I've been getting these attacks since I was about 35 yrs of age. I'm 70 now. They happen most often in the morning, after eating carbs or exercising in the cold and generally last 20 - 30 minutes. They start in my right leg then go to my left leg and right, then left, arm and hands then sometimes go to my whole body and neck and it becomes difficult to breathe. During these attacks, my muscles have a dull ache. Afterward, my muscles ache and burn horribly. I get dismissed by doctors, they tell me it is imaginary so I just try to handle it myself with diet and management of activity. Thanks for posting this because it makes me feel a little less crazy.
@@juliaalzofon9572 hopefully, he sees a muscle neurologist on the 24th. None of the doctors seem to have a clue and this is fairly close to anything else we have seen. Thank you and best wishes to you too
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.
@@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.
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?
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.
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.
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
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.
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.
@@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.
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.
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!
This is what my brother seems to be experiencing and it is bad, bad, bad. No one seems to know why. He sees a muscle neurologist this month. It would be nice to learn what's going on and the fix if there is one.😢
Im not sure if i have this but im still looking for answers Right now my neurologist "suspects" hypokalemia but i only had one gene identified of unknown certainty and that is the ryr1 gene. In the past 2 days, i lost 5 hours of time needing to lay down only. Im 32 years old and i cant take long walks or lift anything too heavy. Please pray for me because i have two kids who need me.
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.
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
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 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....
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.
I had complete paralysis including my eyelids. I've had 3 of attacks 2011 2015 and 2019 and several abortive attacks and the doctors here have no knowledge of it and dismissed it despite my last attack showing low potassium and put it down as anaphylaxis even though tests showed no signs of one. I was given an epipen too.
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 ❤️🙏🏻
Who do you see to get assessed for this condition? I suspect I may have it as I get periods of paralysis I can't move for hours it does affect my breathing also I cough and gag during it ,it also makes me extremely tired during an attack my body won't let me wake up not sure if excessive fatigue is common with this, the paralysis affects my legs upper body, arms , I can't speak sometimes or my speech is slurred. Originally thought it was seizure related but my seizures don't happen often and the paralysis happens without seizure activity. I was diagnosed with FND functional neurological a few months ago but I don't agree with the diagnosis.
You can use a company that does genetic testing packages for the CACNA1S , KCNJ2 and SCN4A or a more expensive but in depth anaylsis called a full genome sequence. Invitae, Clover Genetics, and Labworks are all certified genetic laboratories that do patient testing. Checking blood potassium at your GP and then take oral potassium chloride tablets or Perscription from provider. Keveyis or acetazolomide are long term treatments to help prevent and reduce attack severity and muscle atrophy.
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.
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).
I've been getting these attacks since I was about 35 yrs of age. I'm 70 now. They happen most often in the morning, after eating carbs or exercising in the cold and generally last 20 - 30 minutes. They start in my right leg then go to my left leg and right, then left, arm and hands then sometimes go to my whole body and neck and it becomes difficult to breathe. During these attacks, my muscles have a dull ache. Afterward, my muscles ache and burn horribly. I get dismissed by doctors, they tell me it is imaginary so I just try to handle it myself with diet and management of activity. Thanks for posting this because it makes me feel a little less crazy.
Good luck to you. I hope someone comes up with a solution. My brother's attacks are coming one right after the other. I'm so worried for y'all.❤
@@jeannebooth563 Thanks, best wishes for your brother. Hopefully you and he will find some way to make his attacks less frequent.
@@juliaalzofon9572 hopefully, he sees a muscle neurologist on the 24th. None of the doctors seem to have a clue and this is fairly close to anything else we have seen. Thank you and best wishes to you too
As someone who has experienced this, it's a bit terrifying!
I am sorry! Do you feel you are well controlled medically? Please contact me at linda.feld@periodicparalysis.org if we can help!
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.
@@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.
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?
@@alishamurdock3796 this isn't medical advice but potassium bicarbonate, mine is branded as Effer K
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.
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.
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
I need to know how to get this keveyis this might be my blessing this condition really takes a toll on my mental health
I had this and i feared for my life. I cried so much.
Thank you for sharing this. All of this is VERY familiar.
I will take this to my doctor.
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.
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.
@@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.
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.
@@alishamurdock3796 can you look for another family doctor? It's not always nescisary to go to a specialist.
Happened to me a couple of nights ago. It was terrifying, luckily my wife was with me and was able to call an ambulance
I have the exact same problem
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.
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!
@@shadow_songhi
@@MrZainulhassan hi :D
This is what my brother seems to be experiencing and it is bad, bad, bad. No one seems to know why. He sees a muscle neurologist this month. It would be nice to learn what's going on and the fix if there is one.😢
In many cases, I have to freeze it off. I usually can't talk either.
Rayne, we are sorry to hear that. We hope you find answers soon.
Im not sure if i have this but im still looking for answers
Right now my neurologist "suspects" hypokalemia but i only had one gene identified of unknown certainty and that is the ryr1 gene. In the past 2 days, i lost 5 hours of time needing to lay down only. Im 32 years old and i cant take long walks or lift anything too heavy. Please pray for me because i have two kids who need me.
I fell out of bed bashed my headlay on floor for two hrs managed to pull cover off bed
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.
try cucumber juice everyday
I am having this issue now seeking diagnosis, can’t sleep anymore due to it
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
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 😢😢
Have you seen a doctor about your paralysis? There are a couple meds that may work to reduce symptoms. Have you had genetic testing?
@@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....
@@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 TH-cam channel.
@@chucklebutt4470 we dont have family doctor, I do only walk-in checkups
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.
I had complete paralysis including my eyelids. I've had 3 of attacks 2011 2015 and 2019 and several abortive attacks and the doctors here have no knowledge of it and dismissed it despite my last attack showing low potassium and put it down as anaphylaxis even though tests showed no signs of one. I was given an epipen too.
Some doctors are in need of being better care protectors. Go to another doctor.
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 ❤️🙏🏻
Who do you see to get assessed for this condition? I suspect I may have it as I get periods of paralysis I can't move for hours it does affect my breathing also I cough and gag during it ,it also makes me extremely tired during an attack my body won't let me wake up not sure if excessive fatigue is common with this, the paralysis affects my legs upper body, arms , I can't speak sometimes or my speech is slurred.
Originally thought it was seizure related but my seizures don't happen often and the paralysis happens without seizure activity.
I was diagnosed with FND functional neurological a few months ago but I don't agree with the diagnosis.
When I have a glucose chewable tablet it seems to stop the paralysis for a few minutes.
You can use a company that does genetic testing packages for the CACNA1S , KCNJ2 and SCN4A or a more expensive but in depth anaylsis called a full genome sequence. Invitae, Clover Genetics, and Labworks are all certified genetic laboratories that do patient testing. Checking blood potassium at your GP and then take oral potassium chloride tablets or Perscription from provider. Keveyis or acetazolomide are long term treatments to help prevent and reduce attack severity and muscle atrophy.
Please tell me the medicine for stopping this attck😢
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.
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).
I have to take lokelma zircon been hospitalised twice yet they still give me spironolactone
incase low potassium ,you can standby potassium chloride medicine, and before paralys eat fruit or vegetable high in potassium regulary
@@markczarny7088potassium chloride to be exact medicine
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