Hi there friends,
my story begins in 92 after the birth of daughter. It started out with strange sensations, the palms of my hands burning for one, however weird that sounds, the doctors had no clue. It progressed from there into feelings of panic, and or disoriented feelings, and odd reactions to visual stimuli, such as when driving my vision would go weird and I would break out into a cold sweat, etc. Sometime later I began to have what I call "glitches" where it was as if someone turned my switch off for one second, always while standing or walking, I dont fall, but I sort of jump and lose my vision for that half a second, I feel the whole thing. As the years went by these became more frequent, as well as symptoms of complete full blown panic attacks.
I went to see a doctor (turned out to be two med students) who asked me if I was on drugs when I described my symptoms to them. I was so embarrast that I shyed away from Doctors for a while. Then began the occassional times when something I was looking at changed right before the jolt (glitch).
For instance I was standing at my stove, and suddenly it appeared to tilt and raise toward my face, it only lasted a second, followed by the jolt. Often before these "episodes" I would be feeling very anxious for some reason, as I often do, as if something is about to happen, but I dont know what. Well, I continued this way for some time and began to develope agoraphobia.
For an entire year I felt like I was walking in muddy water up to my knee's, and went to see an ENT, who did some crazy fluid test in my ears, and concluded that I was fine. Either the funny feeling in my legs went away, or I got used to it. Anyway, finally in 95 I went to see a psyciatrist who diagnosed me with panic disorder.
I told them most of it, mostly about the feelings of panic that occurred in and outside of the home. But I left out most of the details about visual distortions for fear of being locked up in the "funny farm." They gave me diazepam which immediatly put a stop to all of it, and I was able to function again normally, for a while. I took the same small dose daily for about 13 years. Over the years there were many times that the meds seemed to stop working, and I would experience the same episodes all over again, then they would go away for a time again. I remember days having many "glitches" a day, along with the "panic attacks."
There were times when the glitches were a little stronger and I would let myself to the floor during that second or two that I felt the glitch and couldnt see for that second or two at most, as I felt I would fall if I didnt.
My mother inlaw witnessed one of these around 1999, and I went to the doctor who said it sounded like myoclonic epilepsy, but I didnt follow through with the MRI because I figured it was all just my nerves, and since I'd never fallen to the floor and had what I considered a "real" seizure, that the Doctor had to be wrong. Anyway, to make a long... story shorter, In Jan 07 I had a stronger one that lasted longer. I was laughing at a joke my son told me, turned to look at my computer screen to check email, and suddenly half the screen disappeared and the other half was comming right at my face, my right hand was shaking and threw my glassed off my face and across the room, I lost my vision, and I remember telling my son I couldnt see. I was sure I was having a stroke, and sometimes still believe I did. My son reacted quickly, had me lay on my side on a pillow, opened the window for fresh air, and got me some water, he asked if he should call 911, but my vision was comming back and although I felt weak, I no longer felt in danger. In fact I was so... weak and calm after this that I fell asleep for 45 minutes. So, I told my doc who sent me to a neurologist, had an MRI, and was diagnosed with Mesial Temporal Sclerosis. I refused the stronger medication, and continued on what I had always taken, although now it is given to me by my reg doc, rather than a psyciatrist.
Recently I was in a constant state of panic mode feeling, and having lots of "glitches" and panic attacks, or at least what I think are panic attacks. I cant stand to be in noisy public places, wont drive, and can hardly stand to look around when riding in a car, anything with a lot of activity, visual, and otherwise, does a whammy on me, and I develope all symptoms of full blow panic, and my heart beats so... fast.
I just got a new doctor, I told her everything, and she increased my dose after all these years, and it is helping quite a bit, although I dont like feeling drugged, it is better than being in a constant state of panic and derealization. My biggest problem is, that makes me cry, is that I am guessing I have both seizures and panic attacks, and I really sometimes do not know the difference at all. The neuro and reg doc both say that these frequently co-exist in people with Temporal Lobe epilepsy, but it just doesnt make sense to me, and I suppose what I want most is for it to make sense.
I feel embarrast in public when I have a jolt, feel so unsteady to stand in an open ile, I hate bright lights, and lots of noise. My startle response is throu the roof, and any sudden loud noise can cause me to have a "glitch." I hate all of this, I feel so alone.
I dont wish this on anyone, but I guess I am hoping someone here relates too, as selfish as that may seem. My symptoms ten fold at that "time" of the month, which the doc says is "normal" for women, and I become a recluse, and nobody understands why I wish to just be alone at this time. I am often also so.. dizzy, and I wonder what that is about. I remember I was dizzy a lot before ever taking meds, so who knows what that is about. I fell hard on my head in winter of 89 and was knocked out, and the doc says the scarring could have happened from that, or from untreated seizures, but we will never really know. Sorry for the long... story, I just really need to talk to others who might know what I am talking about, what I go throu, what I battle with, mostly the confusion over what is what, and how the heck am I supposed to know?
Recently my husband was laid off, and we dont have insurance for the first time in years, so I cant afford the follow up mri that I was supposed to have had by now. I am taking the extra meds, but I'm scared about the addiction to them. I have to keep telling myself it is needed, that I am not a "druggy."
Since I am so.. against drugs!! Oh.. there is much more to this, and the strange episodes and emotions I have out of no where that do not make sense, it is frustrating when I know that I am a intelligent, stable person otherwise, but yet battle these baffling episodes. The neuro says some of what I think are panic attacks are probably simple partials, and maybe some are panic attacks as well. Sheesh... but why would I have more of them out in public than at home if they are seizures? I am always dizzy, dizzy, dizzy, weather at home, or in public, and in fact it is one key reason I hate going out much. Okay, Ive said enough, lol. I really needed to share, and I appreciate your being here, and your personal experiences and relations are appreciated, as well as advice.
Thanks so much!!
JLynn
my story begins in 92 after the birth of daughter. It started out with strange sensations, the palms of my hands burning for one, however weird that sounds, the doctors had no clue. It progressed from there into feelings of panic, and or disoriented feelings, and odd reactions to visual stimuli, such as when driving my vision would go weird and I would break out into a cold sweat, etc. Sometime later I began to have what I call "glitches" where it was as if someone turned my switch off for one second, always while standing or walking, I dont fall, but I sort of jump and lose my vision for that half a second, I feel the whole thing. As the years went by these became more frequent, as well as symptoms of complete full blown panic attacks.
I went to see a doctor (turned out to be two med students) who asked me if I was on drugs when I described my symptoms to them. I was so embarrast that I shyed away from Doctors for a while. Then began the occassional times when something I was looking at changed right before the jolt (glitch).
For instance I was standing at my stove, and suddenly it appeared to tilt and raise toward my face, it only lasted a second, followed by the jolt. Often before these "episodes" I would be feeling very anxious for some reason, as I often do, as if something is about to happen, but I dont know what. Well, I continued this way for some time and began to develope agoraphobia.
For an entire year I felt like I was walking in muddy water up to my knee's, and went to see an ENT, who did some crazy fluid test in my ears, and concluded that I was fine. Either the funny feeling in my legs went away, or I got used to it. Anyway, finally in 95 I went to see a psyciatrist who diagnosed me with panic disorder.
I told them most of it, mostly about the feelings of panic that occurred in and outside of the home. But I left out most of the details about visual distortions for fear of being locked up in the "funny farm." They gave me diazepam which immediatly put a stop to all of it, and I was able to function again normally, for a while. I took the same small dose daily for about 13 years. Over the years there were many times that the meds seemed to stop working, and I would experience the same episodes all over again, then they would go away for a time again. I remember days having many "glitches" a day, along with the "panic attacks."
There were times when the glitches were a little stronger and I would let myself to the floor during that second or two that I felt the glitch and couldnt see for that second or two at most, as I felt I would fall if I didnt.
My mother inlaw witnessed one of these around 1999, and I went to the doctor who said it sounded like myoclonic epilepsy, but I didnt follow through with the MRI because I figured it was all just my nerves, and since I'd never fallen to the floor and had what I considered a "real" seizure, that the Doctor had to be wrong. Anyway, to make a long... story shorter, In Jan 07 I had a stronger one that lasted longer. I was laughing at a joke my son told me, turned to look at my computer screen to check email, and suddenly half the screen disappeared and the other half was comming right at my face, my right hand was shaking and threw my glassed off my face and across the room, I lost my vision, and I remember telling my son I couldnt see. I was sure I was having a stroke, and sometimes still believe I did. My son reacted quickly, had me lay on my side on a pillow, opened the window for fresh air, and got me some water, he asked if he should call 911, but my vision was comming back and although I felt weak, I no longer felt in danger. In fact I was so... weak and calm after this that I fell asleep for 45 minutes. So, I told my doc who sent me to a neurologist, had an MRI, and was diagnosed with Mesial Temporal Sclerosis. I refused the stronger medication, and continued on what I had always taken, although now it is given to me by my reg doc, rather than a psyciatrist.
Recently I was in a constant state of panic mode feeling, and having lots of "glitches" and panic attacks, or at least what I think are panic attacks. I cant stand to be in noisy public places, wont drive, and can hardly stand to look around when riding in a car, anything with a lot of activity, visual, and otherwise, does a whammy on me, and I develope all symptoms of full blow panic, and my heart beats so... fast.
I just got a new doctor, I told her everything, and she increased my dose after all these years, and it is helping quite a bit, although I dont like feeling drugged, it is better than being in a constant state of panic and derealization. My biggest problem is, that makes me cry, is that I am guessing I have both seizures and panic attacks, and I really sometimes do not know the difference at all. The neuro and reg doc both say that these frequently co-exist in people with Temporal Lobe epilepsy, but it just doesnt make sense to me, and I suppose what I want most is for it to make sense.
I feel embarrast in public when I have a jolt, feel so unsteady to stand in an open ile, I hate bright lights, and lots of noise. My startle response is throu the roof, and any sudden loud noise can cause me to have a "glitch." I hate all of this, I feel so alone.
I dont wish this on anyone, but I guess I am hoping someone here relates too, as selfish as that may seem. My symptoms ten fold at that "time" of the month, which the doc says is "normal" for women, and I become a recluse, and nobody understands why I wish to just be alone at this time. I am often also so.. dizzy, and I wonder what that is about. I remember I was dizzy a lot before ever taking meds, so who knows what that is about. I fell hard on my head in winter of 89 and was knocked out, and the doc says the scarring could have happened from that, or from untreated seizures, but we will never really know. Sorry for the long... story, I just really need to talk to others who might know what I am talking about, what I go throu, what I battle with, mostly the confusion over what is what, and how the heck am I supposed to know?
Recently my husband was laid off, and we dont have insurance for the first time in years, so I cant afford the follow up mri that I was supposed to have had by now. I am taking the extra meds, but I'm scared about the addiction to them. I have to keep telling myself it is needed, that I am not a "druggy."
Since I am so.. against drugs!! Oh.. there is much more to this, and the strange episodes and emotions I have out of no where that do not make sense, it is frustrating when I know that I am a intelligent, stable person otherwise, but yet battle these baffling episodes. The neuro says some of what I think are panic attacks are probably simple partials, and maybe some are panic attacks as well. Sheesh... but why would I have more of them out in public than at home if they are seizures? I am always dizzy, dizzy, dizzy, weather at home, or in public, and in fact it is one key reason I hate going out much. Okay, Ive said enough, lol. I really needed to share, and I appreciate your being here, and your personal experiences and relations are appreciated, as well as advice.
Thanks so much!!
JLynn
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