Question: Hi, my name is XXXXXXX I'm an 18 year old male and I've been desperately searching for answers for a very strange onset of symptoms that have been getting progressively worse over the past couple years. I've been to a neurologist, my pediatrician, an ENT and a Cardiologist . I am currently on no medication and just take vitamin supplements as recommended by my pediatrician (2000 IU Vitamin D supplement). I was on antiseizure medication for a couple months (Zonisamide) from about November 2018 into the start of the New Year of 2019. The reason for this was because I was lucky enough to have an episode in front of my Neurologist which presented like a seizure. my episodes start with a bout of debilitating fatigue which can last up to a few days prior to an episode and sometimes the episodes themselves are a fatigue crash in which I can barely keep myself conscious. I've had two EEGs done in which both came back with nothing except for low brain activity, a spinal tap that came back negative for any infection, an MRI that also came back with nothing except for a mucosal cyst, which wasn't anything either, it just happened to be there, and multiple blood tests that came back with nothing except for low Vitamin D (I had already been taking a daily multivitamin prior to the blood test up to the blood test). I eased off the Zonisamide and told my mom I was fine because I was done having her spend money on me without finding anything; the truth is it's just been getting worse and interfering with everything I do. We never heard any follow up from my neurologist except for a call saying the EEG came back fine. I have an appointment setup with my pediatrician on February 18th. My "episodes", as I've referred to these as, have appeared multiple times throughout the day and the more serious ones occur about once a day. As I've said before, they generally start as a bout of debilitating fatigue and then my sleep wake patterns go off balance. I go to bed at the same time every night, but it doesn't keep my body from acting strangely. I'll fall asleep at around 10 or 11 and wake up 30 minutes to 2 hours later thinking it's midday and unable to sleep up into mid noon and early morning. I don't have good dreams either and I'm always lucid in them, sometimes they're so bad I get afraid to fall asleep. Just as an example, I had a dream where I was stripped completely naked in a cage with a German Shepherd and the walls were covered in flesh and it smelled rotten and disgusting, the blood from the flesh on the ceiling matted the dogs fur and covered my body, the dog had a stitch in its stomach and I was aware what was possibly in it; the key to the cage. I tried to kill myself in the dream to get out, but when I banged my head on the cage my forehead just stung and burned because the skin just started peeling off. I felt extreme starving pains and about an hour or two later the dog started to eat me and I could feel it and I wanted to scream and die because the pain was so extreme but I had no other way out except to kill the dog which I wasn't going to do, no matter how much pain I was in. Eventually I felt a warm sensation and a buzzing sensation and I woke up screaming and sweating and alert like I had been awake the whole time. After the fatigue and sleep problems comes the third most prevelent thing which is losing my memory. I play the piano and guitar everyday for hours and all of a sudden, whether I played the piece 2 minutes or 10 seconds prior I can't remember. I've had to relearn Moonlight Sonata Movement I, two times because I permenantly couldn't remember no matter how many times I left and came back to play it. This happens at random moments until they become gradually more and more frequent and I have an episode. The episode itself consists of a few things and most of the time I'm unaware that one is happening until the middle of it. my vision gets all blurred, I'm aware but for some reason all of sudden I can't do anything; if someone asks me a question, I'm aware they're asking the question but it's like my brain is all over the place and I don't know what's happening for the entire period until afterwards. After it's done, I can recall what was said but it feels like if you tried to remember something from a long time ago and it's foggy. The events of fatigue have gotten worse. Just simply moving causes me to exhaust very very quickly and I don't have control over it. I can't get any refreshing sleep and I feel at a loss. Any and all help would be very much appreciated. best, XXXXXXX Paulk

Hi, my name is XXXXXXX I'm an 18 year old male and I've been desperately searching for answers for a very strange onset of symptoms that have been getting progressively worse over the past couple years. I've been to a neurologist, my pediatrician, an ENT and a Cardiologist . I am currently on no medication and just take vitamin supplements as recommended by my pediatrician (2000 IU Vitamin D supplement). I was on antiseizure medication for a couple months (Zonisamide) from about November 2018 into the start of the New Year of 2019. The reason for this was because I was lucky enough to have an episode in front of my Neurologist which presented like a seizure. my episodes start with a bout of debilitating fatigue which can last up to a few days prior to an episode and sometimes the episodes themselves are a fatigue crash in which I can barely keep myself conscious. I've had two EEGs done in which both came back with nothing except for low brain activity, a spinal tap that came back negative for any infection, an MRI that also came back with nothing except for a mucosal cyst, which wasn't anything either, it just happened to be there, and multiple blood tests that came back with nothing except for low Vitamin D (I had already been taking a daily multivitamin prior to the blood test up to the blood test). I eased off the Zonisamide and told my mom I was fine because I was done having her spend money on me without finding anything; the truth is it's just been getting worse and interfering with everything I do. We never heard any follow up from my neurologist except for a call saying the EEG came back fine. I have an appointment setup with my pediatrician on February 18th. My "episodes", as I've referred to these as, have appeared multiple times throughout the day and the more serious ones occur about once a day. As I've said before, they generally start as a bout of debilitating fatigue and then my sleep wake patterns go off balance. I go to bed at the same time every night, but it doesn't keep my body from acting strangely. I'll fall asleep at around 10 or 11 and wake up 30 minutes to 2 hours later thinking it's midday and unable to sleep up into mid noon and early morning. I don't have good dreams either and I'm always lucid in them, sometimes they're so bad I get afraid to fall asleep. Just as an example, I had a dream where I was stripped completely naked in a cage with a German Shepherd and the walls were covered in flesh and it smelled rotten and disgusting, the blood from the flesh on the ceiling matted the dogs fur and covered my body, the dog had a stitch in its stomach and I was aware what was possibly in it; the key to the cage. I tried to kill myself in the dream to get out, but when I banged my head on the cage my forehead just stung and burned because the skin just started peeling off. I felt extreme starving pains and about an hour or two later the dog started to eat me and I could feel it and I wanted to scream and die because the pain was so extreme but I had no other way out except to kill the dog which I wasn't going to do, no matter how much pain I was in. Eventually I felt a warm sensation and a buzzing sensation and I woke up screaming and sweating and alert like I had been awake the whole time. After the fatigue and sleep problems comes the third most prevelent thing which is losing my memory. I play the piano and guitar everyday for hours and all of a sudden, whether I played the piece 2 minutes or 10 seconds prior I can't remember. I've had to relearn Moonlight Sonata Movement I, two times because I permenantly couldn't remember no matter how many times I left and came back to play it. This happens at random moments until they become gradually more and more frequent and I have an episode. The episode itself consists of a few things and most of the time I'm unaware that one is happening until the middle of it. my vision gets all blurred, I'm aware but for some reason all of sudden I can't do anything; if someone asks me a question, I'm aware they're asking the question but it's like my brain is all over the place and I don't know what's happening for the entire period until afterwards. After it's done, I can recall what was said but it feels like if you tried to remember something from a long time ago and it's foggy. The events of fatigue have gotten worse. Just simply moving causes me to exhaust very very quickly and I don't have control over it. I can't get any refreshing sleep and I feel at a loss. Any and all help would be very much appreciated. best, XXXXXXX Paulk

Hi there! Thank you, thank you for the reply.

My neurologist ordered a spinal tap and a bunch of scans that day and didn't find anything unusual in any of the tests or scans.

I've talked to both my pediatrician and neurologist about a possible psychological disorder and both disagree that it could be that. (I've brought up the constant recurrent night terrors and how graphic they are. I've also been with the same pediatrician since I was born). However, I will definitely go to a psychologist if need be.

This has gotten worse over the past couple of years; I never brought anything up because I didn't realize that some of the stauff was unusual. (Fatigue, bad circulation, shortness of breath, etc.) As these are not things that immediately crossed my mind, it started to get more serious about two years ago when I started getting tired at random points in the day for no apparent reason. (I also have a Right Bundle Branch Block but that was also not found to be a problem except for occasional palpatations.) I've just been at a loss.

Hi there! Thank you, thank you for the reply.

My neurologist ordered a spinal tap and a bunch of scans that day and didn't find anything unusual in any of the tests or scans.

I've talked to both my pediatrician and neurologist about a possible psychological disorder and both disagree that it could be that. (I've brought up the constant recurrent night terrors and how graphic they are. I've also been with the same pediatrician since I was born). However, I will definitely go to a psychologist if need be.

This has gotten worse over the past couple of years; I never brought anything up because I didn't realize that some of the stauff was unusual. (Fatigue, bad circulation, shortness of breath, etc.) As these are not things that immediately crossed my mind, it started to get more serious about two years ago when I started getting tired at random points in the day for no apparent reason. (I also have a Right Bundle Branch Block but that was also not found to be a problem except for occasional palpatations.) I've just been at a loss.

Oh my, I saw spinal tap and made the wrong assumption, my apology.

Alrighty, I'll setup an appointment with my neurologist and also with a psychologist, I very much appreciate your feedback and I'm thankful for sites like these and people like you who are on them, so thank you thank you and I very much appreciate you reading through all of my stuff and taking in account everything, it has been of much help.

Best, XXXXXXX Paulk

Oh my, I saw spinal tap and made the wrong assumption, my apology.

Alrighty, I'll setup an appointment with my neurologist and also with a psychologist, I very much appreciate your feedback and I'm thankful for sites like these and people like you who are on them, so thank you thank you and I very much appreciate you reading through all of my stuff and taking in account everything, it has been of much help.

Best, XXXXXXX Paulk

Thank you, thank you! I definitely will and I'll keep you posted on how everything goes.

Best, XXXXXXX Paulk

Thank you, thank you! I definitely will and I'll keep you posted on how everything goes.

Best, XXXXXXX Paulk