Got diagnosed with a gene disorder(hyperkalemic periodic paralysis

[Michael30]

Just had a question for the guys that know more about metformin then i do. I know met helps push glucous into the muscles. But i wanted to know does it shuttle other nutrients into the muscles like insulin does? The reason i asked is i got hospitalized over Christmas and diagnosed with hyopkalemic periodic paralysis (hypoKPP) long story short my body doesnt regulate potassium correctly and it can(and did make me) paralized for about 10 hours until we got my pottasium levels raised up at the hospital. Anyways one of the triggers is very carb heavy meals. Specifically for me though it has to be stuff like pop, candy, sweets, sugar. Like the junk i ate for christmas dinner(a ton of cookies) when i eat to much sugar all the insulin release shuttles everything including pottasium into the muscles. When the balance inside the muscle isnt in the right ratio with the potassium in my blood stream i can get slight paralysis(feel weak)or become completely paralized from head to toe. Anyways i just wanted to tell everyone not to ignore there health. Ive been ignoring syptoms for 2 years now. It took me to become completely paralized and not being able to get off the floor before i went to the ER. Thnaks for any responses

 

[maldorf]

Just had a question for the guys that know more about metformin then i do. I know met helps push glucous into the muscles. But i wanted to know does it shuttle other nutrients into the muscles like insulin does? The reason i asked is i got hospitalized over Christmas and diagnosed with hyopkalemic periodic paralysis (hypoKPP) long story short my body doesnt regulate potassium correctly and it can(and did make me) paralized for about 10 hours until we got my pottasium levels raised up at the hospital. Anyways one of the triggers is very carb heavy meals. Specifically for me though it has to be stuff like pop, candy, sweets, sugar. Like the junk i ate for christmas dinner(a ton of cookies) when i eat to much sugar all the insulin release shuttles everything including pottasium into the muscles. When the balance inside the muscle isnt in the right ratio with the potassium in my blood stream i can get slight paralysis(feel weak)or become completely paralized from head to toe. Anyways i just wanted to tell everyone not to ignore there health. Ive been ignoring syptoms for 2 years now. It took me to become completely paralized and not being able to get off the floor before i went to the ER. Thnaks for any responses

Wow, I bet that was really scary. This never happened to you before this incident? Weird that it would show up after so many years. Did they explain how that works? Im glad you are ok and it sounds like you know how to avoid this happening again.

 

[BEASTZ6]

Sub'd

 

[icedemon]

In the subject you have "hyperkalemic periodic paralysis" where there is too much potassium. Sounds like you have hypokalemic periodic paralysis which I have to, where there isn't enough potassium. It didn't start affecting me until my mid 40s with not being able to move my arms or mainly my legs. The last episode, it got to my heart and came close to shutting it down. They have to mega dose potassium through a IV at the hospital when I get a attack now, which it has been a while now.

Everybody is different on what triggers a episode, but me and another person I had talked to, it comes on when we work out our legs. The best thing to do is find out what is triggering it and then take mega doses of potassium before or during the trigger. I have several prescriptions of potassium from the doc. I also substitute salt with potassium, like for my morning eggs and such.

If it feels like your muscles are sore from a workout, even though you haven't worked them out, get to a hospital. I usually tell my wife I don't want to go and I'll just drink a ton of potassium in water. Then it gets so sever that a ambulance has to come to get me to the hospital when the attack becomes full blown.

 

[jeroendebleser]

I often have nightmares about not being able to move anymore, must be a terrible ordeal to go through in real life I feel for you man!

If high carb feedings help your condition, then naturally I would go for a high carb diet. (there is absolutely nothing wrong with a carb-laden diet if your overall calories are controlled, quite the contrary imo) What do the doctors say about the Metformin as pertaining to your condition?

 

[blkhrt_jordan]

I often have nightmares about not being able to move anymore, must be a terrible ordeal to go through in real life I feel for you man!

If high carb feedings help your condition, then naturally I would go for a high carb diet. (there is absolutely nothing wrong with a carb-laden diet if your overall calories are controlled, quite the contrary imo) What do the doctors say about the Metformin as pertaining to your condition?

They literally said high carbs triggers them lol

 

[jeroendebleser]

They literally said high carbs triggers them lol

Oh shit I completely misread that ROFL, epic self fail there :naughty:

 

[aphextwin]

That must have scared the hell out of you. It sure would me. I wish you all the best with your health.

 

[Michael30]

Wow, I bet that was really scary. This never happened to you before this incident? Weird that it would show up after so many years. Did they explain how that works? Im glad you are ok and it sounds like you know how to avoid this happening again.

Hi maldorf, yes ive been having symptoms. There always after i wake up. I would wake up and my arms or arm would be weak. Sometimes just alittle. Other times it took all i had to close my hands. Sometimes it would be in my legs. Sometimes i wouldnt have symptoms for a months or 2. Then they might be very mild. It feels similiar to being very sore after i workout. But when it was bad i would ve extremely weak. But i just brushed it off. Which is no ones fault but my own. One good thing is i can correct it for the most part with potassium chloride and no sugar. Carbs seem to be fine. But sugar and sweets is a no go. But unfortunately i went crazy on the 23rd and 24th of dec. And when i tried to get out of bed xmas morning i collapsed to the floor and was stuck there for about 15mins. Luckily i had family there. And 2 of them were able to pick me up and get me to the Emergency room. Ya to be honest those 15mins of the floor was a ete opener. No matter how hard i tried i couldnt get up. My arms worked about 20% to 25% but my legs not at all.

 

[Michael30]

In the subject you have "hyperkalemic periodic paralysis" where there is too much potassium. Sounds like you have hypokalemic periodic paralysis which I have to, where there isn't enough potassium. It didn't start affecting me until my mid 40s with not being able to move my arms or mainly my legs. The last episode, it got to my heart and came close to shutting it down. They have to mega dose potassium through a IV at the hospital when I get a attack now, which it has been a while now.

Everybody is different on what triggers a episode, but me and another person I had talked to, it comes on when we work out our legs. The best thing to do is find out what is triggering it and then take mega doses of potassium before or during the trigger. I have several prescriptions of potassium from the doc. I also substitute salt with potassium, like for my morning eggs and such.

If it feels like your muscles are sore from a workout, even though you haven't worked them out, get to a hospital. I usually tell my wife I don't want to go and I'll just drink a ton of potassium in water. Then it gets so sever that a ambulance has to come to get me to the hospital when the attack becomes full blown.

Sorry i meant to say hypokalemic. There is also hyper. But mine is low potassium. Yes for me working out doesnt seem to trigger an attack. But sweats do. So luckily that can be corrected. This attack was enough to start effecting my breathing. I had to receive oxygen. Ya i kinda freaked out for a minute when i was stuck on the floor. I just want to limit as many attacks as possible because i dont want to become disabled later on down the road. My dr told me each attack can cause some damage to the muscles and eventually i could become permanently disabled. So it is my goal to avoid that at all costs! Thanks for the response

 

[Michael30]

That must have scared the hell out of you. It sure would me. I wish you all the best with your health.

Thanks man. Luckily it seems for my specific case, seeats are a big trigger and ive been eating crappy lately. So im gonna go back to eating good and hopefully that will limit them completely!! Ya i was having a come to jesus meeting while being stuck on the floor. Basically was just praying for atleast the use of my arms back. Because while in the hospital i couldnt even sit up in the bed. I would just keep sliding down in the bed and i couldnt even use my arms to push myself back up. They had to use the sheet under me to keep sitting me uo. I felt pretty much helpless. Luckily my girlfriend was awesome and helped me mentally. To take my mind off of it she kept flashing me when no one was looking. You just kept me laughing which helped. She told me she could do whatever she wanted to me now and there was nothing i could so i better make sure i treat her good! Lol!

 

[Michael30]

In the subject you have "hyperkalemic periodic paralysis" where there is too much potassium. Sounds like you have hypokalemic periodic paralysis which I have to, where there isn't enough potassium. It didn't start affecting me until my mid 40s with not being able to move my arms or mainly my legs. The last episode, it got to my heart and came close to shutting it down. They have to mega dose potassium through a IV at the hospital when I get a attack now, which it has been a while now.

Everybody is different on what triggers a episode, but me and another person I had talked to, it comes on when we work out our legs. The best thing to do is find out what is triggering it and then take mega doses of potassium before or during the trigger. I have several prescriptions of potassium from the doc. I also substitute salt with potassium, like for my morning eggs and such.

If it feels like your muscles are sore from a workout, even though you haven't worked them out, get to a hospital. I usually tell my wife I don't want to go and I'll just drink a ton of potassium in water. Then it gets so sever that a ambulance has to come to get me to the hospital when the attack becomes full blown.

I wanted to ask. Have you ever had am attack come on suddenly during the day? Also do you feel youve lost your strength? I feel like ive lost 40% strentgh compared to 29(im 39 now) i just cant move weight around like i use to. The good thing about this is it explains alot of things for me and why ive felt the way i have over the last several years!

 

[maldorf]

I wanted to ask. Have you ever had am attack come on suddenly during the day? Also do you feel youve lost your strength? I feel like ive lost 40% strentgh compared to 29(im 39 now) i just cant move weight around like i use to. The good thing about this is it explains alot of things for me and why ive felt the way i have over the last several years!

Wondering, I bet it is hereditary? Did you pass it on to your kids I wonder. Can they test for it in a genetic test?

 

[icedemon]

I wanted to ask. Have you ever had am attack come on suddenly during the day? Also do you feel youve lost your strength? I feel like ive lost 40% strentgh compared to 29(im 39 now) i just cant move weight around like i use to. The good thing about this is it explains alot of things for me and why ive felt the way i have over the last several years!

Yea, I've had them during the day. My last one was when I was at my father-in-laws funeral and I was out of state. I can relate to feeling helpless (takes every bit of you, to just roll over in bed) and sliding down on a hospital bed because you can't push yourself up. When I first started getting attacks, it was only after sleeping. Now if it happens, it's any part of the day. I used to think, I just needed to stretch my legs when I was first getting attacks. They just felt sore, like I had a good workout. The attacks got more and more sever with each attack.

I'm not sure about strength loss. The last one that reached my heart freaked me out and I stopped working out 5 years ago. I didn't notice any strength loss back then. I just started working out again this last August. It's harder for me to get a full workout in, but I think that's more mental. I still haven't started working out my legs, because I know that is what triggers it. I was going to start doing legs next month, but I might wait a bit longer.

I also read that you can become disabled down the road to because it damages the muscle each time you have a attack. You can find more info here
https://hkpp.org/patients/hypokpp-FAQ
It talks about a myopathic form of HypoKPP where you can wind up in a wheelchair in your 60s. This form of HypoKPP you don't start feeling until in your 30s. It's hard for me to imagine that I might be stuck to a wheelchair as I get older.

 

[icedemon]

Wondering, I bet it is hereditary? Did you pass it on to your kids I wonder. Can they test for it in a genetic test?

2 out of 3, it's passed down. He has a 50% chance of his kids having it. A lot of people have it, but don't realize it, because it's not sever. They just feel lethargic, no energy, etc. when a attack comes on.

 

[icedemon]

I wanted to ask. Have you ever had am attack come on suddenly during the day? Also do you feel youve lost your strength? I feel like ive lost 40% strentgh compared to 29(im 39 now) i just cant move weight around like i use to. The good thing about this is it explains alot of things for me and why ive felt the way i have over the last several years!

Here are to things I have in my notes when a attack comes on.
Oral potassium chloride 0.2 to 0.4 mmol/kg every 30 minutes till paralysis recovers (1 mmol = 75 mg Kcl)
or
5-10 gm oral potassium chloride is given and repeated in 1 hour, provided renal function is normal
I have a large bag of potassium on the kitchen counter. I just break it up (it becomes solid blocks overnight) and throw a couple of spoonfuls in water.