Hello everyone,
I am a 32 male, now live alone at all times (because I'm scared of myself) and brand new to this.
I am embarrassed because my first thought when reading the posting rules and standards was, "Am I going to your typical TV AA meeting?", then after reading some posts and being extremely emotional because I could relate to so much, I had to walk away, cry a little and then get started writing before forgetting why I'm here again.
I am just getting started with research, know nothing and even when I find something, I forget it and sometimes even forget why I was looking at it. In the last 5 months I have started countless journals, but have managed to lose every single one. I guess writing down what I can remember so many times has helped me remember this much:
First seizure was in July 2008, no seizures again until late October '10.
My first episode lasted approximately 4 hours. I do not remember most of it and really had know clue what going on since I had never experienced this before and was at home alone. I simply woke up with a really bad headache, took some asprin and as soon as I left the kitchen, I collapsed and awoke hours later with carpet burns and bruise like sore spots. I never actually had visible bruises until I started anti-seizure meds. Extreme headache and "tremors" as I refer to them, continued throughout the next day. Leading up to this episode I had a cluster headache and developed a large muscle knot (golf ball size) at the base of my skull on the right hand side of my neck that even hurt touch. I basically ignored this event until later.
It begins again - From October 23, '10 - March 1, '11, I have had 20-30 seizures occurring at approximately 2 month intervals with increasingly longer "episodes" starting with:
October 23 / 24, '11, a 30 minute episode, my second episode ever. It contained 3-4 seizures, around midnight. Just like episode 1, bad headache and knot at base of skull on right side. I visited my regular doctor and was referred to a neurologist. The doctors started me on Valporic Acid. It did not agree with my body. I gained 27 lbs in 3 weeks and was always angry. My doctor immediately changed my meds to generic Dilantin. Even with generic dilantin I have constant stomach pain, joint pain, dizzy spells and a constant dull headache that I have learned to ignore for the most part. I started with 300 mg per day, my weight slowly neared normal.
Then on Christmas ’10. I experienced a 4-6 hour walking and talking episode with frequent collapsing, personality changes and seizing that started just before midnight. Exact number is unknown and my friends had no clue what to do with me or what was happening; but, according to their accounts -
I was seizing every 10-20 minutes. Sometimes only seizing for seconds at a time, some minutes at time. I do not remember anything from this event or how my friends got me home and finally asleep in a restful position. Upon another visit with neuro I was increased to 700 mg of generic Dilatin and my weight climbed again, but much more gradually. Fortunately no constant anger, but I do seem to anger more easily than what I normally would. In addition, wishing I were dead comes with great frequency, even though I have a really great life, if you subtract this stinking seizure issue.
Until my last episode, March 8, '11 during finals at college, I had blacked out or at least not been conscience of the events during the entirety of each event. This last event; however, I was conscience for what I believe was the entire event. It started about a week before, with really bad lock-jaw and a persistent dull headache. Around lunch time the day before finals, my jaw constantly popped loudly and I developed a tear dropping headache every night. As usual hard lines in my vision was blurred with bright gold and empty space, i.e. sky or say air between objects more than 10 feet apart were filled with a lighter bright gold at 15-30 minute intervals throughout the day. I never developed the knot on my neck this time, but certainly had one heck of headache.
I do not remember falling asleep the night before, but I do remember violent tremoring and experiencing tremendous pain all over my body especially in my head, neck, back, hands and feet. All my joints moved abnormally and popped constantly even for me; whose joints have popped daily since a child, getting a well deserved nick name of rice crispy in school. Anyway, I awoke the next morning feeling mostly normal, but far from refreshed and a strong dull headache. I went to work and my headache progressed into a cluster headache around 7PM. I felt the need to vomit many times, but I’m not a person who vomits at least not since the early teen years, so that never happened. Don't know why, I just can't.
During class I began to shake but not tremor until about the same time the headache became extreme and my speech became slurred. During what was supposed to be my finals presentation, I managed to exit the class with my professor and had what I consider my scariest and most painful seizure. I never blacked-out, I remember every freaking detail. The seizures lasted somewhere between 4 to 5 minutes each with me completely unable to control any of my body, defecating on myself. Fortunately a very small amount and if anyone noticed I only received looks of concern.
During the seizures where I was in a fetal position, it hurt like crazy; but, in comparison to the ones where I was folding backwards they were nothing. I had professional help by time the third seizure started, but nothing they did helped and I'm not sure what that was either. I developed a tremendous pain in my lower back that still hurts now, 13 days later. I still have infrequent tremors daily, experience panic often and occasional slurred speech.
On Saturday, yet another new development. For about an hour maybe 2 the right side of my face did not work properly. Not immovable like a stroke, but in appearance yes. My tears were uncontrollable from both eyes and my right eyelid would flick fast, then not at all and repeat. No pain, but still unusual to me.
For now, I guess that’s about it.
Feedback is greatly appreciated, especially the kind that's helps me help the pro's understand what is going on & what I need.
Any professional help I could get outside of what I’m currently getting is desired. I would like a doctor that is not so busy he or she must take calls during my sessions and can reasonably make eye contact while I’m there too. My neuro is in an office building connected to one of local ERs. I guess I see where that could be beneficial; but until I understand what is going on with me, I feel like I need more.
Please help me find some sanity in this.
I am a 32 male, now live alone at all times (because I'm scared of myself) and brand new to this.
I am embarrassed because my first thought when reading the posting rules and standards was, "Am I going to your typical TV AA meeting?", then after reading some posts and being extremely emotional because I could relate to so much, I had to walk away, cry a little and then get started writing before forgetting why I'm here again.
I am just getting started with research, know nothing and even when I find something, I forget it and sometimes even forget why I was looking at it. In the last 5 months I have started countless journals, but have managed to lose every single one. I guess writing down what I can remember so many times has helped me remember this much:
First seizure was in July 2008, no seizures again until late October '10.
My first episode lasted approximately 4 hours. I do not remember most of it and really had know clue what going on since I had never experienced this before and was at home alone. I simply woke up with a really bad headache, took some asprin and as soon as I left the kitchen, I collapsed and awoke hours later with carpet burns and bruise like sore spots. I never actually had visible bruises until I started anti-seizure meds. Extreme headache and "tremors" as I refer to them, continued throughout the next day. Leading up to this episode I had a cluster headache and developed a large muscle knot (golf ball size) at the base of my skull on the right hand side of my neck that even hurt touch. I basically ignored this event until later.
It begins again - From October 23, '10 - March 1, '11, I have had 20-30 seizures occurring at approximately 2 month intervals with increasingly longer "episodes" starting with:
October 23 / 24, '11, a 30 minute episode, my second episode ever. It contained 3-4 seizures, around midnight. Just like episode 1, bad headache and knot at base of skull on right side. I visited my regular doctor and was referred to a neurologist. The doctors started me on Valporic Acid. It did not agree with my body. I gained 27 lbs in 3 weeks and was always angry. My doctor immediately changed my meds to generic Dilantin. Even with generic dilantin I have constant stomach pain, joint pain, dizzy spells and a constant dull headache that I have learned to ignore for the most part. I started with 300 mg per day, my weight slowly neared normal.
Then on Christmas ’10. I experienced a 4-6 hour walking and talking episode with frequent collapsing, personality changes and seizing that started just before midnight. Exact number is unknown and my friends had no clue what to do with me or what was happening; but, according to their accounts -
I was seizing every 10-20 minutes. Sometimes only seizing for seconds at a time, some minutes at time. I do not remember anything from this event or how my friends got me home and finally asleep in a restful position. Upon another visit with neuro I was increased to 700 mg of generic Dilatin and my weight climbed again, but much more gradually. Fortunately no constant anger, but I do seem to anger more easily than what I normally would. In addition, wishing I were dead comes with great frequency, even though I have a really great life, if you subtract this stinking seizure issue.
Until my last episode, March 8, '11 during finals at college, I had blacked out or at least not been conscience of the events during the entirety of each event. This last event; however, I was conscience for what I believe was the entire event. It started about a week before, with really bad lock-jaw and a persistent dull headache. Around lunch time the day before finals, my jaw constantly popped loudly and I developed a tear dropping headache every night. As usual hard lines in my vision was blurred with bright gold and empty space, i.e. sky or say air between objects more than 10 feet apart were filled with a lighter bright gold at 15-30 minute intervals throughout the day. I never developed the knot on my neck this time, but certainly had one heck of headache.
I do not remember falling asleep the night before, but I do remember violent tremoring and experiencing tremendous pain all over my body especially in my head, neck, back, hands and feet. All my joints moved abnormally and popped constantly even for me; whose joints have popped daily since a child, getting a well deserved nick name of rice crispy in school. Anyway, I awoke the next morning feeling mostly normal, but far from refreshed and a strong dull headache. I went to work and my headache progressed into a cluster headache around 7PM. I felt the need to vomit many times, but I’m not a person who vomits at least not since the early teen years, so that never happened. Don't know why, I just can't.
During class I began to shake but not tremor until about the same time the headache became extreme and my speech became slurred. During what was supposed to be my finals presentation, I managed to exit the class with my professor and had what I consider my scariest and most painful seizure. I never blacked-out, I remember every freaking detail. The seizures lasted somewhere between 4 to 5 minutes each with me completely unable to control any of my body, defecating on myself. Fortunately a very small amount and if anyone noticed I only received looks of concern.
During the seizures where I was in a fetal position, it hurt like crazy; but, in comparison to the ones where I was folding backwards they were nothing. I had professional help by time the third seizure started, but nothing they did helped and I'm not sure what that was either. I developed a tremendous pain in my lower back that still hurts now, 13 days later. I still have infrequent tremors daily, experience panic often and occasional slurred speech.
On Saturday, yet another new development. For about an hour maybe 2 the right side of my face did not work properly. Not immovable like a stroke, but in appearance yes. My tears were uncontrollable from both eyes and my right eyelid would flick fast, then not at all and repeat. No pain, but still unusual to me.
For now, I guess that’s about it.
Feedback is greatly appreciated, especially the kind that's helps me help the pro's understand what is going on & what I need.
Any professional help I could get outside of what I’m currently getting is desired. I would like a doctor that is not so busy he or she must take calls during my sessions and can reasonably make eye contact while I’m there too. My neuro is in an office building connected to one of local ERs. I guess I see where that could be beneficial; but until I understand what is going on with me, I feel like I need more.
Please help me find some sanity in this.
