Anyone else experienced periodic episodes of paralysis? Covid related?

I am heading to the Mayo Clinic Post COVID Recovery department @ Rochester, MInnesota in May for further diagnosis and development of a personalized treatment/therapy plan. Even though my sudden onset episodes of extreme weakness were few, I will be sure to ask about them. I will try to remember (#covidbrainfogisreal) to update here anything I learn. Prayers for answers for all of us!

@kimmarie67
Hello!
I am a 34 year old woman from Norway.
I'll try to keep this as short as possible, and I apologize for any typos:)

I had covid-19 in April 2020 and developed long covid with all kinds of symptoms lasting over a year, then a year and a half... Then I got my first vax (Phifer) in August 2021. Slowly got even more fatigued again, dizzy to the point of fainting. The I got my second in September, a month after the first, but this one was Moderna.
I slowly started to notice something happening in my body. Kind of hard to explain.. I was working but barely getting through each day. I had to ask for 50% sick leave in the end of August.
Then something happened in the middle of October (21). One morning I got to work, got cold sweats, dizziness, low pulse, tingling in my fingers and toes. I sat down, my boss tried to talk to me, but I was totally desoriented and confused and slow. Then suddenly my legs and hands wouldn't work. I lost control over my limbs. My tongue and lips were completely numb, I couldn't even stand up on my own.
I got help from my first customer (I am a hairdresser) for the day who just happened to be a doctor (lucky me!).
She drove me to the doctors center and took an ecg and blood tests. Because of the symptoms she suspected it may have had something to do with hyperkalemia, because I had elevated potassium ever since covid in 2020. (4.8/4.9) and the symptoms I presented.
The paralyses let go slowly and I could walk again within about 45minutes. So they sent me home.. The ecg was at that time normal, a bit irregular, but didn't present any hyperkalemic changes at that time.
The blood test takes a bit of time to get answers for. So at 8pm the same day the A & E called me and asked how I was feeling.. By then I had just been home and laid in the couch drinking water. I also had diarea the same morning btw, that is also a symptom for Hyperkalemia.
The test that morning came back at 8.0 (!!). They drove me to the hospital for checkup, but by then the level was down to 4.8 again. The doctors didn't believe me because the potassium levels can sometimes come back too high due to pseudohyperkalemia.
But since then a lot has happened.
So long story short(er), ever since that time I have had paralyses and spiking potassium levels after extersion forcing me to not exercise, be cold, eat high potassium foods, not get too hungry, and a lot of things to try to minimize the episodes. At worst I had them once or twice a day.. The doctors still haven't found of what is causing this.
My kidneys are normal, all hormones etc etc. I am waiting for a genetic test to determine if this is a rare condition called Hyperkalemic periodic paralysis.
I also get serious changes to my ecg when this is happening.
At one point I thought I am not going to survive this. But I won't give up!
I am certain either covid or the vaccines have triggered this condition in my body. I was perfectly healthy and active before.
I would like to get in tough with others who ate experiencing similar things after covid or vax.
Maybe we can help each other in some way? I have talked to two other individuals that have the same thing, in different strengths and frequency.

I can tell you more about this, just ask me anything! I can also update when or if I get any responses from the doctors.
I have a feeling they have kind of given up on me because they can't figure out what's wrong.

Please get back to me as soon as you can, all of you that may know some more about this phenomenon!

Kind regards, Lene

I have asked about the periodic paralysis and been dismissed. I now also have episodes of violent muscle spasms. I hope to begin bit B and glutathione injections along with hyperbaric oxygen and red light therapy next month.

Thank you for responding!
Have you gotten to measure your potassium while the muscle symptoms are ongoing..? Or else there is no way for them to rule that out. One can get paralysis and the same symptoms for both to little and to much potassium.
How exciting! I have read a lot about glutathione, but sadly my doctors forbid me to take any supplements before we have found the underlying cause of my condition.
Please don't give ut, push the doctors, trust your gut and listen to your body! Only you know it, inside and out.

I'll have to write more another time, it is pass my bedtime here in Norway, and I'm super tired 🙂
But so 'glad' to have found this thread and possible others who may have some of the same problems! So sorry that we have to go through this, but we have to have hope that someday we will get well again!

Sending healing thoughts!
Good luck with everything, and please stay in touch! <3

I have asked about the periodic paralysis and been dismissed. I now also have episodes of violent muscle spasms. I hope to begin bit B and glutathione injections along with hyperbaric oxygen and red light therapy next month.

Hi, I am a friend of lene87 who got interested in this problem complex when another friend got symptoms of periodic paralysis (PP) after Covid.
PP is extremely rare, it is estimated that only around 75 ppl have it in Norway, out of a population of 5 million. It is even rarer to get it as an adult, but not impossible - there are a few studies out there of how Covid can "mess up" the ion channels in your body's membranes.
I've come across a grand total of five new possible "post Covid" PP-cases in the last year, but most likely there are many more out there, either without a diagnosis, or, especially if female, with a psych diagnosis.

Short version:
"Each type of Primary periodic paralysis (PPP) can have its own pattern of symptoms. For example:
HyperKPP:
- Attacks can be shorter and less severe, but can happen more often.
- Your symptoms can come on quickly, sometimes causing you to fall.
- Between episodes, you may have muscle spasms or trouble relaxing your muscles.

HypoKPP:
- You may have attacks every day, or you may have them once a year.
- Attacks can last anywhere from an hour to a day or two.
- Some people have weakness that changes from day to day. Later on, your muscles could become permanently weak and your symptoms could get more severe."
https://www.webmd.com/brain/primary-periodic-paralysis?

I got my first Covid infection in Dec 2020. So much background that I’m too tired to give. Since then I’ve had a few longer lasting episodes of paralysis (2 hours maybe), and some that I could feel coming on, and I rested and just stayed very still and quiet and it would go away in a little while. I had a bad episode at the end of June at an outdoor restaurant that was really humiliating, my friends pretty much had to carry me to the car.
I started taking the experimental drug therapy with maraviroc, and I started getting so much better. The week of August 28 I felt the best I’ve felt since I first got sick in 2020. It felt just like a miracle. Then I tested positive for Covid last Tuesday. At first I felt like a normal person with the flu. Yesterday I woke up and with my long Covid fatigue. Grief and despair and all of that stuff. Then, today (I’m staying at my sister’s and she’s only seen me a few times since I first got sick) I was dragging my self to the kitchen to get something to eat. I felt like I was racing against time because I knew I would crash soon. I finally sat down to eat, and it happened again, I could hardly lift my arms, I had to put my head on the table and my body wouldn’t function. I started sobbing because I couldn’t believe it was happening again. My sister heard me, came outside and had to - everything, I’m too tired to write it down - but she got oat milk for me to sip with a straw. She had to hold the cup. I was completely helpless and paralyzed. It lasted about 2 hours. I’m still very weak, but everything is working.
I got Covid again in 2022, and it was disastrous, I had to start healing all over again even though I was at about 80% of my precovid life. This January I had to stop teaching entirely (I was 1/2 time). Instead of holding steady, I got sicker and sicker and more disabled. Then my miracle treatment, and hope and joy, and now this. I’m terrified of what will happen now. That I may never get well.

Thank you. I have spoken to my Dr about periodic paralysis. He does not believe that is the issue.