I woke up Paralyzed! A real hypokalemic periodic paralysis attack.

This is a true attack of hypokalemic periodic paralysis. Triggers for this attack were a high carbohydrate meal and exercise without pre-medication. The patient in this video is a physician and is being analytical during the attack. This attack is among the most severe he has had.
#PeriodicParalysis​ #Neurologocial​ #​RareDisease
Most people are diagnosed with either Hypokalemic Periodic Paralysis or Hyperkalemic Periodic Paralysis, more info can be found at www.periodicpa...​
We'd love to hear from you. Comment below on your experience with PP or with questions about the condition.
You can also donate at
www.periodicpa...
Your donation will help with Dr. Cannon's genetic research or a list of other extremely helpful options. The great thing is you can decide how you want your donation to be used.
________________________________________
Connect with us on social:
Facebook: / periodicpara...​
Instagram: / periodicpar...​
________________________________________
If you liked this video, please hit the like button, subscribe to our channel and hit the bell button to receive future videos.
#PPA​ #NotFaking​ #paralyzed​ #periodicparalysis #periodicparalysisassociation
________________________________________

[@tomangley4906]

As someone who has experienced this, it's a bit terrifying!

[@lindafeld9424]

I am sorry! Do you feel you are well controlled medically? Please contact me at [e-mail] if we can help!

[@PeriodicParalysisAssociation]

Yes, episodes of paralysis can be terrifying. Sharing our stories and feelings can help us understand that we are not alone and there are people like us that relate to our feelings and struggles. Thank you for sharing yours. At the PPA our hope is that by sharing these videos and stories you can find hope, support and resources that will help you navigate living with PP. Be sure to subscribe to our channel so that you can stay tuned for more episodes.

[@tomangley4906]

@@lindafeld9424 Linda, It was you and PPA that finally put me on the right path. I reached out to you and you immediately responded to my text. You referred me to Dr Jerath whom I have met with several times now. Thank you.

[@alishamurdock3796]

I have an appointment with my physician this coming week. I would like for her to write a prescription for the potassium drink. What do I tell her to prescribe?

[@chucklebutt4470]

@@alishamurdock3796 this isn't medical advice but potassium bicarbonate, mine is branded as Effer K

[@m.j.c.183]

This was heartbreaking to watch, It was like seeing myself :-( I have Hyperkalemic PP and went through so many of these attacks through my lifetime only mine was elevated potassium levels. I remember waking up and not being able to move anything , HORRIBLE feeling. I am now on Keveyis and it has been a God send for me. Have only had like 1 paralysis attack in the begging of starting of taking this medication and that's it. Have not had not one since then and its been well over 2 years since starting that medication. So far so good.

[@PeriodicParalysisAssociation]

M.J. C. That is wonderful news. Being successful with your treatment and management of PP is a goal we all hope to reach. Glad to hear you have reached it! Also, thank you for sharing your inspiring success.

[@user-fj1lt9cc2f]

Just like me but mine is so much worst having this for most my life I felt like the 1 and the millionth. Sad to see but so grateful there is a community ❤ god bless all . My attacks happen every night after I sleep I don’t have any doctor medications but do take over the counter potassium pills like 100 pills a day no lie just to keep my body moving

[@user-fj1lt9cc2f]

I need to know how to get this keveyis this might be my blessing this condition really takes a toll on my mental health

[@NanafiedEmm]

I had this and i feared for my life. I cried so much.

[@alishamurdock3796]

Thank you for sharing this. All of this is VERY familiar. I will take this to my doctor.

[@lindafeld9424]

Alisha there are several different brands and flavors of potassium . I think this page from our website will help. periodicparalysis.org/medication-for-treating-hypo-periodic-paralysis/ You need one of the ones that comes in individual packets that are easy to carry. One brand name is K-Lyte but there are many generics. all are equal in how they work and most are 10-20 mEq packets. From experience I do suggest that orange flavor tastes the best when dropped into water. another popular one among patients is Effer-K.

[@PeriodicParalysisAssociation]

Glad it was helpful! We are doing what we can to spread awareness of this rare condition. Please be sure to subscribe to the PPA channel so that you will be able to catch all our videos.

[@alishamurdock3796]

@@lindafeld9424 Thank you, Linda. Unfortunately, my doctor won’t prescribe anything other than the 8MEQ pills I’ve got. When I tried to explain this wasn’t plain occasional low K, and something more serious (having more episodes and loads of heart arrhythmias) she simply said she’s afraid of me having too much K. This told me she simply doesn’t understand HypoKPP and didn’t want to dig any deeper to help. I don’t know what to do next.

[@alishamurdock3796]

I believe I saw someone suggest a physician in Florida. I’m willing to make the trip. I’m heartbroken by the lack of help and indifference here in Georgia (medically speaking). It’s just worn me down after 20 years of struggling. I’m thinking it’s time to consider moving to another state that offers better medical knowledge and understanding. I really need help. My condition is getting worse. Thank you in advance.

[@chucklebutt4470]

@@alishamurdock3796 can you look for another family doctor? It's not always nescisary to go to a specialist.

[@bartpanal8828]

I have this condition since I was 16 and now I'm 22 and I feel like it's getting worse as I get older.

[@shadow_song]

i'm sorry to hear that :/ i have hypoKK too, and mine got suddenly very very much more severe around 2 years ago, i was 21 at the time. it was pure hell. like nothing i'd had before, for more than half a year..i couldn't leave my home, i was paralyzed every day. i had to have ambulance called a couple of times, be hospitalized a few times and once gad to be admitted into an inpatient unit. and guess what, we found no reason for it even after extensive testing. that being said... it also passed as suddenly as it appeared! out of nowhere, for no reason once again, my attacks went back to my normal standard. and i could get back to my old normal. so.. i hope it's the same for you! that you are now in your worst, but passing, stage if worsening! good luck!

[@MrZainulhassan]

​@@shadow_songhi

[@shadow_song]

@@MrZainulhassan hi :D

[@beetlejuice4693]

I have the exact same problem

[@RayneRiverstone]

In many cases, I have to freeze it off. I usually can't talk either.

[@PeriodicParalysisAssociation]

Rayne, we are sorry to hear that. We hope you find answers soon.

[@BrianSladek]

I am having this issue now seeking diagnosis, can’t sleep anymore due to it

[@markczarny7088]

Sent my heart racing threw up to weak to get back on bed head bleed took two hrs to get back on bed I'm always throwing up next blood test they had me emergency

[@karynd2368]

I believe someone in my family may be experiencing this. I’ve been scouring the internet trying to find more info. Do you know the incidence of this phenomenon? Has this become more common than previous years? Is this something that would be rare for a very active 38 YO super athletic man to just start having these episodes? I’m really desperate for some answers and hope you can help me. Thank you ❤️🙏🏻

[@markczarny7088]

I fell out of bed bashed my headlay on floor for two hrs managed to pull cover off bed

[@chucklebutt4470]

edit: Dr. Cannon, I'm just wondering if you only have full attacks when you wake up? That is how mine is. Oh wow, his attack looks EXACTLY like mine do! *edit* Oh, no I've never had one this bad before... :( oh my gosh... I was put in the ICU once for a serum K reading of 2.2, extremely alarming. They don't happen too often now that I'm stable on Acetazolamide, more common for me is extreme weakness and PAIN. Anyone else experience pain? I know mine is party tendonitis but following attacks everything gets so, so, sore. The way he used one arm to try to prop up the other arm and can't open anything... 100% the way mine get. Cold is only partially a trigger for me, which is quite good because I live in Alaska! 😅

[@PeriodicParalysisAssociation]

Chucklebutt, thank you for your question and comments. It is very common for people with PP to wake up in an episode. Many with PP also experience pain in and out of episodes.

[@chucklebutt4470]

@@PeriodicParalysisAssociation I've finally found a good team of doctors who take my condition seriously and it's been a while since I've had to aconvince a medical person that I'm not crazy or a drug seeker. The pain aspect some of us have after or between attacks isn't well documented in the current treatment, in my opinion.

[@chucklebutt4470]

@@ChrisPBacon-nn9vy Another thing that my Dr.s think is contributing to my night time attacks might be sleep apnea, mine's not the worst but it's not great lol. I'm switching over to Keveyis pretty soon! Been on Diamox for 7 years! I'm excited

[@m.j.c.183]

@@chucklebutt4470Hi , I have Familial Hyperkalemic Periodic paralysis and once I started taking Keveyis I very seldom get any paralyzing attacks anymore. I've been on it for well over 2 years and I can honestly say that I have maybe had one paralyzing attack and that's it. I've had weakness yes , a few bad ones but paralysis NOPE. Keveyis has been amazing, atleast for me. Good luck I hope it works for you in some way.

[@LeonidesAraquin]

I had this last week and I was really scared. I thought it was high uric but it comes out I have low potassium. You can't walk or even stand. I feel muscle pain.

[@andrewchong7658]

try cucumber juice everyday

[@gameon1505]

I see myself to him 😭😭😭 Ive been experiencing this paralysis since I was 12, And now im 24 and still fighting this disease...Its a genetic dissorder that I inherited to my father, and my uncle also have this, all are men.... My father said he had this disease for 4 years, but why I am experiencing this for 12 years? Maybe because of the mutation? I do not know.... At a mild attack, I take a lot of pottasium meds and at the desperate time the hightest amount that I take is 7 tablets (600mg=1 tablet) just to stop the attack 😢😢

[@chucklebutt4470]

Have you seen a doctor about your paralysis? There are a couple meds that may work to reduce symptoms. Have you had genetic testing?

[@gameon1505]

@@chucklebutt4470 the 1ts one that Ive consulted a doctor was about 10 years ago, the findings was just having low potasium in the blood, I dont remember if they they check my thyroid hormones that time.... The second was just last year and the doctor said that I have gittleman syndrome and she give me potassium sparring dueretics but my body response was still the same.... Ive been waiting the pandemic to end to follow up my medication....

[@chucklebutt4470]

@@gameon1505 Ah, yea that's rough... Do you have a GP or family doctor you see for checkups? You should check out the links on this KZbin channel.

[@gameon1505]

@@chucklebutt4470 we dont have family doctor, I do only walk-in checkups

[@PeriodicParalysisAssociation]

game ON, we are sorry to hear that you are struggling with you symptoms. PP can effect everyone differently, including family members. I have found that I am worse than my sister and have some different triggers than her. We would recommend you try doing a food log and see what foods trigger your symptoms. Also, PP is genetic and does not go away. The symptoms might improve making it less noticeable at times but it never goes completely away. Do you have hypokalemia or hypokalemic periodic paralysis? They are two very different things.

[@QURAN0053]

Please tell me the medicine for stopping this attck😢

[@FolkertVeenstra]

It depends on your diagnosis. The wrong treatment can give an adverse reaction. When undiagnosed and you would get paralyzed, you should always call an emergency ambulance and go to hospital.

[@PeriodicParalysisAssociation]

What @FolkertVeenstra said is very true, having an accurate diagnosis is very important. Treatment usually involves managing potassium levels through various means, and when this is done incorrectly it can be dangerous. Please consult your doctor for the best way to treat or go to the ER if your experiencing acute symptoms (i.e. your paralyzed).

[@markczarny7088]

I have to take lokelma zircon been hospitalised twice yet they still give me spironolactone

[@andrewchong7658]

incase low potassium ,you can standby potassium chloride medicine, and before paralys eat fruit or vegetable high in potassium regulary

[@andrewchong7658]

​@@markczarny7088potassium chloride to be exact medicine

[@malakamadhushanka4536]

මටත් තියෙනවා 😢

[@marvenpadilla9589]

Permission to share