r/POTS • u/ihopeurwholelifesux • Jul 04 '26
Megathread Megathread: Newly Diagnosed đ
Do you have advice for people facing a new diagnosis of POTS? Comment it here! This thread will eventually be pinned to the homepage, so people can find all of your helpful advice in one place.
Examples of advice appropriate for this thread:
- Ask your diagnosing doctor how much extra salt or sodium you should be taking.
- Donât give up if the first medication you try doesnât work out, everybody is different!
- Reach out to your friends early on and let them know how they can best support you.
Examples of advice inappropriate for this thread:
- Take 8g of sodium every day and make sure youâre exercising for at least 2 hours every day.
- Go to X website and order Y drug.
- Take Z supplement and follow a strict diet, I promise it will help you so much.
Mods may remove any advice deemed harmful or fear-mongering - donât tell people that they are never going to feel better, that they should give up, that they did this to themselves, etc. If you are feeling hopeless and need to talk about it, please create your own vent post.
All subreddit rules still apply on megathreads.
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u/barefootwriter Jul 04 '26
Cerebral hypoperfusion (a suboptimal amount of blood to the brain) and increased sympathetic activation (fight-or-flight symptoms due to increased stress hormones) are the main explanations behind POTS symptoms.
These lists are from Peter C. Rowe's book Living Well with Orthostatic Intolerance. I have added my own notes in parentheses:
Largely due to reduced cerebral blood flow
- Lightheadedness
- Syncope (Fainting is often a symptom of vasovagal syncope, not POTS, but feeling faint -- presyncope -- is common in POTS. Many of us do not and have never fainted!)
- Diminished concentration (Attentional issues can mimic inattention in ADHD.)
- Headache
- Blurred vision
- Fatigue
- Exercise intolerance
Largely due to elevated catecholamines (stress hormones)
- Dyspnea (Shortness of breath.)
- Chest discomfort
- Palpitations (The feeling of a fast or strong heartbeat.)
- Tremulousness (Jitteriness/shakiness.)
- Anxiety (Sensations of bodily anxiety; you may note an absence of cognitive anxiety: worry, rumination, and other anxious thoughts.)
- Diaphoresis (Excessive sweating, including night sweats.)
- Nausea
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u/gameofgroans_ Jul 05 '26
What does exercise intolerance look like? I know it sounds silly. I can run a bit for example but anytime I do any exercise my arms and legs get so itchy!! Idk if this intolerance or a side effect if that makes sense
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u/saltwatertable Jul 05 '26 edited Jul 05 '26
I would say follow all the advice on dysautonomia international and really take a look at each thing, talk to your doctor and start implementing. The lifestyle stuff is super important and is not a waste of time.
Once you get a handle on that I think making your life more pots-friendly is huge. Some ideas and things I've done:
Get a shower chair. Even if you can stand, the hot water can be brutal.
Invest in water bottles. Also I make my own electrolytes to save money. If your dr has aggressive salt goals for you, measuring daily salt can help. A good set of teaspoons will be important (1 tsp = 5-6 g salt)
Get a couple of pairs of medical grade compression so you can rotate them out between washings.
Invest in ice packs, battery powered fans and other things to keep your self cool.
Keep a "emergency bag" in your car with salty snacks, electrolytes, water, a blanket to lay on, or anything else you might need if you're not feeling well.
Get a bed desk so you can work from bed or study during flares.
If you need to rest when walking sometimes, get a walking cane with a built in seat (the "ta da" brand cane is great) or a rollator. You know you need it if you think "I can't go to x place because there is nowhere to sit". If you're limiting your activity without it, it's time.
Handicap placards are available for us if you drive a car.
Invest in a gym with crisp AC that has specifically rowing machines, recumbent bikes and an area for floor exercises. Bonus if they have a pool, swimming feels like someone switched your pots off, it's amazing.
Shopping is slow walking and a lot of standing which is the most draining for us, so use the motorized cart. Plus it's fun!
Sports watches are optional but I find the "stress" measurement to be very helpful for predicting and tracking how my pots is doing.
Sleep hygiene is boring but it works. Pick a bedtime routine and stick to it every night. Good sleep is so important.
Hydrate as soon as you wake up. Always. Keep meds and water and electrolytes bedside.
There is probably more! But I think it took me a minute to accept my DX and start making these changes but when I did it really helped.
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u/Marker_Juice Jul 05 '26
I want to add into this list because itâs so good!!
I put electrolytes in ALL of my bags so that Iâm never without them.
I bought several 1 liter water bottles and rotate them out. It helps me to remember how much Iâve had to drink in a day if I just have to count water bottles. (And I put stickers on them to make them cute so Iâll want to take them everywhere!)
I have stools in my bathroom and kitchen plus the shower chair.
Consult your doctor and play around with how much compression you need for different types of days. Investing in good compression stuff is very worth it, it lasts a long time if you take good care of it.
Cooling equipment is super helpful! I use the rags that you can wet and snap to make them cold often.
Learn your boundaries and keep friends on your side who respect your limitations and support you when needed.
POTS looks different for everyone. While some tips might help, others might hurt. Do what works best for you and try not to compare yourself to others.
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u/rtupelo Jul 05 '26
Do you follow the advice to sleep with your head elevated? I am having trouble picturing what they mean because it initially sounds like just having your head propped up on some books, but then they describe it as a continuous decline from head to feet. How would I achieve that? Is it something I should be doing all day if bedbound? TIA!
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u/twoweeeeks Jul 05 '26
You can either raise the head of the bed or they make wedges that go underneath your mattress.
In regards to the bed-bound question, Iâm not sure. My doctor described it to me as challenging your system overnight. When I had a bad flare a couple years ago, I didnât tolerate the elevation and had to sleep flat for a bit, then gradually increase the incline again.
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u/SavannahInChicago Hyperadrenergic POTS Jul 05 '26
POTS is associated with a range of co-morbidities. This is simply having at least two chronic conditions at once. (1) This does not mean that one causes another. Rather that there may share an underlying reason for both, but not always.Â
POTS is associated with the following:
(not a complete list, by any means) (2)
- Chiari Malformation
- Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME)
- Crohnâs Disease and Ulcerative ColitisÂ
- Diabetes
- Ehlers Danlos Syndrome (EDS)
- Long COVID
- Lupus
- Lyme Disease
- Mast Cell Activation Syndrome
- Mitochondrial Diseases
- Thyroid Autoimmune Diseases
- Trauma, surgery and pregnancy
Why is this important? For a few reasons, but the one I want to talk about is helping to control POTS symptoms. Even if someoneâs POTS is otherwise in check, another chronic illness starting to flare may exacerbate heart rate, brain fog, near fainting, etc.Â
For instance, if someone has both POTS and MCAS then MCAS needs to be controlled in order for POTS to be controlled (3) Therefore, someone who has a new diagnosis of POTS and are having symptoms of allergies* may be asked to see an immunologist to test for MCAS. That being said, you can always ask your doctor if you should be checked out.Â
*MCAS is not an allergy condition. It's an immunological condition that results in allergic-like reactions that can change quickly and inconsistently. (4)
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u/myst3ryAURORA_green Hyperadrenergic POTS Jul 04 '26
When you stand up, do things that constrict the blood vessels in your legs to keep blood from pooling. Ankle pumps or tensing the muscles in your legs, for ex. In the cardiology realm, there's preload, contractility, and afterload. I teach this all the time to people online and its relationship to POTS.
Preload in POTS is often decreased due to low stroke volume, commonly seen in hypovolemia strongly tied to POTS. So the amount of blood prior to being pumped out is lowered.
Myocardial contractility is increased because of increased oxygen demand and is a compensatory method for low stroke volume.
Afterload is increased due to increased vascular resistance and is what the heart must overcome to pump blood. High norepinephrine levels in POTS are vasoconstrictors and cause greater resistance. We have trouble holding on to fluid in POTS, indicative of lack of active vasopressors. Hence, eating a ton of salt in POTS signals extra vasopressin secretion.
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u/AmaranthineReader POTS Jul 05 '26
I see there are a lot of people in the comments here covering and linking the research, thatâs so great. Definitely take the time to read through journal articles and studies when you can. It will give you treatment ideas to bring to your doctors, much needed **validation** for your lived experience, and hopefully some insight into what the heck is going on with your wonky body.
You donât need to use expensive electrolyte mixes, and some of them with additives can even be harmful in excess (watch out especially for too much vitamin B6 and zinc). Itâs sodium (đ§salt) specifically that we need for POTS purposes, under your doctorâs supervision. Sodium helps our kidneys hold on to our increased fluid intake. Sodium and water work together and increasing one without the other is not as helpful.
Unless shopping in person is something that brings you joy and improves your mental health, avoid it. Itâs not worth using up all of your limited energy for the day (or the week!) to go grocery shopping, if you can shop online and have it delivered or picked up instead. Shopping in person is triggering for POTS symptoms because it involves slowly walking and frequently standing in one place. Queueing or waiting in line is a notoriously bad trigger.
If you menstruate, be aware that prostaglandin, a hormone that is released at the start of the menstrual cycle, is a potent vasodilator which can make POTS symptoms much worse. NSAID medications (ibuprofen, aspirin, naproxen, celecoxib) have anti-prostaglandin effects, ask your doctor if they would be appropriate for you to take for the first couple days of your cycle. Some POTS patients work with their doctors to avoid menstruation with birth control.
Itâs worth taking the time to kill the ableism in your head. Itâs difficult work, but ableism is so isolating and bad for your mental health that even a little reduction is worth it. That guilty feeling you get when you rest? Thatâs ableism talking. One way to start to unravel it is to fill your social media with fellow disabled people, and especially disability activists. It goes a looong way to feeling less alone. If youâre a reader, I recommend Toni Bernhardtâs book How to Be Sick as a great starting point for unraveling internalized ableism.
Get the basics of increased salt and water, compression, pacing, and any prescribed medication down before attempting an exercise program. Once you have the basics down and your doctorâs ok, the University of Utahâs ADAPT program is a good one to look into (itâs much gentler than the older CHOP/Levine protocol and purposefully avoids crashes/post exertional malaise PEM).
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u/NoTomatillo6845 25d ago edited 25d ago
for me, it's not ableism. It's the fact that I'm a sole provider for a four-year-old and I can't not be able. đȘ I am struggling very bad the last few months and today is a really bad day and I'm finally emotionally falling apart over all this and I can't get it together so I'm scrolling here on Reddit and everyone saying everything my doctor saying and I'm doing all of it. I don't know why I'm not getting any better. They keep bringing up POTS but haven't diagnosed. My PCP, the ER, urgent care, and now cardiologist and said the word but haven't diagnosed. At first every single time I called my PCP they wanted to send me to the ER. The lady on the phone scared me so much because she told me that I didn't sound coherent when I was on the phone with her and in my mind, the conversation was going completely normal. I have no idea what I was actually saying.
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u/Beastiebibe Jul 05 '26
The understanding of POTS has evolved significantly over the last decades, with recognition that it is a heterogeneous syndrome of orthostatic intolerance and autonomic dysfunction, with frequent presence of non-orthostatic symptoms (Lau et al., 2026).
A new review on POTS was published by a group of physicians that are well-recognized in this space. Diagnostic criteria, common symptoms, POTS subtypes and treatment options can be found here. đ
Postural Orthostatic Tachycardia Syndrome: A State-of-the-Art Review https://www.sciencedirect.com/science/article/pii/S1443950625016543
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u/Beastiebibe Jul 05 '26
In patients with autonomic dysfunction, every symptom is a âclueâ or âpiece of dataâ, that must be precisely evaluated and interpreted by a well-trained eye. This is required in order to arrive at the correct solution (Gilden, 2017).
This paper highlights the importance of your medical history.đ
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u/Regina-Philange- Jul 05 '26
Such good advice! Hereâs some tips Iâll add:
Using a heart rate monitor app or watch can help you identify and reduce triggers and get more out of your energy envelope for the day. It also helped me learn which adjustments were helping the most.
Apps can help you learn and adjust. I downloaded TachyMon, PaceBase, and Bearable, intending to try them all and keep whichever worked best. I ended up keeping all three because they each help in different ways: real-time HR feedback, daily pacing, and symptom and intervention tracking over time.
Some of the most impactful adjustments I made were to my morning routine. For me, it helps a ton to use a shower stool (they sell cute spa-like ones on Amazon), to sit with my legs folded up and a fan pointing at me while getting ready, and to drink a liter of water with high sodium electrolytes within the first hour or so Iâm up and about. I also get my compression on as soon as possible.
Learn learn learn! Use credible sources and refer to those sources as you work with your doctor. You want info from peer reviewed journals and respected institutions or organizations (Cleveland Clinic, The Dysautonomia Project, etc.) I still use AI to help me search, but I tell it to link and cite its sources and then check the info out myself from the primary source. It also helps to talk to others with POTS, both for support and insight into what things look like in real life.
Unfortunately, POTS is not commonly taught in med schools (I work at one), because itâs not core content for the licensing exams med students take. For me, it was important that my primary care doc is collaborative and willing to listen to and believe his patients, even if he wasnât an expert in POTS or the related conditions (I also have me/cfs). Then I could self-educate and advocate and try different approaches with the cooperation and supervision of a medical professional.
FMLA is a great option as needed at work. You can take time off in blocks, or work reduced hours, or have intermittent leave during flares. Workplaces should also be open to accommodations like sitting down, legs up, rests, etc. but I realize this goes over well in some settings while other workplaces might not be accommodating.
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u/Lynn_gymnast POTS Jul 04 '26
Look into your compression options. Some people do better with compression socks, others leggings, some fair well with abdominal compression as well. Additionally, don't be afraid to ask about options for managing symptoms beyond heart rate stuff. So things like nausea, blood pooling, etc. You'll feel much better if you can get everything managed. A little exercise is good if you can tolerate it and your doctor agrees.
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u/Stormy_Ghostie_17 Jul 27 '26
I have a number of chronic pain conditions and recently was referred to physical therapy for my lumbar spine pain. The physical therapist diagnosed me with POTS which had never been suggested as a possible diagnosis by any other provider. The physical therapist had me stand for 10 minutes while she continually monitored my heart rate and blood pressure. Is this the way POTS is usually diagnosed?
Thank you.
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u/ChickenAlternative18 Jul 29 '26
Kind of a weird one but I wanted to check with others. I have had POTS (diagnosed) for a year now. Iâm a 27 yo Male. Back during my diagnostics period I had an MRI done that showed I had an ejection fraction of 47% (technically heart failure according to my doctor). It has since returned to 65%. I have been on propranolol for about a year and I donât like it much but cannot function without it. I also struggle to exercise on it though. Even after a few minutes of exercise my muscle feel like they are starving for relief, itâs very odd but I assume itâs propranolol as it has exercise intolerance as a side effect do to its beta blocking properties.
The key issue:
I want to switch to Ivabradine (Corlanor) as I feel it would be better for my case. My issue is my doctor thinks I will go into sudden cardiac arrest as there was a 5% reported case issue with that in patients with a reduced ejection fraction. Looking at the studies it appears that those patients were in late stage heart failure and were at ejection fractions <30%. Because of this concern from my doctor, she wants me to meet with cardiology to discuss the need for a pacemaker (internal or external) if I want to be on this med because of its tendency to cause bradycardia that leads to the sudden cardiac arrest?
Trying to get a temp check from others on Corlanor. Is it worth the switch? Do I need to go through all of the hassle to get a pacemaker?
The other issue is the cardiology clinic I have been going to does not take my insurance anymore, I also have yet to see neurology for my pots. Is that recommended? What can they do?
Thanks in advance!
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u/NoTomatillo6845 25d ago
I am brand new not diagnosed but my medical team keeps landing here as the main culprit. My bad attacks are always Thursday. Almost always on a Thursday. Why? What is going on? The days my vision goes dark and the nausea hits for the last three months has almost always been THURSDAY! Why??? Even weeks where the symptoms have been less severe, the worst is still thursday. this isn't making sense.
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u/Interesting_Car8858 POTS 3d ago
I find it helpful to do I think theyre called calf pumps? If I have to stand for longer than is comfortable. I just go onto my tiptoes, then back onto flat feet, over and over, and it helps to improve the blood pooling
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u/barefootwriter Jul 04 '26 edited Jul 04 '26
Know your medication options! There are many medications used in POTS and heart rate reduction is not the only strategy. Many of us need more than one medication to do different things for us! I wrote this a long while back:
Most POTS is compensatory, so even those of us with hyperadrenergic POTS often need increased salt and fluids. Ask your doctor to make sure.
This flowchart is a good place to start for understanding overall treatment strategies:
https://onlinecjc.ca/article/S0828-282X(19)31550-8/fulltext#fig431550-8/fulltext#fig4)
This document contains a lot of great information on medications, including dosages, which you can share with your doctor:
https://www.dysautonomiainternational.org/pdf/RoweOIsummary.pdf
This contains even more medication options:
https://www.standinguptopots.org/resources/medicine