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Hello all, This side of the building is sort of all new to me, I have been focused on other stuff as you will read and I am looking for advice, thoughts, guidance. A few years ago I was diagnosed with a brain tumor on my right temporal lobe. It was discovered because I had a gran mal (aka tonic clonic) seizure while out on a run. The tumor was removed with surgery, then radiation and chemo. Due to the "injury," as the medical world calls it, to my brain from the tumor/surgery, I am left with a scar on my brain, which perhaps is the cause of ongoing seizures. I have not had any gran mals since the first one, but it seems like every month to month and half I go through a strong bout of seizure activity, which I am today and yesterday. The sensations are scary, as I am sure you all know, like I am being sucked into some other world, or like someone hit play on the DVD player and the memories are being activated uncontrolabley, and it all gets me frightened cause they are the strong "auras" that potential come before a gran mal. I've been told I am lucky I get the auras... I am on 1000mg tegretol twice a day and 500mg keppra twice a day. Took lamictal which made me so anxious, I so now understand clinical depression! The real reason I am babbling I guess is do you all get the auras and get scared crapless? What are yours like? I was just in the supermarket about three hours ago and basically had one come on and had to leave the groceries and get to the car for fear of the whole thing. Also, my neurooncologist is finally sending me to a neuroepilepsy specialist to see if he can help = new meds??? Sorry for rambling just trying to start to become an "expert" in this stuff with people who go through this, my brain tumor buddies don't really have this problem and this journey is now seeming to take the lead; I got the brain tumor world down pretty well... I thought it was neat to learn that the word epilepsy just means repeated seizures. The world makes you think it is akin to lepresy... Cheers and good vibes to you all... David

Comments

Hi David and welcome, Sorry

Submitted by wldhrt13 on Thu, 2006-12-21 - 07:23

Hi David and welcome, Sorry to hear about your ordeal. But glad to hear that you are recovering. I am currently awaiting results from an Ambulatory EEG test to rule out Temporal Lobe Epilepsy. I have had a slew of strange episodes/events since I was in my teens. I thought I was "crazy" for many years. Now, after reading so many others' stories I don't feel that way. MOst of it seems pretty textbook after comparing notes between my symptoms and the diagnosis of TLE. Here are some of my story and symptoms if you are interested read on... I saw my first neurolgist when I was 19 years old, who then ordered a sleep deprived EEG. He said that because I was on benzodiazepines for treatment of what was felt to be "anxiety", the medications might be possibly masking an underlying illness. He urged me to have another EEG done once I was off these medications. However, I did not come off these medicines for some 13 years (2002) which is why I never had another EEG til recently. Even during the years I was taking 5-10 mg of Diazepam for "anxiety", I continued to have these symtpoms, the medicine never did anything to alleviate most of it. My symptoms started in my childhood/adolescence and most are documented in my pediatric records. In younger childhood, around kindergarten the symptoms were more limited to sleep disturbances: â€œnight terrorsâ€ as the pediatrician called them, talking in my sleep, sleep walking, and grinding my teeth while I was sleeping. As I got older and into my pre-teen years the symptoms seem to expand to include other sensory symptoms (or maybe as a young child I couldnâ€™t adequately describe them). I also began to have racing heartbeats, areas of my body go numb, and near syncope (feeling faint). I did collapse once my first year of college. A lot of my symptoms are hard to describe and put into words. BUt they do seem to fit into categories. THe first category I call "other" because it does't fit into any of the usual 5 senses very well. The majority of experiences I have each day fall under this "other" category. Itâ€™s very hard to put into words and I am often reluctant to talk about it for fear people may think I am crazy. When I go through one of these events, I will just feel like I am in some kind of mystical state. I can always orient to who I am and where I am etc.. but itâ€™s as if I have some kind of re-connection to and strange familiar past time/space. Like I am re-experiencing an old familiar memory of some kind; and yet it can happen in a place I have never been before. This feels similar to but differs from deja vu. Although I have had sort of classaic dÃ©jÃ vu, where everything I say or do seems like I have said it exactly the same way before, but this feels very different. It feels like I am seeing the universe much more clearly for the first time, as if I am approaching some kind of enlightened state where I will soon â€œknowâ€ everything, figure everything out; figure out the mystery of life itself. It feels like a powerfully joyful feeling, like I donâ€™t want it to ever end. There is a time/space quality as if I am experiencing the world â€œbefore timeâ€ as in a priori, primordial, or primeval experience. It has a very spiritual feel to it too, like I am connecting somehow with God. It feels like Iâ€™ve reached some sort of a spiritual epiphany. This type event is a pleasant one that lasts between 1 and 4 minutes or so in length. This happens to me every day at least once, sometimes several times a day. The reciprical to this event happens quite frequently too, it is where I experience a bad bad feeling like impending violence is about to befall me. THere is no specific thought that run through, I just feel like the grim reaper himself is about to walk into my space. I always feel some kind of spiritual annihilation or attack is imminent. I feel filled with absolute terror and panic. THe duration is the same as the pleasant experience but every second feels like an eternity... Another weird experience I get alot is how sometimes I will re-experience old memories... Recently, I was driving to drop off my son to my mother in law's and all of a sudden I felt like I was emotoinally transported back to 1975. I re-experienced a memory from the day my parents had this BBQ/party for my grandfather. Another words instantly I was transported emotionally back to this event, simultaneously I could still visually etc..see the highway I was driving on and my son in his carseat in the rear view mirror etc...It's like a memory has been shoved into play mode out of my mind's CD-ROM archive and I have no control that it is playing. I just FELT emotionally, as I did back in 1975 when I was five...and yet the rest of my senses are orienting to present circumstances!! Smells~sometimes I will smell something that no one else around me does. Usually it has been an the smell of dead mouse, smelly feet, of some kind of strong chemical type smell. Less frequently I will smell something sort of sweet and pleasant; like brownies baking type of smell. It only lasts under a minute and then it is gone. Sound~I frequently get ringing in my ears. It starts off where my hearing is actually gone, then it starts ringing softly, grows so loud I can't hear out of that ear, then begins to fade away. Sometimes I will hear what sounds like a butterfly flapping it's wings right next to my ear; almost inside my head. My hearing has always been super-sensitive. Loud noises or high-pitched noises actually hurt my ears. Taste~there is no specific taste that comes over me, it just appears as a yucky, foul/bad taste in my mouth, even though I have already brushed my teeth for the day etc.. it happens as briefly as the smells I listed above, and doesnâ€™t coincide with ingesting/eating anything. Sometimes foods will not taste right to me, they will taste "off". I put the food aside and when I later return to it, it will taste perfectly fine. Vision~I sometimes I feel as if I am standing from the vantage point of being twelve feel tall, almost as if my body has elongated somehow, it lasts under a minute just as the above symptoms do. Much less frequently I have felt when looking at my hands or feet; like my body part (hand etc...)appears a bit smaller. Again it is very short in duration like the other symptoms, a few seconds or so. I have had a lot of both flashes and floaters since young adulthood. Touch~in localized portion of my skin like my thigh, sometimes my skin feels like there are crawly type feelings under it, almost as if something is moving underneath. At other times a localized part of my skin (like a part of my arm or leg) feels hyper sensitive, even a soft sheet can feel scratchy in that one area of my skin. Touch in general is hypersensitive, if I donâ€™t know someone is about to touch me, say they come from behind me, I get pretty startled. I guess they call this tactile defensiveness? OH yeah the other weird symptom involving touch is where my hands feel powdery. I know...it doesn't even make sense when I say it, but they just feel like they are covered in a powdery substance and it doesn't feel pleasant, trust me. Sometimes I get goosebumps on only one side of my head. IT's very bizzare. Nausea~I have had periods of rapid onset of nausea throughout my day for many years, that has nothing to do with eating. I have not vomited just felt very nauseated. This lasts a few minutes and then goes away. I used to think that maybe my blood sugar was low, and that eating a snack would make it disappear, but eating something has never alleviated the nausea; it just goes away on itâ€™s own. I also get a feeling in my stomach that is similar to hunger but different. It feels like someone has put some kind of fizz in there and it bubbles up and expands or something...I know, another weird thing! Perception~(Alteration of Time) this is a weird feeling and hard to describe but it feels as if someone has just hit the fast forward button or pause button on time. Time, as its unfolding feels either like itâ€™s going slightly faster than it should, or like itâ€™s just a tad too slow, almost like everything around me is going on at a sligthly slower pace. Even the thoughts in my head can feel like slow motion or speeded up depending. The best way to describe it is when you are dealing with a VCR, you can adjust the tracking on the film and there are gradations where you can slow the film down just a bit. These sensations like the others are either momentary up to only a few minutes long. Oh this is a fun one...NOT! Feeling of Detachment from my body- almost Outer Body Experience. This sensation is how I got a diagnosis of anxiety/depersonalization and put onto benzodiazepines as a teen in the first place. I began having a sort of feeling like I was floating a bit away from myself maybe only a foot or two. Almost hovering next to my body. The therapist told me it was depersonalization and recommended medicationâ€¦hence the benzodiazepines. The sensation is like watching yourself performing functions almost as if you are not connected to yourself somehow. Often as a young child I would feel confused and approach my father, mother or teacher and tell them, â€œIâ€™m not sure if I am awake or asleep.â€ Life just felt extremely surreal and detached. This happened frequently and with psychotherapy I was trained to learn how to tolerate these sensations. Now as an adult it has seem to either decrease, or I just got better at ignoring it; Iâ€™m not sure which. Rage attacks/happy slappy~Sometimes I will feel absolutely rageful and I am not certain why. It has nothing to do with circumstances going on and is void of any emotional type thoughts preceding the episode. Lasts typically a few minutes and I am always cognizant at the time that I shouldnâ€™t be feeling so angry and am puzzled as to why I am. ON the contary, sometime I feel really happy that has nothing to do with any circumstances either or any thoughts preceding but since itâ€™s such a pleasant thing, I donâ€™t question it, I just go with the flow. I hope you can appreciate how difficult this is to write because many things are just plain extremely embarassing to experience. I hope you understand this text, many of these things are ineffable and therefore hard to describe. AS you can see, things run the gammit. I have been at times paralyzed with fear, and fascinated by near ecstasy...The first EEG showed sharp waves in my left temporal lobe. I hope I get a diagnosis soon so I can start on medications. It would be great to feel life unfettered by all this stuff. p.s. don't ever feel that your story is weird because as I have learned there's always someone who can top that weirdness! pamela p.s. feel free to email me if you need an ear...

Hi David and welcome, Sorry to hear about your ordeal. But glad to hear that you are recovering. I am currently awaiting results from an Ambulatory EEG test to rule out Temporal Lobe Epilepsy. I have had a slew of strange episodes/events since I was in my teens. I thought I was "crazy" for many years. Now, after reading so many others' stories I don't feel that way. MOst of it seems pretty textbook after comparing notes between my symptoms and the diagnosis of TLE. Here are some of my story and symptoms if you are interested read on... I saw my first neurolgist when I was 19 years old, who then ordered a sleep deprived EEG. He said that because I was on benzodiazepines for treatment of what was felt to be "anxiety", the medications might be possibly masking an underlying illness. He urged me to have another EEG done once I was off these medications. However, I did not come off these medicines for some 13 years (2002) which is why I never had another EEG til recently. Even during the years I was taking 5-10 mg of Diazepam for "anxiety", I continued to have these symtpoms, the medicine never did anything to alleviate most of it. My symptoms started in my childhood/adolescence and most are documented in my pediatric records. In younger childhood, around kindergarten the symptoms were more limited to sleep disturbances: â€œnight terrorsâ€ as the pediatrician called them, talking in my sleep, sleep walking, and grinding my teeth while I was sleeping. As I got older and into my pre-teen years the symptoms seem to expand to include other sensory symptoms (or maybe as a young child I couldnâ€™t adequately describe them). I also began to have racing heartbeats, areas of my body go numb, and near syncope (feeling faint). I did collapse once my first year of college. A lot of my symptoms are hard to describe and put into words. BUt they do seem to fit into categories. THe first category I call "other" because it does't fit into any of the usual 5 senses very well. The majority of experiences I have each day fall under this "other" category. Itâ€™s very hard to put into words and I am often reluctant to talk about it for fear people may think I am crazy. When I go through one of these events, I will just feel like I am in some kind of mystical state. I can always orient to who I am and where I am etc.. but itâ€™s as if I have some kind of re-connection to and strange familiar past time/space. Like I am re-experiencing an old familiar memory of some kind; and yet it can happen in a place I have never been before. This feels similar to but differs from deja vu. Although I have had sort of classaic dÃ©jÃ  vu, where everything I say or do seems like I have said it exactly the same way before, but this feels very different. It feels like I am seeing the universe much more clearly for the first time, as if I am approaching some kind of enlightened state where I will soon â€œknowâ€ everything, figure everything out; figure out the mystery of life itself. It feels like a powerfully joyful feeling, like I donâ€™t want it to ever end. There is a time/space quality as if I am experiencing the world â€œbefore timeâ€ as in a priori, primordial, or primeval experience. It has a very spiritual feel to it too, like I am connecting somehow with God. It feels like Iâ€™ve reached some sort of a spiritual epiphany. This type event is a pleasant one that lasts between 1 and 4 minutes or so in length. This happens to me every day at least once, sometimes several times a day. The reciprical to this event happens quite frequently too, it is where I experience a bad bad feeling like impending violence is about to befall me. THere is no specific thought that run through, I just feel like the grim reaper himself is about to walk into my space. I always feel some kind of spiritual annihilation or attack is imminent. I feel filled with absolute terror and panic. THe duration is the same as the pleasant experience but every second feels like an eternity... Another weird experience I get alot is how sometimes I will re-experience old memories... Recently, I was driving to drop off my son to my mother in law's and all of a sudden I felt like I was emotoinally transported back to 1975. I re-experienced a memory from the day my parents had this BBQ/party for my grandfather. Another words instantly I was transported emotionally back to this event, simultaneously I could still visually etc..see the highway I was driving on and my son in his carseat in the rear view mirror etc...It's like a memory has been shoved into play mode out of my mind's CD-ROM archive and I have no control that it is playing. I just FELT emotionally, as I did back in 1975 when I was five...and yet the rest of my senses are orienting to present circumstances!! Smells~sometimes I will smell something that no one else around me does. Usually it has been an the smell of dead mouse, smelly feet, of some kind of strong chemical type smell. Less frequently I will smell something sort of sweet and pleasant; like brownies baking type of smell. It only lasts under a minute and then it is gone. Sound~I frequently get ringing in my ears. It starts off where my hearing is actually gone, then it starts ringing softly, grows so loud I can't hear out of that ear, then begins to fade away. Sometimes I will hear what sounds like a butterfly flapping it's wings right next to my ear; almost inside my head. My hearing has always been super-sensitive. Loud noises or high-pitched noises actually hurt my ears. Taste~there is no specific taste that comes over me, it just appears as a yucky, foul/bad taste in my mouth, even though I have already brushed my teeth for the day etc.. it happens as briefly as the smells I listed above, and doesnâ€™t coincide with ingesting/eating anything. Sometimes foods will not taste right to me, they will taste "off". I put the food aside and when I later return to it, it will taste perfectly fine. Vision~I sometimes I feel as if I am standing from the vantage point of being twelve feel tall, almost as if my body has elongated somehow, it lasts under a minute just as the above symptoms do. Much less frequently I have felt when looking at my hands or feet; like my body part (hand etc...)appears a bit smaller. Again it is very short in duration like the other symptoms, a few seconds or so. I have had a lot of both flashes and floaters since young adulthood. Touch~in localized portion of my skin like my thigh, sometimes my skin feels like there are crawly type feelings under it, almost as if something is moving underneath. At other times a localized part of my skin (like a part of my arm or leg) feels hyper sensitive, even a soft sheet can feel scratchy in that one area of my skin. Touch in general is hypersensitive, if I donâ€™t know someone is about to touch me, say they come from behind me, I get pretty startled. I guess they call this tactile defensiveness? OH yeah the other weird symptom involving touch is where my hands feel powdery. I know...it doesn't even make sense when I say it, but they just feel like they are covered in a powdery substance and it doesn't feel pleasant, trust me. Sometimes I get goosebumps on only one side of my head. IT's very bizzare. Nausea~I have had periods of rapid onset of nausea throughout my day for many years, that has nothing to do with eating. I have not vomited just felt very nauseated. This lasts a few minutes and then goes away. I used to think that maybe my blood sugar was low, and that eating a snack would make it disappear, but eating something has never alleviated the nausea; it just goes away on itâ€™s own. I also get a feeling in my stomach that is similar to hunger but different. It feels like someone has put some kind of fizz in there and it bubbles up and expands or something...I know, another weird thing! Perception~(Alteration of Time) this is a weird feeling and hard to describe but it feels as if someone has just hit the fast forward button or pause button on time. Time, as its unfolding feels either like itâ€™s going slightly faster than it should, or like itâ€™s just a tad too slow, almost like everything around me is going on at a sligthly slower pace. Even the thoughts in my head can feel like slow motion or speeded up depending. The best way to describe it is when you are dealing with a VCR, you can adjust the tracking on the film and there are gradations where you can slow the film down just a bit. These sensations like the others are either momentary up to only a few minutes long. Oh this is a fun one...NOT! Feeling of Detachment from my body- almost Outer Body Experience. This sensation is how I got a diagnosis of anxiety/depersonalization and put onto benzodiazepines as a teen in the first place. I began having a sort of feeling like I was floating a bit away from myself maybe only a foot or two. Almost hovering next to my body. The therapist told me it was depersonalization and recommended medicationâ€¦hence the benzodiazepines. The sensation is like watching yourself performing functions almost as if you are not connected to yourself somehow. Often as a young child I would feel confused and approach my father, mother or teacher and tell them, â€œIâ€™m not sure if I am awake or asleep.â€ Life just felt extremely surreal and detached. This happened frequently and with psychotherapy I was trained to learn how to tolerate these sensations. Now as an adult it has seem to either decrease, or I just got better at ignoring it; Iâ€™m not sure which. Rage attacks/happy slappy~Sometimes I will feel absolutely rageful and I am not certain why. It has nothing to do with circumstances going on and is void of any emotional type thoughts preceding the episode. Lasts typically a few minutes and I am always cognizant at the time that I shouldnâ€™t be feeling so angry and am puzzled as to why I am. ON the contary, sometime I feel really happy that has nothing to do with any circumstances either or any thoughts preceding but since itâ€™s such a pleasant thing, I donâ€™t question it, I just go with the flow. I hope you can appreciate how difficult this is to write because many things are just plain extremely embarassing to experience. I hope you understand this text, many of these things are ineffable and therefore hard to describe. AS you can see, things run the gammit. I have been at times paralyzed with fear, and fascinated by near ecstasy...The first EEG showed sharp waves in my left temporal lobe. I hope I get a diagnosis soon so I can start on medications. It would be great to feel life unfettered by all this stuff. p.s. don't ever feel that your story is weird because as I have learned there's always someone who can top that weirdness! pamela p.s. feel free to email me if you need an ear...

Hi David and welcome, Sorry to hear about your ordeal. But glad to hear that you are recovering. I am currently awaiting results from an Ambulatory EEG test to rule out Temporal Lobe Epilepsy. I have had a slew of strange episodes/events since I was in my teens. I thought I was "crazy" for many years. Now, after reading so many others' stories I don't feel that way. MOst of it seems pretty textbook after comparing notes between my symptoms and the diagnosis of TLE. Here are some of my story and symptoms if you are interested read on... I saw my first neurolgist when I was 19 years old, who then ordered a sleep deprived EEG. He said that because I was on benzodiazepines for treatment of what was felt to be "anxiety", the medications might be possibly masking an underlying illness. He urged me to have another EEG done once I was off these medications. However, I did not come off these medicines for some 13 years (2002) which is why I never had another EEG til recently. Even during the years I was taking 5-10 mg of Diazepam for "anxiety", I continued to have these symtpoms, the medicine never did anything to alleviate most of it. My symptoms started in my childhood/adolescence and most are documented in my pediatric records. In younger childhood, around kindergarten the symptoms were more limited to sleep disturbances: â€œnight terrorsâ€ as the pediatrician called them, talking in my sleep, sleep walking, and grinding my teeth while I was sleeping. As I got older and into my pre-teen years the symptoms seem to expand to include other sensory symptoms (or maybe as a young child I couldnâ€™t adequately describe them). I also began to have racing heartbeats, areas of my body go numb, and near syncope (feeling faint). I did collapse once my first year of college. A lot of my symptoms are hard to describe and put into words. BUt they do seem to fit into categories. THe first category I call "other" because it does't fit into any of the usual 5 senses very well. The majority of experiences I have each day fall under this "other" category. Itâ€™s very hard to put into words and I am often reluctant to talk about it for fear people may think I am crazy. When I go through one of these events, I will just feel like I am in some kind of mystical state. I can always orient to who I am and where I am etc.. but itâ€™s as if I have some kind of re-connection to and strange familiar past time/space. Like I am re-experiencing an old familiar memory of some kind; and yet it can happen in a place I have never been before. This feels similar to but differs from deja vu. Although I have had sort of classaic dÃ©jÃ vu, where everything I say or do seems like I have said it exactly the same way before, but this feels very different. It feels like I am seeing the universe much more clearly for the first time, as if I am approaching some kind of enlightened state where I will soon â€œknowâ€ everything, figure everything out; figure out the mystery of life itself. It feels like a powerfully joyful feeling, like I donâ€™t want it to ever end. There is a time/space quality as if I am experiencing the world â€œbefore timeâ€ as in a priori, primordial, or primeval experience. It has a very spiritual feel to it too, like I am connecting somehow with God. It feels like Iâ€™ve reached some sort of a spiritual epiphany. This type event is a pleasant one that lasts between 1 and 4 minutes or so in length. This happens to me every day at least once, sometimes several times a day. The reciprical to this event happens quite frequently too, it is where I experience a bad bad feeling like impending violence is about to befall me. THere is no specific thought that run through, I just feel like the grim reaper himself is about to walk into my space. I always feel some kind of spiritual annihilation or attack is imminent. I feel filled with absolute terror and panic. THe duration is the same as the pleasant experience but every second feels like an eternity... Another weird experience I get alot is how sometimes I will re-experience old memories... Recently, I was driving to drop off my son to my mother in law's and all of a sudden I felt like I was emotoinally transported back to 1975. I re-experienced a memory from the day my parents had this BBQ/party for my grandfather. Another words instantly I was transported emotionally back to this event, simultaneously I could still visually etc..see the highway I was driving on and my son in his carseat in the rear view mirror etc...It's like a memory has been shoved into play mode out of my mind's CD-ROM archive and I have no control that it is playing. I just FELT emotionally, as I did back in 1975 when I was five...and yet the rest of my senses are orienting to present circumstances!! Smells~sometimes I will smell something that no one else around me does. Usually it has been an the smell of dead mouse, smelly feet, of some kind of strong chemical type smell. Less frequently I will smell something sort of sweet and pleasant; like brownies baking type of smell. It only lasts under a minute and then it is gone. Sound~I frequently get ringing in my ears. It starts off where my hearing is actually gone, then it starts ringing softly, grows so loud I can't hear out of that ear, then begins to fade away. Sometimes I will hear what sounds like a butterfly flapping it's wings right next to my ear; almost inside my head. My hearing has always been super-sensitive. Loud noises or high-pitched noises actually hurt my ears. Taste~there is no specific taste that comes over me, it just appears as a yucky, foul/bad taste in my mouth, even though I have already brushed my teeth for the day etc.. it happens as briefly as the smells I listed above, and doesnâ€™t coincide with ingesting/eating anything. Sometimes foods will not taste right to me, they will taste "off". I put the food aside and when I later return to it, it will taste perfectly fine. Vision~I sometimes I feel as if I am standing from the vantage point of being twelve feel tall, almost as if my body has elongated somehow, it lasts under a minute just as the above symptoms do. Much less frequently I have felt when looking at my hands or feet; like my body part (hand etc...)appears a bit smaller. Again it is very short in duration like the other symptoms, a few seconds or so. I have had a lot of both flashes and floaters since young adulthood. Touch~in localized portion of my skin like my thigh, sometimes my skin feels like there are crawly type feelings under it, almost as if something is moving underneath. At other times a localized part of my skin (like a part of my arm or leg) feels hyper sensitive, even a soft sheet can feel scratchy in that one area of my skin. Touch in general is hypersensitive, if I donâ€™t know someone is about to touch me, say they come from behind me, I get pretty startled. I guess they call this tactile defensiveness? OH yeah the other weird symptom involving touch is where my hands feel powdery. I know...it doesn't even make sense when I say it, but they just feel like they are covered in a powdery substance and it doesn't feel pleasant, trust me. Sometimes I get goosebumps on only one side of my head. IT's very bizzare. Nausea~I have had periods of rapid onset of nausea throughout my day for many years, that has nothing to do with eating. I have not vomited just felt very nauseated. This lasts a few minutes and then goes away. I used to think that maybe my blood sugar was low, and that eating a snack would make it disappear, but eating something has never alleviated the nausea; it just goes away on itâ€™s own. I also get a feeling in my stomach that is similar to hunger but different. It feels like someone has put some kind of fizz in there and it bubbles up and expands or something...I know, another weird thing! Perception~(Alteration of Time) this is a weird feeling and hard to describe but it feels as if someone has just hit the fast forward button or pause button on time. Time, as its unfolding feels either like itâ€™s going slightly faster than it should, or like itâ€™s just a tad too slow, almost like everything around me is going on at a sligthly slower pace. Even the thoughts in my head can feel like slow motion or speeded up depending. The best way to describe it is when you are dealing with a VCR, you can adjust the tracking on the film and there are gradations where you can slow the film down just a bit. These sensations like the others are either momentary up to only a few minutes long. Oh this is a fun one...NOT! Feeling of Detachment from my body- almost Outer Body Experience. This sensation is how I got a diagnosis of anxiety/depersonalization and put onto benzodiazepines as a teen in the first place. I began having a sort of feeling like I was floating a bit away from myself maybe only a foot or two. Almost hovering next to my body. The therapist told me it was depersonalization and recommended medicationâ€¦hence the benzodiazepines. The sensation is like watching yourself performing functions almost as if you are not connected to yourself somehow. Often as a young child I would feel confused and approach my father, mother or teacher and tell them, â€œIâ€™m not sure if I am awake or asleep.â€ Life just felt extremely surreal and detached. This happened frequently and with psychotherapy I was trained to learn how to tolerate these sensations. Now as an adult it has seem to either decrease, or I just got better at ignoring it; Iâ€™m not sure which. Rage attacks/happy slappy~Sometimes I will feel absolutely rageful and I am not certain why. It has nothing to do with circumstances going on and is void of any emotional type thoughts preceding the episode. Lasts typically a few minutes and I am always cognizant at the time that I shouldnâ€™t be feeling so angry and am puzzled as to why I am. ON the contary, sometime I feel really happy that has nothing to do with any circumstances either or any thoughts preceding but since itâ€™s such a pleasant thing, I donâ€™t question it, I just go with the flow. I hope you can appreciate how difficult this is to write because many things are just plain extremely embarassing to experience. I hope you understand this text, many of these things are ineffable and therefore hard to describe. AS you can see, things run the gammit. I have been at times paralyzed with fear, and fascinated by near ecstasy...The first EEG showed sharp waves in my left temporal lobe. I hope I get a diagnosis soon so I can start on medications. It would be great to feel life unfettered by all this stuff. p.s. don't ever feel that your story is weird because as I have learned there's always someone who can top that weirdness! pamela p.s. feel free to email me if you need an ear...

Re: Hi David and welcome, Sorry

Submitted by DavidMcP on Wed, 2006-12-27 - 13:51

Pamela, Thank you for your extensive commentary. I "enjoyed" it and could understand much of what you were saying. I will try to keep some order to my response: Your episodes of the 'Others' sounds very much like what I get. But for some reason, perhaps beyond the potential for a gran mal, mine make me feel scared, but at the same time there is a connection to some "special" source. Like there is a dimension where I have lived another life maybe and for that moment I am crossing into those memories. One of my Neurooncologists asked me about a year ago when I was describing all of this if I had experienced "religiosity," and not just because of the brain tumor and I absolutely had due to this other stuff. There is a term I picked up that is better than deja vu, it is "presque vu," here is the definition of it from wikipedia.com: "Presque vu (from French, meaning "almost seen") is the sensation of being on the brink of an epiphany. Often very disorienting and distracting, presque vu rarely leads to an actual breakthrough. Frequently, one experiencing presque vu will say that they have something "on the tip of their tongue." Presque vu is often cited by people who suffer from epilepsy or other seizure-related brain conditions, such as temporal lobe lability." Perhaps you have read this book "Many Lives, Many Masters" if not you really should read it, all of this makes me think of this book. Prior to my tumor "presenting" I had for the previous three years suffered from the onset, out of no where, from what I self diagnosed as a panic disorder. I too thought I was going insane and started to see a psych to help me work on it. I also at times do get this really fearful feelings for seemingly no reason. Like something bad is going to happen: maybe it is stress related or a bit of an obsessive way I have about emotions at times, but I hate it. Maybe it is my meds? Thank you again for your response, it was very thoughtful. I hope you get your/a diagnosis so they can move forward with an appropriate action plan. I am adding you to the buddy list. David

Re: Hi David and welcome, Sorry

Submitted by Boon on Sat, 2006-12-30 - 09:27

Hi all I also have temporal lobe epilepsy and my experience is much similar to yours and Daveâ€™s account. So I do understand fully where you are coming from and would like to offer some hope and inspiration, but realize that not one thing works for every one. On the contrary my auras and cycles/seizures only occur at nightâ€¦ right before I fall asleep and therefore could be associated with Night Terrors. I had this epilepsy all my life however it does not bother me anymore since I have turned towards spirituality and faith rather than medicine to cope with the auditory hallucinations, outer body experiences (depersonalization), and sleep paralysis that all occur simultaneously. This is ironic since I am a 27 year old 3rd year medical student but I do not believe in numbing the mind with drugs for the root of the problem is not solved but the symptoms are lessened. Not that I do not agree with some of you guys in taking prescription medicine, but just that I found it more empowering to conquer my own epilepsy with spiritual practice and commitment. I turned towards spirituality because I felt that doctors not having experienced these things would just label me and give me a drug. There was a part of me that wanted to validate the weird experiences as being real and not delusional crazyiness and be excused with medication if you know what I mean. However I was not able to do it alone. In the past the auras would occur and I would feel like I was sucked into another dimension where I was myself basically but unable to do anything except to hear the voices screaming, laughing, talking and gossiping to me these are likened to being auditory hallucinations that are elicited when the temporal lobe which perceives sound is stimulated uncontrollably. Similar altered perceptions can also be provoked depending on the specific area of the brain that is stimulated. And literally I did feel as if levitating out of my body to become vulnerable to these elements whether if real/ or unreal whoâ€™s to argue since they are all states of the subconscious/uncontrollable mind, then I would warp back in my body and wake up. But almost every night would be the same, as these terrible things would wait for me. I could talk on and on of how horrific and detailed these experiences were but rather than focus on the weirdness or scariness would like to give light to erase the feeling of impending danger and doom which can provoke the auras which would then trigger the event. I found out that the more I was fearful the more I was stressed from everyday life, the less sleep I got, the more I worried about the event itself the more intense and recurrent the seizure was. Realize that there is a theme of giving too much power to the seizure itself to where you would assume loss of controlâ€”therefore it is essential to take care of oneâ€™s thoughts, feelings and health to assume control. Once you feel that you are not in control mentally the condition can perpetuate itself and worsen. Instead: 1. If auras are initially felt relax, make sure you are in a safe place, away from objects and lie down if you are not in public. Do not feel paranoid. Do not fight it. Just relax.and breathe. 2. Just let it happened without fighting it. Do not struggle physically if possible. Everything is paradoxical and mental. If you decide to struggle physically with it can sometimes worsen. Do not fear. It is very important that you are not scared but actually look forward to being calm. The event will occur and be gone in a matter of seconds once you do learn how to relax and focus on being calm. You will get so good in doing this that the seizure would transform into a deep meditative state where alpha waves are seen. 3. If things get hard visualize something positive or humorous, (I use to visualize the face of someone I truly love and just focus on it until the episode is over). Since these events stir up a lot of anxiety, cause nervousnesss/stress and possibly depression depending on oneâ€™s reserves I thought it was essential to counter this with the philosophies of yoga, spiritual practice and training my mind to relax and counter the heightened state of never ending doom. The more I became actively religious the more I grew spiritually the more I was able to erase all the anxiety that would stir the auras. Even if the auras triggered the seizures my conviction in myself and faith in a higher power gave me the strength to not fear anything and be relaxed and pretty soon everything was over. I realize that I sound like a spiritualist guru that is like reiterating you to become like Neo in the Matrix and believe in yourself in achieving a higher state of mind but basically thatâ€™s how it worked for me. It gradually disappeared over time. Prayers do help in unexplained ways that science cannot dare to validate. And so many things that one can learn about at a bookstore that can enhance ones state of mind. Holistic medicine and spiritual practice have too much merit when it comes to alleviating anxiety and treating stress. Even finding someone that has the same problem or similar makes someone comfortable with themselves and that is a big step. And that where I first started to realize I can control things was when I found another person who understood me. And realize that those of you who think that you are crazy you are definitely not but more so connected with yourself in knowing how you work and how sensitive you can be. All in all you are probably more resilient for being able to cope with such problems (seizures), more self-aware, more imaginary in many ways and most of all compassionate for others who have worst problems.

Epilepsy questions

Comments

Hi David and welcome, Sorry

Submitted by wldhrt13 on Thu, 2006-12-21 - 07:23

Re: Hi David and welcome, Sorry

Submitted by DavidMcP on Wed, 2006-12-27 - 13:51

Re: Hi David and welcome, Sorry

Submitted by Boon on Sat, 2006-12-30 - 09:27

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