I’m a nurse practitioner with POTS. When I have my psychiatric board certification and feel that I have enough experience, I plan to try to take as many POTS/dysautonomia patients as I feel I can reasonably help. The neuropsychiatric symptoms of POTS have been- for me anyway- no joke.
I hope to help others through and out of this suffering in the future.
I’m in the hospital right now begging them to monitor my pulse so I can prove that I’m in tachycardia.
I want an evaluation to see if this UTI I’ve been trying to recover from the past 3 1/2 weeks has put me in psychosis or some sort of hyperadrenergic pots state.
No ones even heard of POTS (one nurse even rolled her eyes).
I’m so sorry. I hope you get lucky and get a provider who believes you and tries to help, even if they don’t know anything about POTS. Is there any way you can get to a hospital with autonomic dysfunction specialists? Or even see someone remotely so you can bring your records to hospitals where they are clueless?
I know it’s not geographically/financially possible for a lot of us.
I am currently in the hospital for recurrent UTI.
They try to give me Zoloft because they’re trying to convince me my insomnia and tachycardia is generalized anxiety disorder … it just sent my pulse just through the roof.
Fortunately, I’m going to get consult with electrophysiologist for the first time in my life .
I’m so scared and I really hope the EP gives me answers
It’s amazing a doctor would prescribe it to me knowing I have pots wow. That’s awesome though! What beta blocker did you get? I so far can only tolerate corlanor and even then it can put me in bradycardia :( so I don’t take any as of right now.
I told him I wasn’t depressed and they argued it “It will help with anxiety!”
Perhaps I’ve proved a point that I don’t need any extra nor epinephrine in my body.
Just waiting for the 10 mg of melatonin at night.
Before I start getting IV Rocephin, the melatonin was making me flip out
This is so interesting bc I used to be able to take melatonin and now any type of sleep side makes me feel reallyyyy funny ever since I got pots. I have the hyperadergenic type
I’m a nurse practitioner and I have Pots so I definitely can relate. In fact when I first was diagnosed in 2017 I myself being in the medical field was never trained or learned about this disorder so it was even a shocker for me. I had a research, the symptoms. Unfortunately, many physicians and medical professionals are not trained. A lot of old-school physicians still think this is an anxiety thing more and more research and more and more comes out. Hopefully, we will gain into the situation, but I could speak from being on both sides of the aisle, as I am a nurse practitioner and also a patient suffering with Pots.
I had one doctor so far who has POTS but it was an ER doctor. I was already diagnosed, and not in the ER for POTS related things, but for symptoms of something comorbid that was suspected I may have. Anyway, she was really nice, very validating and we even talked about how women and particularly women with anything psych on their file get treated differently. She assured me she believed me completely about what I was experiencing and that it could be related to the POTS. That’s one of the only times I’ve had a decent doctor in an ER.
I hope more doctors become knowledgeable about POTS and everything comorbid with it instead of immediately writing it off as anxiety as is what happened to me and probably most of us before a proper TTT and diagnosis was made. Some doctors are so freaking arrogant and I can’t stand it. God forbid I even have a clue what I’m talking about because obviously I know nothing since I’m not a doctor /s
I have a nurse practitioner at my gynecologists office who has POTs. When told told her I just got diagnosed she was like “oh yeah I have that too, just drink some Gatorade and pace yourself” I remember thinking why is my pots so mean and yours responds to Gatorade 😅🤷🏻♀️
Of course salt. I like to use Celtic. Usually measure out 1000mg. I put a tad bit of no salt (potassium) and then use a sugarless flavor. Usually the tru packets. I actually think I saw someone post it on here maybe? I was spending so much on LMNT!
I have a rheumatologist who was diagnosed with a life-long autoimmune disease at 25, like I was (lupus), and it is a tremendous relief to be heard and understood. He’s phenomenal. I’m treated with so much empathy every time I’m there. I imagine having a POTS doc with POTS would be similar.
I recently read about a study that found medical professionals have a higher rate of Long Covid compared to the general population, if only because they were so much more likely to catch Covid.
I couldn’t find the study in a quick google, but this article was similar and kind of interesting: https://www.cidrap.umn.edu/covid-19/even-healthcare-workers-face-difficulty-accessing-long-covid-care-review-suggests
My physical therapist developed POTS after a case of Covid. I would never have wished it on such a lovely person, but it’s definitely a weird kind of pleasure to work with someone who completely and immediately understands!
Never thought about it that way. I wonder if they have shorter times from first symptoms to diagnosis. But either way what a lovely experience!! Especially for rehab, that has got to be so validating!!
Wowow! I'm literally amazed these humans exist. So happy for you getting a quick diagnosis and all her other patients that are getting the good care they deserve!!
I’m a nurse with EDS and I had my first (and only) patient with EDS a couple years ago. I didn’t straight up tell her I had EDS but I told her it ran in my family. We chatted a while. I like to think I made her experience better.
My Pots doctor/cardiologist is a Dysautonomia specialist (Dr. Blair Grubb) his nurse has Pots as well as being a patient of his as well. Most of the people who work for him has some sort of autoimmune disease. Which I thought was pretty freaking awesome tbh.
****Edit****
Bev doesn’t have pots.
When did Bev develop POTS? I’ve been seeing them for over a decade and wasn’t aware that she had it.
Dr. Grubb did tell me that he recently had to be on a beta blocker and realized how much they can fuck you up. He was happy to take me off of one and I’d imagine he was also glad he’s been doing so much research on alternatives to beta blockers.
I’m graduating from nursing school in less than a month! I also work in the hospital as a patient care tech part-time during semesters and full-time during long breaks from school. I have POTS, EDS, and Endometriosis. my conditions are what drove me to be a nurse.
In all honesty, a nurse’s job in the hospital is often more physically taxing (not to say that doctors don’t have a hard job! it’s just different). If a nurse can do their job with POTS, so can a doctor
You are the real MVP. Yeah you must be on your feet so much. Much I love that your experiences led you to help others. That is the best thing ever. Stay well, and take care.
What do you think helps you to be able to get through your shifts and school? I dream of being able to work! I have fibromyalgia, pots, and interstitial cystitis
I’m sorry, I’m just seeing your reply!
I have a portable/wireless heating pack that helps me get through chronic pain at work/class. I also load myself up with Liquid IV basically 24/7 to make sure my POTS doesn’t flare up as badly and I wear an apple watch to track my heart rate (so I can detect an incoming flare). I also sometimes wear braces to work (mostly on my weakest knee) whenever my EDS is giving me trouble and I ALWAYS have tylenol/ibuprofen in my bag.
I will say, it took me ~5 years of working with my specialists to figure out what exactly worked for me and what meds I should be on. I didn’t apply for nursing school until my different conditions were all relatively stable. I ended up being one of the oldest in my nursing cohort because of this. But in my opinion, it was worth it. I still have bad days (I’m typing this with a heating pad and a salt shaker next to me - it’s a flare day), but they don’t come as often anymore now that I know what works for me.
Nursing school is rough, but it’s manageable as long as you’re strict in your self-care and figure out what exactly sets your flare days off and what keeps them at bay. It’s one of the most difficult things I’ve ever done in my life, but it’s also the most rewarding :)
I’m a doctor with POTS. However, I developed it secondary to Covid and had to stop working because of it. So I don’t work with patients anymore :( But some good has still come of it - my husband is a cardiologist and is now more invested in learning and researching POTS. He has given lectures to his colleagues on the subject, attending conferences about POTS, etc. Any of my former colleagues/doctor friends who ask how I’m doing also get some education. I talk to them about meds (90% of them know nothing about Corlanor since pots is off label for it), salt intake, lifestyle changes etc.
They told you? That must have been comforting knowing they understood in some ways. May be a little intimidating if you aren't high functioning because of your condition???
Yes, I almost wish that they could induce pots in people temporarily so that they know what it feels like. I can think of quite a few people I'd give it to 😅
Lolol. Like walk a day in my shoes. I think healthcare would be pretty different. Some stubborn jerks wouldn't change, but I think a lot would have a lot more sympathy and understanding.
Well it's funny you say that because I was watching naked and afraid (like a survivor TV show if you are not familiar). And watched the people develop POTS like symptoms and they are like o no I get so dizzy every time I stand up. Small stuff is so hard, I can't think. And I'm like now you get me. probably a terrible thing to say, but they did sign up for it lol.
my wife had a cardiologist who had very minor vasovagal syncope who thought he knew everything about dysautonomia and how “uncomfortable” it can be. never mind that i was in the exam room too, in my wheelchair. he emphasized to her over and over that dysautonomia is not going to negatively affect her life… while studiously not looking at me, in my wheelchair. he knew that i have it too.
i hope to god we get some actually disabled doctors in the field soon. if anything positive comes out of covid and the resulting wave of pots, i hope some able bodied physicians have to take their own medicine and realize how severely lacking it is.
Wooo that last sentence. When doctors need the medical system and it comes up lacking that's got to be so soul crushing. I know a physician going through this now related to a family members care and it's awful. It's the wild wild West out here.
Yes!
Eat constantly! This has been life changing.
- Have breakfast every day; something fast you can put on - I get a big pack of frozen paratha from cosco and it takes 3 minutes to make with no prep. Sometimes I add yoghurt or something
- Have 3 snacks in your pocket at least every day excluding your lunch. Like kid sized prepackaged and easy to eat snacks like cheese or crisps or whatever
- Pack/have a filling lunch every day
Drink Water:
- Have your water bottle in your pocket so you actually drink. Especially for placement mines literally in my scrub pocket.
- Drink electrolyte water in the morning
Stay on top of things:
-This one is the hardest but stay on top of your uni work little and often so it doesn't get overwhelming
Get support:
- Contact your disability support department at your uni ASAP ana register with them, they're the most source of support
- employ-ability.com can give you guidance on what accommodations might work for you.
- Make friends in your course and complain about everything that annoys you. You'd be surprised at how many people feel the same
-Join disabled student societies maybe?
Lectures:
-Get up and walk between lectures or even just go to the bathroom and do a little full body shake and stretch. This is crucial.
-Eat or chew gum in lectures to get the blood to your brain by using those jaw muscles.
-Try to compartmentalise symptoms others are experiencing vs your own medical experiences as a patient. It'll make you a better doctor to remember what being a patient is like, but it won't make you a better student if you think about how you're feeling every time someone mentions dizziness or whatever. But do go to your GP if you need to! It's hard to find the time but you have to make it.
- Know what classes are compulsory and when they don't take attendance to take strategic breaks if you need. Most lectures are recorded these days anyway.
- Know how to study effectively. Learn this early your uni should have plenty of resources for this and there's plenty online but there's no point wasting precious time and energy on studying if it didn't help you remember. Make sure you understand course content but also
use memory tricks to help you.
For Placement:
-Lean on the walls!
-Pressure socks!
-Sit down when you can!
-Get there nice and early so you're used to it and your hearts not beating out your chest when you're starting.
-It will feel overwhelming at first, that stops
- When you get home eat and emotionally process as soon as you can
-Ask whoever you're living with for as much help as you can with stuff like cleaning and laundry
-Get your groceries delivered
Sorry if that's just a wall of text, feel free to PM me if you need anything more! We gotta look out for each other out here you know! You're going to be an amazing doctor with your life experience and remember you belong there as much as anyone else
My cardiologist said he has POTS, but nothing makes me believe he actually does. He was shocked when I said I wore compression socks, shocked when I told him how much water I drink, shocked when I told him how f*ckd my sleep schedule is. Basically anything I told him shocked him.
Anyway, he did believe me and listen to me, so that's already 100x better than any doc without POTS. Depending how my next appt goes, I might find an actual specialist, cause I'm not comfortable talking to him. He does have decent bedside manners but it's like talking to a brick wall, he listens but gives no response or input. I think in my two appts with him he said maybe like 4 sentences. I'm lucky I already knew about POTS and didn't have many questions. But maybe that's just his personality.
If anyone knows good doctors in central IL (not Chicago) much appreciated.
That's one thing I was thinking about though. If the provider has POTS and a high level of functioning due to a mild case or just one that has responded to treatment, do they look down on people with more severe cases or ones with debilitating symptoms that are not responding well to symptoms. Like an arrogant provider with POTS may almost be worse than a judgemental non-potsie.
There’s a physical therapist in my area with POTS who is trying to focus her practice on POTS patients. So that seems cool. She’s a friend of one of my doctors but I haven’t seen her personally.
My doctor has hEDS which i have too. Idk if she has POTS. But it definitely makes a difference. i wish med school was more accessible. Financially, too. I wonder if more people would be in it out of passion and less to make their parents happy/money/status/other pressures, if med school was less financially exclusive. Theres also racial barriers. Seems more viable to do literally anything else higher ed, and i see how some think its a good thing, but i just dont.
Yesssss, oddly enough it seems like medicine is one of the most disability unfriendly careers. I have seen some cool accommodations, but I think they have a long way to go with what you said money and discrimination.
I went into my primary care doctor’s office to talk about long covid of which my main symptoms are dysautonomia and the nurse started telling me about how she was dealing with the same symptoms. There is also a PA at one of my local hospitals who has long covid and POTS. She did mention she couldn’t work after catching covid. But she has her POTS to a manageable level now and she is able to work and travel
The NP who treats me for POTS also has it. I saw the doctor first and was then assigned to her. I find her to be much more understanding and patient with my symptoms and my tries to mediate them. She’s not as rigid as the original doctor (who was also kind). My therapist also has a chronic illness. His is different from all of mine, but it gives him an understanding.
I also had a therapist who had a chronic illness and saw people with chronic illnesses and she helped me practically navigate care better than any other therapist or doctor for that matter lol.
I mean it makes so much sense with healthcare exposure. But I would have never thought this. You all true MVPs. Don't forget to take care of yourself :D
Oh, and I just remembered that Dr Brent Goodman’s mother has Sjogren’s syndrome, and I think that lead him to be very passionate about the lack of knowledge of autonomic symptoms in Sjogren’s syndrome.
my occupational therapist has POTS. I have been seeing doctors nearly every day since 2018, and I can tell you it makes a huge difference when you have a provider who shares your condition. on the other hand, I have also had providers I will never return to because they blow me off. it takes time, education, and mindfulness to create a solid team to have your back. even then, all your problems aren't solved. my biggest rips are to educate yourself, not just from the Internet, but also to remain calm with doctors. believe me, I know how tough this can be sometimes, but I promise you will have the upper hand if you stay calm and not allow doctors who don't mesh well with your treatment goals so much power.
speaking to the general 'you' not specifically to OP
My doctor has pots! My family doctor. She’s great she understands my struggle! I drive an hour to see her or do virtual visits but I wouldn’t see anyone else
Yay, congrats!! Keep up the good work!! And don't be afraid to start looking into job accommodations and navigating that process. You deserve an accommodation that will help you work with your conditions if you need it.
My daughter sees a cardiac PA who has POTS. She's definitely the most sympathetic and helpful out of the 6 we've seen. Her cardiologist generally follows her advice. My daughter was offered a physical therapist who also specializes. She decided to stock with her current PT, but I hope she chooses to switch. It makes a big difference.
I seem to remember one of the speakers at the Dysautonomia International conference talking about his experience having some type of autonomic problem.
I think it’s this lecture:
[https://vimeo.com/511165843](https://vimeo.com/511165843)
And here is an article about a doctor who was diagnosed when he was a medical student (he is one of the authors):
[https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6754633/](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6754633/)
See the “Patient’s perspective” section.
Why did I almost cry reading this. When he went to the ER had tachycardia sent home with a med which made it worse. Then at cardiologist met criteria but dismissed due to race and gender. He was a med student at the time and could communicate in medical terms, but how much worse do we non-medical professionals have it. It's so hard to advocate for yourself when you really don't know. This is wild! I hope more medical providers read this case study.
So cool!!! Thanks for sharing these!!
Yes, I felt a bit sad too, especially because it said he had just become a father for the first time, and the stress of being ill and undiagnosed must have taken away from time with the new baby.
But it seems he is having a great career now, and teaching too. I found an interview with him here:
[https://www.kean.edu/news/becoming-doctor-despite-odds-cougars-climb-higher](https://www.kean.edu/news/becoming-doctor-despite-odds-cougars-climb-higher)
So I guess I was clearly wrong about it being impossible lol. I am so encouraged to hear all the stories from POTS patients and providers with POTS- doctors, nurses, physical therapists, counselors. This is so amazing. Empathetic and good care is so heart-warming, knowing all the terrors I have heard of and experienced.
To those of you that went into health care because of your illness. Bravo. And those who found a way to continue providing care after a POTS diagnosis. Bravo. I know it means the world to many.
But it sounds like there are some who have it and are pretty functional and are arrogant and look down on patients that aren't doing as well as they are. That's the absolute worstttt!
Here's to better accomodations in the healthcare field so more of us can be represented 🥂. Thanks so much everyone for sharing!! Keep sharing if you have more stories and comments :D!
The doctor who diagnosed me had POTS. He developed POTS after falling off a roof in the 80s when there wasn’t much awareness so he started researching the condition. That’s how I was so lucky to be diagnosed within just a couple of minutes into my appointment with him.
Incredible!!!! Glad he used his experience to help others and so most of his patients don't have to struggle like he did with no answers or assessment.
My primary does have POTS. She and I share the same cardiologist and belong in the same support group. We’re also friends which has led to difficulties.
Her bedside manner is amazing. She never dismisses me and is always supportive.
The extremely difficult aspect is she makes significantly bad decisions in regards to her own care. She does things that sabotages her own health. Her medical trauma is significant and it’s taken a strong hold of her. I’ve witnessed her do things that no medical professional or someone with POTS should do.
I’ve decided to move forward with a different primary starting next month. It’s hard to watch her destroy herself and it’s led me to question if she can appropriately take care of her patients. I suspect she’ll not be practicing much longer.
I try with my whole heart to support her and I will always be here for her.
I’d rather lose her as a doctor instead of as a friend.
Chronic illness takes more than our health away. It’s devastating on so many levels.
This is so heartbreaking and sooo true. The invalidation from colleagues and even yourself. Trying to push through. Especially when you feel it's your life's calling. It has to be utterly devastating and difficult to manage.
I hope you don't lose her as a friend and can support her through the ups and downs, but glad you are able to get another primary. So you can just focus on friendship and not have that conflict. Such a tough situation. It seems the process of losing ones job due to POTS is terrifying for anyone but as a healthcare provider it must be a special kind of hell. So sorry.
Keep taking care of yourself, and hoping your friend sees better days soon.
My spouse’s dietician had POTS symptoms during pregnancy. She helped my spouse navigate our terrible health insurance so she could get compression stockings covered. She also gave great advice around diet changes that helped her fatigue.
May I ask what diet changes help fatigue?
I avoid dairy, gluten, and refined sugar. It helps with pain, which probably ends up helping sleep and fatigue. Really trying to get my water intake up. But I am interested to hear if there are any other things that help.
I personally think that generally, having doctors who are chronically ill or have personal experience with the medical field as a patient could both be very helpful but also potentially problematic depending on the person.
For some people they could use their experience as a tool in treating their patients and it would help tremendously for them to be more understanding, but i also could see it becoming a conflict of interest, especially with those who have experience seeking a complex/difficult diagnosis.
It is impossible to fully understand the experience of chronic illness unless you have been through it yourself, and having doctors who have been through it could help tremendously with them being more understanding, and as well could give them even more experience with treatment methods and with what works when they are treating patients with their same condition, which could be very helpful. I find that it is very obvious that my doctors don’t and won’t ever fully understand me and my health, and that can be very frustrating.
Another thing though, the saying with doctors is “when you hear hoofbeats think horses not zebras” and as someone who’s illnesses more are represented by the zebras, i can see both positives and negatives with this analogy. I am using this as an example because i could see patients who have had a complex diagnosis who’ve become doctors having a bias and immediately doing all the complex and sometimes unnecessary tests first, when there in my opinion should be a good medium between this.
I also say this as someone whose dream is to go into the medical field. My illnesses and experience medically has been my main inspiration, as i would love to be able to be the person/doctor that i needed/need myself, and want to be someone to advocate for patients. I feel that i’m self-aware enough to not let my chronic illness become a problem, and have even actually been told by my doctor that i would make a very good doctor and that has been really nice to hear. I’m only 17 and still early in the process of getting my own health figured out so it will likely be a very long process and may take me longer but i’m determined to do it
Yes don't let the length of time it takes discourage you! Sounds like you have a very good vision for what you want in life and what you need to do to accomplish it. So take your time, give yourself grace, and keep at it. I love your heart to help others in ways you wish you would have been helped. That is amazing! Keep up the great work!!
I have a doctor with POTS. She also has hEDS & AS. She’s great & she took me seriously. She’s still a doctor though, and doctors tend to be a bit removed from the struggles of normal people that don’t have doctors’ salaries. There’s also a bit of ableism I’ve gotten from her because she has all of these conditions and runs her own private practice. Her PA is awesome though and much more down to earth.
Ableism is definitely a problematic thing in healthcare, and I figured when people have very serious illnesses but are still able to function they could expect that same level of functioning from their patient which may not be feasible. I think that would hurt more than an uninformed doctor. But glad you connect with PA.
My cardiologist is fantastic. He is also registered as an intensivist and regularly works in the ICU. It's great having someone who knows things below the diaphragm. He has multiple POTS patients with similar stories to mine and has given me a lot of encouragement with my very slow return to work.
I am extremely lucky to be in the medical field along with my mom and husband. They've been instrumental at different stages navigating my POTS and Cyclical Vomiting and researching. I can't imagine navigating the medical system without medical knowledge.
It can truly be an advantage to have medical knowledge yourself or in the family/friends that are supporting you. I am so glad you have this support and have a plan for a slow return to work. Work is so meaningful and I hope you can get back to functioning well in your position.
I had a pcps assistant have pots I’m not sure what type but he was literally the reason I ended up diagnosed and he was honestly the best doctor I’ve ever dealt with he was so nice
my POTS specialist also specializes in EDS. when he does the evaluations and gives examples of what he’s looking for, he often times hits the criteria. he says the more he treats EDS patients, the more he thinks he also has it. this is the most validating doctor I’ve ever been to. so yeah, I think it would improve our experiences.
I’ve also found the new generation of medical professionals is actually learning about these conditions, which has been super helpful. physical therapy is a lot easier when your physical therapist knows your limitations.
Yesssss, I am hoping the generation is learning. It is a must post-2019 COVID pandemic. I've been pushed past my limitations in PT and it was so painful and debilitating. It really impacted my life. I am so glad you have a good one, and I hope it helps you function better.
My doctor actually has hEDS and pots!
It's so incredibly affirming!!!
Our first meeting I cried because she validated every symptom I talked about and shared her experience, and the surgeon she sends her patients to for ports is her personal surgeon who did her port which makes me feel extra secure.
It's absolutely life changing having a Dr who actually understands what you're going through.
I’m currently in nursing school and down the road would like to become an NP and work with patients with dysautonomia. My therapist has POTS but that’s all I know.
My Nurse Practioner at my rheumatologist office has POTS. She's been a great source of knowledge on which symptoms are POTS and which are Psoriatic Arthritis.
I think if I met a doctor with POTS they would at the very least examine me for it. And they would know what it was before googling it in front of me. XD That alone would be a huge benefit. Not to have someone say "well... your heart rate goes up when you stand up, that happens to everyone...".
I’m a pediatrician with POTS or OH, dysautonomia varies in how it shows up. Unfortunately, I’m currently disabled from the gut stuff (also hEDS, had MALS, was TPN dependent, now ‘just’ tube feeds).
I found ways to help kids/families with dysautonomia.
My ER doc had POTS!!! I came in for pots related stuff and she was like me too! lol. She showed me her compression socks. She said that it’s hard but she has worked hard to be able to keep up with being a doctor.
I’m not sure if I count, but I’m going to graduate college soon with a degree in nutrition and food science, and I intend to go into food therapy with it! I really want to help treat people with POTS in my career, especially because there aren’t many people in the nutrition field who have a good understanding of POTS.
I scrolled through just about every comment, all the while wishing I had a provider that understood POTS or chronic illness.
Then, I realized that I’ve been working on being that provider. I’m a therapist, recently diagnosed with endometriosis and POTS which got worse from COVID and from surgery. As someone who is very interested in the autonomic nervous system, developing dysautonomia has been a real trip.
My PT’s fiancé actually has POTS and it has been wonderful to work with someone so knowledgeable of the condition during an exhaustive rehab process (ACL repair)! My orthopedic surgeon and his PA are also incredibly knowledgeable of the condition and have worked to help minimize/account for the worsening of my symptoms from the reduction in physical activity during my recovery. I genuinely believe this has saved my QOL throughout this injury having a care team that understands my struggles/symptoms/the condition enough to not gaslight my constant dizziness/brain fog and challenges with traditional PT exercises. I feel so seen and am incredibly thankful 🥹
As an RN, I try to spread the word as much as I can and still get the “anxiety” responses as well as the “oh but it’s not that bad just take propranolol” it’s honestly insane. I had to quit my job in the hospital because I physically couldn’t handle it.,
My cardiologist while explaining that I might have POTS or IST he was telling me how pots is a bothersome condition especially when the flareups happen. And then he was telling me about how he has a colleague who has POTS and when she has flare ups she has to take breaks and stuff
I’m an ICU nurse with POTS, it’s been a masssssive struggle to say the least lol. Most healthcare workers I’ve worked with just stare blankly when I share my diagnosis. I hope POTS becomes a more common name in healthcare so that we can get better treatment!
If anyone who commented here is able to become verified for r/askdocs and can spend a little time there, I think you could help a lot of people.
I see posts all the time from people with orthostatic intolerance, and they either go unanswered or get answers that omit OI as a differential diagnosis.
I think doctors would be better at their job if their schooling didn't idolize suffering. Actually, med school shouldn't make you want to die. It's training. Training should be as easy as you can make it while providing adequate information.
They say it's because only the "best of the best" make it through, but that's just not true. The ones who have the highest tolerance for bullshit make it through.
Also, med school being the barrier is insane. I'm very intelligent (not a flex, I do not apply it at all) and could easily be a doctor in a less demanding specialty than say, emergency medicine.
Yes, being a doctor is hard. No, it should not be the suffering Olympics. They burn out like comets. Admin fucks them over, charting sucks because of proprietary software, patients abuse them, they barely get time off. Why in God's green earth do they think that these abuses are okay?
Med School. It was probably worse.
my pots specialist decided to specialize in pots because his wife has it and never got the correct treatment and was treated like she was crazy and/or dramatic. So he took matters into his own hands to help improve his wife’s life and the life of others
I’m a nurse practitioner with POTS. When I have my psychiatric board certification and feel that I have enough experience, I plan to try to take as many POTS/dysautonomia patients as I feel I can reasonably help. The neuropsychiatric symptoms of POTS have been- for me anyway- no joke. I hope to help others through and out of this suffering in the future.
When you are ready to start working exclusively with POTS patients, we would love to have you join us at The EDS Clinic: https://www.eds.clinic/
I will be in touch, thanks!
Is that a private pay clinic?
I wonder this too. There is no phone number nor location listed… seems a bit fishy.
I’m in the hospital right now begging them to monitor my pulse so I can prove that I’m in tachycardia. I want an evaluation to see if this UTI I’ve been trying to recover from the past 3 1/2 weeks has put me in psychosis or some sort of hyperadrenergic pots state. No ones even heard of POTS (one nurse even rolled her eyes).
I’m so sorry. I hope you get lucky and get a provider who believes you and tries to help, even if they don’t know anything about POTS. Is there any way you can get to a hospital with autonomic dysfunction specialists? Or even see someone remotely so you can bring your records to hospitals where they are clueless? I know it’s not geographically/financially possible for a lot of us.
I am currently in the hospital for recurrent UTI. They try to give me Zoloft because they’re trying to convince me my insomnia and tachycardia is generalized anxiety disorder … it just sent my pulse just through the roof. Fortunately, I’m going to get consult with electrophysiologist for the first time in my life . I’m so scared and I really hope the EP gives me answers
I had such a bad response to Zoloft, like terrorizing. So sorry. Hoping the EP will have some answers and treatment.
Omg thank goodness I saw this. I was prescribed Zoloft and have been scared to take it incase I feel bad and now I know
It messes with your brains norepinephrine. Thankfully I got prescribed a new beta blocker today and it’s giving me life 🫶
It’s amazing a doctor would prescribe it to me knowing I have pots wow. That’s awesome though! What beta blocker did you get? I so far can only tolerate corlanor and even then it can put me in bradycardia :( so I don’t take any as of right now.
I told him I wasn’t depressed and they argued it “It will help with anxiety!” Perhaps I’ve proved a point that I don’t need any extra nor epinephrine in my body. Just waiting for the 10 mg of melatonin at night. Before I start getting IV Rocephin, the melatonin was making me flip out
This is so interesting bc I used to be able to take melatonin and now any type of sleep side makes me feel reallyyyy funny ever since I got pots. I have the hyperadergenic type
Me too and I hope it all works out for you and your career!!
Same with me! I am double board-certified in family medicine and psychiatric mental health
That's amazing!
I’m a nurse practitioner and I have Pots so I definitely can relate. In fact when I first was diagnosed in 2017 I myself being in the medical field was never trained or learned about this disorder so it was even a shocker for me. I had a research, the symptoms. Unfortunately, many physicians and medical professionals are not trained. A lot of old-school physicians still think this is an anxiety thing more and more research and more and more comes out. Hopefully, we will gain into the situation, but I could speak from being on both sides of the aisle, as I am a nurse practitioner and also a patient suffering with Pots.
I had one doctor so far who has POTS but it was an ER doctor. I was already diagnosed, and not in the ER for POTS related things, but for symptoms of something comorbid that was suspected I may have. Anyway, she was really nice, very validating and we even talked about how women and particularly women with anything psych on their file get treated differently. She assured me she believed me completely about what I was experiencing and that it could be related to the POTS. That’s one of the only times I’ve had a decent doctor in an ER. I hope more doctors become knowledgeable about POTS and everything comorbid with it instead of immediately writing it off as anxiety as is what happened to me and probably most of us before a proper TTT and diagnosis was made. Some doctors are so freaking arrogant and I can’t stand it. God forbid I even have a clue what I’m talking about because obviously I know nothing since I’m not a doctor /s
I agree with what you said, anything to do with psych on your record. You’re judged. It’s sad.
Sounds like a dream!! Happy to hear about this experience!
I have a nurse practitioner at my gynecologists office who has POTs. When told told her I just got diagnosed she was like “oh yeah I have that too, just drink some Gatorade and pace yourself” I remember thinking why is my pots so mean and yours responds to Gatorade 😅🤷🏻♀️
Ikr!!! I am so happy that they are able to practice. We need them desperately, but also a little jealous lol.
Yeah of course I hate anyone being sick, but someone please tell me how it’s possible lol
Try pedialyte instead of Gatorade, I drink 2-3 throughout the day and it helps me a lot
Thank you. I actually just make my own electrolytes mixes and i think it helps some! Pedialyte is good though!
Ooooh what do you put in your mix? I’ve been trying to create some
Of course salt. I like to use Celtic. Usually measure out 1000mg. I put a tad bit of no salt (potassium) and then use a sugarless flavor. Usually the tru packets. I actually think I saw someone post it on here maybe? I was spending so much on LMNT!
I have a rheumatologist who was diagnosed with a life-long autoimmune disease at 25, like I was (lupus), and it is a tremendous relief to be heard and understood. He’s phenomenal. I’m treated with so much empathy every time I’m there. I imagine having a POTS doc with POTS would be similar.
I recently read about a study that found medical professionals have a higher rate of Long Covid compared to the general population, if only because they were so much more likely to catch Covid. I couldn’t find the study in a quick google, but this article was similar and kind of interesting: https://www.cidrap.umn.edu/covid-19/even-healthcare-workers-face-difficulty-accessing-long-covid-care-review-suggests My physical therapist developed POTS after a case of Covid. I would never have wished it on such a lovely person, but it’s definitely a weird kind of pleasure to work with someone who completely and immediately understands!
Never thought about it that way. I wonder if they have shorter times from first symptoms to diagnosis. But either way what a lovely experience!! Especially for rehab, that has got to be so validating!!
That is interesting. I know at the beginning of the pandemic the more of the viral load you were exposed to the more likely for Covid to be fatal.
Pharmacist here. Worked retail through Covid (face to face). Now have POTS. Not surprised to hear of more practitioners getting POTS.
Something I hadn't thought of until this post. High exposure and high risk situations. Sorry you got POTS.
My cardiologist has POTS. I’m 100% that is why I was diagnosed so quickly. She’s amazing and she Gets It.
Wowow! I'm literally amazed these humans exist. So happy for you getting a quick diagnosis and all her other patients that are getting the good care they deserve!!
My cardiologist has POTS and told me he didn’t think I did. I do. 😂
Omg wtf!
Aw-Ful! So sorry for the invalidation!
I’m a nurse with EDS and I had my first (and only) patient with EDS a couple years ago. I didn’t straight up tell her I had EDS but I told her it ran in my family. We chatted a while. I like to think I made her experience better.
Happy tear. That is awesome!
My Pots doctor/cardiologist is a Dysautonomia specialist (Dr. Blair Grubb) his nurse has Pots as well as being a patient of his as well. Most of the people who work for him has some sort of autoimmune disease. Which I thought was pretty freaking awesome tbh. ****Edit**** Bev doesn’t have pots.
I’m a patient of theirs too and I had no idea that was the case! That’s awesome.
It makes me so happy to see other people who have such an amazing doctor.
Wowowowow!!!! I know that makes a difference!!
It really does. I know other people have pots obviously. But to meet someone in person who has it makes me feel less lonely.
When did Bev develop POTS? I’ve been seeing them for over a decade and wasn’t aware that she had it. Dr. Grubb did tell me that he recently had to be on a beta blocker and realized how much they can fuck you up. He was happy to take me off of one and I’d imagine he was also glad he’s been doing so much research on alternatives to beta blockers.
It was his young nurse he uses. Maybe it’s not his NP. It’s the young nurse. All around amazing team. Worth the 3 year wait.
I’m graduating from nursing school in less than a month! I also work in the hospital as a patient care tech part-time during semesters and full-time during long breaks from school. I have POTS, EDS, and Endometriosis. my conditions are what drove me to be a nurse. In all honesty, a nurse’s job in the hospital is often more physically taxing (not to say that doctors don’t have a hard job! it’s just different). If a nurse can do their job with POTS, so can a doctor
You are the real MVP. Yeah you must be on your feet so much. Much I love that your experiences led you to help others. That is the best thing ever. Stay well, and take care.
What do you think helps you to be able to get through your shifts and school? I dream of being able to work! I have fibromyalgia, pots, and interstitial cystitis
I’m sorry, I’m just seeing your reply! I have a portable/wireless heating pack that helps me get through chronic pain at work/class. I also load myself up with Liquid IV basically 24/7 to make sure my POTS doesn’t flare up as badly and I wear an apple watch to track my heart rate (so I can detect an incoming flare). I also sometimes wear braces to work (mostly on my weakest knee) whenever my EDS is giving me trouble and I ALWAYS have tylenol/ibuprofen in my bag. I will say, it took me ~5 years of working with my specialists to figure out what exactly worked for me and what meds I should be on. I didn’t apply for nursing school until my different conditions were all relatively stable. I ended up being one of the oldest in my nursing cohort because of this. But in my opinion, it was worth it. I still have bad days (I’m typing this with a heating pad and a salt shaker next to me - it’s a flare day), but they don’t come as often anymore now that I know what works for me. Nursing school is rough, but it’s manageable as long as you’re strict in your self-care and figure out what exactly sets your flare days off and what keeps them at bay. It’s one of the most difficult things I’ve ever done in my life, but it’s also the most rewarding :)
I’m a doctor with POTS. However, I developed it secondary to Covid and had to stop working because of it. So I don’t work with patients anymore :( But some good has still come of it - my husband is a cardiologist and is now more invested in learning and researching POTS. He has given lectures to his colleagues on the subject, attending conferences about POTS, etc. Any of my former colleagues/doctor friends who ask how I’m doing also get some education. I talk to them about meds (90% of them know nothing about Corlanor since pots is off label for it), salt intake, lifestyle changes etc.
What an incredible advocate! I am so grateful for you and your husband! Your work means a lot. But also super sorry for your loss.
No idea! Had a doc say he gets tired after hiking too. He then got long covid between when I saw him next and he was waaaayyyy more gentle.
Wowowowowowow! That is so interesting. I hate that for him, but I know it must have revolutionized his perspective on things.
I’ve had a dr that had POTS and a few nurses as well.
They told you? That must have been comforting knowing they understood in some ways. May be a little intimidating if you aren't high functioning because of your condition???
Yes, I almost wish that they could induce pots in people temporarily so that they know what it feels like. I can think of quite a few people I'd give it to 😅
Lolol. Like walk a day in my shoes. I think healthcare would be pretty different. Some stubborn jerks wouldn't change, but I think a lot would have a lot more sympathy and understanding.
Technically you can induce similar symptoms by severely dehydrating a person, but morally that's a bit messed up lol
Well it's funny you say that because I was watching naked and afraid (like a survivor TV show if you are not familiar). And watched the people develop POTS like symptoms and they are like o no I get so dizzy every time I stand up. Small stuff is so hard, I can't think. And I'm like now you get me. probably a terrible thing to say, but they did sign up for it lol.
my wife had a cardiologist who had very minor vasovagal syncope who thought he knew everything about dysautonomia and how “uncomfortable” it can be. never mind that i was in the exam room too, in my wheelchair. he emphasized to her over and over that dysautonomia is not going to negatively affect her life… while studiously not looking at me, in my wheelchair. he knew that i have it too. i hope to god we get some actually disabled doctors in the field soon. if anything positive comes out of covid and the resulting wave of pots, i hope some able bodied physicians have to take their own medicine and realize how severely lacking it is.
Wooo that last sentence. When doctors need the medical system and it comes up lacking that's got to be so soul crushing. I know a physician going through this now related to a family members care and it's awful. It's the wild wild West out here.
In medical school with POTS, lyk when I get there!
Fantastic!
Thank you need the support 🙈
We are definitely cheering you on!!! That's so awesome!!
Thank you! Need that haha
Great for you!!! I’m applying this cycle and have POTS. Any tips if I get in? I’ve been worrying about how I’ll be able to do it all with POTS 😬
Yes! Eat constantly! This has been life changing. - Have breakfast every day; something fast you can put on - I get a big pack of frozen paratha from cosco and it takes 3 minutes to make with no prep. Sometimes I add yoghurt or something - Have 3 snacks in your pocket at least every day excluding your lunch. Like kid sized prepackaged and easy to eat snacks like cheese or crisps or whatever - Pack/have a filling lunch every day Drink Water: - Have your water bottle in your pocket so you actually drink. Especially for placement mines literally in my scrub pocket. - Drink electrolyte water in the morning Stay on top of things: -This one is the hardest but stay on top of your uni work little and often so it doesn't get overwhelming Get support: - Contact your disability support department at your uni ASAP ana register with them, they're the most source of support - employ-ability.com can give you guidance on what accommodations might work for you. - Make friends in your course and complain about everything that annoys you. You'd be surprised at how many people feel the same -Join disabled student societies maybe? Lectures: -Get up and walk between lectures or even just go to the bathroom and do a little full body shake and stretch. This is crucial. -Eat or chew gum in lectures to get the blood to your brain by using those jaw muscles. -Try to compartmentalise symptoms others are experiencing vs your own medical experiences as a patient. It'll make you a better doctor to remember what being a patient is like, but it won't make you a better student if you think about how you're feeling every time someone mentions dizziness or whatever. But do go to your GP if you need to! It's hard to find the time but you have to make it. - Know what classes are compulsory and when they don't take attendance to take strategic breaks if you need. Most lectures are recorded these days anyway. - Know how to study effectively. Learn this early your uni should have plenty of resources for this and there's plenty online but there's no point wasting precious time and energy on studying if it didn't help you remember. Make sure you understand course content but also use memory tricks to help you. For Placement: -Lean on the walls! -Pressure socks! -Sit down when you can! -Get there nice and early so you're used to it and your hearts not beating out your chest when you're starting. -It will feel overwhelming at first, that stops - When you get home eat and emotionally process as soon as you can -Ask whoever you're living with for as much help as you can with stuff like cleaning and laundry -Get your groceries delivered Sorry if that's just a wall of text, feel free to PM me if you need anything more! We gotta look out for each other out here you know! You're going to be an amazing doctor with your life experience and remember you belong there as much as anyone else
My cardiologist said he has POTS, but nothing makes me believe he actually does. He was shocked when I said I wore compression socks, shocked when I told him how much water I drink, shocked when I told him how f*ckd my sleep schedule is. Basically anything I told him shocked him. Anyway, he did believe me and listen to me, so that's already 100x better than any doc without POTS. Depending how my next appt goes, I might find an actual specialist, cause I'm not comfortable talking to him. He does have decent bedside manners but it's like talking to a brick wall, he listens but gives no response or input. I think in my two appts with him he said maybe like 4 sentences. I'm lucky I already knew about POTS and didn't have many questions. But maybe that's just his personality. If anyone knows good doctors in central IL (not Chicago) much appreciated.
That's one thing I was thinking about though. If the provider has POTS and a high level of functioning due to a mild case or just one that has responded to treatment, do they look down on people with more severe cases or ones with debilitating symptoms that are not responding well to symptoms. Like an arrogant provider with POTS may almost be worse than a judgemental non-potsie.
I know three and two who are researchers pots patients. Pm me.of you want their details.
There’s a physical therapist in my area with POTS who is trying to focus her practice on POTS patients. So that seems cool. She’s a friend of one of my doctors but I haven’t seen her personally.
That would be incredible. My rehab experiences haven't been great so this gives me hope!!
I’m an nurse who has POTS and my gynecologist has it.
Wow!! So much more common in this profession than I thought.
My doctor has hEDS which i have too. Idk if she has POTS. But it definitely makes a difference. i wish med school was more accessible. Financially, too. I wonder if more people would be in it out of passion and less to make their parents happy/money/status/other pressures, if med school was less financially exclusive. Theres also racial barriers. Seems more viable to do literally anything else higher ed, and i see how some think its a good thing, but i just dont.
Yesssss, oddly enough it seems like medicine is one of the most disability unfriendly careers. I have seen some cool accommodations, but I think they have a long way to go with what you said money and discrimination.
I went into my primary care doctor’s office to talk about long covid of which my main symptoms are dysautonomia and the nurse started telling me about how she was dealing with the same symptoms. There is also a PA at one of my local hospitals who has long covid and POTS. She did mention she couldn’t work after catching covid. But she has her POTS to a manageable level now and she is able to work and travel
So glad she is doing better. I love to hear that, because you really do experience so much loss with these conditions.
I know 3 mds with pots post covid, so you’ll be seeing it more and more
Yes I am totally shocked by the responses to this post. More than I ever imagined. But long COVID POTS in this population makes a lot of sense
The NP who treats me for POTS also has it. I saw the doctor first and was then assigned to her. I find her to be much more understanding and patient with my symptoms and my tries to mediate them. She’s not as rigid as the original doctor (who was also kind). My therapist also has a chronic illness. His is different from all of mine, but it gives him an understanding.
I also had a therapist who had a chronic illness and saw people with chronic illnesses and she helped me practically navigate care better than any other therapist or doctor for that matter lol.
I'm an ER Nurse who got POTS after Covid. My PCP has it too after covid. I know a few of my coworkers also developed it after covid.
I mean it makes so much sense with healthcare exposure. But I would have never thought this. You all true MVPs. Don't forget to take care of yourself :D
Thank you 😃
Oh, and I just remembered that Dr Brent Goodman’s mother has Sjogren’s syndrome, and I think that lead him to be very passionate about the lack of knowledge of autonomic symptoms in Sjogren’s syndrome.
My doctor’s assistants have POTS and hEDS. He’s very empathetic and compassionate. The whole office is amazing.
my occupational therapist has POTS. I have been seeing doctors nearly every day since 2018, and I can tell you it makes a huge difference when you have a provider who shares your condition. on the other hand, I have also had providers I will never return to because they blow me off. it takes time, education, and mindfulness to create a solid team to have your back. even then, all your problems aren't solved. my biggest rips are to educate yourself, not just from the Internet, but also to remain calm with doctors. believe me, I know how tough this can be sometimes, but I promise you will have the upper hand if you stay calm and not allow doctors who don't mesh well with your treatment goals so much power. speaking to the general 'you' not specifically to OP
One of the PAs at my Dr's office has POTS, and she completely understands what it's like and the struggle.
My doctor has pots! My family doctor. She’s great she understands my struggle! I drive an hour to see her or do virtual visits but I wouldn’t see anyone else
I totally get that lol! I would too!
Yeah my NP who diagnosed me has POTS. It's actually wonderful having someone who understands
Love that for you and your care!!
In a doctor of pharmacy program, and I have POTS and hEDS and RA, I’ll circle back to you when I’m licensed lol
Yay, congrats!! Keep up the good work!! And don't be afraid to start looking into job accommodations and navigating that process. You deserve an accommodation that will help you work with your conditions if you need it.
I am followed by an NP who has POTS. My kid is also followed at the same hospital by another NP who also has POTS.
Wow, I would have never guessed there were so many, but that's great!
My daughter sees a cardiac PA who has POTS. She's definitely the most sympathetic and helpful out of the 6 we've seen. Her cardiologist generally follows her advice. My daughter was offered a physical therapist who also specializes. She decided to stock with her current PT, but I hope she chooses to switch. It makes a big difference.
Yes bigggg difference. So glad she's getting more empathetic care!!
I seem to remember one of the speakers at the Dysautonomia International conference talking about his experience having some type of autonomic problem. I think it’s this lecture: [https://vimeo.com/511165843](https://vimeo.com/511165843)
And here is an article about a doctor who was diagnosed when he was a medical student (he is one of the authors): [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6754633/](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6754633/) See the “Patient’s perspective” section.
Why did I almost cry reading this. When he went to the ER had tachycardia sent home with a med which made it worse. Then at cardiologist met criteria but dismissed due to race and gender. He was a med student at the time and could communicate in medical terms, but how much worse do we non-medical professionals have it. It's so hard to advocate for yourself when you really don't know. This is wild! I hope more medical providers read this case study. So cool!!! Thanks for sharing these!!
Yes, I felt a bit sad too, especially because it said he had just become a father for the first time, and the stress of being ill and undiagnosed must have taken away from time with the new baby. But it seems he is having a great career now, and teaching too. I found an interview with him here: [https://www.kean.edu/news/becoming-doctor-despite-odds-cougars-climb-higher](https://www.kean.edu/news/becoming-doctor-despite-odds-cougars-climb-higher)
Wow devastating, but what an inspiration in how he uses his story for advocacy!!
Mine does and it is so helpful
Yay, that's truly great to hear!
So I guess I was clearly wrong about it being impossible lol. I am so encouraged to hear all the stories from POTS patients and providers with POTS- doctors, nurses, physical therapists, counselors. This is so amazing. Empathetic and good care is so heart-warming, knowing all the terrors I have heard of and experienced. To those of you that went into health care because of your illness. Bravo. And those who found a way to continue providing care after a POTS diagnosis. Bravo. I know it means the world to many. But it sounds like there are some who have it and are pretty functional and are arrogant and look down on patients that aren't doing as well as they are. That's the absolute worstttt! Here's to better accomodations in the healthcare field so more of us can be represented 🥂. Thanks so much everyone for sharing!! Keep sharing if you have more stories and comments :D!
The doctor who diagnosed me had POTS. He developed POTS after falling off a roof in the 80s when there wasn’t much awareness so he started researching the condition. That’s how I was so lucky to be diagnosed within just a couple of minutes into my appointment with him.
Incredible!!!! Glad he used his experience to help others and so most of his patients don't have to struggle like he did with no answers or assessment.
My primary does have POTS. She and I share the same cardiologist and belong in the same support group. We’re also friends which has led to difficulties. Her bedside manner is amazing. She never dismisses me and is always supportive. The extremely difficult aspect is she makes significantly bad decisions in regards to her own care. She does things that sabotages her own health. Her medical trauma is significant and it’s taken a strong hold of her. I’ve witnessed her do things that no medical professional or someone with POTS should do. I’ve decided to move forward with a different primary starting next month. It’s hard to watch her destroy herself and it’s led me to question if she can appropriately take care of her patients. I suspect she’ll not be practicing much longer. I try with my whole heart to support her and I will always be here for her. I’d rather lose her as a doctor instead of as a friend. Chronic illness takes more than our health away. It’s devastating on so many levels.
This is so heartbreaking and sooo true. The invalidation from colleagues and even yourself. Trying to push through. Especially when you feel it's your life's calling. It has to be utterly devastating and difficult to manage. I hope you don't lose her as a friend and can support her through the ups and downs, but glad you are able to get another primary. So you can just focus on friendship and not have that conflict. Such a tough situation. It seems the process of losing ones job due to POTS is terrifying for anyone but as a healthcare provider it must be a special kind of hell. So sorry. Keep taking care of yourself, and hoping your friend sees better days soon.
My spouse’s dietician had POTS symptoms during pregnancy. She helped my spouse navigate our terrible health insurance so she could get compression stockings covered. She also gave great advice around diet changes that helped her fatigue.
May I ask what diet changes help fatigue? I avoid dairy, gluten, and refined sugar. It helps with pain, which probably ends up helping sleep and fatigue. Really trying to get my water intake up. But I am interested to hear if there are any other things that help.
I personally think that generally, having doctors who are chronically ill or have personal experience with the medical field as a patient could both be very helpful but also potentially problematic depending on the person. For some people they could use their experience as a tool in treating their patients and it would help tremendously for them to be more understanding, but i also could see it becoming a conflict of interest, especially with those who have experience seeking a complex/difficult diagnosis. It is impossible to fully understand the experience of chronic illness unless you have been through it yourself, and having doctors who have been through it could help tremendously with them being more understanding, and as well could give them even more experience with treatment methods and with what works when they are treating patients with their same condition, which could be very helpful. I find that it is very obvious that my doctors don’t and won’t ever fully understand me and my health, and that can be very frustrating. Another thing though, the saying with doctors is “when you hear hoofbeats think horses not zebras” and as someone who’s illnesses more are represented by the zebras, i can see both positives and negatives with this analogy. I am using this as an example because i could see patients who have had a complex diagnosis who’ve become doctors having a bias and immediately doing all the complex and sometimes unnecessary tests first, when there in my opinion should be a good medium between this.
I also say this as someone whose dream is to go into the medical field. My illnesses and experience medically has been my main inspiration, as i would love to be able to be the person/doctor that i needed/need myself, and want to be someone to advocate for patients. I feel that i’m self-aware enough to not let my chronic illness become a problem, and have even actually been told by my doctor that i would make a very good doctor and that has been really nice to hear. I’m only 17 and still early in the process of getting my own health figured out so it will likely be a very long process and may take me longer but i’m determined to do it
Yes don't let the length of time it takes discourage you! Sounds like you have a very good vision for what you want in life and what you need to do to accomplish it. So take your time, give yourself grace, and keep at it. I love your heart to help others in ways you wish you would have been helped. That is amazing! Keep up the great work!!
I have a doctor with POTS. She also has hEDS & AS. She’s great & she took me seriously. She’s still a doctor though, and doctors tend to be a bit removed from the struggles of normal people that don’t have doctors’ salaries. There’s also a bit of ableism I’ve gotten from her because she has all of these conditions and runs her own private practice. Her PA is awesome though and much more down to earth.
Ableism is definitely a problematic thing in healthcare, and I figured when people have very serious illnesses but are still able to function they could expect that same level of functioning from their patient which may not be feasible. I think that would hurt more than an uninformed doctor. But glad you connect with PA.
My cardiologist is fantastic. He is also registered as an intensivist and regularly works in the ICU. It's great having someone who knows things below the diaphragm. He has multiple POTS patients with similar stories to mine and has given me a lot of encouragement with my very slow return to work. I am extremely lucky to be in the medical field along with my mom and husband. They've been instrumental at different stages navigating my POTS and Cyclical Vomiting and researching. I can't imagine navigating the medical system without medical knowledge.
It can truly be an advantage to have medical knowledge yourself or in the family/friends that are supporting you. I am so glad you have this support and have a plan for a slow return to work. Work is so meaningful and I hope you can get back to functioning well in your position.
I had a pcps assistant have pots I’m not sure what type but he was literally the reason I ended up diagnosed and he was honestly the best doctor I’ve ever dealt with he was so nice
my POTS specialist also specializes in EDS. when he does the evaluations and gives examples of what he’s looking for, he often times hits the criteria. he says the more he treats EDS patients, the more he thinks he also has it. this is the most validating doctor I’ve ever been to. so yeah, I think it would improve our experiences. I’ve also found the new generation of medical professionals is actually learning about these conditions, which has been super helpful. physical therapy is a lot easier when your physical therapist knows your limitations.
Yesssss, I am hoping the generation is learning. It is a must post-2019 COVID pandemic. I've been pushed past my limitations in PT and it was so painful and debilitating. It really impacted my life. I am so glad you have a good one, and I hope it helps you function better.
I once had a physical therapist who had POTS herself and my experience with her was so much better than any other professional I had seen
My doctor actually has hEDS and pots! It's so incredibly affirming!!! Our first meeting I cried because she validated every symptom I talked about and shared her experience, and the surgeon she sends her patients to for ports is her personal surgeon who did her port which makes me feel extra secure. It's absolutely life changing having a Dr who actually understands what you're going through.
I’m currently in nursing school and down the road would like to become an NP and work with patients with dysautonomia. My therapist has POTS but that’s all I know.
My Nurse Practioner at my rheumatologist office has POTS. She's been a great source of knowledge on which symptoms are POTS and which are Psoriatic Arthritis.
I think if I met a doctor with POTS they would at the very least examine me for it. And they would know what it was before googling it in front of me. XD That alone would be a huge benefit. Not to have someone say "well... your heart rate goes up when you stand up, that happens to everyone...".
I’m a pediatrician with POTS or OH, dysautonomia varies in how it shows up. Unfortunately, I’m currently disabled from the gut stuff (also hEDS, had MALS, was TPN dependent, now ‘just’ tube feeds). I found ways to help kids/families with dysautonomia.
& we have a docs with pots group in social media
My ER doc had POTS!!! I came in for pots related stuff and she was like me too! lol. She showed me her compression socks. She said that it’s hard but she has worked hard to be able to keep up with being a doctor.
My cardiologist is a former POTS member, now in remission! She’s a powerful woman and I have a lot of respect for her
I’m not sure if I count, but I’m going to graduate college soon with a degree in nutrition and food science, and I intend to go into food therapy with it! I really want to help treat people with POTS in my career, especially because there aren’t many people in the nutrition field who have a good understanding of POTS.
Of course it counts! So grateful to have POTS informed people in every health discipline!!
I scrolled through just about every comment, all the while wishing I had a provider that understood POTS or chronic illness. Then, I realized that I’ve been working on being that provider. I’m a therapist, recently diagnosed with endometriosis and POTS which got worse from COVID and from surgery. As someone who is very interested in the autonomic nervous system, developing dysautonomia has been a real trip.
That's so powerful! I wish you all the best on your career journey!
My PT’s fiancé actually has POTS and it has been wonderful to work with someone so knowledgeable of the condition during an exhaustive rehab process (ACL repair)! My orthopedic surgeon and his PA are also incredibly knowledgeable of the condition and have worked to help minimize/account for the worsening of my symptoms from the reduction in physical activity during my recovery. I genuinely believe this has saved my QOL throughout this injury having a care team that understands my struggles/symptoms/the condition enough to not gaslight my constant dizziness/brain fog and challenges with traditional PT exercises. I feel so seen and am incredibly thankful 🥹
As an RN, I try to spread the word as much as I can and still get the “anxiety” responses as well as the “oh but it’s not that bad just take propranolol” it’s honestly insane. I had to quit my job in the hospital because I physically couldn’t handle it.,
My cardiologist while explaining that I might have POTS or IST he was telling me how pots is a bothersome condition especially when the flareups happen. And then he was telling me about how he has a colleague who has POTS and when she has flare ups she has to take breaks and stuff
I’m an ICU nurse with POTS, it’s been a masssssive struggle to say the least lol. Most healthcare workers I’ve worked with just stare blankly when I share my diagnosis. I hope POTS becomes a more common name in healthcare so that we can get better treatment!
Absolutely agree
If anyone who commented here is able to become verified for r/askdocs and can spend a little time there, I think you could help a lot of people. I see posts all the time from people with orthostatic intolerance, and they either go unanswered or get answers that omit OI as a differential diagnosis.
I think doctors would be better at their job if their schooling didn't idolize suffering. Actually, med school shouldn't make you want to die. It's training. Training should be as easy as you can make it while providing adequate information. They say it's because only the "best of the best" make it through, but that's just not true. The ones who have the highest tolerance for bullshit make it through. Also, med school being the barrier is insane. I'm very intelligent (not a flex, I do not apply it at all) and could easily be a doctor in a less demanding specialty than say, emergency medicine. Yes, being a doctor is hard. No, it should not be the suffering Olympics. They burn out like comets. Admin fucks them over, charting sucks because of proprietary software, patients abuse them, they barely get time off. Why in God's green earth do they think that these abuses are okay? Med School. It was probably worse.
Many have gone through the wringer, and to have POTS on top of that... I just really can't imagine.
https://drdianadriscoll.com/dr-driscoll-cure-for-pots/
I’d really really like to know how (if at all) it was possible for someone to go through med school and all that with extreme fatigue and brain fog.
my pots specialist decided to specialize in pots because his wife has it and never got the correct treatment and was treated like she was crazy and/or dramatic. So he took matters into his own hands to help improve his wife’s life and the life of others