I am 47 years old and was diagnosed at 13. Originally the diagnosis was choreathiotis but was changed to pkd in 2003. I've taken dialantin since my original diagnosis and has been effective, but it has side effects, which I ignore because I need to take it regardless. It is not fun. I grew up with anxiety and the fear that I could completely spaz out in public in front of everyone
@@cAlLmEBRuCEE I'm still taking dialintin aka Phenytoin. I was prescribed 400mgs a day, but only take 200 mgs(2 pills). I find that to be an effective dossage. Honestly, I don't know what side effects I experience because I've been taking it so long, I really don't know the difference. They say it causes learning and concentration dissabilities, which I definitely experience, but can't necesarily attribute to the medication. I do get migraines, which is a side effect. It's such a rare disease and so little is known about it. A lot of neurologists have never even heard of it. I just try to live my life and don't let it prevent me from doing anything. By the way, my name is Chris Noel, Sunita Koneru is my wife and posted on her account. If you have any more questions or information about it, you can message me on Facebook. I know very little about it myself.
This one is so similar to mine, I was diagnosed when I was 12-13 I’m 18 now, under treatment still taking medicine, never happens again unless I stop eating the medicine
I need medications soon. Had this my whole life and can’t hide it. It suddenly got worse after a pitbull scared me one recent night. Used to be only when changing pace. I hope medications will help. I’m 38 and felt symptoms in elementary school!!
I also have PKD. It happens me whenever I stand up quickly or start running instantly like this. I am taking Phenytoin Eptoin everyday and I don't get attacks now. But If I stop taking it the attacks again.
Whether scientists r working for PKD for a better solution? because this is not just a disorder but it directly affects the functions of brain which induces abnormality in emotions
@@wonpeel3422 I know it's due to genes but regular leg exercises can beat this disorder if I make my mindset. It becomes sick to depend on its medicne all the time.
If there's no permanent solution to this then atleast reduce PKD as it affects BRAIN in a most different way. It brings emotions like angry, crying, thinking etc in any situation
@@user-cu2sn4cg1ri use the same but for how many years we will stay depend on this medicine at the end our kidney will have more problems i want to become free from this disease
