My boss has been asking what I need for reasonable accommodations at work for my POTS, and I'm not sure what to tell him. Admittedly, I was unprepared for the request. This started with me informing him that if he catches me unconscious at my desk, I'm not sleeping. I'm just passed out from the POTS. I tried explaining that I can usually feel the blood pressure drop, and will go ahead and sit down and pass out for a few minutes. (I had been fighting passing out in the past, but that never ended well.) I could see the concern for my health and liability flash in their eyes during this conversation. Upper management is now getting involved and it has kicked off a medical reasonable accommodations request. They are now asking for anything they can put into the request to aid with my condition. They want to put as much as they can in the request that can help with the condition.

So my question is what should I request?

Here is what they are going to do.

• Provide me with an ergonomic chair.
• Letting leadership know so they don't think I am sleeping when they walk by.
• They are trying to get me parking close by the door so I don't have a long walk in the 100°F summer heat from the parking lot to the building (though I doubt this will work out given how little parking there is by the door).
• They talked about putting bumpers around my desk so I don't hit my head, but I thought that was a bit much. Especially since I don't have blackouts by surprise anymore since I started this medication to raise my blood pressure.
• Telework is out of the question.
• More break time.

Despite them doing all this, they still want more. I appreciate they are concern,ed but I'm not sure what else to ask for. What else could I ask for that would help with my POTS?

For background, I am a former lab supervisor who was a phlebotomist for 10+ years. I assisted with the clinical portion of a phlebotomy training program allowing students to collect specimens from me several times within a couple of hours. I also was the test patient for phlebotomists who interviewed with us to access clinical skill/technique.

However, since becoming symptomatic and being diagnosed with POTS I get symptoms of pre-syncope every time I have my blood drawn. This is regardless of my hydration level or fasting status. I do have hypotension now which I recognize is a contributing factor to my symptoms.

The first time I had no idea it was going to happen and thankfully I was having my blood drawn by my former employees so they recognized that my reaction was abnormal. Now that I know this is my physiological response, I ask to lay down and have had no issues.

I’m curious about the experience of other potsies since this feels like a very unexpected symptom.

My son has type1 diabetes, so we are used to being mindful of keeping sugar on hand.

Type1 & type2 are nothing alike. Although they may seem similar to you, they have entirely different causes, mechanics, and courses of treatment. If you know someone who has t2d and has been told to avoid sugar, this does not apply to t1d. Keeping both sugar & insulin on hand is necessary for the health and safety of all t1ds. If he goes low, he has to have sugar, or he can pass out. Please don't at me for allowing my son to have sugar. ((Edited onlybthis paragraph for clarity.))

Anyway...

How does this relate to POTs you may ask?

Today, I was having a lot of trouble keeping my balance and I needed a salt break and my daughter was like, "Mom, this is like "salt diabetes!" Lol

I was like, oh wow, it is! Haha If I don't have salt, I'll pass out, just like if my son doesn't have sugar, he'll pass out. (Obvi, type1 is more complicated and dangerous, but this was a light-hearted comparison moment.)

it could be an error from my apple watch but recently my heartrate has been randomly dropping to the 40s for less than ten minutes (my usual resting HR is 70-100bpm) but i feel completely fine during them and i didn’t know that they were happening until i started checking my heartrate range everyday. does this happen to anyone else?

Newly diagnosed with POTS so I'm still learning everything. Anyone feel like they can't process any kind of emotion, even excitement, without physically overreacting? I will literally be excited to see a friend and it causes a panic-like reaction which is tachy (heart racing), shaking, flushing, general fear feeling? I don't know if it's related at all but just wondering if anyone deals with this

Hello,

To those of you who are able to work, how are you able to get job opportunities for promotion?

For reference, I am a 27f with pots and Ankylosing Spondylitis. As you all know, by being in constant pain and having constant symptoms, my "normal" is set below the average person "normal" when I comes to energy. According to my boyfriend, because I have a lot of instinctive actions to conserve energy constantly, I can come across as uncaring or indifferent when communicating and that can seem like I'm doing the bare minimum in a job setting. It is definitely never my intention to act as so, and I really am caring about my job, but I am not sure how I can fix these actions to seem more deserving of job opportunities as these actions I take are what is enabling me to function and work. I'm being vague in the specific actions because I'm unsure of what specific actions I take that give off those vibes. Does anyone have any advice?

Update: doctor prescribed paxlovid and tessalon pearls, also recommended that I take antihistamines and electrolytes. What brand electrolytes do you use? Sometimes liquid IV makes my POTS symptoms worse, specifically palpitations.

The doctor today told me there’s nothing to do for Covid except take Tylenol. I have a low grade fever, body aches, more palpitations, sneezing and congestion, coughing, painful ears and a sore throat. What were your symptoms, and did they make your POTS symptoms worse?

I am devastated. I was supposed to leave tomorrow morning for a trip to visit family. I have been looking forward to this for months. I’ve had a ton of stress from family drama, my cat dying, and work, and medical issues and I was so looking forward to this trip. At least I’ll stay home and try to make sure I can feel okay. Any tips for my quarantine are appreciated.

Oh yeah, did I mention I’m a teacher and I got diagnosed on the first day of spring break? Just my luck.

So im in the diagnosis of idiopathic intracranial pressure (iih) so i just want to make sure if this is my POTS or iih…. BUT MOST IMPORTANTLY i want to know if people with POTS ever experienced this. Ofc google is not a doctor but it always says its more of POTS than iih. When it happened? For example today after eating a meal but it also happens during the day:

• i have extreme head pressure pressing against skull

• so my legs get so heaaaavy as if they are out of lead

• what happens next? As if beneath me is a big big big magnet pulling on brain and legs.. to the ground… no not ground but to the core of the earth. Like that heavy magnet sensation.

Please tell me if u ever experienced this?

I've started my newer beta blocker, Ivabridine, because Metoprolol made my already low BP tank. I've been taking half a pill once a day, and it was working wonders at first.

This week, I had two major flare up scares out of no where. At the cardiologist, and at a hair appointment today. I know part of the problem is lack of sleep. I already have insomnia issues and I've added melatonin to my list because I can't deal with this shit on top of POTS.

The problem is that my appointments have been fuckass early in the morning, so ill be getting at most 5 hours of sleep, I'll wake up an hour before my appointment, take my beta blocker & anxiety med, compression socks, liquid IV, all of it, and be out the door. My heart just doesn't adjust quick enough.

When I started to feel it at the cardiologist in the waiting room, my vision going blurry, my heart racing, checking my pulse and feeling the jump from 50's to 150's, just while sitting up? Felt awful. I started fanning myself because my whole body got hot, and I could feel everyones eyes on me. Of course I already look fucking stupid being there because I'm 19, and everyone else in the waiting room is pushing 80-90 years old. My name got called and I rushed into the back room as quick as I could before getting on the floor and putting my feet up, my muscles convulsing as I tried my hardest to regulate my heart. It lasted for about 20 minutes.

Today, again. I was just sitting up, my stylist was about to put color in my hair, and my vision did the thing and I immediately felt off. I put on my pulse monitor and watched the jump from 65bpm to 172bpm. Immediately had to ask her if there was a place I could lay down. She's aware of my POTS, but obviously, everyone else in the building is not. So I'm stuck, laying on the fucking floor with my feet up, seizure-level shaking, while everyone is looking at me like I have two god damn heads.

The problem is that the second my flare starts, it triggers my anxiety, which of course, only fucks with my heart rate futher. My POTS flares make me feel like I'm going to pass out, puke, and shit myself all at the same time, and the idea of doing that in public as I cry is just absolutely terrifying. Having to get down on the ground is slightly less embarrassing, but still embarrassing.

I'm going to start taking one full pill once a day and see if that changes anything. I just hate this. I had a massive win last week because I went over to a friends house for the first time in 8 months since my first flare. It was successful and I broke out of my comfort zone completely, I was so proud of myself that day. But the last few days have just been setback after setback, and I'm slowly growing scared of leaving the house again.

Does the embarrassment EVER go away? Am I literally going to be stuck with this fear for the rest of my god damn life?

I’m not sure if it’s the change in weather where I live as we transition from winter to spring, or something else, but I’m getting so many more flares recently. I work full time right now and it’s awful on my body. My main goal is to survive the day and lately I hardly can or have to go home early bc I will have an episode. I’m also getting married in May! I want to be okay for my wedding but I’m constantly going in and out of flares. I have an appointment set up with a specialist in 2 weeks, and I’m seeing a dietitian. I think that I seriously need a break from working for a month or 2 to try to get things under control plus I’m just exhausted. I’m also not a huge fan of my job. Idk what to do. I’m only 22 and I feel like my life is falling apart.

Hey so I had an episode recently at my boyfriends house and he said that my eyes went really red, what he actually said was “bro you look high asf” does this happen to anyone else? I took a photo but can’t add it, I get clusters of red like popped capillaries towards the inner corner of my eyes.

Ok cute story now:)

My boyfriend of 3 days officially!! Was informed of my conditions but hadn’t ever seen or heard of it before, POTS specifically. We were in the middle of making out when I straight up passed out and started convulsing. When I came around maybe 3-4 minutes later, my boyfriend had a pillow under my head, my feet up at an angle and an ice pack on my neck🫠 I was a bit foggy and probably said some string of words that didn’t make sense but he said as soon as I told him my conditions he RESEARCHED and MADE NOTES on what to do and when to make and emergency call. I love this guy🤍

I don’t follow my own advice and i never eat breakfast in the morning- I’m usually on and off nauseas all morning until about 10:30. I’ve tried shakes and yogurts and full breakfasts of course but i can’t stick to it because i just truly don’t have an appetite for anything that early in the morning. But i think (know) eating would help me feel better and also help me with taking my meds in the am so it’s not on an empty stomach. Does anyone have any easy, light breakfast food recs or even just how to eat when you have absolutely no appetite 😅

Hi

Has anyone had any dealings with Newcastle freeman for pots diagnosis/autonomic dysfunction? I live close and am pushing for a referral to this hospital for testing. I am also an hour away from Sanjay Gupta but this would be private and not sure about costing et. I would probably hope he would refer me on your the correct department for testing after a consultation. It's difficult to get a foot in the door as my cardiologist was pretty dismissive of pots

22 f

Hey everyone, I just made the super ultra worst mistake of my life by logging into an old instagram account I created back in like, middle school. I’m still following everyone I graduated with, and wanted to just kinda see what they were up to I suppose even if I don’t talk to anyone anymore.

Bad decision lmfao.

One of them, my old best friend, is 20, living in miami and looks so different and pretty. She’s completely changed and looks so happy. It’s not just like oh she grew up, she has a completely new look. I am happy for her.

My other old friend is ENGAGED! at 21! I was in shock. everyone else is in college or getting out. All of them are traveling and I found myself starting to get teary eyed at how I’m the only fucking kid who’s done NOTHING. I couldn’t go to school because I got sick, I can’t work, I can’t travel, I can’t meet anyone and date because I’m tired and at home all the time.

It breaks my heart. I can’t even get myself to message them and try to reconnect because the embarrassment of having to explain that I am not in college or working is too hard to bare right now.

It’s so fucking isolating.

TLDR; logged into a high school insta account, all my friends are traveling and engaged and alive and I’m a zombie stuck in time.

I went hiking yesterday and thought i did everything right. I was on top of my hydration, snacking, salt. I wore compression socks and bodysuit. I listened to my body and tapped out when I felt like I had to stop. And I still ended up fainting at the restaurant we went to for dinner 🫠

So i’ve recently been pescribed ivabrodine, i think that’s how u spell it anyway.

I’m a little anxious about side effects and wether or not it will actually improve my symptoms, so if anyone has any experiences please share!!

i will chug 16oz of water at once, used to do it no problem and i’d feel great after, but recently EVERY TIME i do it i get an absurd blood sugar crash and i get shakey, nauseous, and feel the need to eat everything all at once and to be frank i would be scared to see what’d happen if i don’t have sugar while it happens because its most definitely BAD, every time it’s happened now i just grab an apple juice box and chug that to feel better and it does its job in 5-10 minutes. im a normal weight and have had pots for 8-9 years now, but i know my body and i know when something is off and it feels off. i have blood sugar crashes whenever i eat cereal and then chug water but now its just chugging water regardless thats doing it to me. does this make sense? anybody else ever experience this? google didn’t give me jack shit to work with lol, my mother said she had similar blood sugar issues at my age and turned out to be fine and quite honestly it’s not THAT severe just has happened 4-5 times in the past like 3 weeks so it’s enough to have me questioning why or if it’s just me

Is it just me or do others suffer from what my doctor calls adrenaline dumps. I’m not sure if I’m having adrenaline dump or if I’m having PTSD, depression and anxiety. Basically out of nowhere I start having mood swings where I feel this extreme fear, doom gloom sad hopeless scared feeling panic like overwhelmed and scared that I will never get better and live my old normal life. I notice it does tend to happen around the time when my medication would be too. I’m still try like an error in my medication try to find the right dosage I take guanfacine Ir I had similar problems with metoprolol, but it was much worse. I usually will take my medicine and when I give it a little time, it eventually passes and I feel pretty normal again. I just can’t stand it when I’m living my life which is very limited right now I’m feeling somewhat good at this feeling comes out of nowhere and scares me. I think it’s just the adrenaline Thompson but I’m not sure please share if anybody else experiences.

Hi,

So in the past two months or so I felt like I'm having a mild version of POTS (25-30 bpm difference, tightness in chest) - but had around 60bpm while resting and 90 when standing, and even that wasn't consistent as I sometimes measured 79 while standing, and overall didn't really trouble me, and I guess it's something I always had but maybe now more sensitive to.

Fast forward to this last week or two, where I feel a real tightness in chest almost all the time, like the feeling when you hold your breath and then the second before you release to breath - like that.
I also found myself feeling my heart beats really strong and fast even after a slow walk.
I measured my HR while just standing still, and it was 114-120. Never had this HR while rest standing. Measured my sitting HR and also was 85. So the gap remained, but the initial HR is much higher all of a sudden. In my "official almost tilt table test", from a month ago, which is the first step you do at home measuring 3 times and sent it to the doctor before they schedule a real tilt test, I had max 90bpm, and it was 29bpm more than my resting bpm.

I wonder what can cause this spike all of a sudden. I feel like it all started after a PT session where they messed with my neck and gradually got worse, but I'm not sure this is how POTS works...

Does POTS affect the absorption of supplements and medications?

I am having all pots symptoms hypertension and hypotension feeling after eating food or not eating food and standing for a minute , heart palpitations, blue nails and veins and sweating.I am 28 now, was fit and master in martial art, now reduced to gastric pots patient. I can't remember much because of brain fog I had to diagnose myself with Pots by chest strap monitor because doctor's dont know what is the root of problem. I have severe gastritis with multiple duodenal ulcers, bronchitis and cervical spondylosis and scoliosis by birth I have no idea might be true or not, never have any issues earlier also numbness, clammy and weak feeling in hands and legs. Now bloodwork is okaish with infection, doc says nothing to worry about. You can also find my story on gastritis sub. I feel like dying stepping out of home for work really. But I live in third world country with TOXIC work culture so I work 24x7 from office to home even on weekends and sun is like a holy water to vampire for us Potsies. My travelling and parents took a toll on me plus the new house location the water is black, dirty, the air smells like gutter and no public transport either walk in sun or spend tons of money to travel short distance. everything is expensive despite being far from city where I used to live and go to work now. I think it was the new place that also gave me painful cough and typhoid no hpylori though, endoscopy done after firs time ER visit, 1year of suffering and visiting different specialists from cardiologist to neurosurgeon and second time ICU visit going unconsious in shock, nurses can't find my veins for IV bloating and no visible veins after poking 3 times with some blood loss and no fluids going in my vein all thanks to experienced doctor she resolved it. I used to travel 80-90kms by changing 3 trains and running towards different platforms climbing stairs etc can't even walk without feeling giddiness and anemic. I lost my job due to toxicity and my health despite my hardwork and manager complimenting about my work my company terminated me on performance grounds(I even got good performance letter lol). I have been rushed to hospital for shortness of breath 4 times already in 2yrs, still face it by walking long more than 1km and running for short period. I only have mild mvp in echo which is normal, multiple ct scans an sonography norma. Now I was diagnosed with IBS after having cramps, diarrhea, urination and thirst due to 60k D3 which my doctor says it doesnt stay in the system. I couldn't sleep while for 5 days and had to work because I used up my leaves. My boss harasses me a lot but I don't have any options and my parents are not supportive either can't leave them because I cant pay rent with this low salary and my parents have warned to kick me out if I dont pay them monthly as my medical cc debt wasn't enough. I want to quit and go to europe I have 3yrs work experience and masters in compsci and certified CEH(I know this cert is overrated). One thing I found out the hard way stress and sleep is super important I was in my village and got recovered in 3 months I regain 60% of my strength eating stuff that we grow and walking in fields in foggy winter ofcourse. I had lost my job so recovering was the only goal I had in mind. Now I came back to city got a job then again same symptoms so I asked few doc's they said its the pollution, food, water and stress of this city that will make you sick even more go out asap but almost the whole country has this problem so switching to europe will be better. I am taking edu loan for pursuing further studies abroad can anyone guide please please dm me?

So, I've recently been diagnosed with POTS. My doctor has prescribed me a very low dose of propanolol that I started on Thursday. My resting blood pressure runs very low normally, like '90s over 50s. Sometimes I've seen '80s over 50s, but not often. This was discussed with my cardiologist, because I was concerned about beta blockers lowering my blood pressure. They expressed we should try propanolol at a low dose as it's a beta blocker that has the lowest impact on blood pressure. Anyway, I've been monitoring my blood pressure since Thursday while on the medication. Yesterday I was consistently around 85 over 55, sometimes a little higher. This morning my first blood pressure reading was 74 / 50. This concerns me. Of course it's Sunday and I can't have a conversation with my doctor regarding this. I'm uncertain if I should take my next pill this morning! The original plan was to try the medication this weekend and call the doctor's office Monday to let them know how it went. Not sure what to do this morning. Anyone, been in a similar situation?

I am having all pots symptoms hypertension and hypotension feeling after eating food or not eating food and standing for a minute , heart palpitations, blue nails and veins and sweating.I am 28 now, was fit and master in martial art, now reduced to gastric pots patient. I can't remember much because of brain fog I had to diagnose myself with Pots by chest strap monitor because doctor's dont know what is the root of problem. I have severe gastritis with multiple duodenal ulcers, bronchitis and cervical spondylosis and scoliosis by birth I have no idea might be true or not, never have any issues earlier also numbness, clammy and weak feeling in hands and legs. Now bloodwork is okaish with infection, doc says nothing to worry about. You can also find my story on gastritis sub. I feel like dying stepping out of home for work really. But I live in third world country with TOXIC work culture so I work 24x7 from office to home even on weekends and sun is like a holy water to vampire for us Potsies. My travelling and parents took a toll on me plus the new house location the water is black, dirty, the air smells like gutter and no public transport either walk in sun or spend tons of money to travel short distance. everything is expensive despite being far from city where I used to live and go to work now. I think it was the new place that also gave me painful cough and typhoid no hpylori though, endoscopy done after firs time ER visit, 1year of suffering and visiting different specialists from cardiologist to neurosurgeon and second time ICU visit going unconsious in shock, nurses can't find my veins for IV bloating and no visible veins after poking 3 times with some blood loss and no fluids going in my vein all thanks to experienced doctor she resolved it. I used to travel 80-90kms by changing 3 trains and running towards different platforms climbing stairs etc can't even walk without feeling giddiness and anemic. I lost my job due to toxicity and my health despite my hardwork and manager complimenting about my work my company terminated me on performance grounds(I even got good performance letter lol). I have been rushed to hospital for shortness of breath 4 times already in 2yrs, still face it by walking long more than 1km and running for short period. I only have mild mvp in echo which is normal, multiple ct scans an sonography norma. Now I was diagnosed with IBS after having cramps, diarrhea, urination and thirst due to 60k D3 which my doctor says it doesnt stay in the system. I couldn't sleep while for 5 days and had to work because I used up my leaves. My boss harasses me a lot but I don't have any options and my parents are not supportive either can't leave them because I cant pay rent with this low salary and my parents have warned to kick me out if I dont pay them monthly as my medical cc debt wasn't enough. I want to quit and go to europe I have 3yrs work experience and masters in compsci and certified CEH(I know this cert is overrated). One thing I found out the hard way stress and sleep is super important I was in my village and got recovered in 3 months I regain 60% of my strength eating stuff that we grow and walking in fields in foggy winter ofcourse. I had lost my job so recovering was the only goal I had in mind. Now I came back to city got a job then again same symptoms so I asked few doc's they said its the pollution, food, water and stress of this city that will make you sick even more go out asap but almost the whole country has this problem so switching to europe will be better. I am taking edu loan for pursuing further studies abroad can anyone guide please please dm me?

For those of you taking midodrine, what were your blood pressures BEFORE you were prescribed it? What symptoms has it helped with?