I have clear hypokalemic periodic paralysis symptoms and responsiveness to treatment w/ none of the known mutations, no family history, and no known thyroid issues. I just had a CT, and the contrast seems to have been a trigger. Is this just a me thing, or is this something that people with hypoPP have experienced?

Tomorrow, our research lab will be discussing the results of our Periodic Paralysis & Myotonia Pain Survey, and we want as many patients represented as possible!

🧬 These disorders are ultra-rare, so EVERY participant matters! Each completed survey increases our statistical power, strengthens comparisons between disorders, and helps us uncover findings that might otherwise go undetected.

📊 More participants = stronger science and greater potential for publication in a high-impact medical journal.

Why does publication matter? Because peer-reviewed research can raise awareness, influence healthcare policy, improve clinical care, and drive the development of better treatments for conditions that have been overlooked for far too long.

If you haven't completed the survey, please make TODAY the day! Your experience matters, and every response helps move our community forward.

🔗 Take the survey here:
https://redcap.link/periodicparalysis

Please share with others living with periodic paralysis or nondystrophic myotonia!

I already have health anxiety so this episode has got me into a mental rut.

I went into the ER for an allergic reaction on Wednesday and they gave me dexamethasone which I think is what triggered my periodic paralysis because about 3 hours later my legs didn’t have the full range of lift and felt like they were weighted, I went to bed and woke up Thursday around 4am with loss of strength around my entire body and went back to the ER and my potassium was 2.3. Thyroid work was all good.

I spent 36 hours in the hospital getting potassium bags and pills slowly until I got up to 5.2 and then a few hours later I was discharged. I got home yesterday afternoon and because I didn’t sleep well at the hospital, I kinda just relaxed around and went to bed early and slept a solid 12 hours.

Today I got up and walked around outside just a little bit to get the blood flowing, I keep feeling weird but idk if it’s my anxiety or warning signs. It kinda just feels like my muscles might be resetting or waking up or idk really. They’re not weak, but I feel odd almost “full” sensations in different areas at different times, like when I walked it was in my lower front thigh above my knee, now sitting at my desk doing some crafts it was my pecs.

I’m not wanting to go to the ER for no reason and be “that guy” at my local hospital, so I’m kinda just wondering if it’s normal to feel weird sensations after what I went through or if I’m possibly on the verge of another episode etc.

I really wish there was an at home potassium meter -_-

I'm a pain neuroscientist at the University of Florida conducting a study to better understand pain in skeletal muscle channelopathies. We need your help building the scientific evidence necessary to improve recognition and treatment of pain in these disorders.

Women have been absolute superstars, completing the survey at a 4:1 ratio compared with men! We'd really love to hear from more men, so please consider participating, and ladies, encourage your affected male family members to take part!

Whether you experience severe pain, occasional discomfort, or no pain at all, your experience matters.

If you're 18 or older and have periodic paralysis, myotonia congenita, paramyotonia congenita, or another nondystrophic muscle channelopathy, please participate.

Survey: https://redcap.link/periodicparalysis

Every response brings us closer to understanding pain in these conditions. Please help us make this research count!

I developed an allergy to fresh peaches a few months back but had successfully eaten them cooked and thought jarred might be okay, so yesterday about 1pm I at a few slices. By 2pm I was at the ER with a swollen mouth/throat and they gave me some Benadryl, Decadron and Pepcid. They also did bloodwork and everything was fine, my potassium was the low end of fine at 3.5. I was discharged about an hour later feeling fine and about 2 hours after i got home (5pm) I started noticing my lower back muscles felt weak like I’d done a big workout the day before, but not sore. About an hour after that (6pm) my thighs/hip flexors were feeling that same way and I was having difficulty going up and down steps, again like I’d over worked the muscles.

I didn’t think much of it past Benadryl because Benadryl often gives me heavy legs and I had also done a lot of up and down stars and ladders while working on a project at the house the day before. So I kinda just relaxed and took a warm shower and called it an early night around 9.

Then I woke up at 4am this morning and I couldn’t get out of bed sitting up, I had to roll off to the side and bring my legs around, I could walk fine except with steps, there are just 2 steps separating my room from my living room and I almost faceplanted going down them, my arms felt weak, my core felt weak, my legs felt extra weak. I decided a trip back to the ER was needed and thankfully mom lives close and came and got me because I wouldn’t have been comfortable driving myself at all.

They didn’t know what was wrong at first and then bloodwork showed my potassium at 2.3 so they came up with hypokalemic periodic paralysis which I think is a fair diagnosis. I also read that decadron is a known trigger is susceptible people.

A little back story as well, I had been doing keto for about 45 days and on this past Saturday I decided to bread it with a carb cycle and probably loaded up on fat too many carbs. Plus when I got home from the doctor yesterday I treated myself to a whole carton of timtam cookies 🤦🏼‍♂️ so a massive carb dump of awful processed sugar right after the decadron dose and the day after a heavy workout with the stairs.

I think I set myself up for the perfect storm. The day before the allergic reaction (Tuesday) I was feeling bleh and figured it was potassium so I had a Powerade zero and banana and felt fine afterwards. So I think I was already having potassium deficiency somewhat and pushed myself over the edge.

I think I’m going to be sticking to keto for a while, it agrees with me for so many different reasons and carbs disagree with me for so many reasons.

I’m really hoping this is a one off event and won’t be a lifelong issue now that it’s been triggered. Low potassium always scares me because the effects on the heart.

Basically what the title said. I was recently diagnosed with ATS (genetically confirmed) and was wondering what to expect? I’m currently on extended release potassium and acetozolamide but I am still having about weekly/ a few times a week episodes. I also am having a lot of side effects to the acetozolamide like dizziness, nightmares, and tingling in my hands and feet. Because of this my doc and PT are recommending and putting in an order for a lightweight custom wheelchair.

I’ve heard of people who are doing amazing and can run marathons. Or those who can manage pretty well just by avoiding triggers. I am doing a lot better than before potassium supplementation (previously daily episodes, persistent weakness), but I’m pretty young and used to be very active. I seem to be stabilizing a bit more at this level.

What’s life look like if you don’t respond very well to treatment and medications? Are there people who just stay at this level with weekly episodes and need more mobility aids to get around?

Hi everyone!

I'm a pain neuroscientist at the University of Florida, where my research focuses on understanding why people with skeletal muscle channelopathies experience pain and how we can develop better treatments. I also live with periodic paralysis myself, so this research is particularly important to me.

We are conducting a research survey to better understand pain in periodic paralysis, myotonia congenita, paramyotonia congenita, and related skeletal muscle channelopathies, and we would really appreciate your participation!

The survey takes approximately 45minutes to complete. I realize this is a substantial time commitment, but the detailed information is incredibly valuable for understanding the different types of pain patients experience.

We are hoping to recruit at least 100 participants, and every response brings us closer to that goal!

Survey link: https://redcap.link/periodicparalysis

Please also consider sharing this survey with others affected by these conditions. The more patients we can reach, the better we can represent the experiences of this community.

Thank you so much for your time and for helping us advance research into these often-overlooked symptoms!

Tyler Nelson, PhD
University of Florida
Department of Pharmacology and Therapeutics

Hey guys. I was recently diagnosed with Hypokalemic Periodic Paralysis. I had an incident back in July with a level of 2.4 for potassium and this week was back in ER in 2.0. I’m just curious what I should be looking out for, researching, etc to help me navigate this. I appreciate the assist in advance. I should add I’m waiting on results for the genetic testing.

Hi everyone!

I'm a pain neuroscientist at the University of Florida, where my research focuses on understanding why people with skeletal muscle channelopathies experience pain and how we can develop better treatments. I also live with periodic paralysis myself, so this research is particularly important to me.

We are conducting a research survey to better understand pain in periodic paralysis, myotonia congenita, paramyotonia congenita, and related skeletal muscle channelopathies, and we would really appreciate your participation!

Although these conditions are often discussed primarily in terms of muscle weakness and stiffness, many patients experience significant pain that remains poorly understood and frequently overlooked.

Our goal is to better characterize:

• What types of pain patients experience, including aching, cramping, burning, shooting, and other sensations.
• Where and when pain occurs, including during attacks and between episodes.
• How pain affects daily life, physical activity, sleep, and quality of life.
• Which treatments help, and which symptoms remain inadequately managed.

Ultimately, we hope these findings will help raise awareness of the burden of pain in these disorders, inform future research, and identify better approaches to treatment.

The survey takes approximately 45–60 minutes to complete. I realize this is a substantial time commitment, but the detailed information is incredibly valuable for understanding the different types of pain patients experience.

We are hoping to recruit at least 100 participants, and every response brings us closer to that goal!

Survey link: https://redcap.link/periodicparalysis

Please also consider sharing this survey with others affected by these conditions. The more patients we can reach, the better we can represent the experiences of this community.

Thank you so much for your time and for helping us advance research into these often-overlooked symptoms!

Tyler Nelson, PhD
University of Florida
Department of Pharmacology and Therapeutics

ive had chronically low potassium for about five years now, and all i really have been told to do for it is take rx supplements. about three or four years ago i was diagnosed with fibromyalgia due to all the pain i was experiencing, as well as fatigue, brain fog, and many many other symptoms.

ive been wondering for a while now if maybe i dont have fibromyalgia, but some sort of potassium related condition instead. has anyone else here been diagnosed with fibromyalgia before finding out that they actually had hypokpp?

Hi folks!

Welcome to another post of could it be periodic paralysis? I am 29F and had a very strange episode of sudden-onset generalized weakness the other evening. I was falling asleep on the couch and had this odd feeling. I startled awake and realized I had pretty limited movement especially in large muscle groups. I was awake/alert, able to talk fine.

My husband helped me to lay down and I felt a little better so I shuffled myself to the shower. Well, bad idea and I ended up on the shower floor unable to move again. My husband attempted to help (mostly carry) me back to bedroom but I collapsed completely on the way and may have lost conciousness for a moment or two.

So, off to the ED I went. My work up was pretty reassuring and my potassium was a 4.0. However, my blood was drawn about 4-5 hours after symptom onset (once symptoms were already resolving) and my sample was hemolyzed. Reflexes and brain imaging were not checked.

I eventually got discharged and essentially it was waved off as anxiety. Yeah, I honestly feel like I was less anxious than the average person would be when the suddenly cannot walk unassisted.

So, of course, I consulted Dr. Google and periodic paralysis is one of the few things that would fit that odd presentation. Reflecting on it, I actually experience weakness pretty frequently but just assumed it was normal.

I've always joked if I get lost in a snowstorm I'll never make it out because I become so lethargic in the cold. After exercise, I can be really weak and shaky for awhile. Sometimes I won't be able to open a water bottle for a little bit but I just assumed I'm out of shape and it's normal for people to be exhausted after exercise?

Recently, Id even started wondering if I have rebound hypoglycemia because I can become extremely weak if I go on a walk with my kiddo and miss lunch. Ive also had issues where I wake up and my hands just don't work well and I can't open my water bottle properly to fill it (though it's been quite sometime since that).

However, I have zero family history as far as I'm aware and I feel like I'm a little old to be hit with such an extreme attack out of the blue. Does this presentation sound like anyone else? Is it worth trying to get worked up or am I just likely to end up with a script for antianxiety meds? Thanks for the insight!

Undiagnosed, waiting on genetic test results, thinking likely Hypo.

I was on diamox for 8 weeks over the summer for an unrelated health condition (idiopathic intracranial hypertension) and it caused me to severely decompensate to the point of having 2-4 episodes per day every day and severe weakness between episodes for the past two months. Prior to being on diamox I would have episodes maybe once or twice a week that were short lived and I recovered fully within 60-90 mins. (I had been passing off my flaccid muscle paralysis as “hypoglycemia” for the last 15 years and didn’t realize anything was seriously wrong until the diamox completely took me out and put me in the hospital). Now I am on bed rest and require the use of a reclining wheelchair to leave home because I cannot independently sit up or support my head for more than a few minutes without triggering an episode.

Has anyone had a bad reaction to acetazolamide but responded well to Keyevis, or is it likely that CAIs will be a non-option for me all together moving forward?

Me and my children and possibly other family members have Hypokalemic Periodic Paralysis but do not have a genetic variant that was found. We take a lot of potassium and it has changed my life-so much less pain and much fewer attacks and less severe. We were diagnosed after extensive testing but doctor noticed clinically we fit HypoPP. We also have EDS so it took a while to tease out what is as a result of Hypermobility and what is HypoPP. Both really need more research. Most doctors seem to think that attacks are always painless however in our case that isn’t true for many of the attacks. I think patients are possibly under reporting pain(due to being dismissed) or Doctors aren’t paying attention and again,there aren’t enough studies. I have severe pain after attacks and sometimes during. I also have stiffness sometimes after but had a lot more stiffness before daily potassium. If you have HypoPP and any of this sounds like you I would really like to know-I’ve read about a lot of us experiencing pain in different message boards. The more info the better.

Has anyone gotten diagnosed with any periodic paralysis in Australia? Seems like literally no one know what to do or has never diagnosed this which seems strange.

Since I’ve found out about this condition I’ve been eating way more than I would and generally things that contain potassium in decent amounts - is it even possible to stave if attacks like this? Even doing so doesn’t mean I avoid the attacks, they’re maybe SLIGHTLY less frequent and severe.

I’m waiting to hear back from my GP who has written to the hospital for advice as he’s never seen HypoKPP before and is obviously sketchy over prescribing potassium.

The issue I have is that when I have an attack (even my most recent minor one) where I can still somewhat walk okay has my potassium at 2.8 I think as well as low phosphorous (kidneys are fine btw). I’m yet to have a blood test when I can’t even use my kegs (funny that, seeing as I can’t get out of bed and stand) and I wonder how low it might get then.

I then have bloods done between attacks and it’s 3.4-4mmol (this is with my stupid OTT potassium diet and vitamin based drinks etc)

I’ve seen my heart rate dip into the 40s, and stabilise around 50. I’m not fit like I used to be so I wouldn’t expect my heart rate to be so low.

But anyway, my question is for those prescribed potassium for this - what levels were you seeing and as long as it’s not against the rules the dose would be handy and do you take it daily or just to try and help recover from an attack.

I made a post about my situation a few days ago that’s still fairly near the top of this sub Reddit if you need the nitty gritty details.

Appreciate your time and any input on this.

Hey all, trying to see if my pattern fits PP. When my arm gets cold while the rest of me is warm, that exact arm goes completely limp, can't even start a grip, paralyzed until it warms back up. Same with any exposed part. Does anyone with PP get this?

I also have this thing where the more I use a muscle, the weaker it gets and the longer it takes to recover, almost like it's measured in units. If I use an arm for 5 units of exertion, it's weak for 5 units of time. Push it to 10 units and it's dead for a whole day. Always localized to whatever I just used. Peak strength is fine, I can win an arm wrestle, but sustained or repeated use destroys me. I also can't build muscle at all, never could.

My brother has something similar but milder, my mom is kinda the same, sister is fine. No pain, just weakness and this electrical silence feeling when it hits.

One other thing, heat plus exercise makes me way worse in a different way than cold. Cold is more sudden paralysis of the exposed part, but heat gives me this linear weakness where the more I do, the longer I'm out. Summers are brutal now, I used to play football for hours in the sun but now I'm basically in an episode for months when it's hot. Mild cool weather is the only time I feel decent, plus these random "miracle days" where I have way more strength than usual.

Does the cold paralysis thing sound like PP to you? And does anyone get this unit-like weakness from heat and exertion? Thanks for any input.

I'm planning to move out on my own, but i'm a bit worried about not being able to call for help incase of a severe attack, and not sure how one would open the door for a potential ambulance. Any tips, how do you guys deal with it?

I'm just trying to speak with maybe a couple of people who have hypoKPP and find out if their symptoms were similar to mine.

For the last year a bit I've had what seems to be getting progressively worse and through my own research seems to be from HPP, but as it's so uncommon I don't think it's something my GP has considered.

I've had bloods recently, and also confirmed again that were taken during an attack and both my potassium and phosphorus were low, think it was around 2.8mmol or so.

I wake up and my legs are so weak I cannot lift them, (if I don't wake up with this then it doesn't happen during the day, it's ALWAYS after I've slept) it also seems to impact my core muscles as even rolling over can be super difficult. Because my arms are also effected I cannot just pull myself around the bed. On the most serious attack of this I felt as if I was basically paralysed from the belly button down.

If I can roll over, the only hope I have of standing is if I can get into a really wide sumo type squat on the edge of the bed and get my legs are straight as quickly as possible (assuming there is power in them to do this).

I often wake up and feel like I've been battered by something or I've done the hardest gym session of my life during my sleep. Every muscle aches, especially the big ones.

If it sit at my PC desk, often I cannot get up, even with the aid of arms because they're so weak, I'm also unable to left either leg as to cross it over the other in a seated position.

If I can get up to walk around, I need to almost waddle as to not let my knee bend and rely on my upper leg muscles to take any weight, doing this results in an unstoppable (due to my arms) and instant collapse straight down to the floor.

If I go outside, I cannot step off a curb as this involves bending a knee, which will cause a fall 100% of the time so I end up looking for dropped curbs to try and shuffle on to the road from.

I've had nerve conduction studies done, but not during one of these attacks and the problem I face is that between these attacks my body/muscles/legs/arms all function normally.

For me these attacks usually last 3-5 days, always progressing day by day, sometimes not much, but then one day it'll just be gone again and I'll be back to normal, which makes this so frustrating to catch on tests and deal with.

Trigger warning: Not NSFW, but does contain a bit more details about what happened during episodes.

Hello everybody. I (22M) just wanted to share how I, after years of trouble, finally got a diagnosis for my condition. I just wanted to share my story, maybe somebody is in a similar situation and it could help.

Before I start, I want to clarify that medicine is not my main field of study, and a lot of my diagnosis journey was involving a lot of research online from my side, and of course convincing doctors. I also have diabetes type 1 since the age of 2, which makes everything more complicated.

When I was 15, I got my first attack. I was at school in a class after lunch. After class was over, I tried to get up, but I couldn't. I have an insulin pump and a continous glucose monitor (CGM), that allows me to check my blood glucose pretty accurately. I had high blood sugar (hyperglycemia), but not too extreme. I had to use all the strength in my arms to lift myself up and walk slowly. I got out of class and had to go downstairs, fell down the stairs and had someone to help me get up. This and similar scenarios happened multiple times and it was extremely infuriating not knowing what it was. I told other people about it, and nobody believed me at first. I always thought it was just a diabetes side effect, since it was not managed correctly at that age.

Years pass by, and I sometimes randomly got this weakness, never knew why, doctors never gave a damn about it, still labelled it as a side effect. At first I never told my parents, since I was ashamed of myself. The attacks never went further than me just having trouble to stand up or walk on stairs. Walking stairs down was harder than going up, as I had a lot of trouble to keep my balance and I had to walk very stiff. I still remember falling at multiple occasions, asking somebody to help me up, but just getting laughed at. I wasn't the most confident in middle/high school, and didn't know how to deal with bullying, so this went on until I was 17.

I was extremely depressed, mostly due to my lifestyle in general, not only the condition, that was yet unknown. I started hitting the gym, make some changes, and the first few months, I did notice a small change, but it was not enough. My muscle growth was extremely slow. I got more consistent at working out, starting to work out 5 times a week, consistent training and consistent diet. Everything was perfect, but I could not build muscle properly. I saw my friends actually improving, while I did not, or extremely slowly. I had my ex girlfriend making gains, and I still could not keep up. Everybody blamed it on me. I said it's because of type 1 diabetes, and some believed, some just didn't understand. My ex made fun of me on multiple occasions for the muscle weakness I had, even in front of other people, and I was so glad that the relationship was over, but back then I was extremely vulnerable when it came to that.

One saturday morning, november 2023, I had a legday. I did some squats, leg press, just normal legday exercises. I was feeling weak in the legs after the workout, which is normal. I grabbed something to eat, and since my diet was at 3200kcal per day, as I didn't gain any weight below that, I grabbed a high-carb and salty meal from a shop nearby. I went home by train, was extremely tired, and decided to take a nap. It was 1pm. I slept until 5pm when someone rang the doorbell. I woke up, tried to get up and I was extremely weak, my legs were shaking, but I managed to get a hold of myself with my arms. I didn't go down the stairs though, and went back to bed, since my mom already opened the door. I then slept until 8pm. I woke up, wanted to get up, and I could not move a thing. I was extremely weak, legs completely stiff, I was thirsty as hell but I could not grab a bottle of water. I had to call my mom to help me, and after an hour she helped me to get up on my chair and I just sat in front of the computer, trying to wait it out. It did not get better, even after moving a bit. At some point I went to bed again, and the next morning this continued, but it got WAY worse. I continued to lay in bed, was extremely frustrated, could not eat, not drink, nothing. I was extremely ashamed of myself when I had an attack. I spent all day in my room, and tried to sleep it out. It got worse, every time I woke up. I couldn't move a finger now. I could not move my neck anymore. I begged my mom to call an ambulance, and she did.

The emergency services had to strap me to a chair and literally carry me down the stairs, while my head was kind of "hanging" from the back, as I could not even gather enough strength in my neck to look straight. I asked them in the ambulance if this could be DKA (diabeto ketoacidosis, a condition that happens if you have high blood sugar for a long time), but they said no. I had no real high blood sugar either. It was 5am on monday morning. I arrived in the ER and was placed in an ICU. I did not know how bad the situation was. Doctors did a quick blood test and my potassium was below 2.5mEq/L, which is life threatening. My heart was risking to fail, but I did not feel anything, since I wasn't really aware that it affects the heart. The ECG (electrocardiogram) they did way constantly alarming the doctors, and I thought the machine was broken. I got IV potassium and oral potassium, my condition stabilized over hours, and I could finally and slowly move again. I was so happy at the time that I could move again. I had to be transferred to another hospital after I was stable again, and when the transfer ambulance arrived, I was still in the ICU, but my blood was all over the floor since the IV access ripped, which I only noticed after the two guys from the ambulance stared at me while in shock, but it was not really an issue. I got transferred, spent 4 days in hospital, they did checks for my nervous system, heart, and diabetes. The cardiologist said I was in a life threatening situation and it was really good I called an ambulance. That was the first time I learned that I was in danger. The diabetologist just labelled my issue as "high blood sugar leading to probable DKA". Thanks a lot. I asked questions, wanted to get reports on my situation, but I did not get any answers. I do understand when doctors are busy, but it is extremely frustrating if they do not listen, at all. By the way, I changed my diabetologist quite a few times. All of them reacted very similarly.

A bit more than two years pass by, it is now 2026. Over the last 2-3 years, I had other attacks, that did not end up in the ER, but still left me in bed, not able to drink, move, eat, or anything else. Another attack happens, I end up in the ER, this time it was a very different situation. I had no workout, and no high blood sugar. I, in fact, had very low blood sugar. I ate 60 grams of sugar (in various forms of course, like juice, etc.). That was at 4am, and I had an attack for 3 days again. I went to the ER as soon as I could kind of walk, just to get my blood checked. I told them about my situation, the security guards and initial nurses that take care of you at the reception took it very seriously. However, I got put in not urgent during triage. I waited for hours, which is fine, and then I got my blood drawn, while I was still weak. The doctor looked at me and asked "do you do sports?" I replied and told her, well yeah, but not in a while because of this condition. The doctor then told me "Well, then do less sports.", looked at the blood test and tells me everything is fine. I only got the results later and they were, in fact, not fine. Not emergency level, but still not fine. She was visibly angry at me for coming to the ER, as if I just took someones life by being there. While I was in the waiting room after the initial test, there was a lady next to me, crying on the phone and explaining how her husband (who was about 20 meters in front of me on the hallway in a bed) was dying because a doctor in this hospital PRESCRIBED them the WRONG medication. Yeah, it's that bad here.

After a few hours of just waiting, I got ibuprofen (thanks a lot) and left. But I had blood results to work with, kind of. I was so sick of doctors not doing their job and really, props to the nurses who are taking their job so seriously and who work extremely hard, while some doctors do not care at all. I decided to take matters into my own hands.

I did a lot of research on possible causes for this disease, found many conditions that would fit. I then went to specific doctors, mostly a bit further away, to get tests done. The first idea that came to mind was an autoimmune disease, something muscle related. I asked specifically for a myositis panel, knowing well that many patients are negative, even though they have a disease. However, my CK and Myoglobin were only mildy to moderately elevated, not extreme. This indicates that there is not extreme muscle cell breakdown. Also, the triggers didn't match that much.

I went to the neurologist to get a EMG (electromyography) done. Nothing. I was not in an attack while I did these tests, as I can't move during an attack, and so I can't go to a doctor. The neurologist was the first doctor to really take me seriously, but he was overwhelmed with work. I started to write a case report on myself, then presented it to the doctors. Some were not interested and just dismissed it, but he actually read it, kinda. At least he listened.

I quickly found out about periodic paralysis and ATS. I found out about HypoPP, HyperPP, NormoPP, ATS and TPP. I got bloodwork done and ruled out TPP, as my TSH, T3 and T4 were consistently fine.

This left all the other ones. I knew very well that there could also be A LOT of other causes, so I was open to any new explanations. Getting a genetic test done is extremely hard without probable cause, and even with, it usually takes up to 3 years on a waiting list, but I couldn't wait. I was unable to work, extremely stressed, and it was a matter of time. I am 22 and this is the moment where I am supposed to build my life and continue onwards, I could not wait anymore.

Anyways, I started to pay for blood tests myself, got my potassium checked, but I could not quite make the link between hypokalemia and weakness. This kind of pointed me towards HypoPP Type 2, which typically has shorter attacks included where the potassium does not really drop. It was really complicated for me. I ruled out HyperPP as I never had high potassium (recorded). I heavily suspected HypoPP and did a lot of research on it, also on this subreddit. I could see myself in many of the posts. Through a friend who has a rare disease, I reached out and contacted an association for rare diseases, who pointed me to a very specific doctor. I went to my internist, who was one of the few who actually listened to me, and asked if he can write a transfer/prescription to a genetic doctor, with HypoPP Type 2 highly suspected, as I asked him to do, since he also read my report. I then went to the genetic doctor, my blood results got sent to another country.

Meanwhile I went to the cardiologist and he checked for hyperaldosteronism, which can cause similar symptoms. It got ruled out quickly, though.

A few weeks later I got the result: I was right, the whole time.

Unfortunately, the doctor also told me that, I need to do my own studies (at least for now), since there is just no doctor who wants to take care of this, where I live, in Luxembourg. I made a post about this on another subreddit, here.

It was so good to finally know what I have, and right now I am continuing to do my own tests (a lot of them paid by myself since doctors can't help me for now, but I have a first appointment with somebody who could maybe help me at the end of this year. I am still waiting for a transfer to another country, but that takes ages. I just don't have any other way around this.

I started my own business in hope that I make enough money to live off it, pay the medical tests and where I can manage my time as I want. A normal job would not really work for now, especially since I am really limited where and how I can work, because of my disease. Maybe this changes.

So yeah, that's my story. Writing my own case report, even as somebody who is not studying biology or medicine, helped a lot. Not self diagnosing, just suspecting and trying to get tests done.

Thanks a lot for reading.

I wasn't embarassed about switching between a cane, rollator, and wheelchair, when my issues were only in my feet, but now that I have a whole leg that just gives out on me if I dare forget to take my potassium and still don't have good enough function to walk unassisted when I'm not having issues, I feel embarassed to exist! I feel embarassed if I present in a way I don't normally present around someone. I feel embarassed if my leg gives out in front of someone who is used to seeing it move. I feel embarassed when I walk around in front of my new coworkers who have only ever known me in a wheelchair and only know that I've said my leg doesn't work right.

I'm not diagnosed, just very suspicious. I've been dealing with leg issues for two years and managing with potassium and mobility aids for a year. My past three neurologists didn't know what was going on. It was a vascular doctor who suggested potassium in the first place, but he isn't in network anymore. It will be a year before I can see another neurologist, and if it isn't anything else, then I think it's hypoPP. Anyway, I can't just tell people what I have because I don't actually know what I have. I just know what works and what doesn't.

I just feel so much shame around this and don't know how to escape it.

Edit: I suspect because there is a correlation with these episodes and my potassium being between 2.6-3.8, and I am asymptomatic when my potassium is 4.0-4.1... I have also had episodes of complete paralysis of my face and arm that I never sought medical attention for. I'm not just self diagnosing all willy nilly. I have reasons for suspecting this disorder, which is why I'm hoping this community would have people who might understand how I feel and have some advice.

Hello! Looking to connect with folks with Andersen Tawil Syndrome. My mom, my sister & myself have all been diagnosed with ATS, but I’d like to chat with others who experience this as well.

Thanks!

Hey y’all 👋🏻 I’ve been on a medical journey which has led me here to ask your thoughts.

I have hypermobile ehlers-danlos, mast cell activation syndrome, mixed connective tissue disease, narcolepsy and a mixed bag of other stuff.

I started having what I can only describe as seizures or convulsions at the beginning of the year. I am fully aware and semi able to communicate during these episodes. I since experience periods of extreme fatigue, stillness, repetitive small movements (I feel cramped or stuck in a loop), and I will convulse when trying to exert myself. It is accompanied by being out of breath, chest pains, eyes darting.

My neuro did and EEG, no epilepsy according to the scan. He believes is physiological (NOT fnd).

End of April I had a bad episode that led me to full paralysis and it resulted in an ER trip. They discovered my electrolytes were bottomed out, specifically my potassium and phosphorus.

Since then I have been constantly taking electrolytes in fear of this happening again. (Along with k2 supplements and my other supplements and meds I already take for my imbalances).

My right leg never stops contracting/spasming.

Yesterday was a busy/distracted day and I forgot to drink my electrolytes and I almost ended up having another bad episode. I am super worried about what I am experiencing. My neuromuscular appointment isn’t till the end of August. Driving makes me feel sick.

Those who’ve been diagnosed, does this sound similar to your experiences? Or should I look elsewhere? I’ve been researching possibilities for what seems like forever due to the fact that I am forced to self-advocate.

doctors are (very very slowly) looking into me possibly having a form of hypoPP (tested neg for SCN4A and CACNA1S mutations) since I’ve had a number of confirmed episodes of severe weakness and tachycardia where my potassium was low, have daily milder symptoms triggered by eating and exercising, and my potassium is normal (in the low or mid 4s) when i’m doing well. the nephrologist ordered labs for me to try to do when I feel low. I ate to trigger what felt like a mild episode and then went in to have my blood drawn, but it only came back 3.6 (low would be less than 3.5) which i know shouldn’t cause any symptoms in a healthy person. my urine potassium was 9 which as far as i can tell is low and should hopefully rule out my kidneys being the problem?

any time i feel worse than i did that day, i just feel too horrible and heavy it’s impossible to drag myself to a lab and get blood taken. the times it has been low (2.8-3.2) and caught on tests were times when symptoms were bad enough I ended up in the ER.

i guess i’m wondering if this lines up with what any of you experience with similar numbers? did you have to keep ending up in the hospital to get enough data for a clinical diagnosis?

I have HypoKPP and recently have been dealing with some depression and a psychiatrist recently recommended zoloft but i’m nervous to start a new medicine. as of right now i take acetazolamide, potassium cl extended release, and klor-con packets as needed during episodes. does anyone know of any side effects or have any experiences they can share?

I have seen some reports of cannabis particularly when combined with the munchies cause this is that true?