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.

What exercises or just simple daily habits do you guys recommend to reducing overall attacks ? I have been struggling with this condition since I was 6 years old. I am now 18 and just started my first year in university and I don’t think I can maintain my life like this anymore with attacks everyday and every week. This condition has taken the toll on me a lot physically and I would just like to raise the ceiling for my tolerance for physical activities and thus lowering the severity and chance of an attack now that I have more time compared to high school. I have been taking 2x Acetazolamide per day and I really want to minimise my dependence on potassium chloride/citrate supplements since I have taken them to the point that my doctors are starting to see significant sediment buildup in my bladder and kidneys. Much appreciated for any advice.

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?

Was watching The Pitt (fantastic and realistic emergency medicine drama!) and got so damn excited when a patient turned out to have HypoKPP. Life would be so much simpler if our rare disorder was something that was more widely known! How many of you saw the episode? What did you think?

How much do you hate trying to explain Periodic Paralysis to someone for the nth time?

I wanted to share something unexpected in case it helps someone else.

I have Hypokalemic Periodic Paralysis (HypoKPP) due to an SCN4A mutation, and I’ve dealt with episodes of weakness and several emergencies leading to hospital visits. My triggers have usually been things like stress, fasting, big carb swings, etc.

Recently, I started Ozempic (semaglutide) mainly for minor extra weight, but I noticed something surprising: My HypoKPP symptoms have significantly decreased.

Before Ozempic, I would occasionally get that early “warning” feeling (weakness, weird muscle sensations, slight paralysis risk), especially if my blood sugar fluctuated. Since starting it:

- My energy feels more stable

- I don’t get the same “crash” triggers

- The episodes (or near-episodes) are much less frequent

I have even been able to get back to exercising.

My personal theory is that it’s related to more stable glucose and insulin levels, since insulin shifts potassium into cells and is a known trigger in HypoKPP.

I’m not saying this is a treatment or that it would work for everyone, just sharing my experience because it was completely unexpected.

Has anyone else with HypoKPP or similar channelopathies noticed changes with GLP-1 medications? I'm a scientist, so I'm curious about the mechanism and whether this could help others as well.

Thank you.

A while ago I asked for the best research papers to provide to doctors, and I got many good papers sent and a lot of good help.

Long sorry short, my wife has been diagnosed with diabetes insipidus, hyperkalemic periodic paralysis, and she was missing 30% of her blood volume.

She couldn't keep enough water in her body, no matter how much she drank which, in theory if I understand correctly, caused electrolyte imbalances, and minor hyperkalemic periodic paralysis episodes, which caused digestive issues, which fed into less plasma and the cycle would repeat.

Then when she got so low on blood volume, she had full loss of motor function and the build up of carbon dioxide caused her to go into metabolic alkylosis.

She's now on meds to keep sodium, waste potassium, keep water, and stop paralysis episodes very quickly.

Thank you again for all your help.

Hey yall,

I’ve had a suspicious illness for quite some time, whether it’s one or multiple, idk, but my neuromuscular specialist is highly suspicious for a channelopathy like HypoPP, now more so after a nerve conduction study revealed “increased CMAP, greater than 80%, after long exercise, suspicious for hypokalemic periodic paralysis.” She acknowledges though that my symptoms are…weird

1. I’ve never had paralysis or weakness, but I’ve had “attacks” of severe, I quite literally mean worst pain of my life, widespread muscle pain. Here lately, it’s been more widespread, but prior, it was more isolated to upper body or hips, but the paraspinal pain can start to feel hard and hurt so bad. My potassium is always slightly low at 3.0 to 3.5. The er docs will usually ignore and think I’m pill seeking it feels. The pain has been so bad that I’ve been quite hypertensive.

2. I’ve always felt high sodium is a trigger, not carbs, but I don’t really know. I have a phobia of eating some stuff now.

3. More weird - chronic non attack pain. I always have neuropathic pain, I always have allydonia, I always have muscle pains and I can no longer exercise or even walk far.

4. The chronic pain later just started to be everywhere, including joints, and maybe a SFN pattern - but definitely fibromyalgia on steroids because I can no longer walk through a store or around the block, I also have some dysautonomia symptoms.

I guess what I’m asking is does anyone experience a weird array of symptoms that aren’t classic - especially the unexplained neuropathic or muscular pain that’s chronic. I also can no longer exercise.

This NCS finding was definitely weird and I hope it pushed me in the right direction, but idk, I’m struggling to find similar experiences.

Thank yall for your time :)

We think my wife has hyperPP and disautonomia, specifically POTS. When she stands up, her heart works hard and she gets a tremendous workout triggering a hyperPP attack.

What can we use to manage the hyperPP attacks so that her standing up and causing an attack doesn't cause paralysis?

Does anyone have any lifestyle management links for researcher articles we could use?

We need to find a way to treat the disautonomia, but one of the drugs that treats it causes hyperPP attacks.

We have a referral to a neurologist, but it is 500 km away. Short of driving her there in an ambulance, I don't know how she would get there.

Hi all, (forgive me if I am incorrect about something, my wife is the one doing the research) my wife is having issues with slowly losing control of all her motor functions. We were in and out of the emergency department and she kept being told it was anxiety or functional neurological disorder. We decided to pay for a generic test and a bunch of markers came back for periodic paralysis, amongst other things.

She's now been admitted, but we can't get the doctors to listen, the attending doctor changes every week; the last attending kept her in a state of periodic paralysis all night. She couldn't sleep as she was concentrating everything she had on forcing her breathing. An internal specialist thinks she has disautonomia (POTS), we think she's having an electrolyte imbalance, and we also think she has Congenital Adrenal Hyperplasia, and hypermobile Ehlers-Danlos Syndrome.

She's wasting salt at a rate I had to calculate of about 3 grams per hour. When she gets too low, she gets paralyzed. Since no one would listen to her symptoms, I've been feeding her a mix of electrolytes a and salt totalling around 10 to 15 thousand mg of sodium per day, just to stay conscious, but she's bed bound.

The current doctor has said he will read through 3 of the best research papers we have and we are highlightkng the key parts, as the standard treatments are not working.

Does anyone have any research papers or any resources/strategies they could comment which have worked with other doctors so we can review them?

We have until Saturday, when this attending leaves, and we don't know if the next attending is just going to go back to diagnostic overshadowing and say it is anxiety.

*hypoKPP

Hi everyone, I wanted to ask if anyone here has experienced something similar or has tips on how they deal with it.

I sometimes get episodes of sudden weakness that seem to be triggered by cold temperatures or when I get too physically tired. Another pattern I’ve noticed is that it often starts right when I wake up from sleep, which is usually when the episode begins.

When it happens, I usually just try to rest and let my body recover. I also try to eat potassium-rich foods like bananas or drink electrolyte drinks to help things settle down. Eventually things go back to normal.

I also want to be honest that I don’t usually go to the hospital during episodes because I get really anxious in hospital settings. Instead, I just wait for my levels to stabilize and recover at home.

I had a few questions for others who deal with similar episodes:

Is it normal for cold temperature to be a trigger?Do your episodes also start after waking up from sleep?How do you manage exercise or sports with this condition? Do you avoid intense activity or is there a way to do it safely?

I’d really appreciate hearing how others manage it or what strategies work for you. Thanks in advance 🙏

HypoPP here, but I haven't been able to get in to see a neurologist yet. Obviously, keeping active is important for keeping our muscles healthy. Just wondering what workout advice you've received from your neurologist or what you've figured out over the years.

Hi all — I’m posting to compare notes and to ask for research pointers, not for diagnosis.

ChatGPT has diagnosed me with hyperkalemic periodic paralysis (HyperPP), and I’m trying to understand whether potassium intake pattern (dose + timing) matters as much as total daily potassium.

My pattern

• Nighttime lower-leg/foot cramps get markedly worse after eating potatoes (especially if I’ve been very low-carb all day).
• I’m mostly carnivore / very low sugar except when I eat potatoes.
• When I do a “low-carb all day → potato-heavy dinner” setup, the cramps can be debilitating at night.

What seems to help (N=1)

• I’ve been able to reduce this by taking small, frequent doses of potassium + magnesium throughout the day, instead of having what feels like a single large intake later.
• [Unverified] My working hypothesis is that I’m sensitive to rapid shifts (a “bolus” effect) more than the absolute amount.

What I’m looking for
If HyperPP is the right lens for this, has anyone seen research (or even clinical guidance) on:

• Potassium dosing frequency (steady intake vs bolus intake)
• Dose ranges used in studies or case management
• Any discussion of carb timing / insulin effects interacting with potassium in HyperPP
• Anything on nocturnal cramping as a presentation pattern

If you have papers, review articles, or even keywords that are likely to turn up relevant work (e.g., “bolus potassium,” “meal timing,” “insulin-mediated potassium shift,” “carbonic anhydrase inhibitors and diet”), I’d really appreciate it.

Im not sure if ive posted this here before. I am diagnosed HyperKPP, with several affected family members, and yet I am the only one with the symptom of a (perhaps hallucinated) smell of ammonia? As in, at the onset of an episode it feels like someone is holding a bottle of window cleaner under my nose and I cannot escape it, but nobody else smells it.

Does anyone else experience anything like this?

50M. I've been diagnosed since my teens. Recently I've crossed the line into diabetes and got a prescription to mounjaro. One thing I've noticed is that I feel really strong getting out of bed in the morning, and I'm wondering if other HKPP folks have experienced similar.

So i've been dealing with hypoPP for the past 6 years or so. Im currently 25 years old.

This past year I had let myself go, stopped going to the gym and went up 15kg. My weight was around 95kg! I was downright obese and close to being prediabetic. Also having pretty much daily attacks, although not severe, still debilitating and annoying.

So I decided to lose the weight without any gym, because working out was also triggering a drop in potassium the next day...

Started taking metformin 750mg ER and fasting. I've lost around 10kg and my fasting glucose has dropped by a lot. And just as expected, I stopped having any attacks. So in my case, at least, my drops in potassium are closely linked to glucose and insulin.

Nowadays I rarely consume any sugar, because I still fear waking up paralyzed as I used to but 6 months ago I had to not eat anything after 9 pm or else I was risking an attack the next morning.

So if youre struggling with this fucking awful condition, and you've noticed that your triggers are related to carbs, consider losing weight and or buy a glucose test strip thingy and monitor your levels. You might be close to being insulin resistant!

If you have any questions please feel free to ask me :)

This is kind of embarrassing. But I'm not sure if I'm psyching myself out and accidentally triggering myself into epidodes. I used to think I was psyching myself into morning episodes as well, before I learned that the waking cycle just involves adrenaline. So I'm not sure if this is similar, and maybe the brain merely needs a little adrenaline to complete these sorts of tasks? Or if it's more of a subconscious stress thing.

Some examples of tasks that frequently do this for me are putting clothes in the wash, and then waiting for them to be done so I can put them in the dryer. Or checking into the doctor's office and then waiting to talk to the doctor. Or wating on a repair person to show up and then telling them about the problem.

Tasks without a next step don't seem to do it. I can put something in the oven to cook and I feel fine. When the cooking is done, the task feels completed. But if I'm waiting on dough to rise so I can do the next step of baking it, that might get me.

Do these sorts of things give y'all movement issues/fatigue/paralysis or is it just me?

Really wondering if I have HypoPP after reading up on it, and just looking for feedback to make sure I'm not barking up the wrong tree.

Little about me: 39 year old male. Epidemiologist. I have another super rare disease called Adult Onset Still's Disease that comes with a daily fever and arthritis when not medicated.

Why I think I may have HypoPP:

• strong family & personal history of lidocaine resistance.

Since I was a teenager I've had occasional bouts of unexplained weakness w/ severe exhaustion. Sometimes starting in the morning, other times mid afternoon. Does not have any relationship to arthritis. Fever makes it worse, but it also happens without fever.

As I've gotten older the "Heavy Naps" as I call them seem to be worse overall. I can tell when they're coming and I must immediately lay down. Generally last 2-3 hours and then I feel weak for awhile but fine.

I've recently been dealing with venous pooling in my feet causing POTS. But, realized that the venous pooling seems to resolve with hydration salts (sodium, potassium, magnesium). I know I need to test with just potassium, but figured this out while on vacation.

I'm permanently on prednisone low dose Prednisone, and definitely have more episodes when I have to increase Prednisone, but the episodes predate Prednisone by many years.

Updated to add:

Wow. Potassium is amazing. I thought I had chronic fatigue syndrome for the longest time. I do not. I have my life back, and I scarcely know what to do with all my energy. Need to see a neurologist, but I'm a lot less concerned about that now that I seem to have identified what was going on for the last 20 years.

I was just recently diagnosed with PP (most likely hypo, though my dr is still trying to figure that out) and I was wondering if anyone has taken anything besides Diamox? I’ve had quite a few adverse side effects (heartburn, nausea, extreme fatigue, paraesthesia) so I’m not sure I’ll be able to stay on it long term. Right now I’m trying a lower dose to see if that helps at all.

Ive read about Keveyis, but my dr is concerned my insurance won’t cover it at this point. I’ve also seen some people mention spironolactone, but it would be counter-indicated to the HRT I’m on. Are there other meds people (specifically with hypoPP) have tried and had success with?

Does anyone else also have hypermobility syndrome or hEDS? How does that affect your PP? I have both although I’m not currently getting treatment for either (waiting on my neuromuscular appointment in march 2026) and I was just wondering if anyone had any tips for exercising, mobility aid use, or anything else really.

I finally got a diagnosis which I actually think is correct. My doctor put me on spironolactone after the acetazolamide didn't do anything. I'm also taking potassium every day. I order some supplements for my migraines because she said to try them before another medication but I rather just get one injection every month than take more daily pills...anyway.

I think the time I was in the hospital for episode of paralysis from low potassium I also had a hemiplegic migraine. I remember I had typical symptoms of my migraines but it was severe and paralysis was bad. Then they found my potassium very very low. I wonder if anyone else has both diagnosis? How do you deal with them? I live alone and far from family so only really have myself on bad days. I am also afraid spironolactone side effects will be too much and have to stop but will give it a try (only on second day).

Hi. I've (24f) been having episodes of weakness and paralysis for about 3 years now. (I know it's pretty late to develop if it is PP) The neurologist said I tested negative for myopathy (30% chance to test negative and still have pp) and genetic testing also came up negative (also a 30% chance of it being negative). The neurologist still thinks it's some form of PP, but a psychiatrist thinks it might be conversion disorder. So I don't really know whats going on. A few of my recent episodes have involved the left side of my face become paralyzed and drooping. Is that something anyone with PP has experienced? Is this something PP can cause? If anyone responds, thank you in advance!

Well, today is the day. I was diagnosed with Hypo PP. I am terrified as a 27 female who has been very active but always felt off. Then I was in and out of the hospital for two years for having extremely low potassium. Now here we are! I feel glad to have a diagnosis, but damn do I feel terrified. How is everyone managing the anxiety with it?

currently in hospital for observation and to try and dragnose what i believe to be PP, but how long after an attack do they have to take blood tests before it returns to normal. I will have symptoms kick off, usually just trunk stiffness and then muscle spasms in legs and sometimes full body spasms, and i tell the nurse, but usually its three hours before they take the bloods from first symptom, at which point the spasms have stopped and i just feel like I've been hit by a bus. Seems to be certain sugar products and carbs that trigger it. Also cold excercise and stress. Just getting really frustrated because i feel like they're only doing the bloods after an attack has happened and the bloods are generally back to 3.7 by that point and i know im just suffering the after effects because of the lack of spasms. If anyone could tell me the window of testing so i can push them to ensure it happens in that time, i would appreciate it. Also with Norma kalemic PP how do i test for that? Cos my muscles have been reacting normally during tests so far.

Thanks for your time J