Paroxysmal kinesigenic dyskinesia-PKD: A New Treatment

[@juanpablofuentes3451]

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.

[@eleutheromaniac0559]

Same, took some time for me to find the doctor who knows this. I often wonder that time why I'm being tortured like this and how it is a life without having these episodes, like everybody else My friends nicknamed me kozhi (rooster in my native language) because of this style while running races at school. [They were not disrespecting by calling me that]

[@josephmk8952]

@@eleutheromaniac0559 Same for me as well, so many doctors couldn't diagnose the issue, and lived with it for like 8 years, but thankfully finally got it diagnosed 3 years back and my eptoin tablets do help me control it to a large degree. Over the course of 8 years you learn how to prevent episodes from happening and controlling them without causing a scene if they do lol

[@עומרחכמון-פ1ב]

same story!! suffering from the day i remember myself and was diagnosed at the age of 24, so frustrating... recommended treatment?

[@sripriyaganta7179]

Hi,My son is in the diagnosis phase. Does Carbamazepine have any side effects. Is there any other treatment? Did you outgrow it ?

[@juanpablofuentes3451]

​@@sripriyaganta7179 Carbamazepine does have some dangerous side effects on high doses, thats why its use is monitored, but the dose given varies depending on each case. In my case I use a very low dose and just need to do a lab work every now and then to check that everythings ok and that its not damaging my liver. There are other treatments, but that should be discussed with a neurologist. And it could be outgrown, but its not the usual outcome.

[@tjumayao]

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 KZbin now and we can see others going through the same things we're going through....we're not alone.

[@hey8174]

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.

[@alexarredondo266]

yess it happens only on my left side too when i stand up. have you found something to cure it ? pls respond back pls because im really trying to cure this

[@SahebSorkar]

@@alexarredondo266 same but i take oxitol 300mg it's very worked.

[@justinraphael1398]

@@alexarredondo266 You can't really cure it. The best chances are going in remission in early adulthood. Tegretol has been said to supress it

[@isumitd9586]

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

[@theMiaow]

@@alexarredondo266 you must take medication if you wish to surpress it. There is no cure. I've been taking half of 100mg carbamazepine since 2015 (apx 6 years of this writing) and I've been attack-free other than when i force myself to do push up and the occasional auras.

[@TheCSS25]

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.

[@padhraicronayne2371]

My PKD sounds the just like yours except mine is on my right side! I agree that taking deep breaths can succeed in holding off a spasm but ultimitely makes the next spasm even stronger. I find I get a tingle sensation between spasms to be very annoying when playing sports!!

[@srinivas-bepatriotic8123]

Any best medicine for this?

[@Augvsty]

srinubabu tellam Did you found a medication that works for you?

[@srinivas-bepatriotic8123]

no.....

[@srinivas-bepatriotic8123]

still i am searching

[@josue9290]

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.

[@eleutheromaniac0559]

The shoelace move. I used to do that too😅

[@utkarshkumar9078]

@@eleutheromaniac0559 relatable bro

[@Tiare619]

@@eleutheromaniac0559 me too

[@mikefraumeni5367]

Yup, we are not alone, it's weird stuff for sure, can relate totally.

[@piyushsharma6435]

I do the shoelace thing too😂

[@ritwikravii]

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 KZbin I feel not alone like this strange symptom. And I wish everyone will be cured easily. Hope this will help those in need.

[@MyriamCardenas-vk8wi]

You are so brave....thank you for your testimony.

[@sunitakoneru8453]

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.

[@derekjsoutar]

Dilantin, if you can talk with your doctor. It worked on me. I've stopped taking it and very seldom have attacks now that I'm 30.

[@angelb5279]

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.

[@theMiaow]

Kinda sad that it actually can be inherited by your children. Let's hope one day dna editor technology evolves and can finally put an end to this annoying PKD

[@henrymolina7773]

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.

[@vivekraghuwanshi9756]

Hi bro having the same thing, any update?

[@henrymolina7773]

@@vivekraghuwanshi9756I actually stopped taking the medicine and for like 90% out of it. It’s weird? The last couple years I would only take the medicine every couple days, only when it got really bad. Without thinking about it, I hadn’t taken medicine in about 9 months now. I had a stressful event happen recently and that made me have a lot of episodes but once the stress past, so did the episode. I’m just happy I’m almost normal. Didn’t think it would leave me

[@redditrevealed9858]

Have the same thing, very comforting knowing someone else can understand what it’s like.

[@vivekraghuwanshi9756]

Let's make a group😮‍💨..........I can control it 75% most of the time but sometimes in stress or anxiety it comes really bad and uncontrollable..... but only for 5-7 seconds

[@human-lgrx]

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!

[@mirlindaprendi8136]

Io ho avuto gli stessi problemi dall'età 15-28 anni. Ora ho 51 anni, non ho più episodi ma rimane la paura remota quando devo attraversare la strada dopo che ho aspettato al semaforo. Non mi è stato diagnosticato in tempo, era trattato come una forma di epilessia parziale e non disordine del movimento. Ho saputo di cosa si trattava solo 12 anni fa, dopo l'esame del DNA dove risultò il PRRT2 anomalo. In pratica a certi muscoli non arriva il commando di rilassarsi e rimangono tesi, entrando urtando con gli altri muscoli che devono tenderei per realizzare il movimento. Con il tempo ho imparato a controllare i movimenti involontari. Anche nel.mio caso era coinvolto il lato sinistro, quindi quando si muoveva la mano sinistra la stringevo forte con la destra. Era importante bypassare l'attenzione e dare al cervello qualcosa di più importante da controllare, per esempio stendere bene i piedi diverse volte prima di cominciare a cambiare, fare lentamente i primi 3-4 passi, portare un peso nella mano, alzarsi piano dalla sedia, che con il passare del tempo diventa parte del tuo essere quotidiano.ora conduco una vita normale e la discibesua rimane un ricordo. Faccio i migliori auguri a tutti.

[@betot9484]

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.

[@AnimaniacPro]

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

[@makewithzac9645]

.

[@GregoMyEggoLive]

+AnimaniacPro does the carbamazepine give you any side effects? I'm looking at treatments but I play video games professionally and I don't want to take anything that effects my mental state in a bad way

[@makewithzac9645]

.

[@GregoMyEggoLive]

Zac Covey That's amazing to hear, thank you for the reply.

[@TheGKayneShoW]

I dont know if you will read this comment but did you have an aura which predict you when seizures will happen?

[@theMiaow]

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

[@vivekraghuwanshi9756]

Bro help

[@jtabares1]

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.

[@genie5731]

Were your brother's episodes painful? Mine are totally unilateral and the pain is unbearable. They last about 15 seconds each and come in twos.

[@martyndebbarma7582]

At what age your brother's symptoms subsided

[@mikefraumeni5367]

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.

[@ferminenriquezamorapineda2832]

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

[@Tiare619]

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.

[@Tiare619]

I just got prescribed carbamazepine yesterday for this disorder I’ve been hiding my whole life. My recent disabling days and videos I’ve been watching convinced me to go to the doctor and give medicine a try.

[@vivekraghuwanshi9756]

Hi bro

[@Multitasker1997]

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.

[@MT_Lotus]

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

[@nimishmishra2655]

From what my Doctor said, it can't be cured but you can lead a normal life through medicines. I'm on medication for past 8 years and I almost don't have episodes anymore. I take Eptoin tablets for this.

[@vivekraghuwanshi9756]

Worried about side effects and I haven't diagnosed yet help​@@nimishmishra2655

[@ribin1890]

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.

[@vivekraghuwanshi9756]

Bro is it controlled now??

[@vivekraghuwanshi9756]

I have same problem my bholenath(God) cure me

[@kurtbaron2119]

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.

[@vivekraghuwanshi9756]

Update??😢

[@aemalkhan8605]

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 .

[@mryoshi1221]

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.

[@vvvanteee]

hey!! I also have this since my birth and have medicine for it since 2019 it helped me so much and it doesnt happen anymore other than this one i also had migraine with aura with it do u have it too? If u still dont have medicine to deal with it reply to me and i will tell u what i got and maybe u can ask ur doctor if it may help u ‘💜 i hope u have a good life

[@vivekraghuwanshi9756]

​@@vvvanteeehelp me 😢any updates?

[@robertdlea]

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.

[@domenicdyer701]

I'm struggling with this too robertdlea I'm 13 and I can't even describe the horrific couple of seconds of pain embarrassment and discomfort this caused me and I'm here if ur up to talk about this hit me up my Instagram is king_dom76

[@heatherdivine6128]

I feel it. I have been dealing with it for about 10 years. It's stressful, embarrassing, and makes me just straight up upset at the world. I've noticed self dissociation helps with the intensity of the spells( the weird tingle weakness and the rest of the twists a d motions that follow) but it helps a lot while clenching the fist and releasing it while doing some breathing exercises.

[@Tiare619]

But alcohol isn’t good for your nervous system 😕

[@aemalkhan8605]

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

[@LovelyLindaLou1]

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.

[@lisaneidich9562]

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.

[@sicilboys100]

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.

[@MrEdgar870]

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.

[@vivekraghuwanshi9756]

Update??

[@Mr_Rain_Forest]

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.

[@Tiare619]

I remember a man at a night club trying to take my hand to dance. He might’ve been attractive.. but I couldn’t go with him because I was afraid of my legs going bizerk. My face probably looked like I wanted to but he kept pulling my hand until he gave up.☠️🤦🏻‍♀️

[@vivekraghuwanshi9756]

🤧I have this too any cure?​@@Tiare619

[@viperking974]

see mom im not possessed

[@shadowopsairman1583]

Not funny jerk

[@Augvsty]

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:(

[@tacomadc]

I hope you don't mind my question, but have you ever been to a chiropractor? I've seen it help with various neurological conditions quite well.

[@Augvsty]

bassdoc Nah I didn’t try this one, did you?

[@tacomadc]

abdulrhman. I have been a chiropractor for 20 years. I've seen it do some amazing things with conditions that are "untreatable" by medicine. I've seen Tourettes go away. I've had patients who had daily seizures stop completely.

[@gagarox78]

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.

[@sergiopacheco5009]

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

[@samwade7340]

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

[@vapindabzzz1340]

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

[@isumitd9586]

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

[@Macbabyjd]

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?

[@vivekraghuwanshi9756]

Bro any update?

[@nicolealexandra1392]

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.

[@nicolealexandra1392]

it's nice to read all these comments telling their experiences. as a child i was so ashamed of it and thought it was a sort of stupidity, so i would avoid standing up or moving too much while being surrounded by people. some of my friends noticed but didn't say anything as it may have been a tic, a very long weird and inconsistent one lol. so glad i can finally understand what happens to me. i learned that i should never be ashamed of something i can't control and if someone laughs, it's their stupidity :)

[@renzoorjeda6747]

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?

[@theMiaow]

Take more? Stress and anxiety may also be factors. Sometimes you feel anxious but you just don't know it yourself. It happens to me sometimes. Best is you go back go your doctor and ask for professional advice.

[@ChristinaEarlymorn]

I know this myself so well

[@illy7644]

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.

[@PAndrewsPro]

take carbemazepine aka tegretol

[@Mr_Rain_Forest]

This is a more serious case, I am afraid the monotherapy will work on him sufficiently.

[@haunnacornejo1498]

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

[@kimberlycrowe7843]

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

[@geovaneaquino3959]

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!

[@vdmagee]

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.

[@mikedo8960]

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.

[@genie5731]

Yes I think it generally subsides after the mid-late 20s, with occasional remission.

[@metalhead2276]

I know your comment is a year old, but mine went into remission for 3 years but came back full force. Definitely a bit of a shock, but not a big deal after I got back on the Carbamazapine.

[@martyndebbarma7582]

@@metalhead2276 do u get attacks if u dont take carbamazepine

[@metalhead2276]

@@martyndebbarma7582 yeah, if I don't take them for 3-4 days in a row. Every 6 months I see if I don't need them anymore, but so far I do.

[@martyndebbarma7582]

@@metalhead2276i am having pkd since i was 13 years old, now i am 23. Do we have to take carbamazepine for lifetime?

[@rebekahbourque1957]

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 :)

[@martyndebbarma7582]

Do you get attacks now?

[@Unc3]

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.

[@isumitd9586]

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

[@WillChappell-wtchappell]

I was told there was a decent chance mine would subside before my early twenties, but I'm well past that now and it never stopped. Elevators and street crossings are miserable.

[@JuanTorres-gn2ss]

Will Chappell holy shit someone understands now when i cross the street it’s the worse

[@isumitd9586]

The genetics disorders are worse than any. It just merely kills every moment of once life, when we try to get excited or wanna do such instant moves but we can't. We almost like going through same momentd

[@JuanTorres-gn2ss]

Sam yeah like i was never scared to cross streets and no i am once i get a car i’m never walking across a street

[@wchannel996]

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.

[@vivekraghuwanshi9756]

Bro update??

[@wchannel996]

@@vivekraghuwanshi9756 Hey, Ok so im 14 now and I quit track, but I still play sports requiring lots of movement, such as basketball and swimming. There really isn't a way to completely prevent pkd attacks, but stretching, and making sure you're hydrated/nourished before practice/a game does seem to help.

[@vivekraghuwanshi9756]

Bro update?.....Like how it is I'm 20 years old I have pkd attack for 5-7 seconds

[@Wilson-kp4xz]

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.

[@martyndebbarma7582]

Do u get attacks if u dont take the medicine

[@vivekraghuwanshi9756]

Any update guys??😢

[@XxXx-xu2th]

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.

[@allisonmoore8056]

I was diagnosed with dystonia 17 years ago. Then later with Mercury toxicity from food and vaccinations and dental work. I went through heavy metal i v chelation and all my symptoms went away. I am convinced it was the heavy metals damaging my central nervous system. You should try i v chelation.

[@igu0112]

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

[@khamoshsilence8468]

Hey man same, doctors don’t know what it is and i been researching for 5 years. Now im always afraid to stand up in front of other and i just tell them im lazy even though im not.

[@igu0112]

@@khamoshsilence8468 same here man , when everyone of my friends are standing up and ready to go somewhere im always the last one who is behind and trying not to have it or control it atleast . But its really making me insecure , when im walking outside and someone is behind me i just can walk properly all of a sudden and i just stop and take a breathe and try to control it , i hope it will be good for us and just leave us haahah . Was fun chatting with you my friend

[@khamoshsilence8468]

@@igu0112 we not alone but let me know what it is when you find out. Thanks

[@vivekraghuwanshi9756]

😢😢

[@xhalmers860]

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

[@seanc5481]

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.

[@TheGKayneShoW]

have you find another solution?

[@seanc5481]

No, this has been continuous. I will be seeing a specialist in Arizona some time in March I believe.

[@genie5731]

Did you ever see the specialist? Could you tell me his name?

[@Augvsty]

sean c Hey, what happened to you? can you reply to me please.

[@Marmalade000000]

Is this a symptom of multiple sclerosis?

[@caitlinhs9670]

Yes.

[@Unc3]

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.

[@craigyoung3994]

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

[@lydialovett3002]

StraightUpLazy have you ever heard of convulsive syncope? You can have syncope with convulsions and will lose consciousness (faint) paired with the convulsions.

[@gauravpandey7216]

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?

[@brandocommando5452]

Gaurav Pandey you are the only person to describe exactly what happens to me . It only happens when I start walking from standing up and now also when I walk after standing still. It ranges in severity every day and can last up to 10 seconds . I hate it cuz it happens so often now and is hard to hide it. It kinda feels like my body wants to curl itself and can't control facial expressions making me look retarded. How have u lived with it or minimize it?

[@jtdubs828]

Avoid stress and stimulants try to get into a routine of healthy eating sleeping and exercise. It's worse in the winter no matter what I hide the facial expressions by pretending to tie my shoes lol.

[@gauravpandey8637]

@@jtdubs828 I do it too often to hide my facial expressions whenever I happens on footpath I always pretend to tie up shoes and people stare at me like seen ghost lol, seriously I am sick of my life thinking of suicide than living with it

[@jtdubs828]

@@gauravpandey8637 Get some professional help with the disorder they can give you anti seizure medication which has helped a lot of people!

[@gauravpandey8637]

@@jtdubs828 are you on medication ? If yes do you get attacks just curious to know how affective are they

[@EsmisAmazing]

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

[@imliterallyjustsomeguy]

I hope you ended up finding he answers you were looking for - I'm 19 and have this condition. I live independently from my family with my boyfriend and hold my own job too. :) I don't think I should be in a job that is fast paced, like a restaurant. May I ask if you are able to drive? That's something that worries me.

[@EsmisAmazing]

***** Sadly i cant, because these things happen to me, sometimes up to 100 times a day (no I'm not over exaggerating) im not aloud to drive 😕 and i wish you the best and hope everything goes well

[@imliterallyjustsomeguy]

I understand, at the moment I'm on carbamazepine so my episodes have reduced from 100 to around 330-40 per day which still impacts my day quite heavily so I cannot drive either. Likewise, I wish you all the best x

[@EsmisAmazing]

***** Same im taking the same thing and it helps a lot but sometimes maybe once every three months they happen a lot. It impacted me when i use to go to school 😕

[@A55IFFK]

Esmeralda Garcia Hi. i have been effected by this since i was 15, i am now 33 and they have reduced alot as i have got older, sometimes i could go without weeks not having a single one but the tingling sensation you get prior to your episode is always there, not comfortable but i have worked ways around it. i am currently working and have been for the past 5 years.

[@realfootballfc]

I also have the same thing

[@vivekraghuwanshi9756]

Any update bro?

[@Unc3]

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

[@kayleighcarlisle5833]

I have the samething and also my daughter.

[@vivekraghuwanshi9756]

Me too

[@Gloohem]

@@vivekraghuwanshi9756 which medicine are you taking and can you drive a bike? Can you drop your Whatsapp or telegram number so I can contact you?

[@renobanani432]

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

[@jinjin0135]

Is it normal to also urinate on yourself during these?

[@stargirls8189]

Yes cause you go pretty weak and can’t fight every muscle in your body from stopping these things.

[@uk-5ive154]

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

[@Unc3]

neither do I

[@kennethgibson9049]

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

[@nrjknqda]

unlikely to affect your height

[@pravintidke9367]

Kenneth Gibson It can, chances are there.

[@martyndebbarma7582]

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

[@gauravpandey8637]

Treatment Kiya?

[@martyndebbarma7582]

@@gauravpandey8637 tegretol le raha hu

[@gauravpandey8637]

@@martyndebbarma7582 isme reservation milta hea?

[@gauravpandey8637]

@@martyndebbarma7582 do we get reservation with this disease ? because it's comes under chronic neurological conditions

[@mstrph]

Zebinix works fine on me

[@nimishmishra2655]

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

[@derekjsoutar]

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

[@PAndrewsPro]

take carbemazepine aka tegretol

[@PAndrewsPro]

take carbemazepine aka tegretol