This was good to hear. I have hypokalemic period paralysis. I was diagnosed in 2019. It's taken decades to discover what it was. I live in Canada and here the doctors only went so far in the investigations. It wasn't until I talked to a doctor I got talking with, in the San Francisco bay area, by fluke, she knew exactly what I had just by the description I gave. When I could no longer work my job in the lab at the hospital of all places and after running into dead ends with tests, I began to investigate myself. I was noting the events leading up to a collapse, paying attention to diet, activity, and environment. I noticed consistently that I would have episodes leading up to my menstrual cycle, which brought on episodes. I knew if I had a Pepsi or coffee it would throw me down very quickly. Coke would do the same, but not as quickly as the others. It took years to realize that anything with sugar in it was depleting my energy, throwing me into a collapse. I noticed my left arm would twitch almost like a prewarning that I was in the zone for a collapse. Food... cold temperatures... exercise or anything that blew out my energy... prior to my period and even during... even overstimulation of my sensories, which could drain me like loud hard music. In the cold, I will shake intensely, not just shiver, and can be triggered into a full collapse. When I collapse if begins with either my left arm jerking as a first signal or my gut feel nauseous. If it hits my gut I can collapse in a second. If my arm is jerking I know I have time to get myself to lay down before I fully blow out into an episode. I lay down a lot. In the mid-1990's I was hospitalized when I went into one of these episodes. The doctors couldn't figure it out and only concluded it was psychiatric. They were reaching deep into the bucket for that because there was absolutely noting traumatic that happened in my life to trigger a psychological backlash that could drop me into paralysis. I knew it was at a cellular level, but doctors were no longer interested in searching. While I was in a paralyzed state for most of the time I was in the hospital was when my breathing was so shallow it was stopping. My diaphragm was not lifting, I was paralyzed and could not grab the ringer to call for a nurse. I couldn't take a breath. Then when it went to the point before I would passout it released and I was able to get a breath. It was very scary being paralyzed with this happening. The rest in the hospital helped to revive me, but there was nothing they did that helped in my recovery. Never once was my potassium mentioned. The test that finally concluded I had HKPP was an extensive nerve conduction test. The regular nerve test only caused my left arm to twitch out, and even trigger my left leg. But by this time I had the information of it possibly being HKPP, so this doctor finally referred me to a neuromuscular doctor to investigate HKPP. It was conclusive. The genetic testing came back negative. Although, when the blood was drawn I wonder if it was done improperly because the lab gal left the tourniquet on the whole time, which can disrupt the blood cells. I'm not familiar with the protocol of that test so I don't know. I do know that many years before when they were checking for diabetes, I took the glucose test, drinking that sugary orange drink. Within minutes I was going into a full-blown episode. They stopped that testing and took me to the emergency. This test would have shown something, but at that time it still could have been missed if they were not away of this type of disease. It's been a long road, as some know with this HKPP journey. I cannot walk or stand for too long, cannot run or dance or it will trigger a collapse, I have to keep warm because the cold triggers me, I cannot eat carbohydrates, anything with sugar, although honey I can handle, can't have salt without it triggering severe vertigo, I do have Hashimoto's disease, I lay down a lot to restore, I cannot do too much socializing because the stimulation drains me out, even laughing too much drains me out. I live in a quiet way, with a strict diet of no gluten, no sugar, no salt, no dairy... I do eat raw foods as much as I can because this raw food gives me pure super nutrients and enzymes that my cells desperately need to. The difference between raw food diet and cook food diet is like day and night. I still eat cooked foods, but raw foods boost my energy much higher so I can do more. I live in a limited way, but I do know raw foods are vital to have quality of life. I take potassium chloride and find it helps tremendously. If I feel an episode coming on I wil take a potassium chloride. I find it helps to knock it back or stop an episode from coming on. I have been in emerg many times from this, but when they've done the blood work, the potassium does not show up in any extraordinary way. I do know from the time I collapse to the time they do a blood draw can be hours, so it may not show up because it's been drawn too late. I still wonder if the genetic test was not done properly or there was a wrong test. Not sure. The extensive nerve conduction test showed conclusively though. The neuromuscular doctor told me fatigue is not associated with this disease, which I find odd. Since I feel very fatigued before collapses and very fatigued and sluggish after collapses. He is a doctor out of Calgary, Alberta, so I wonder if he's just not familiar enough with HKPP patients. Diet is so so important. I tried the other medications for HKPP, but they all did not make me feel good, and gave up on them. I once had a steroid treatment by IV over five days and it shot me right up giving me power for months, but after five months That was before I wa diagnosed, and still searching for answers. After the steroid wore off I went into a crash that made me even worse than before. I'm just relieved that I have a diagnosis and know what I'm dealing with. Then I got a name for what was happening to me by the doctor from San Francisco I was quite excited. In the last couple of years, I began dealing with severe vertigo that would last for hours of torment. I realized salt was the trigger, so I removed that from my diet. I have also experienced more leg cramps, so I've taken liquid magnesium to try and stop the cramping quickly. It usually hit me at night. So much to balance out. What a journey it has been!
Your story is absolutely fascinating and phenomenal Linda! You're truly an inspiration.
Glad you enjoyed her story. Thank you for your wonderful comment.
This was good to hear. I have hypokalemic period paralysis. I was diagnosed in 2019. It's taken decades to discover what it was. I live in Canada and here the doctors only went so far in the investigations. It wasn't until I talked to a doctor I got talking with, in the San Francisco bay area, by fluke, she knew exactly what I had just by the description I gave. When I could no longer work my job in the lab at the hospital of all places and after running into dead ends with tests, I began to investigate myself. I was noting the events leading up to a collapse, paying attention to diet, activity, and environment. I noticed consistently that I would have episodes leading up to my menstrual cycle, which brought on episodes. I knew if I had a Pepsi or coffee it would throw me down very quickly. Coke would do the same, but not as quickly as the others. It took years to realize that anything with sugar in it was depleting my energy, throwing me into a collapse. I noticed my left arm would twitch almost like a prewarning that I was in the zone for a collapse. Food... cold temperatures... exercise or anything that blew out my energy... prior to my period and even during... even overstimulation of my sensories, which could drain me like loud hard music. In the cold, I will shake intensely, not just shiver, and can be triggered into a full collapse. When I collapse if begins with either my left arm jerking as a first signal or my gut feel nauseous. If it hits my gut I can collapse in a second. If my arm is jerking I know I have time to get myself to lay down before I fully blow out into an episode. I lay down a lot. In the mid-1990's I was hospitalized when I went into one of these episodes. The doctors couldn't figure it out and only concluded it was psychiatric. They were reaching deep into the bucket for that because there was absolutely noting traumatic that happened in my life to trigger a psychological backlash that could drop me into paralysis. I knew it was at a cellular level, but doctors were no longer interested in searching. While I was in a paralyzed state for most of the time I was in the hospital was when my breathing was so shallow it was stopping. My diaphragm was not lifting, I was paralyzed and could not grab the ringer to call for a nurse. I couldn't take a breath. Then when it went to the point before I would passout it released and I was able to get a breath. It was very scary being paralyzed with this happening. The rest in the hospital helped to revive me, but there was nothing they did that helped in my recovery. Never once was my potassium mentioned. The test that finally concluded I had HKPP was an extensive nerve conduction test. The regular nerve test only caused my left arm to twitch out, and even trigger my left leg. But by this time I had the information of it possibly being HKPP, so this doctor finally referred me to a neuromuscular doctor to investigate HKPP. It was conclusive. The genetic testing came back negative. Although, when the blood was drawn I wonder if it was done improperly because the lab gal left the tourniquet on the whole time, which can disrupt the blood cells. I'm not familiar with the protocol of that test so I don't know. I do know that many years before when they were checking for diabetes, I took the glucose test, drinking that sugary orange drink. Within minutes I was going into a full-blown episode. They stopped that testing and took me to the emergency. This test would have shown something, but at that time it still could have been missed if they were not away of this type of disease. It's been a long road, as some know with this HKPP journey. I cannot walk or stand for too long, cannot run or dance or it will trigger a collapse, I have to keep warm because the cold triggers me, I cannot eat carbohydrates, anything with sugar, although honey I can handle, can't have salt without it triggering severe vertigo, I do have Hashimoto's disease, I lay down a lot to restore, I cannot do too much socializing because the stimulation drains me out, even laughing too much drains me out. I live in a quiet way, with a strict diet of no gluten, no sugar, no salt, no dairy... I do eat raw foods as much as I can because this raw food gives me pure super nutrients and enzymes that my cells desperately need to. The difference between raw food diet and cook food diet is like day and night. I still eat cooked foods, but raw foods boost my energy much higher so I can do more. I live in a limited way, but I do know raw foods are vital to have quality of life. I take potassium chloride and find it helps tremendously. If I feel an episode coming on I wil take a potassium chloride. I find it helps to knock it back or stop an episode from coming on. I have been in emerg many times from this, but when they've done the blood work, the potassium does not show up in any extraordinary way. I do know from the time I collapse to the time they do a blood draw can be hours, so it may not show up because it's been drawn too late. I still wonder if the genetic test was not done properly or there was a wrong test. Not sure. The extensive nerve conduction test showed conclusively though. The neuromuscular doctor told me fatigue is not associated with this disease, which I find odd. Since I feel very fatigued before collapses and very fatigued and sluggish after collapses. He is a doctor out of Calgary, Alberta, so I wonder if he's just not familiar enough with HKPP patients. Diet is so so important. I tried the other medications for HKPP, but they all did not make me feel good, and gave up on them. I once had a steroid treatment by IV over five days and it shot me right up giving me power for months, but after five months That was before I wa diagnosed, and still searching for answers. After the steroid wore off I went into a crash that made me even worse than before. I'm just relieved that I have a diagnosis and know what I'm dealing with. Then I got a name for what was happening to me by the doctor from San Francisco I was quite excited. In the last couple of years, I began dealing with severe vertigo that would last for hours of torment. I realized salt was the trigger, so I removed that from my diet. I have also experienced more leg cramps, so I've taken liquid magnesium to try and stop the cramping quickly. It usually hit me at night. So much to balance out. What a journey it has been!
Thank you for sharing your story with us. We hope you find the other episodes on our channel helpful, relatable and educational.
It was nice to hear the pp experience of madam. She has been a inspiration for pp patients.
Thank you for your kind comment.
I am also suffering from HYPO-KPP ..could you please
How to do proper medication