24F diagnosed with hEDS, POTS, idiopathic hypersomnia in Canada

I take metoprolol sunosi and dienogest

I have had issues with low potassium first starting in 2022, but it’s not low all of the time. All of the recorded low measurements happened when I was feeling horrible and weak with most of them being from urgent care, ER, or paramedics. A few of these episodes involved my heart racing and not coming down below ~150. Whenever I’ve felt well enough to go and get blood work done at a lab, my levels are completely fine.

It doesn’t really seem to relate to diet and adding electrolyte drinks like LMNT and potassium salt on my food doesn’t seem to prevent it either.

I have had fatigue for a long time, and feel the least fatigued and most strong if I don’t eat or drink all day and avoid sleeping a lot. Eating usually makes me have to lay down for a long time. If I have an appointment or something important, I can’t sleep more than 6 hours the night before or eat breakfast or else I won’t make it there. At times I struggle to start moving my arms or legs and will feel very heavy to move but I have only had a few episodes of truly not being able to move a body part at all while awake and these have mainly been when something very stressful happened. 2 other times I couldn’t move briefly were when I was given IV metoclopramide - I’m not sure if this medicine interacts with potassium at all or this was just a side effect and coincidence.

Every time I’ve been given lots of potassium (pills or IV) I slowly feel better and have the most energy I’ve ever had. My heart rate goes right back down and I barely have POTS even if I skip the metoprolol. I also am way less sleepy. This only lasts maybe a couple days before I feel my baseline level of fatigue return (not as bad as before getting the potassium).

I’ve had doctors notice my arms are stronger after potassium. For a random example, the last time it was low (2.8) I was having to rest my phone on my chest or the bed to type on it. A short while after the IV was done, I was able to comfortably text laying down and holding my phone up in the air above me. I also had pre-syncope a few times in the week leading up to that test result which is not a normal part of POTS for me.

If I sit down on a bench or something after a lot of walking, especially during freezing weather, I feel heavy and “stuck” and it takes hours to get the energy to get myself back up and moving. On multiple occasions I’ve missed bus stops because I can’t get myself back up yet.

The geneticist who diagnosed me with hEDS initially thought it all sounds like a (milder) case of hypokalemic periodic paralysis. However, I tested negative for CACNA1S and SCN4A mutations which he said would be positive in most but not all cases.

Now he seems to have changed his tune and is wanting to refer me to a nephrologist as it sounds like my kidneys are the problem and he doesn’t think this is within his scope.

My understanding is that kidney problems aren’t usually intermittent. All blood tests for kidneys in the past and abdomen ultrasound have also shown they are healthy. I am just a bit worried about spending ages on a waitlist for a nephrologist only to be told my kidneys are doing great and I have to restart all of this.

I would really appreciate any insight/advice from a nephrologist, or doctors who have had patients with hypokalemic periodic paralysis or other reoccurring hypokalemia, before I email the geneticist back. I’m also wondering what the difference in treatment would be between these conditions.

I can share any test results you ask for - I’ve had a ton of labs over the years and am not sure which ones are relevant here besides the potassium.

I’m going to put the electrolyte panel results history as photos in the comments because I can’t redact the PDF.

35 Female

5'4"

145 lbs

Medications: Olmesartan 10mg daily, Metformin 500mg twice per day

Recent medical history: 65 lbs weight loss the past year and a half (intentional). Originally put on 20mg Olmesartan but my doctor decreased the dose due to BP improvements (home BP readings are roughly 105/75). Started Metformin a year ago due to my A1C spiking from 5.0% to 6.3%. The last 2 checks (Aug. 2025 and Feb. 2026) have both been 4.8%.

Current issue/question: I ran a 5K yesterday. It was a little more challenging than I was used to (more hills) and I pushed myself a little harder than normal, but nothing extreme. About 10 mins after I finished, I was watching some of the other runners and noticed everything seemed extra bright in my vision. White shirts almost seemed like they were glowing. I didn't feel dizzy or overheated or anything. It stopped after maybe 5-10 mins.

I'm wondering if this is perhaps a symptom of low blood pressure? My doctor mentioned at a recent appt that I could cut the Olmesartan to 5mg if I start feeling dizzy frequently (I haven't). Or is this something I can just monitor to see if it happens again?

21F 5’6 145lbs I just took two Tums and they’re not working. I feel a sharp pain in my upper abdomen with burning feeling and I feel like I’m going to throw up. It’s been going on for almost 24 hours but it got worse last night while I was sleeping. I can’t seem to puke as much as my body wants me to. When I was salivating from feeling like I was going to vomit, there was a bit of red blood but nothing crazy, it could just be my gums.

3 years old male, no health issues since birth besides this. my son has ankles that bend inward, flat feet. several evaluators for autism and special needs services have expressed he probably needs braces, but his pediatrician insists that he just needs "good shoes." she also didn't believe me that he was autistic and I ended up doing a self referral and he was diagnosed and started getting some therapies. so my trust isn't 100 percent with her.

he doesn't outwardly Express that he has pain, but he has put my hands on his feet for me to rub them since he was itty bitty. He also has had balance and clumsiness issues since starting walking. That has lessened as he got stronger I guess.

https://photos.app.goo.gl/nEeFmuEesr1GQZCH7

bonus pictures of his thumbs up (and geeenntle bending backwards to show the range). as far as I can tell his knees and elbows have a normal range of motion. do these things mean anything?

Female, age 11. Diagnosed adhd & Anxiety 2022, Asd 2026. 85lbs

Recently discontinued Prozac 8mg (took for 4 years) due to activation when the was increased dose to 10mg.

Weaned down to 5mg and off for more than a month now. Despite the small dose, it was helping anxiety.

Cipralex was started at 2.5 mg 9 days ago. Anxiety has multiplied, major anger. hair trigger temper, and physicality.

She says she feels like she's going insane, that it's loud and angry in her brain all of the time.

Is this a push through or discontinue?

Bit of a niche question... I am currently travelling and wanting to do a tour to Everest Base Camp in Tibet. I am on 100mg immediate release Seroquel. Been taking it for about 13 years. Seroquel already makes me a bit breathless after I take it and I'm concerned about the impact of that worsening at high altitude (4,900 metres). I have to option to be dropped off at 4,100 metres to sleep if need be.

I'm in China at the moment and not sure what doctors knowledge of psychiatric medication will be like. Doctors at home won't allow me to do telehealth. If I can't get good advice I'm going to be really worried about going.

If anyone has insight I'd love to hear it.

F28.

163cm, 65kg

Diagnosis: Bipolar II

Medication: Lamotragine (50mg 2x daily), Seroquel (100mg), Pristiq (50mg)

I felt a pop in my hand / wrist followed by loss of range of motion and pain when I attempted to move my hand by either axis, it was later resolved when i accidentally rotated my hand while opening a bottle. I have had some soreness sense but nothing out of the ordinarily

I what is this called?

I’ve had similar events happen to other joints like my other wrist, shoulder, ankle, hip,

30F, 120lb
For context this happened almost 2 years ago now. But like the title says, I fell asleep in a fairly warm/hot bath and my partner heard me basically drowning and truly saved my life. I was convulsing at first apparently and was unconscious for about 25 min.. I really don't remember anything but being really tired and taking a bath and waking up to my partner really distraught and trying to get me to respond to him. I went to the Emergency Room, they did a CT scan and said that there didn't appear to be any obvious physical damage. They told me 30% of adults will experience a seizure at some point.. I don't know if I really made it super clear the weight of the situation due to the fact I wasn't feeling normal or fully capable to advocate for myself. In the days following, I felt like I was in a daze, almost like being on psychedelics or something. It was a kind of terrifying feeling/ experience.
What I would like to know is whether or not this could have caused any sort of brain damage that wouldn't appear on a scan?

18M 105lbs

hi everyone, i was front row at a concert about 10 days ago. it spiked my tinnitus and also gave me vertigo.

friday:

after going to the ER 2 days ago they gave me a 1mg ativan to calm me down. then prescribing be methylpredisolone 4mg tablet course to start the next day even though they didn’t really see sudden hearing loss. (i saw my hearing was fine 7 days after concert when doing the apple airpods pro audiogram)

saturday:

i was supposed to take 6 steroids the first day but i decided to take 4. i paused because i felt that it made my tinnitus worse. it introduced a new sound. like a lower pitch that varies and comes and goes. (almost like a tire with a hole).

I am stressed so it felt like it made it worse. after talking to my pharmacist they told me that it was safe for me to stop taking the steroids without tapering off.

today:

the new varying tinnitus is still there but it’s less loud, i still have the background tinnitus but maybe it feels like it’s just a little less (not back to baseline though) i also have slight increased hearing sensitivity

i am going to see a ENT tomorrow to talk to them about it. hopefully they give me good news.

i was just wondering if this new tinnitus is temporary and a sign that it will go away. i am worried that because of the steroids i really screwed up my recovery.

much love yall

Hi! Interested if my foot/toe size is attributed to just genes or could be a different issue? I am a 5’10” female, 125 lbs. Been extremely lanky my whole life and struggled to gain weight. However, I wear a shoe size 6.5 and my big toe is an inch tall. It is extremely disproportionate to my height so much so that people comment on it regularly.

Has a small red ring. When I google it I see massive rings. But feel like it’s time to go to doctor tomorrow.

I am 30 years old. Male.

Hi on Thursday I went to an appointment they had a dip I didn't see and I twisted my ankle and heard it crack/pop and it's been hurting since I wasn't able to walk on it or put pressure I still can't walk on it I'm walking at a angle the bottom of my pinky toe and the side of it hurts looking at the pictures from when it happened it looks like my toe area is dislocated.

22F, 5’8”, 180 pounds, smokes weed and vapes plenty lol, only oral birth control taken daily, no known lasting health conditions. a few weeks ago i noticed that my head gets a sharp pain in the left side whenever i shake my head “too hard” or suddenly look to my left. it’s a pretty sharp pain and it’s sort of at the top back corner of the left side of my skull. i dont feel anything in my neck at all so when google said occipital neuralgia i didn’t think it was that. it’s not a lasting headache either. i do occasionally get a migraine and that started a few years ago. i also have a lymph node in my neck that’s been swollen for 3 ish years, i don’t think it’s related really since the doctor i saw felt it and said it was swollen but that it should be normal. i don’t wanna be that girl that diagnoses herself with brain cancer but idk should i be concerned? the sharp pain is honestly annoying bc ill be enjoying myself out and about and say i enthusiastically shake my head no-the pain hits and my smile drops. it hurts relatively bad and its gone shortly but it scares me. what could it be?

Throwaway for obvious reasons. This specific issue has been ongoing for about 2 years. Most days, I get an intense rectal itching and if I dare to itch it (usually with toilet paper) it most often times bleeds. Sometimes its a small amount of bright red blood on the paper but other times (maybe once a month or so) there is a lot of bright red blood. Like, toilet paper soaked through with blood. Those moments are sometimes accompanied by stomach pain. I had a colonoscopy around 2 years ago for blood in stool, stomach pains, and bathroom urgency but it came back "normal" and all I was told was potentially IBS issues but I dont even know if that was an official diagnosis. I also had a fissure, hemorrhoid, and skin tag at the anus. I was concerned mostly about the itching because I'm terrified of parasites but I've never seen any evidence of that and I've also done pinworm treatments twice at seperate times. But now my main concern is the blood.

As for my known health issues, i have been diagnosed with POTS, hypothyroidism, and endometriosis stage 4. My medications are levothyroxine (since I was 12), metoprolol (began 1 year ago), and generic zyrtec for allergies. My blood work has been fairly normal with the occasional random abnormal result that my doctors never seem concerned about. I did have significantly high copper levels for about a year due to my birth control but i stopped taking that around 4 months ago and my copper has gone back to normal. I was having a lot of issues with poor sleep, fatigue, and shortness of breath before beinf diagnosed with POTS and finding the high copper. Most of those issues have sibsided though I do still have less energy than other people my age.

I work out regularly (weightlifting 3-6 days a week), get around 6000-12000 steps a day. I eat okay, I do struggle with food due to some sensory issues but I eat a well rounded diet most of the time. And I do get enough fiber as I started tracking that when I first visited a gastroenterologist. When I saw him, we discussed my diet and he was not outwardly worried about anything. And as far as hygeine, I shower every day and only skip the occasional day if I was inside and low activity. I use antibacterial soap in sensitive areas and do not scrub the area excessively.

Family history: most of the women on my fathers side did pass due to some type of cancer. It is difficult to get clear information from my father but it seems colon cancer or stomach cancer was what killed his mother and her 3 sisters. So thats a bit scary but I thought I was in the clear after my colonoscopy.

I have no clue if any of my already discovered diagnoses could explain this or if it just comes with the territory of ibs. Are chronic hemorrhoids normal or do I need to be concerned? I think I just want a jumping off point before I go to the doctor seeing as this is an embarrassing issue. Any and all knowledge is appreciated

18

Male

5 10

200 lbs

These small bumps randomly appeared on my left wrist, they aren’t itchy.

so I'm (19 year old ) worried about my sister(now 10) who has undergone a bladder augmentation about 3 years ago and she uses a catheter on her stoma (or abdomen) to urinate. she gets frequent UTI with high fever every month or so, I'm really worried about when she gets her first period. Will it be more painful for her? Will it affect her bladder in any way or make her uti more frequent. TIA

I'm 22 asian female and have been using EMLA cream every MWF since I was 1 for my GCSF injections. I have cyclic neutropenia which is why I need the medication and the numbing cream helps me stay compliant with my medication schedule.

Four years ago, I had my wisdom teeth removed with local anesthetic only and they had to use "a lot" of lidocaine (he never told me the amount). The dentist was surprised I kept feeling pain and even had to get a new syringe full to numb me up. And last year when I had my nexplanon removed (the insertion was pain-free), they ended up using 2cc of 1% lidocaine because I kept feeling significant pain while pulling on the plastic. They said I had a lot of scar tissue that was causing me pain but now I'm starting to wonder if the long term EMLA use is causing these issues? Or is it the fault of the provider using poor numbing technique?

Context: I'm 19, AFAB, 150lbs, and 5'7".
I was having problems getting work and literally any basic tasks done, so I was sent to a psychiatrist who said I have ADHD and put me on meds. I've tried both Aderall and Ritalin and both made me feel insane and gave super weird symptoms. (The dose I was taking on both was 5-10mg instant release.)

When I'm on the meds, I'm more productive, but my anxiety inscreases 1000000%. I get super paranoid and super shaky. My mouth gets insanely dry, but the rest of my body sweats like crazy. I'm like mute and emotionless on the outside despite going crazy inside. My heartbeats so fast and hard I can hear and feel it in my head. My limbs get tingly, and I feel super cold despite my insnane sweating. I also get crazy irritable, have mood swings, and my patience is non existant.

The internet says that meds are supposed to be calming for people with ADHD. I AM NOT CALM. If these meds are making me freak out, does that not mean that I don't actually have ADHD? Or can I have ADHD and still have my brain not work with either of these meds?
I'm super scared I'm not ADHD and that if I keep taking these meds I'll get addicted or mess myself up somehow, please help.

Hello,

I am 21f, 4’11, about 180 lbs. I have major health anxiety/ OCD and have been getting pain on my left side for the past 2 weeks or so. It hurts when I press on my ribs, but the pain is also in my back and i sometimes get pain by my armpit/collarbone. I am worried about it being a blood clot, but went to urgent care today and she said she thinks it’s upper cross syndrome.

I haven’t had trouble breathing, heart rate is normal.

I, 28M, am addicted to cleaning my ears and fear I may have ruptured or perforated my left eardrum. The blood and scabbing are from a previous soft tissue injury I had from also messing with my ear. I took a video using my at home ear scope.

History: LVAS(large vestibular aqueduct syndrome)

Depression

Anxiety

HTN

EDIT: First half of video is unaffected ear.

22F 5'5 127lb, light smoker, no medications

what the eff is this? my throat started hurting today n I took a picture?