I hate giving my history and I am sorry that I am going to sound really blunt and unattached. It's just not one that I like to think about. And I am currently running on only 50% of my anti seizure medication, because I have an EEG coming up in ten days. And it effects my social skills.
1. I have been misdiagnosed as having PTSD, Dissociative Disorders, social anxiety, and major depressive disorder.
2. I don't have any trauma to back up the PTSD and Dissociative Disorders so a REALLY CRUDDY unskilled "counselor" with a Bible degree, put me under hypnosis when I was young and naive and trusting and recovered memories of horrible, horrible abuse that never actually happened. I spent five years in a special level of hell.
3. In 2010 I started falling to the ground at random. Just folding and hitting the floor. Busting my head open and giving myself black eyes.
4. I spent months trying to figure it out, before a sleep specialist thought I slept too much, and it surely had to be narcolepsy. Although my MSLT provided no REM sleep. She provided me with multiple stimulant drugs. None of which helped. She left me to fend for myself after I overdosed on the GHB she gave me. Citing that my mental illnesses was too severe for her to be able to help me.
5. I was in 25 psychiatric wards between the years of 2007 and 2011 and had overdosed a dozen times. I had auditory, tactile and ol factory hallucinations. I have obsessive images to constantly kill myself. I am spacey and dissociative. And at any given time I can go ballistic and just attack myself. Hurt myself so bad that it would be impossible for me to withstand the pain currently as I sit here.
6. In 2011 I was accidentally placed on Tegretol and then a little later topamax. Since nobody could find a legitimate diagnosis they were just taking stabs in the dark and putting me on medications that wouldn't even help my specific diagnosis. I had been on almost 40 different medications and given a total of 15 diagnosis, most of which didn't stick. Different psychiatrists at different hospitals diagnosed me with different things and placed me on different medications. Everybody had an opinion and nobody had an answer.
7. Immediately upon starting tegretol the dropping spells stopped.
8. Immediately upon starting topamax my mental illness nearly disappeared. NEARLY. At least the parts that rendered me helpless and hospitalized. I stopped attacking myself, the images of killing myself stuff stopped flashing in my head constantly.
9. I got my license back, left my 24/7 care treatment team and generally got on with my life. I was told "we finally hit the right combination". I never saw another hospital again.
10. A couple years go by and things just don't seem right. I discover my memories are bogus, and I start to worry about myself from a neurological perspective.
-My memory is poor
-I have suddenly became facial blind, which is the weirdest symptom to me, it doesn't even make sense.
-I am spacey and dissociative and often have periods of Jamais vu, even if not followed by a seizure
-My social skills are at the point now where I spend 95% of my day inside. I seem to lack the ability to communicate with people on their level. My current therapist wants to place me on the aspergers scale, but that's impossible. In high school I had more friends then I knew what to do with. Aspergers doesn't show up in adulthood.
-I still have ol factory hallucinations of smelling dead rotting something.
-I have horrible panic attacks that leave me on the floor, screaming at the top of my lungs and hyperventilating like I am being stabbed to death. My psychiatrist and I have tried a number of medications to help them, but at the end of the day only paper bags work.
- And I am tired constantly.
In general terms I cannot function on a real level.
I ask my psychiatrist about it and my PCP and they refer me to neurophysiologist. I spend 2 hours in the waiting room and fend off one panic attack. The man takes one look at my chart from 2009 and says I don't have temporal lobe epilepsy. He doesn't even listen to what I have to say. Just that I saw one provider in his hospital in 2009 and that's a determining factor for him. He starts treating me like a child. Either I am not grown enough at 26 to know my own body, or I am too mentally ill to.
I somehow muster the strength to stand up for myself. I realize this man is judging me based on my mental health record and I am confused why, since people with TLE have mental health records most of the time.
I tell him to just listen and I explain to him what I basically just explained here. I even give him medical records of psychiatric stays where I have attacked myself and lists of medications and diagnosis that I have accumulated, trying to prove a point that clearly nobody knows what this is and trying to draw a definitive line between who I was before anti seizure medications and who I am after.
And then he says "Well if you're so much better off now, why are you here?"
I ask him to please clarify that. He says "well if your symptoms are so much better now than they were, why are you here in my office? Why do you need me at all?"
I am speechless and in the end I can't even answer him. It's like he heard nothing that I said.
I am assuming that he has other patients with temporal lobe epilepsy. Would he send them to a regular psychiatrist to get treatment for their seizures? I assume that he knows that there is always room for improvement with epilepsy and he's really going to let that up to a doctor who deals with the human psyche to determine that for me?
He then exclaims "I'm sorry I don't really deal with mental health, I deal more with seizure disorders". I try to explain to him that that's the reason I am there. That he's not listening to me.
And the worse part is, is that this man had really good reviews. That's why I chose him. I assume that he's not great with mental health patients though. Finally after falling into tears he agrees to do an ambulatory EEG. But he makes me wait four months for it. As if I haven't been waiting 6 years to get my life back on track.
He gave me no specific instructions and my regular EEG didn't show anything. My PCP said it was probably a mixture of. My epilepsy not being sensitive to flashing lights or hyperventilating. And the fact that I was on tegretol, topamax and valium. I fear that this man will simply throw in the towel if this EEG doesn't produce anything, so I dropped my anti seizure medications down myself two weeks ago and I feel like total crap. I have already started to get the flashes of self harm. But I haven't acted on them. But I haven't gotten any flashes of my death yet. But in general I just feel like crap, spacey and sleepy and out of it. I can't "fail" this eeg. This neuro is a tool. And my insurance doesn't give me the option to switch.
1. I have been misdiagnosed as having PTSD, Dissociative Disorders, social anxiety, and major depressive disorder.
2. I don't have any trauma to back up the PTSD and Dissociative Disorders so a REALLY CRUDDY unskilled "counselor" with a Bible degree, put me under hypnosis when I was young and naive and trusting and recovered memories of horrible, horrible abuse that never actually happened. I spent five years in a special level of hell.
3. In 2010 I started falling to the ground at random. Just folding and hitting the floor. Busting my head open and giving myself black eyes.
4. I spent months trying to figure it out, before a sleep specialist thought I slept too much, and it surely had to be narcolepsy. Although my MSLT provided no REM sleep. She provided me with multiple stimulant drugs. None of which helped. She left me to fend for myself after I overdosed on the GHB she gave me. Citing that my mental illnesses was too severe for her to be able to help me.
5. I was in 25 psychiatric wards between the years of 2007 and 2011 and had overdosed a dozen times. I had auditory, tactile and ol factory hallucinations. I have obsessive images to constantly kill myself. I am spacey and dissociative. And at any given time I can go ballistic and just attack myself. Hurt myself so bad that it would be impossible for me to withstand the pain currently as I sit here.
6. In 2011 I was accidentally placed on Tegretol and then a little later topamax. Since nobody could find a legitimate diagnosis they were just taking stabs in the dark and putting me on medications that wouldn't even help my specific diagnosis. I had been on almost 40 different medications and given a total of 15 diagnosis, most of which didn't stick. Different psychiatrists at different hospitals diagnosed me with different things and placed me on different medications. Everybody had an opinion and nobody had an answer.
7. Immediately upon starting tegretol the dropping spells stopped.
8. Immediately upon starting topamax my mental illness nearly disappeared. NEARLY. At least the parts that rendered me helpless and hospitalized. I stopped attacking myself, the images of killing myself stuff stopped flashing in my head constantly.
9. I got my license back, left my 24/7 care treatment team and generally got on with my life. I was told "we finally hit the right combination". I never saw another hospital again.
10. A couple years go by and things just don't seem right. I discover my memories are bogus, and I start to worry about myself from a neurological perspective.
-My memory is poor
-I have suddenly became facial blind, which is the weirdest symptom to me, it doesn't even make sense.
-I am spacey and dissociative and often have periods of Jamais vu, even if not followed by a seizure
-My social skills are at the point now where I spend 95% of my day inside. I seem to lack the ability to communicate with people on their level. My current therapist wants to place me on the aspergers scale, but that's impossible. In high school I had more friends then I knew what to do with. Aspergers doesn't show up in adulthood.
-I still have ol factory hallucinations of smelling dead rotting something.
-I have horrible panic attacks that leave me on the floor, screaming at the top of my lungs and hyperventilating like I am being stabbed to death. My psychiatrist and I have tried a number of medications to help them, but at the end of the day only paper bags work.
- And I am tired constantly.
In general terms I cannot function on a real level.
I ask my psychiatrist about it and my PCP and they refer me to neurophysiologist. I spend 2 hours in the waiting room and fend off one panic attack. The man takes one look at my chart from 2009 and says I don't have temporal lobe epilepsy. He doesn't even listen to what I have to say. Just that I saw one provider in his hospital in 2009 and that's a determining factor for him. He starts treating me like a child. Either I am not grown enough at 26 to know my own body, or I am too mentally ill to.
I somehow muster the strength to stand up for myself. I realize this man is judging me based on my mental health record and I am confused why, since people with TLE have mental health records most of the time.
I tell him to just listen and I explain to him what I basically just explained here. I even give him medical records of psychiatric stays where I have attacked myself and lists of medications and diagnosis that I have accumulated, trying to prove a point that clearly nobody knows what this is and trying to draw a definitive line between who I was before anti seizure medications and who I am after.
And then he says "Well if you're so much better off now, why are you here?"
I ask him to please clarify that. He says "well if your symptoms are so much better now than they were, why are you here in my office? Why do you need me at all?"
I am speechless and in the end I can't even answer him. It's like he heard nothing that I said.
I am assuming that he has other patients with temporal lobe epilepsy. Would he send them to a regular psychiatrist to get treatment for their seizures? I assume that he knows that there is always room for improvement with epilepsy and he's really going to let that up to a doctor who deals with the human psyche to determine that for me?
He then exclaims "I'm sorry I don't really deal with mental health, I deal more with seizure disorders". I try to explain to him that that's the reason I am there. That he's not listening to me.
And the worse part is, is that this man had really good reviews. That's why I chose him. I assume that he's not great with mental health patients though. Finally after falling into tears he agrees to do an ambulatory EEG. But he makes me wait four months for it. As if I haven't been waiting 6 years to get my life back on track.
He gave me no specific instructions and my regular EEG didn't show anything. My PCP said it was probably a mixture of. My epilepsy not being sensitive to flashing lights or hyperventilating. And the fact that I was on tegretol, topamax and valium. I fear that this man will simply throw in the towel if this EEG doesn't produce anything, so I dropped my anti seizure medications down myself two weeks ago and I feel like total crap. I have already started to get the flashes of self harm. But I haven't acted on them. But I haven't gotten any flashes of my death yet. But in general I just feel like crap, spacey and sleepy and out of it. I can't "fail" this eeg. This neuro is a tool. And my insurance doesn't give me the option to switch.
Your situation sounds absolutely terrible. I didn't get diagnosed at first because it was brushed off as "oh you took a diet pill, don't do that, it's bad for you." It wasn't even one that had ephedrine or anything... Not nearly enough to cause a seizure in a regular, healthy person. And then when I mentioned something again to my PCP about feeling like I was going to have a seizure, I was sent to the ER where I got a blood test... and then that was it until my auras got worse and worse and I had a seizure while I was deployed in Afghanistan.