Had it since I was 7, diagnosed at 18, now 44 y.o. My advice, don’t hide it, don’t let it get you down, try to sort it out (I did exactly the opposite by the way). Mine was usually on the right side but would sometimes move to the left as well. I had a few seconds to fight it before it took control of both sides and that was the worst part of it, when I realized I had lost. I had some pretty embarrassing incidents through the years.
Hi buddy. I have been diagnosed with pkd too. Your descrpition is spot on. The right side of my lip drops and spams too during an episode. I was prescribed tegretol snd hate it so i only used it for a week. Im a year in with no medication. The neurologist i saw wont return my calls
hey, nice to see you upload this video. I have the same disorder too. Have been on carbamazepine for a while now, more than a decade and I have been largely fine. I hope you are doing fine too?
I wish the Internet was available for me when I was 12. I'm 46 and have been living with PKD since then. It took until I was 21 for the doctors to take me seriously. I first started showing the classic symptoms that you describe when I was in grade 7, mostly during change of some kind, like a relay race or standing up. I felt like an outcast because I had to stop and fake tying my shoe or something like that. I have been taking carbamezapine since I was about 21. I'm on only 100 mg/day.
wow its incredible how I've been having this for about 5 years now. today i visited my neurologist and i told him what my symptoms were and he told me i had Paroxysmal Kinesigenic Dyskinesia. i hadnever heard of this before, he told me it was rare, not many people had it and it was common amongst younger people.when I saw this video my symptoms are almost identical, except its not just my right side of my body its my whole body, and sometimes my neck and my head move at an angle
Hey, I have exactly the same thing as you since I was a kid (something like 5 years old) I noticed it wasn't normal so I got pretty good at hiding it eventho hard and sometimes people did notice. I didn't tell anyone till I was 18 because hiding it from the world is just to hard. (I was hiding myself because I was scared my parents would take me to the hospital and I was scared of that) I don't have it only on one side but sometimes left most times right sometimes even both sides! ...
After reading all these comments its good to see I wasnt the only person in the world with pkd.i dropoed out of school and life in general at 8th grade cause of it.went undiagnosed for 2 years and would have 40 to 50 attacks a day.was prescribed carbamazapine and it works pretty good.started at 200mg twice a day but had to double recently as the symptoms would still be there but attack would not happen.now im 24 and have the worst anxiety cause of this.pretty debilitating in my case..
I got diagnosed with Paroxysmal Disgenetic Dyskinesia about less than a year ago but I've had it ever since I was 7. I'm 14 now. I really hope I will meet somebody to talk to that would understand(:
so I'm thrilled not to be the only "spaz" in the world!!! I don't mean spaz in a bad way ...just trying to bring some levity to a distressful disorder. I was just in the hospital for 2 weeks with eeg's etc...then 3 days in a psychiatric ward.
It sounds like PKD (Paroxysmal Kinesigenic Dyskinesia) as my son. It is a fairly new movement disorder and not enough data to track the possible sources. He had for a while until the attacks were more often when he was 15. Each attack lasts about a few seconds. There are other medicines can control the symptom. I am wondering if you 1) like to play aggressive video games with lights and sounds; 2) any poor eating habits. Try to find any similar backgrounds to experiment new changes.
Ah, something recent. I'm thinking I might have PKD, but it only happened when I'm working, possibly stress related. Mine is a violent, rapid jerking, from my head to my feet, usually no more than a few seconds. But at work, I will shake, twitch, and twist into various positions (because I sit down when it happens), sometimes standing up suddenly, or simply vibrating, for 5 minutes to 5 hours, average 2 hours non-stop.
All that you said pretty much describes what I've been going through for years, but I've always been to scared to talk to doctors about it. Just a bit different. When it happens to me it's not a specific side of my body it's pretty much all of my body, and usually my head will be forced backwards. Also I sorta find it hard to talk when it happens. Can anyone help me out on this? I've been clueless about what it is for years and it would be really reassuring if I could get some input.
I BEGAN THIS SAME MEDICINE LAST NIGHT AND GOT THE FIRST NIGHT SLEEP IN WEEKS. IT WAS WONDERFUL. I UNDERSTAND IT TAKES TIME TO ADJUST TO IT. BUT IN 9 YEARS THIS IS THE FIRST RELIEF I HAVE GOTTEN EXCEPT WITH DOPAMINES. WHICH ONLY WORKED TEMPORARY AND IN SHORT BOUTS. I AM BEING SEEN AT THE WASHINGTON UNIVERSITY FOR MEDICINE IN ST LOUIS MO. I AM THRILLED WITH THE CARE I GET THERE. YOU SHOULD ATTEMPT TO GET TO THAT MOVEMENT DISORDER CLINIC. WONDERFUL BUT ALSO BUSY. IT TOOK ME A YEAR FIRST APPT.
What are the side-effects you fear? I have been told taking small doses of 200-300 mg is harmless. I have personally not experienced anything -ve other than alcohol intolerance. I do not drink much alcohol. I tend to get my attacks if I drink it since it interferes with the drug. Both the auras and spasms have disappeared the moment I started taking the drug and I feel infinitely better.
i have the exact same condition but on the left side...leg, hand 5-10 seconds exactly. have been taking medicine for maybe 14 years now. any new tips? i think they started when i was about 13.
Well, I can't exactly remember. I started my tablets when I was a kid. May be in a week or two. The dosage prescribed initially was more and was gradually reduced. I am guessing the dosage isn't sufficient. I did not experience any side-effects. None I can remember. Also, the doc prescribed this after some tests such as EEG. Why don't you ask the doc?
This same thing happens to me, but on the left side. It sucks, but I just went to a neurologist today and got examined and now I'm on a certain medicine for it. Hoping it works!
some times i get the effects in the right/left side of my body but sometimes i get it in both idk about anybody else with this disorder but i do not feel like has anything to do with my brain but my nervous system i have spells when i get up after at rest for a while or i try running after walking but before it happens i get this tingling kind of feeling in my feet which leads me to belive it has something to do with my nervous system
No one believes me that i have this condition. I went to doctors several times and all them told that it was probably low blood pressure. I'm 15 years old and its super embarrassing when it happens in public. I told my parents and they wouldn't believe me. They think cause of this is because of playing the computer too much (which i barely do now). What can i do?
Thank you so much for your video. I got it when I was in my 40s, which is very rare. Doctors thought it was psychological or caused by stress for three years. I finally was sent to a doctor who has someone at his office who had dystonia and he sent me to see a doctor in Baltimore. I finally was prescribed Carbamazepine which gave me back my life. I also use Tizanidine as a backup to stop the spasms. I am very active and even can still run with my wife.
I have a "mysterious" condition as well that was diagnosed as Paroxysmal Dyskinesia. However, my episodes can last for hours, longer if I don't lie down and stay still. Oddly enough, if I'm able to fall asleep (not always an easy thing to do) even for less than 5 minutes, it seems to wipe my brain clean and my symptoms are mysteriously gone upon waking. Can you look at my videos, I have Part I and Part II. This was filmed quite a few years ago and my condition, frequency and duration has gotten worse. For instance, during a bad attack, I completely lose my speech, I sound like I just drank a fifth of vodka! I also experience frequent bouts of double vision throughout the day, I don't know if this symptom is part of the PKD or independent of it. In a word, my life is frustrating as hell although I appear very "normal" in between episodes. I have recently obtained and had trained a Mobility Assist Dog who helps me while I am out in public, by holding on to her harness, it's not easy but I can usually get home or to a safe "landing place".
i was dignosed with this disorder when i was 5 or 6 im am 18 so ive had this condition for roughly about 12 to 13 years the neurologist perscribed me with 100 mg of tegratol ive had MIRs done muliple times ive also had EEG test but in the the end ive never been told what causes it. also i belive taking the meds they have perscribed me has increased my chances of having a spell. ive never talked about this disorder with someoneelse who has it but when i have a spell i do not loose consiousness
