal characteristic of TLE.
3. Hyperreligiosity or preoccupation with God. Not an uncommon inter-ictal characteristic of TLE.
4. ? Olfactory hallucinations (smelling things others don't).
5. Gastrointestinal problem that seem to co-exist with the mental phenomena.
In TLE cases, numbers 4 and 5 above may indicate "aura," the pre-seizure activity phase. Some patients would experience intense olfactory hallucinations that in most cases are unpleasant (e.g., smell of rotten eggs or burnt toast or burning rubber). Some patients may experience epigastric pain, a queasy epigastric feeling described as "butterflies," and other similar visceral sensations. This "aura" may last for a few minutes then the actual seizure activity may follow. This is usually manifested by numerous stereotyped motor behaviors ("automatisms") such as picking at clothes, wandering around the room, uncontrollable running, rearranging furniture, lip smacking, and eye blinking. During this time, the patient is oblivious to his surrounding, would not respond to calling his name or attention, and does not lose consciousness unless the seizure progresses to a generalized motor seizure. After the seizure activity, the patient has no recollection of the event.
With a family history of seizures, having further neurological exam and tests, IMHO, would be a good idea. In TLE cases, EEG results are often normal inter-ictally (in-between seizures).
+++++++++++++++++++++++++++++++++++
> Does anyone out there have a *confirmed* diagnosis of Temporal Lobe Epilepsy or know someone that does? I want some input, please! If anybody knows a neuro could you show this to them and get their response? I went through a TLE checklist and went to the ADD checklist site and came up with an ADD diagnosis with "temporal lobe problems" response. I started thinking about some of my symptoms and am reconsidering getting that 24-hour ambulatory EEG (just got a new MasterCard maybe that will cover what the insurance won't pay!) Anyway here are some of the symptoms I experience and have experienced with various medications:
>
> 1) Occasional explosive temper with a lot of autonomic arousal followed by panic anxiety and depression.
> 2)Constant gastrointestinal problems that seem to worsen and coexist with the mental phenomena.
> 3)I like to write a lot (as you can see). I am a technical writer where I work and can type 115 wpm.
> 4) I don't get deja vu, I just found out the experience I rarely get is *jamais vu*. An unusual feeling of strangeness in a familiar place.
> 5) Rare mystical experiences-specifically brief intense feelings that God is right there with me (not talking to me or anything-just the *feeling* of presence).
> 6) Feelings of changes of scale around me. Everything seeming "bigger" or "smaller". Kind of like getting new eyeglasses. Usually when I change or add a med.
> 7) Changes in perception of color intensity with different meds. For some reason Prozac and especially Effexor made colors very very vivid-red almost glowed!
> 8) All SSRI's seem to intensify my ability to hear music in my head (carry a tune around). I can *wakeup* with music playing! I could play music sometimes on Prozac and hear *other* music playing with it that was not there!
> 9)When I was taking Prozac, and someone handed me a report to read at work and I knew the author (talked with them knew their voice and mannerisms), I could read it and "hear" *their* voice reading it in my head-just like THEY were reading it to ME.
> 10)When I was taking Effexor I was frequently smelling things that weren't there. I would be at work and smell something and mention it and noone else could smell it.
> 11) All SSRI's also have this tendency to produce a knee-jerk laughter response to all sorts of stuff. I was off of all AD's for a while and was taking Adderall
> and that STOPPED and my head was very "quiet"-my mood cycling also stopped.
> 12) Whenever I get tremor from a medication it is *always* on my left side-never the right. And it is usually in my hand/fingers and face/eyelids. Also esp. on SSRI's I have a "tingling patch" on my shoulder just to the left of my spinal column.
> 13)I recently added a low dose of Lithium to my meds and I experienced a couple of episodes where I noticed what looked like a "black hole" in my peripheral vision and it shrank and dissappeared suddenly, very odd.
> 14)I took a single 37.5mg dose of Effexor one time and experienced a full-blown manic episode about an hour after taking it, but it just lasted for an hour or two.
> 15)I have had people tell me that my facial expressions seem to change a lot-and I am not really aware of it.
> 16) When I was a teenager (and now at times) I had a big problem with echolalia (I would repeat out-loud and sometimes unknowingly the last word of every sentence that someone was speaking to me).
> 17) My mother had generalized nocturnal seizures and my sister had severe dyslexia and temper problems. My dad was temperamental and both his eyes would get to "jiggling" especially when he was upset-to the point where he couldn't hardly drive.
> 18) I take low-dose Neurontin, but when I was on higher dosages I could wake up in the morning and it was like my entire visual field was "cleaned" or "windexed". I could close my eyes and it would be black-no "snow" or "noise" in there-very weird.
>
> Sorry for the long post-I am going to get my pdoc to do a referral to a neuro-I feel like I just have to know now one way or the other.
Posted by Mitch on May 19, 2001, at 0:12:49
In reply to Re: Temporal Lobe Epilepsy » Mitch, posted by Elizabeth on May 18, 2001, at 21:01:16
Elizabeth,
I went and seen a neurologist before and I got the standard EEG and evoked potentials stuff. But he *still* thought there were occult seizures-I just got nailed for a few thousand dolllars for all of this *initial* investigatory bull and I still can't quite shake some skepticism that they were just milking me for insurance money-which didn't pay all of it and left me holding the remainder of the bag. He did change his potential diagnostics to "atypical bipolar syndrome" or "possible *frontal* lobe epilepsy". What changed my thinking somewhat was going to that ADD site and getting the "temporal lobe issues" diagnosis with ADD.
Posted by Mitch on May 19, 2001, at 2:22:29
In reply to Re: Temporal Lobe Epilepsy-anyone out there?, posted by zeke on May 18, 2001, at 21:21:39
Zeke, Thank God for you responding! I have always been skeptical personally about having occult epilepsy. It is just that I will have some weird experience that changes my mind and others have wanted me to check it out. It could just be a personality disorder or "atypical bipolar syndrome"-I don't know. Why I say this is that I have taken various anti-convulsant meds for bipolar and I haven't found any miracles. *Neurontin* I find "wakes up my head"-whatever that means.
The neurologist that I can choose is limited where I live. All I can really do is see my pdoc on the next visit and get a referral, or go to my gen. pract. and convince him to refer me (but he just thinks that I am a "somaticizer") and I will have to really tell a real fable to get the referral (sad, huh). That is strange-because I suffer from panic-like symptoms and NEVER been to an ER or been hospitalized for ANY psychiatric phenomena.
Thanks for reminding me that a normal EEG doesn't rule out epilepsy-but I am not really *hoping* this is what it might be-you know what I mean?
It is true that I am fascinated with philosophy and relgion. I am not a church-goer, but am considering joining one (and have been involved in church as a teen). When I was in college I seriously thought of a philosophy degree as a pre-law curriculum. There is a "Knowledge and Reality" course that I just don't want to miss that is being offered this fall where I graduated.
Well as far as sex goes you just touched on something that is also correct. I am most of the time pretty disinterested in sex-just don't care-just don't think about it much (whether I am depressed or not). I am somewhat isolated and my pdoc says that I have social phobia (on top of whatever I actually have-whatever that is). But there are occasional times when I am manic that I get hypersexual.
You mentioned being unusually good-natured and helpful to others-that is right on the money. I can get a lot of rejection sensitivity if I think that I haven't helped someone as fully as possible. Sometimes I go out of my way at work to tell jokes and make others feel well. Also, I have found that I will introduce myself to strangers (work-related) easily-and get really involved socially at times.
As far as anger goes-there is a little truth to grudge issues. I can still feel anger long-term and not be able to trust someone-but I *beleive* that holding grudges is wrong and you have to get beyond it somehow. I was prescribed a low-dose of thorazine 25mg/day in my 20's for anger and not long after I started having panic symptoms that the thorazine seemed to make *worse*. I was taken off of it and given Xanax and that is when the Lithium/mood stabilizer/antidepressant/anti-convulsant road began.
The olfactory stuff that I can remember when taking the Effexor-was smelling a "cooking cheeseburger" smell at work and I was talking to two other people that could'nt smell a thing. Other times I would be sitting on the couch watching TV after I got off work and suddenly smell natural gas leaking and would look all over-go to the basement sniffing trying to see if everything was ok-that has happened a few times.
The derealization/depersonalization thing happens when I feel "trapped" or "boxed-in" and can't "escape". I have NEVER had a panic attack outside. It has always been in a "box" of sorts.
Like I said above there is something peculiar about Neurontin. It wakes me up. This is difficult to describe. If I stop it suddenly I lapse into a *profound* lethargy/sleepiness with cognitive problems. But if I took a high dose of it it makes me real nervous/agitated/spacey.
Adderall was interesting. I took it with *just* Neurontin for a while. I could actually sit down and *learn a new card game*! We are talking 5mg Adderall + 300mg/Neurontin a day. I could *listen* to other people. I could work while others were talking around me without getting pissed off and distracted. There was music I could play that I have heard for years and actually understand the lyrics for the first time! There was something strange about Adderall though-it is a mixture of dexedrine and amphetamine and right after I took it I felt calmed to the point of laying in the sun and taking a nap right after getting up! But later in the day I would get "waves" of feeling wired and then calmed. I don't know if just straight Dexedrine is what I ought to try or not.
I do know that I took the Neurontin/Adderall during a time of the year that I typically have a major depressive episode (twice a year at the same time-seasonal , huh?). I didn't get depressed at all. I didn't get high either. I slept 7-8 hrs. regularly every nite. I went right to sleep at nite and got right up in the morning. It just made me a little edgy at times and if someone upset me about something I would just tell them-I wasn't exactly very *warm*.
Finally, one med that I tried that was a little strange. I tried some Trileptal (oxcarbazepine) and I got some mild priapism (like Trazodone) and got a little sexually preoccupied which was pleasantly surprising-but it seemed to make me hyper and I was REAL nauseous and vomited a couple of times-it got stopped.
Do you think just plain Tegretol would be a better idea?
I take some Klonopin now-would Clobazam or Tranxene (clorazepate) work better??
Thanks for the information about the standard EEG options.
Sorry, for the excessively long reply-but I wanted to touch on all of your questions.
Mitch
> Did either the Neurontin or Adderall improve the TLE related symptoms? Neurontin is used in psychiatry but it is marketed for partial epilepsy. Amphetamine (Adderall) also has antiseizure effects. In fact, it sounds like you did best (so far) when you were on Adderall. Neurontin and Adderall also are reported to have antimanic effects as well.
>
> Another option to an ambulatory EEG would be a standard EEG with Nasopharengic or Sphenoidal leads. These are more sensitive to the medial temporal lobes.
>
> Good luck.
Posted by Elizabeth on May 19, 2001, at 14:52:55
In reply to Re: Temporal Lobe Epilepsy-anyone out there?, posted by Mitch on May 19, 2001, at 2:22:29
> ... Why I say this is that I have taken various anti-convulsant meds for bipolar and I haven't found any miracles. *Neurontin* I find "wakes up my head"-whatever that means.
You said you'd taken Adderall. How did that affect you in regard to the TLE-like symptoms?
> The derealization/depersonalization thing happens when I feel "trapped" or "boxed-in" and can't "escape". I have NEVER had a panic attack outside. It has always been in a "box" of sorts.
That sounds like you might have agoraphobia (or a risk factor for agoraphobia): fear of not being able to escape. Ironically, people often develop agoraphobia as a result of PAs -- they are afraid of having an attack in a place or situation they can't escape from -- and end up having PAs that are triggered by agoraphobic feelings!
> Like I said above there is something peculiar about Neurontin. It wakes me up. This is difficult to describe. If I stop it suddenly I lapse into a *profound* lethargy/sleepiness with cognitive problems. But if I took a high dose of it it makes me real nervous/agitated/spacey.
That sounds very much like what buprenorphine does to me: I feel more alert and clear-headed on it than off. If Neurontin does that for you, then that's lucky, whatever the reason. It also sounds like the combination of Neurontin with very low-dose Adderall helped even more.
300mg Neurontin isn't a lot, BTW. Have you ever tried taking more?
Re Adderall vs. Dexedrine: Adderall is supposed to be longer-lasting and smoother (this is because of the funny combination of amphetamine isomers). If the fluctuations in your level of alertness really bother you, you might try slow-release Dexedrine ("Spansules") as an alternative to Adderall. There's also a relatively weak but long-lasting stimulant called Cylert that isn't related to amphetamine. I took it for a few months in college and it helped me to feel alert during the day and maintain a regular sleep schedule.
> Do you think just plain Tegretol would be a better idea?
No, if oxcarbazepine made you sick, carbamazepine is liable to be worse.
> I take some Klonopin now-would Clobazam or Tranxene (clorazepate) work better??
I don't know much about clobazam except that it's chemically distinct from other benzodiazepines and weaker. (It's not marketed in the U.S.) Tranxene is longer-lasting but less potent than Klonopin and can be taken just once a day. Different people have a lot of different opinions as to which benzo is the best, so it's hard to predict.
Anyway, good luck with things. I hope you can resolve your situation.
best,
-elizabeth
Posted by Mitch on May 19, 2001, at 17:48:06
In reply to Re: Temporal Lobe Epilepsy » Mitch, posted by Elizabeth on May 19, 2001, at 14:52:55
> You said you'd taken Adderall. How did that affect you in regard to the TLE-like symptoms?
When I was on Neurontin/Adderall (NO AD's or benzos), my cycling settled down, slept good, attention was fantastic-but it worsened social anxiety/panic after a while and had to be stopped (check out previous threads about Social Anxiety/ADD connection?). My personality became somewhat "cold". But it definitely stopped the chattiness. I would be at work and people would really remark about how "quiet you are-are you OK?" My IBS problem RESOLVED, never had ANY cramping. It definitely improved many aspects of temporal lobe symptoms. But when I took just Neurontin/Klonopin (NO AD's), my cycling also settled down, but once again my social anxiety/panic seemed to worsen again (like I need an SSRI-but it aggravates other problems-maybe it was just a withdrawal from SSRI's that just takes me a LONG time to get over-??)But the culprit with the CYCLING is definitely antidepressants!!
>
> 300mg Neurontin isn't a lot, BTW. Have you ever tried taking more?Oh yeah, but like I have mentioned I get depersonalization >1200mg a day. And I get esophageal/ear canal spasms and difficulty swallowing/hiatal hernia symptoms >600mg a day. I would like to cautiously increase it some, but am afraid of what might happen. (say to 400mg/day)
>
> Re Adderall vs. Dexedrine: Adderall is supposed to be longer-lasting and smoother (this is because of the funny combination of amphetamine isomers). If the fluctuations in your level of alertness really bother you, you might try slow-release Dexedrine ("Spansules") as an alternative to Adderall. There's also a relatively weak but long-lasting stimulant called Cylert that isn't related to amphetamine. I took it for a few months in college and it helped me to feel alert during the day and maintain a regular sleep schedule.Sounds like a good idea if I ever try stims again (the dexedrine Spansules).
I don't think my current pdoc will consider any stimulants ever again, though. We know that my mood cycling is being caused by antidepressants, particularly SSRI's, of course the one's that help my social anxiety the most. Interestingly, on that ADD website where it discusses temporal lobe issues it mentions that serotonergic meds like Prozac, Paxil, etc. often *worsen* temporal lobe symptoms (I would certainly agree-but what am I to do about social anxiety/panic, etc.?).
>
I am in quite a dilemma-I want to stop the cycling/TLE syndromes, but it seems like I need *some* kind of serotonergic medication-that is why I suggested a little lithium (300mg/day) added to my Neurontin/Klonopin last week-so I can see if the tiny dose of Celexa I take (now down to 2.5mg/day) can be elminated eventually. Oh, by the way in the Social Anxiety/ADD connection threads there is a post about the reason I possibly got more nervous and panicky on Adderall was that I became hyperaware of body language from everybody else and that hyperattention to it was triggering my panicky feelings (and this was a classic ADD "compensatory mechanism").I will tell you this: There was a "perfect clear spot" that lasted for about two weeks where the "TLE stuff", social anxiety/ADD and moodswings *completely* remitted (until I developed adverse effects from the med combination), I was taking Neurontin 300mg bid, Adderall 5mg AM, and.. Risperdal .5mg at bedtime. I developed dystonias, cogwheel rigidity, difficulty swallowing and talking-choking sensations. Stopped the Risperdal immediately and it has slowly resolved. I am very, very, very sensitive to anything that blocks DA receptors. I even get mild dystonia from SSRI's. With Luvox I had trouble initiating movement (bradykinesia). And *all* SSRi's I have taken cause restlessness/pacing to some degree. There isn't one of them that I can take a whole tablet of for more than a few days. When I first took Prozac (20mg/day) back in 1992, I could only stand it for about 10 days, then I couldn't sleep, my pupils were dilated, my flesh was crawling it was horrible.
What would you suggest??
Thanks for any help,
Mitch
Posted by medlib on May 20, 2001, at 3:02:58
In reply to Temporal Lobe Epilepsy-anyone out there?, posted by Mitch on May 18, 2001, at 11:46:40
Mitch--
My son has had TLE since age 14--20 years. His diagnosis is "complex partial seizures, secondarily generalized"--what used to be called "grand mal seizures with auras." (An aura is a complex partial seizure that may, or may not, lead to a generalized one.) He has never had an abnormal EEG. He's taken Tegretol (carbamazepine) nearly all of that time and hasn't had a generalized seizure in 12+ years. (He still has occasional auras when he's forgotten a med dose or gotten too little sleep or too much stress.) Although he's on 1200 mg. Tegretol/day and describes his short-term memory as "Swiss cheese," he's completed grad school with a 4.0, has a responsible job, a good marriage, and is expecting his first child in a few months.
I tell you all this to emphasize that proper med management can enable many epileptics to lead perfectly normal lives. Over the years, I have heard other epileptics describe nearly every symptom you listed--including echolalia. There is a logical connection between ADD and epilepsy. If you think of a brain which has insufficient "brake fluid"-i.e. GABA, one stimulus may trigger an appropriate electrical "firing" in the brain, but that signal doesn't stop normally--it spreads to perhaps adjacent, but unrelated areas. However, if a biological connection between epilepsy and ADD has been clearly established, I'm not aware of it. (Since my son has been stable, I haven't followed the field as closely.)
My son's neurologist specializes in epilepsy, and is on the board of the local Epilepsy Assn. Your nearest chapter might be willing to list such specialists for you or your primary physician may be able to refer you to one. I believe that such a specialist is essential, especially for you.
Good luck on your diagnostic journey. Well wishes---medlib
Posted by Mitch on May 20, 2001, at 14:43:23
In reply to Re: Temporal Lobe Epilepsy » Mitch, posted by medlib on May 20, 2001, at 3:02:58
Medlib,
I really appreciate your calming support. I will take your advice and do some calling next week. I want to get to the bottom of this. It is just that I don't look forward to skepticism and expensive diagnostics that don't show anything. I just fear that at the end of it all, I will just get a "shrug" from a neurologist (and bills for two years). My current (and past) pdoc has diagnosed me already with several disorders-and it just seems like every visit is going to end with "the diagnosis of the month"!Yesterday, before I went out I grabbed the Trileptal (oxcarbazepine)and took 150mg with my Neurontin and Klonopin. I had an accentuated "alert-awake" feeling and I really felt like socializing-it was interesting.
I think that you are "spot-on".I am glad tht your son has been able to get through grad school and start a family despite the epilepsy and the meds to control it. That has given me a lot of needed encouragement.
Thank you,
Mitch
> Mitch--
>
> My son has had TLE since age 14--20 years. His diagnosis is "complex partial seizures, secondarily generalized"--what used to be called "grand mal seizures with auras." (An aura is a complex partial seizure that may, or may not, lead to a generalized one.) He has never had an abnormal EEG. He's taken Tegretol (carbamazepine) nearly all of that time and hasn't had a generalized seizure in 12+ years. (He still has occasional auras when he's forgotten a med dose or gotten too little sleep or too much stress.) Although he's on 1200 mg. Tegretol/day and describes his short-term memory as "Swiss cheese," he's completed grad school with a 4.0, has a responsible job, a good marriage, and is expecting his first child in a few months.
>
> I tell you all this to emphasize that proper med management can enable many epileptics to lead perfectly normal lives. Over the years, I have heard other epileptics describe nearly every symptom you listed--including echolalia. There is a logical connection between ADD and epilepsy. If you think of a brain which has insufficient "brake fluid"-i.e. GABA, one stimulus may trigger an appropriate electrical "firing" in the brain, but that signal doesn't stop normally--it spreads to perhaps adjacent, but unrelated areas. However, if a biological connection between epilepsy and ADD has been clearly established, I'm not aware of it. (Since my son has been stable, I haven't followed the field as closely.)
>
> My son's neurologist specializes in epilepsy, and is on the board of the local Epilepsy Assn. Your nearest chapter might be willing to list such specialists for you or your primary physician may be able to refer you to one. I believe that such a specialist is essential, especially for you.
>
> Good luck on your diagnostic journey. Well wishes---medlib
Posted by mocdoc on May 20, 2001, at 20:28:44
In reply to Temporal Lobe Epilepsy-anyone out there?, posted by Mitch on May 18, 2001, at 11:46:40
It certainly sounds as if you have some sort of temporal lobe dysfunction. Hve you tried the old "classical" medication carbamazapine (Tegretol)? A bit of a nuisance since blood levels must be monitored but perhaps you might discuss it with your MD if you haven't already gone that route. I'm told that clonazepam has helped some people with
hypergraphia and smell and taste hallucinations-also worth discussing if you haven't already.
Good luck
Posted by medlib on May 22, 2001, at 0:38:16
In reply to Re: Temporal Lobe Epilepsy, posted by Mitch on May 20, 2001, at 14:43:23
Mitch--
Thanks for the feedback! As one who has no insurance, I can understand only too well your reluctance to continue playing medical "musical chairs" when you're always "it." What will help the most in future rounds of the Dx game is to make sure your neuro doc has copies of all relevant med records and diagnostic tests before your appointment and to take in a list of all current meds and supplements (with dosages). (It's worth a call to the new doc's office beforehand to see if everything's arrived--that way, you can demand that previous docs fax what's missing.)
Personally, I see little logic in yet another, probably normal, EEG--unless you think you can reliably induce l or more of the symptoms you described while "hooked up.". However, imaging scans can show abnormalities in brain tissue (called "focal lesions" or scars, tumors, etc.) and some can detect regional abnormalities in brain functioning. What you want to know (besides the cost) is what the test is expected to show and whether results will likely be "diagnostic" or just "indicative." It helps to be frank about costs (financial and emotional), but with tact (neuros have bad reps re bedside manners--many are less than empathetic.) And your "dx of the month" remark is all too close to realistic. It's my hunch that your Sxs (symptoms) are too diverse for it to be likely that a "trigger point" can be identified. (I got a mental image of an electrical pingpong ball or racquetball bouncing randomly when I read your post.) That's definitely NOT a qualified opinion, though--don't take it to the bank (or the neuro).
A Babbler whose posts I always follow (JohnL) has a logical, pragmatic approach to psych meds--trying to identify the most reasonable match between symptomology and drug classifications, then trying several meds from that class to find which works best. He is less interested in *why* a med works than *how well* it works. I like that approach for psych meds, but please don't try it for anticonvulsants (or stimulants). For epileptics, different ACs work better for different types of seizures; the wrong one can actually trigger seizures. Stimulants often are prescribed for ADD, but they can also cause seiures in epileptics. That's why, if you even *suspect* epilepsy, an appropriate neuro is so important.
Well, that's more than enough "mothering" for tonight. Hope you find some answers; if it helps, I think you are asking the right questions.
Well wishes---medlib
Posted by Mitch on May 22, 2001, at 12:44:16
In reply to Re: Temporal Lobe Epilepsy » Mitch, posted by medlib on May 22, 2001, at 0:38:16
Thanks for your help,
I haven't hit the phone yet about it, but I won't procrastinate too long. I stopped taking my Celexa yesterday (the tiny 2.5mg dose)and am only on Neurontin/Klonopin/Lithium (once again). I know I will get some withdrawal from the Celexa.I am beginning to think that my troubles are mainly with SSRI meds. I only have the "auras" when I am taking them (with very few exceptions). Also I have never had any observable seizures-so it isn't like they are creating severe distress and dysfnction with my life. It would be kind of nice just to *avoid* taking something rather than taking more of something else.
I really believe that I could say I have got a mixed bag of atypical bipolar, social anxiety, and temporal lobe ADD for now.
Thanks again,
Mitch
Posted by Zo on June 9, 2001, at 3:29:11
In reply to Re: Temporal Lobe Epilepsy-anyone out there?, posted by zeke on May 18, 2001, at 21:21:39
Hi Mitch, I've had TLE since I was a child, but easily kept to myself the weirdness that would happen with flickering lights. You'll find the "big and small" symptom talked about alot on the Mass. Gen. Neruo boards - excellent source. Didn't get diagnosed, despite EEG, til Neurontin Rxed for fibromyalgia took my daily "funny spells" away. . .along with certain lights and motions my eyes cross - yes, really! - and as for hypergraphia, I've turned it into a caareer as a novelist. Sometimes the seizurey periods now are even kind of pleasant, they feel inspired, but not manic. Brought on by too much sleep. . .Neurontin is a real stinker to get on and get up to the right dose; one must overshoot the mark to know what it is, and I was so wiped out for a month, but there is a list, Neurontin-L, so I knew to hang in there. The fibromyalgia's gone. . .and so, for the most part, is my lifelong "secret."
Best of luck,
Zo
Posted by Mitch on June 10, 2001, at 22:52:46
In reply to Re: Temporal Lobe Epilepsy-anyone out there?, posted by Zo on June 9, 2001, at 3:29:11
I am currently taking Neurontin 400mg/day and Klonopin. I think if insurance looks ok I will see a neuro soon and get some more testing. I only have had a standard EEG. I want to get a sleep/medication deprived 24-AEEG and an MRI. After that I will see.
Mitch
> Hi Mitch, I've had TLE since I was a child, but easily kept to myself the weirdness that would happen with flickering lights. You'll find the "big and small" symptom talked about alot on the Mass. Gen. Neruo boards - excellent source. Didn't get diagnosed, despite EEG, til Neurontin Rxed for fibromyalgia took my daily "funny spells" away. . .along with certain lights and motions my eyes cross - yes, really! - and as for hypergraphia, I've turned it into a caareer as a novelist. Sometimes the seizurey periods now are even kind of pleasant, they feel inspired, but not manic. Brought on by too much sleep. . .Neurontin is a real stinker to get on and get up to the right dose; one must overshoot the mark to know what it is, and I was so wiped out for a month, but there is a list, Neurontin-L, so I knew to hang in there. The fibromyalgia's gone. . .and so, for the most part, is my lifelong "secret."
> Best of luck,
> Zo
Posted by Zo on June 12, 2001, at 4:01:08
In reply to Re: Temporal Lobe Epilepsy-anyone out there?, posted by Mitch on June 10, 2001, at 22:52:46
> I am currently taking Neurontin 400mg/day and Klonopin. I think if insurance looks ok I will see a neuro soon and get some more testing. I only have had a standard EEG. I want to get a sleep/medication deprived 24-AEEG and an MRI. After that I will see.
>
> Mitch400 is a pretty low dose. I can't go under 500, and that was after 2 years at 900. Look on the Mass Gen Neuro Boards - people strongly advise avoiding regular neuro, in favor of an epileptologist. . .and don't be surprised if nothing shows up on the sleep-deprived. Are you having debiliating deja vues or other symptoms? I just control it with Neurontin with my pdoc. . .and Klonopin is another excellent GABA calmer.
Posted by Mitch on June 12, 2001, at 12:37:52
In reply to Re: Temporal Lobe Epilepsy-anyone out there?, posted by Zo on June 12, 2001, at 4:01:08
> > I am currently taking Neurontin 400mg/day and Klonopin. I think if insurance looks ok I will see a neuro soon and get some more testing. I only have had a standard EEG. I want to get a sleep/medication deprived 24-AEEG and an MRI. After that I will see.
> >
> > Mitch
>
> 400 is a pretty low dose. I can't go under 500, and that was after 2 years at 900. Look on the Mass Gen Neuro Boards - people strongly advise avoiding regular neuro, in favor of an epileptologist. . .and don't be surprised if nothing shows up on the sleep-deprived. Are you having debiliating deja vues or other symptoms? I just control it with Neurontin with my pdoc. . .and Klonopin is another excellent GABA calmer.My symptoms become accentuated when taking SSRI's and some other antidepressants. Nothing is really debilitating. Although they started when I was about 11 or 12. I don't think I could find an epileptologist where I live. I am beginning to agree with you about the AEEG. I think an MRI ought to be done first, then maybe the AEEG. I am trying to work the Neurontin dose back up very carefully. When I see my pdoc next week I am going to 1) ask for a referral to a neuro, and 2) see about bumping the Neurontin another notch up to 500mg/day-say 300mg at bed time and 100mg twice during the daytime. As far as avoiding the regular neuro goes-I am not entirely sure this is epilepsy, there is also some suspicion about early-onset Parkinsonism as well. Other suspicions are an endocrine disturbance that is masked somehow.
FWIW here is a list of all the diagnoses I have been through:bipolar II rapid-cycling
ADHD
Intermittent explosive disorder (anger attacks)
social anxiety disorder
panic disorder with agoraphobia
simple phobias
OCD
IBS
GAD
Posted by Zo on June 16, 2001, at 21:08:24
In reply to Re: Temporal Lobe Epilepsy-anyone out there?, posted by Zo on June 12, 2001, at 4:01:08
Did I mention, it works just fine, if it works for you, to take all your Neurontin at bed.. . Does for me, and others. And read the book Seized (used/library.) We TLE people are somewhat on our own, if its not monster debilitating. I also take 10 mg Valium at bed, to *get* to sleep. .. but I'm also ADD.
Neurontin is used for GAD too. Very versatile med. Also does wonder for Fibromyalgia pain.
Posted by mocdoc on July 24, 2001, at 14:34:22
In reply to Re: Temporal Lobe Epilepsy-anyone out there?, posted by zeke on May 18, 2001, at 21:21:39
Dear Zeke,
You mentionned on May 18 that amphetamine,e.g. Adderall has antiseizure activity. Could you provide a reference-probably a Webreference- for this.
Sorry to bother you,
mocdoc
Posted by Mitch on July 24, 2001, at 16:20:37
In reply to Re: Temporal Lobe Epilepsy-anyone out there?, posted by mocdoc on July 24, 2001, at 14:34:22
> Dear Zeke,
> You mentionned on May 18 that amphetamine,e.g. Adderall has antiseizure activity. Could you provide a reference-probably a Webreference- for this.
> Sorry to bother you,
> mocdocmocdoc,
I can answer that one. It is used for "gelastic seizures". This is when people laugh out loud and sometimes aren't aware of it (a sort of complex partial seizure type variant).
Posted by sanjay on August 26, 2001, at 3:59:50
In reply to Temporal Lobe Epilepsy-anyone out there?, posted by Mitch on May 18, 2001, at 11:46:40
I have an identical problem and I have temporal lobe problem seen on my EEG as well as taking tegrital since six months. My doc said the loss of errection I had was also related to TLE. However my TLE is not full blown only beginning
Posted by Zo on August 26, 2001, at 15:55:51
In reply to Re: Temporal Lobe Epilepsy-anyone out there?, posted by sanjay on August 26, 2001, at 3:59:50
Hi!
What do you want to know?
Best,
Zo
Posted by randa on September 12, 2004, at 15:44:04
In reply to Re: Temporal Lobe Epilepsy » Mitch, posted by Elizabeth on May 18, 2001, at 21:01:16
My psychopharmachologist is having me tested for right temporal lobe epilepsy because since childhood I have heard someone calling my name when no one is around. As a child at night I heard a horrible rasping voice calling my name from the vacinity of the door in my room that led to the old servants' stairs. I guess all the things I have seen have all been hallucinations, but I've seen a young girl dressed in 1800's garb, the deceased wife of an elderly man I was caring for--I saw her white gown billow after her from window to window; she was watching over him and waiting for him--this is somethng I knew but I don't know how I knew it--vapors that moved as a single entity. I "experienced" while in the Arizona desert the vision of a frontiers woman. The vision was in black and white. The woman was carrying a bucket which seemed very heavy to her. Her cabin was in the background. Her face was wrinkled and worn. The sense of despair was overwhelming. She was I in another life. How do I know that? You tell me.
I am diagnosed with panic disorder, depression, anxiety. My parents are both depressed and my mother suffers also from anxiety. My brother and sister are diagnosed with depression. We all take prozac. I take a lot of anti-siezure meds to control the panic attacks but I still get panic attacks. I never told my doctor about the voices, etc., I saved that goodie for my psychiatric interview for disability. Was that psychiatrist pissed off or what that I hadn't told my doctor? What's with that? I've never known what was going on with me and kept my mouth shut. And when I opened it, I got the response I was afraid I would. She treated me as though I was a nut case.
I am still trying to get disability and some kind of health insurance so I can be tested for right temporal lobe epilepsy. Is it my imagination, or are all my med people treating me as though they wish I'd go away??
> > Does anyone out there have a *confirmed* diagnosis of Temporal Lobe Epilepsy or know someone that does?
>
> I know someone who does, yes. She also has been diagnosed with rapid-cycling bipolar II disorder with dysphoric hypomanias and borderline personality disorder. She has occasional hallucinations and illusions, as well as spells when speaking is very difficult for her (often associated with the hallucinations).
>
> > I went through a TLE checklist and went to the ADD checklist site and came up with an ADD diagnosis with "temporal lobe problems" response.
>
> Me too, but there's never been any conclusive evidence that I have any sort of epilepsy (3 EEGs (one sleep-deprived, one 24-hour), 3 MRIs, all unremarkable. (However, I *still* haven't gotten my hospital records with the writeup about my SPECT scan, which I have been told was abnormal in some really obvious way.)
>
> > Anyway here are some of the symptoms I experience and have experienced with various medications:
> >
> > 1) Occasional explosive temper with a lot of autonomic arousal followed by panic anxiety and depression.
>
> "Anger attacks" are common in some kinds of depression. They are occasionally associated with TLE but I think this is very rare.
>
> Treatment approaches for anger attacks include, on the one hand, serotonergic antidepressants (SSRIs, MAOIs, Effexor, etc.), or, on the other, mood stabilisers (lithium, valproate, carbamazepine, etc.). It's hard to predict which will work for whom.
>
> > 2)Constant gastrointestinal problems that seem to worsen and coexist with the mental phenomena.
>
> Ever heard of "irritable bowel syndrome?"
>
> > 3)I like to write a lot (as you can see). I am a technical writer where I work and can type 115 wpm.
>
> I don't think this is pathological.
>
> > 4) I don't get deja vu, I just found out the experience I rarely get is *jamais vu*. An unusual feeling of strangeness in a familiar place.
>
> Me too; it's associated with panic attacks in my case. An alternate word for the experience might be "derealisation."
>
> > 5) Rare mystical experiences-specifically brief intense feelings that God is right there with me (not talking to me or anything-just the *feeling* of presence).
>
> A lot of people have had these, not just epileptics. It's something that has always interested me, although I've never experienced it myself.
>
> > 6) Feelings of changes of scale around me. Everything seeming "bigger" or "smaller". Kind of like getting new eyeglasses. Usually when I change or add a med.
>
> I think this is related to the spacy, unfamiliar, unreal feeling you described above (#4).
>
> > 7) Changes in perception of color intensity with different meds. For some reason Prozac and especially Effexor made colors very very vivid-red almost glowed!
>
> OK, that's just weird. I have no idea what to make of it.
>
> > 8) All SSRI's seem to intensify my ability to hear music in my head (carry a tune around). I can *wakeup* with music playing! I could play music sometimes on Prozac and hear *other* music playing with it that was not there!
>
> I have had something similar happen while on MAOIs, in particular Nardil and Marplan. I don't know what causes it. I've met a couple of other people who experienced this side effect on MAOIs.
>
> > 10)When I was taking Effexor I was frequently smelling things that weren't there. I would be at work and smell something and mention it and noone else could smell it.
>
> It's possible you just have a better sense of smell than most people, although olfactory hallucinations are considered to be very suggestive of TLE.
>
> What kind of smells were they?
>
> > 11) All SSRI's also have this tendency to produce a knee-jerk laughter response to all sorts of stuff.
>
> Sounds like marijuana to me!
>
> > I was off of all AD's for a while and was taking Adderall and that STOPPED and my head was very "quiet"-my mood cycling also stopped.
>
> Lots of people find that stimulants have this effect. I conceptualise it as being able to keep up with your racing thoughts. Whatever the cause, it's common with ADD-spectrum conditions.
>
> Book recommendation: _Dysthymia and the Spectrum of Chronic Depressions_ by Akiskal and Cassano.
>
> > 13)I recently added a low dose of Lithium to my meds and I experienced a couple of episodes where I noticed what looked like a "black hole" in my peripheral vision and it shrank and dissappeared suddenly, very odd.
>
> I think illusions are pretty common with lithium.
>
> Tremor is a common side effect of most ADs.
>
> > 14)I took a single 37.5mg dose of Effexor one time and experienced a full-blown manic episode about an hour after taking it, but it just lasted for an hour or two.
>
> My pdoc says he finds "side-Effexor" to be one of the worse culprits in inducing mania. I had a very serious episode on Effexor XR. Another time, when I tried regular Effexor (immediate-release) 37.5mg, I started shaking violently all over.
>
> > 15)I have had people tell me that my facial expressions seem to change a lot-and I am not really aware of it.
>
> I think that's natural. People communicate a lot through facial expressions, and they aren't always aware that they're doing so.
>
> > 16) When I was a teenager (and now at times) I had a big problem with echolalia (I would repeat out-loud and sometimes unknowingly the last word of every sentence that someone was speaking to me).
>
> I think this is associated with some types of schizophrenia. I don't know much about it, though.
>
> > 17) My mother had generalized nocturnal seizures and my sister had severe dyslexia and temper problems. My dad was temperamental and both his eyes would get to "jiggling" especially when he was upset-to the point where he couldn't hardly drive.
>
> That's called nystagmus (the vibrating eyeball thing). I think that the tendency for epilepsy and ill temperedness in your family may both be contributing to your emotional problems and perceptual quirks.
>
> Sorry I couldn't be of much help. I hope you will check out that book; it includes discussions of the concept of "characterological"/"neurotic"/"atypical" depression, depression associated with ADD, residual and premorbid schizophrenia, etc. I think you might find something in there applicable to you.
>
> A lot of people do have weird perceptual disturbances on ADs. If it's mainly a side effect, I don't think it indicates epilepsy. My suggestion would be to show your list to your pdoc or GP and ask if s/he thinks you could use a referral to a neurologist.
>
> -elizabeth
This is the end of the thread.
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