Paroxysmal kinesigenic dyskinesia-PKD: A New Treatment 1B

[@mikefraumeni5367]

Thank you for sharing this! I've just been diagnosed after finding a neurologist who cared rather previous ones that sent me off to psychiatry because of the weird movements etc. they didn't understand where I was diagnosed with the psychiatric mental illness of Conversion Disorder/Functional Neurological Disorder. Again, thanks for sharing and all the best.

[@christopherjones6872]

I've suffered from this since i was roughly 8 years old, i still remember my first fit as i was only a wee lad in primary school and had absolutely zero idea what was going on, was terrifying at the time. I stopped taking Tegretol when i was about 13/14 as i didn't like how it was making me feel. I have handled the seizures for the best part and have managed to find ways of hiding them when i do have them as they aren't quite as serious as the ones shown above. I find the worst part is how the public deals with them, as you can imagine it can be quite a scary sight for somebody who has no idea what the fuck you're doing so for me hiding the fits which last about 10 seconds was a priority. When i was roughly 16 i stopped having them for about 9 months at the time i was convinced sheer will power would prevail and prevent me from having these odd seizures and i thought that it had but unfortunately that was not the case. Some findings for the people out there that i've managed to log over the years, it would be interesting to see if it was the same for others: 1. My seizures always start in my foot 2. 99% of the time it's my left hand side 3. I do not have seizures when drunk 4. I am more likely to have seizures if smoking cannabis 5. I do not have seizures for at least an hour after waking up 6. More likely to have seizures when nervous 7. most common seizures affect only upper left arm, wrist, leg and feet. 8. More serious seizures which are much rarer affect face, neck and shoulders

[@Mpod1019]

Sounds very similar to myself. It started for me when i was 11 yrs old . I was experiencing seizure like attacks from my feet up through my body to my brain up to about about 20 times a day lasting around 10 seconds also. Ive been taking serapax for about 20 yrs to manage it.

[@siddhubhandari]

Christopher Jones having the same issue

[@AbhishekSharma-fv6nl]

Can i get your whatsapp number .. ?

[@brandeluna6419]

I relate SOOOOOO much to your comment. I also have PKD, I’ve had it since I was probably around 10 or 11. My seizures always start in my foot, but it affects the right side of my body. It typically lasts 10 seconds (at most) and extreme episodes will affect my neck and face as well. I hide my episodes in public by putting my hands in my pocket but I know my wobbly legs and twisted mouth can be a giveaway. I have been on a medication called Carbamazepine for close to 20 years now, if I don’t a pill every few days or so, the seizures will come back. But I want to stop the meds, I feel it is strongly affecting my mental state in a negative way. I would love to have a chance to talk with you about your experiences with PKD, since it seems so rare. Send me a message, it seems like we could both benefit from learning about others’ situations

[@christopherjones6872]

@@brandeluna6419 I know the hands in pocket trick all too well! The Tegretol that I take and mentioned in my previous comment is the brand name for carbamazepine so it seems we're on the same meds. I take 200mg per day and have done now for about 2 years without missing more than a day at a time. It's allowed me to regain some of my confidence and even learn to drive which at the time of writing the comment above seemed a bit of a pipe dream. Appreciate that youtube comments probably isn't the best place for us to have a discussion so if you have any questions or want to discuss in a little more detail then email me [e-mail]

[@HARIS-m16]

Why am I seeing 10years back videos😮 There is no new treatment for this ha?😢 Should I take tablets till my last breath🙂

[@stargirls8189]

Back in those days there probably weren’t exact medications for it yet but nowadays there are. But yes, it will most likely stay all of our lives but I’ve read somewhere else that it could lessen and go away during your 20’s, so i’m not sure

[@glaycierplayz6443]

are you from india bro even i have this disease

[@HARIS-m16]

@@stargirls8189 Thanks for sharing positive energy❤️

[@HARIS-m16]

@@glaycierplayz6443 Yes bro I'm frm India. I'm having this from my teen & now I'm 24 still having this. The doctor said it's very small problem but still have to take medicine daily.

[@HARIS-m16]

@@stargirls8189 Thanks for sharing positive energy❤️

[@craigyoung3994]

Excuse me sir i start to show symptoms of pkd about a year ago. The right side of my body would be affected. I can not open and close my right hand, the right side of my mouth drops and sort of spasms and my right leg gets extrememly week. These episodes can last up to 30 secs and up to 50 times a day. I went to hospital after the first episode and the neurologists were very unsure what it is and prescibed me tegretol and told me to contact them in six months. I took it for a week and could not

[@lgeartz]

Dr. Sims, where are you and how can I get my husband an appt to see you?? I believe he has been suffering from pnkd for years. He Is a disabled veteran and the VA has no interest in finding out what is really wrong with him. We would greatly appreciate any help you may be able to offer.

[@craigyoung3994]

.... Cope on it. I can not get a hold of the neurologists for the life of me. A year later and i still have these occurances. Will my condition worsen? I am 25. Is there any other medication. Your video made me cry

[@siddhubhandari]

Craig Young try tegretol if it works or try pbren 75mg . As i was taking tegretol from.last 8 years and now doctor told me to take pbren 75 for 15 days. And then i will update you the result

[@harrisjairaj]

@@siddhubhandari update?

[@Mr_Rain_Forest]

Craig good news is that there is a reduction in incidence of these attacks with age, specifically after 30. Hope its not severe.

[@swaminathbera_a1]

​@@harrisjairaj update?

[@harrisjairaj]

@@swaminathbera_a1 Not controlled. Dosage reduced.

[@ddsassistant]

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