Paroxysmal kinesigenic dyskinesia-PKD: A New Treatment 

I´ve suffered from PKD since I was 12 (a much less severe case than the one showcased in the video), and went from doctor to doctor without them knowing what I had, so I always felt so different because I didn´t know anyone who suffered from this. I wound up just living with it until a couple years ago that I was diagnosed. That moment I was given Carbamazepine and ever since I have been so much better.

My 2 kids now (30 and 26) has had this since they were 9 years old and now my granddaughter (10 y.o.) has it too. This almost made me cry because when they had this the specialist told us it is part of the seizures they had when they were babies. At that time, we had no answers (more so, we were living on a tiny island, Guam). We took out a loan just to get them to CA to get the right diagnosis. I'm so glad that this is on RU-vid now and we can see others going through the same things we're going through....we're not alone.

I suffer from this. So little is known about it. I try to live a normal life, but eventually, it will always come back to haunt you.

I have this exact same thing but not as severe.. Its caused when I stand up or get too excited. I'm completely normal when I'm not having an attack, and during the attack I can hear and speak and I'm fully aware of what is happening. I'm only affected in my left arm and leg, and only about 10 times a day. Sleeping, not going long periods without eating, and avoiding stress has helped me reduce the episodes.

I'm 17 and I am also experiencing this for around 5 years? My left foot always feels kind of not 100% controllable and triggers are also coming from my left foot. I went to a neurology doctor and was diagnosed by PKD and I was given dilantin pills, although I tried to stop because I don't like the idea of consuming drugs daily. However this has been impacting my sports life and I have to take the pills a night before having a soccer practice the next day. One thing I learned is that the less stress I am (which occurs during holiday where there isn't any school related homework or other things that can be stressful or if I'm on a vacation and really enjoying it) the less seizures I get. It goes the other way around when I'm having a hard day/week/ being stressed triggering the seizure gets easier and they occur more often. I can always feel if they're going to happen; sudden movements like from sitting to standing or from standing to running will trigger the seizure. I can sort of hold them tho Tried fighting the seizure off a few times and it ended up being worse and affecting more of my body, even my right foot and caused me to lose balance and prone to fall. When it happens tho it only normally it only affects my left foot and my hands and a bit of my face. I still can stand and cover it Once I asked all of my friends if they ever saw me limped when walking and they do notice so my cover up was failed. Been told that it occurs to 1 every 150,000 people Just sharing this with you guys, glad I'm not alone.

Same here, I'm 22 and it's been almost 10 years since I've developped this but it's less severe as I can still stand up if I stop any movement, otherwise I have to bend. Absolutely no one noticed it and the neurologist I just talked to (yes, I lived all this time without asking for a diagnostic) was surprised. I can hide my seizures by faking that I'm making my shoes laces. Also I've got that aura and I just listen to it and slow down to prevent the seizure. The only time I was not able to hide it was in high school for sprint races but people just don't give a fuck anyway they don't notice anything. I've lived without any medicine and was able to do everything normally (I've got a driving license for example). We are all very rare people and I find pride in that. This disease helps me to realize when I'm too stressed and forces me to relax even in hard situations. Of course yours is too strong and cannot be controlled, I sincerely hope you can get the right help.

I'm 21 yrs old I've alike irregularities in my body for 5 long yrs and I was ignoring it. It was increasing day by day but I've normal symptom just for average 10-20 sec then back to normal. I felt it when i stand up suddenly for some work, in excitement, and while running. My whole body is in my control after the episode and I'm quite well as other normal people. Only during the episode I feel unbalancing typ situation from both sides hand, legs and mouth but one side at a time. I can control mostly when i sit somewhere during my episode. I used to hide this from everyone. First time I noticed while playing cricket, I've to take 2 runs in one over but I fall on the pitch. I said it was nothing to my friends just to hide this thing. I visited many doctors like General Physicians also in Homeopathy but no one could understand this symptom. Lastly after 5 yrs I'm in consultation with Neurologist. He told me to For MRI of Brain and Screening of Cervical Spine. But I'm thankful to God for the report was normal. Neurologist wrote my symptom as Paroxysmal Kinesigenic Dyskinesia-told me not to worry and prescribed me 2 medicines:-- Zen Retard 200 mg 1x1 Rivotril 0.25 mg 1x1 Trust me I felt much relief with these medicines. But when medicines finished; and my Regular Diet/meal got disturbed after some day it occur again. I consulted the Neurologist with video of my episode and he said not to worry you'll be cured easily. After seeing this on RU-vid I feel not alone like this strange symptom. And I wish everyone will be cured easily. Hope this will help those in need.

Since this is so rare and hard to find someone with the same thing (and also not so well known for docs too), would it be OK if we all can communicate over something (chat/forum/whatever)? Would be awesome to share stories like progress, if something worsened/got better by doing XYZ, etc. Would be helpful I believe. Please thumbs up so everyone could see. Thanks!

Breaks my heart to watch this. I’m 24 and been having this my whole life. Not this severe. Just like a lot of us, we became pros at hiding it. I thought it was normal, since it was all i knew growing up. Family didn’t find out till around 10 when i couldnt hide it a couple too many times and they knew something was up. Been on carbamazepine since. It works, but idk. That Spidey sense is always with me, and made for a long time scared of my own body. (Im sure everyone knows what I’m talking about, the built up, and being able to trigger it.) Im better with the mental thing now. But was a journey. I don’t wish this on anyone but happy that y’all can relate to this very weird thing.

I noticed myself walking funny one particular day at lunch time in elementary school, but didn’t tell my dad and granny until I was 13. They never noticed it and it only ever happened at school and in public. I went to the doctor over 20 years ago. One lady didn’t like the fact that I drove to the doctor and said I can’t drive. I never mentioned it again.. okay, take that back.. I did.. but then brushed it off and said nevermind. I like to drive and feel completely at ease. I mean as much as I can where I live at. I also don’t like to take pills. But my legs have been acting up lately. 😕 I don’t want to walk weird and be distracted while I work. Maybe worth it to feel drowsy from pills… as long as I can still drive.

I’m 46 years old and have had it since I was 4/5 years old. Watching this video was like looking in a mirror. Mine are under control now with Zonegran but for the first 10 years I had it, I went undiagnosed. I had up to 50 a day, all triggered with movement or straining... standing, sitting, walking, or any sudden movement. I had to move like a sloth! Even chewing too hard was a trigger , which is why Dr Simms’ treatment is so surprising to me. I was on Carbamazepine for over 30 years until I was switched to zonegran. I now have the memory of an 80 year old with dementia. My 18 year old daughter has had a mild form since she was 15. She is opting to not take medicine due to side effects. I think it’s wonderful that there could be a treatment as simple as this to stop or lessen the severity of an episode.

I have suffered exactly the same kind of seizures since I was 10 years old, I'm 48 now, but the doctors have always said that my seizures are Psychogenic Non Epileptic (PNES). All this situation has always been extremely frustrating and painful to me. Only recently, because my son also shows the same kind of movements, have I realized that my problem couldn’t possibly be just a psychological disorder.

Llevo 6 años sin diagnóstico sobre una serie de síntomas, que hasta ahora esta condición es la que más se parece a lo que tengo, además que leyendo los comentarios tengo también muchas cosas en común con ellos. Lo único que no encaja es el hecho de que empezó en un pie, y progresivamente me fue afectando más zonas del cuerpo, "subiendo" desde el pie derecho hasta la cara, en un lapso de 2 años aproximadamente, además de que los síntomas varían con el tiempo, con periodos de fuertes síntomas y perdidos donde casi desaparecen, que pueden durar desde unos pocos días, hasta meses. Otra cosa rara es que su comportamiento se ha ido suavizando, antes los periodos eran muy marcados entre fuertes y nulos síntomas, y ahora casi todo el tiempo estoy igual pero con síntomas más leves

My brother was diagnosed with PKD when he was 12 years old although they called it Paraxysmal Kinesigenic Choreathatosis back then. He is now 50 years old. As you can imagine, before the time of the internet, there wasn't quick access to answers, drugs, or treatments, so it was scary. His disorder peaked at about the age of 27 or so, then started going away slowly and now you would not be able to tell. He never took drugs for it because he didn't like the way they made him feel (side effects), so he accepted the seizures. It affected a lot of aspects that we take for granted like driving, socializing, and hurt a lot of his confidence, but with family and friend support, he came a long way. I tell you this because I've been reading here from many young people and wanted to tell you about someone who is older. For all of you affected by this that are young, (at least the type he has) things should get better so don't let it affect your confidence or social life. (easy for me to say, I know) I just look at my brother now and am so happy the symptoms subsided to almost nothing. I just realized this might be different to PKC, so I apologize if it's not the same, but my understanding is that the symptoms work the same way in the same kind of cycle.

Carbamazepine almost always works I've been taking it since 2015(I'm 15 back then) and now I'm 21 and it has been effectively blocking my attacks. You can literally Iive like a normal person once again as long as you take your pills. The only bad thing is that you must go to a doctor in order to obtain it. And also depending on where you live, I'm worried it might not be cheap for you. For me I live in a country with government subsized healthcare and I'm only required to pay very little for the Carbamazepine . I wish everyone to get well soon from this annoying PKD

I started getting PKD when I was thirteen but didn't tell anyone till I was 18 and it started getting worse, making it impossible to be a film student having to move around suddenly, getting spasms all the time. Luckily it wasn't anything like cancer or anything like that. My doctor gave me Carbomezaphine and it's gets rid of them so long as I take them everyday :3

My Son was diagnosed when he was about 10yrs old and he just turned 19yrs old sept 7th. He takes carbamezipine for pkc but if he miss taking one pill it starts back. His attacks similar to the male in this video. It's heart wrenching to see him go through this.

I've recently been diagnosed with PKD after approx 9 years of being told it was a mental illness of Conversion Disorder/Functional Neurological Disorder. I can totally relate, police have asked if I'm ok as when I'm out for a walk and I stop, sometimes I go to the ground with these seizure like episodes, totally conscious but just like this video you can't move for a bit. Unfortunately I also have parkinsonism symptoms so my new neurologist has started me on levodopa/carbidopa for a while, working super I will say for some of my symptoms, to get this under control before perhaps trying anti-seizure meds like carbamazapine. Thanks for this video, really helps very much knowing I'm not the only one. All the best to him.

I was diagnosed with this too. It doesn't cause pain at all if you don't resist the movement, but sometimes it tried to twist my neck 180 degrees lol so i had no choice to resist it, what a defect body lol. Anyway, i didn't take any medicine. Hit the gym made my muscles pain which will help too reduce the duration of the synthom and the chance of it occurs. Train my shock resistance, idk the word for it but basically when i heard some loud sound (thunder, blow up balloon, horror film jumpscare,etc), i have to stay calm and get used to them, it will reduce the chance of the synthom occurring when i have to stand up sudden, or being called by name. And lastly, this pkd + sleep apnea combo is like playing super hard boss game at nightmare level in a game lol, almost died so many times because of it.

watching this is like looking at myself, I was diagnosed with generalized PKD that turns my whole body into a pretzel and fall on the floor. when i was 23 in the army and im now 26. Im a diesel technician and work on very heavy machinery and i have hurt myself multiple times and injuries are starting to be more serious. I never discussed this to any of my employer since i dont want to get discriminated and itll absolutely be difficult for me to get a job if I disclosed this. I have been skipping my meds lamotrigine and carbamazepine because of side effects. Im considering to take on a different career but Im definitely going to take a huge pay cut compared to my current job and will definitely hurt my family financially. oh well it is what it is hoping its for the best. just glad Im not the only one.

It feels like I dont fit anywhere. I hope doctors finds the cure and help us🙏🙏 Thank you

More power to everyone suffering from it .. i know how it feels when it catches u in the middle of an activity .. its been almost 7 years since i started dealing with this disorder .

i have this. it controls my entire body. ive had symptoms since maybe i was 9 months old. im so sick of it. its nice to know im not alone but im so tired of dealing with it. i dont want to be seen as brave. i dont want to be seen as some sort of survivor or hurt pet or anything pathetic. i just want this taken care of so i can live a life without discomfort.

I've had this since I was a baby. I'm now 19 years old and living with it has been sometimes difficult. I take medicine for it but if I don't take it for a day they return. They're so frequent that its embarrassing to go anywhere. They mostly happen with sudden movements or when I'm getting up from sitting. I think in all my years of being alive I've only fallen twice. Once down the stairs and another time I've ran myself into the wall.

Its really sad but iam glad at the sam time that iam not alone ..

My children and I have PKD. My son's and daughter's both started when they were around 5 years old as did mine. When my children's started I knew it was whatever I had so I had them referred to a pediatric neurologist. My children went on Carbamazepine when they were each 10 and started to go to school on their own by bus or tube. They are now 24 and 26 and still on Carbamazepine. My son has lowered his dose but my daughter has kept hers the same. If they forget to take it for a few days they'll have they have attacks of PKD. I was never on medicine. I was very careful how I moved and tried to hide it by not taking PE in school I took ballet and warmed up very slowly. I never ran especially races. I pretty much stopped getting it when I was in my mid-30s after having both children. I also have Ehlers-Danlos Syndrome so sometimes my joints subluxate or dislocate and I fall but I rarely get PKD symptoms with it.

see mom im not possessed

Wow!! I remember he's fits very well. They only lasted seconds but had no control over anything apart from my brain I knew exactly what was going on and knew when they were about to happen!! I could not control the muscles anywhere arms, legs, face etc. When I was younger I used to call it spakka attacks. I went to the QE in Birmingham when I was about 14 and was diagnosed with paroxysmal kinesigenic Dyskinesia which was apparently rare and even rarer to have 2 people in the same family suffer from it which my elder sister does. If was awful brfore i started taking medication. I remember somedays having up to 100 fits a day. I was put on 200mg of Tegretol. I'm now 30 and although I haven't had a fit in years I only have to miss a few days of medication and I can feel it creeping back!! I became a mater of disguising it!! I can still feel it creeping back like strangly when I'm driving on duel carriage ways and cars driving fast next to me. When I'm in big open spaces pr when there are loads of people around me (I was recently at a Alan Carr stand up show and had to leave half way through as I spent the 1st half concentrating and moving my feet to try and stop any potential fits!! I think because I had no space and was cramped in a small seat!) Also when I'm stressed it's at its very worse!! I haven't been back to the consultant in years although my sister does regularly but I will make a consious effort to do so next year as I feel I need more help with it. It's strange though when I'm drunk it NEVER happens in fact it feels like my muscles are strong and confident like normal people's.

I have had exactly the same problem, after starting with only 1 pill in the morning of Tegretol 200mg Prolonged Release, I have no more episodes, sometimes when I am too stressed I feel the AURA, so I try not to make sudden movements and try to keep calm.

I NEVER HAD SEIZURES, NO HISTORY OF EPILEPSY IN MYSELF OR FAMILY (EXTENDED FAMILY) BUT HAD ABOUT 4 EPISODES LIKE THIS, BUT THEY WERE BAD...BUT THE FINGER THING HE DOES AND HOW HE FALLS AND THEY SAID ITS PAINFUL? YES, YES, YES....AND I BIT MY TONGUE...ITS HORRIBLE...NO DOC, NO INSURANCE...SO, I JUST HOPE TO NOT HAVE MORE.

I started having this problem when I was 9 years old, but never went to a neurologist until I was 14 when it got really bad. I suffered a lot of bullying at school. I'm taking imipramine together with acetazolamide.

I too have this since years, I didnt tell my mom or dad yet, Maybe i did but they were too busy to notice 🤔 Once I had a few college guys come and beat me for befriending a girl in my class, I was unable to fight back due to this and they felt themselves heroes while beating me on the ground. 🙂 Usually all my left side of hand and foot are involved, but once or twice in rare incidents I also felt the other side being involved as well, The severity also depends upon the amplitude of the sudden movement that I make.

I’m suffering from this sincs 3-4 years ago at age 16, mine is mild and it lasts for 10sec i think.. I tried a lot of medications but nothing changed:( I tried Carbamazepine, Lamictal, Oxcarbazepine, Keppra, Depakine.. nothing works. I’m on Phenytoin 200mg right now for like 1month and still nothing changed. I pray everyday to find a medication that works for me:(

p s Sean...oh yes those damned auras...best of luck my young friend,

What causes this? I've read head trauma and read the little bit of info I could off of Google about medicine side effects.

I have this same problem. I have it 100 percent controlled with Carbamazepine (Tegretol) doses of 400mg per day. Good luck to everyone.

I know this myself so well

I have had pkd for 10+ years and I have episodes like this guy if im not on my tegretol.started at 200mg 2× daily but recently doubled that by doctors orders.ive never had a remission period only got worse.but then again I have real bad anxiety and that can make the pkd symptoms much worse.

Ive got paroxysmal dystonia, which looks quite similar, the only difference is it occuring when doing sudden movements or non-intentional movements. I'm drinking 200-400mg of Carbomozepenum (at least it's written so in my language) and it works quite well. It's an anti seizure medicine from epylepsia. Try using some of those, if it doesnt work, its just a bunch of Carbon, that will only strengthen the fibers.

i have been experiencing this since I was 11 or 12, but i just recently told my parents (im almost 16). the episodes have decreased a lot in intensity as well as frequency, so I figured that i might tell them as some kind of fun anecdote or smith they'd laugh at. yea I ended up in a neurology clinic with my parents thinking that i was brain-damaged and meeting death sOON.

Goodnight I have cervical and axial dystonia and have been undergoing treatment with botulinum toxin for 3 years, but I only have partial improvement and then the effect of the botulinum toxin wears off and I return to apply the toxin for life All with my neurosurgeon doctor. And she's going to operate on me, put a brain electrode in my brain, I live in Brazil and I get the toxins for free from the government and my life has changed for the worse, I'm not the same person, my joy of living is gone, I don't have it, but posture I hope everyone can treat themselves. This disease has no cure anywhere in the world and there should be a campaign against this disease, but unfortunately the world only thinks about war!

I also have the same thing

I would recommend Dilantin for any body who is having PKD disease. Before taking consult doctor. It can help people!

I was told by our geneticist that it doesn’t cause pain? My daughter is epileptic since 6’ moths old & her father has pkd.

I was recently diagnosed with PKC which is very similar. I have been taking an anti seizure medication called Carbatrol for it and I haven't suffered an attack in months. Hope this helps :)

I'm 31 now and mostly attack free. Had them untreated from 9 to 15, got on Dilantin for years to eliminate the attacks. Now I don't take it and I don't have attacks

take carbemazepine aka tegretol

I don't understand what the 'new treatment' is being demonstrated here

Omg this is what I go through but I get startled or scared into it … well we r finding out the triggers now ugh poor guy I feel horrible

i was recently diagnosed with PKD.. but i don't get it half as bad as this guy.. are there any treatments ?? i was put on an anti depressant epilepsy medicine.. and it worked while on the pills, but they made me feel depressed and nauseas.

I didnt even read the side effect blank, the only ones I experienced were sleepiness during school/university and the feeling as if everything is slower than usual, the same side most sedatives have. So I suppose your ones are quite too much. Though there are different brand medicines, maybe the doc might give you something that has carbamazepein but in other percentages, way of use etc.

I have a dream to be army but now I realise I am not normal to be join army...😭😭

My episodes started in the 10th I’m 22 now I was fine all the way up to 10th grade then boom my whole life changed out the blu like crazy the Carbamazepine they put me on doesn’t work for me all I do is drink 7 bottles of water and I take iron tablets and some Complex b-50 I still have them one time it stopped for 4 months out the blu but came back and I ain’t do nothing different I kept the same routine and all I just wonder has anyway in here overcame this disease and no longer is dealing with it?

I have it everytime i stop for a stop sign or just stand up from a chair. When i have it i have it for 10 seconds . My whole left arm and my body will go numb . Its like i cant control my own body and i am only 16 , i am afraid itll be with me till the rest of my life . I hope it will go i just want to live a normal life

I was diagnosed almost two years ago, I was close to 25 when I started having the movements. I can still feel Auras with the medication (Tegretol). I take 300mg twice daily. This came out of no where and is just no fun at all lol.

Is it normal to also urinate on yourself during these?

hi ewfkkiimmm275, i also have PKD, although not as serious as the one demonstrated in the video. Currently I am also on 100mg of Carbamazepine, taking it everyday. I used to have those side effects as you mentioned for the first 2 months of taking the med, however, afterwhich I had little to no side effects. Also, Carbamazepine has close to completely stopped all of my spasm attacks. I hope u find this useful.

The same thing happens with me but i lose consciousness. They tell me it is not epilepsy and prescribed me tegretol

I've been struggling with this from more than 11 years, but I just came to know what it was two years ago. I started taking carbamazepine and it worked pretty well during the first year and a half, but it kinda stopped being effective. Any advice?

Well first consult your neurologist wether its a good idea and if u need a receipt for the medicine. I started with 200mg twice a day and lowered down to once a day. Some people consume over 1,5g per day so extra 100-200mg won't hurt IMHO. Consult your doc mandatory

I have the samething and also my daughter.

I have full body dystonia started in April this year started with just my legs then I started having trunk tremors then I has started with dystonia storms which my last one mimicked a stroke it was that bad now I'm on Parkinson medication which I still tremor in my voice and I talk slowly now or stutter in have no dystonia storm but now I lose strength and in my legs I walk to one side I not sure if dystonia was a progressive condition quite worrying though but it's hard to diagnose in UK mine was called drug induced dystonia I taken gabapentin for pain so I'm not sure if that'd the cause but I'm basically left on own to deal with it someone help with information or if it is progressive I practically crawled to shop yesterday so it is effecting my daily life.

Hi, does anyone know if this goes away as age increases? I've been experienced with this since around 7-8 years old, and have been on Carbamazepine since then. I am currently 17.

Is this a symptom of multiple sclerosis?

but is there a way to i prevent it? i've had this since i was like 9 and im 12 now and im on a track and field team. it gets really annoying and it affects my motor skills and i fall over sometimes.

neither do I

Do u know how long is it going to last. I mean to say like is PKD for forever or upto some age.

I hope someone answers me. I have these things happen to me. can I have a job with these things? I'm 21 and know my parents won't always be their, but I don't know what job I can have

i've exact same problem from 6 years i can't drive bike because of it afraid of going outside, Every time I stand up or walk quickly after standing still for a little while my whole left side of my body kind of contorts, my legs stiffen up and my head turns to the side my tongue sticks out and my arms bend up in the air, please could anyone tell me what's the treatment of it?

Zebinix works fine on me

I have it too but doesn't so extrem like him, but I got tablets which helpes against this fucking problem

I suffer from this and I take Eptoin Tablets for this.

Can i do police job with pkd. Do any one have idea?

Does anybody know if this affect your height in any way? Thanks

why would you put something in someone's mouth in the middle of a dystonic spasm? What is a dentist doing treating neurologic conditions

That's great but it's not for treating the disease though

take carbemazepine aka tegretol

take carbemazepine aka tegretol