Things I Wish I'd Known When Newly Diagnosed With POTS Part 1

When I was diagnosed with POTS in 2016 (after 14 years of symptoms) I didn’t know anyone else that had POTS. It felt extra scary to think that this was rare, being medically weird is a terrible feeling. As it turns out POTS isn’t that rare, it was just rarely diagnosed. This trend is improving. Over the last decade or so there have been a handful of organizations supporting awareness and education among the medical community for POTS and other forms of Dysautonomia. More and more people aren’t having to wait 14 years to get diagnosed and that’s great progress! But it can still feel isolating. I’d like to share some of the things that I wish I had known early on. Some of them I found fairly quickly and some took me longer to figure out.

1. Keep looking for help from doctors until you get the help you need. POTS is thus far incurable. It’s really just a game of managing symptoms right now. And no one really dies from POTS directly so it’s not a sexy thing for doctors to treat. Western medicine has a big focus on either stopping people from dying or curing people and neither of those outcomes really applies when it comes to POTS. As a result some doctors will brush it aside. I’ve heard doctors use the logic ‘it’s incurable so why even bother diagnosing it?’ I find this infuriating for a whole host of reasons but that’s a different blog post (literally).

But the good news is there are doctors out there who are willing and skilled at treating POTS. It will very likely involve some travel to find someone but there could be someone close by. Personally I’ve seen doctors in Pittsburgh (where I live), Cleveland, and Toledo. Now that my POTS is a bit better controlled I just work with my local doctor. But early on when we were still trying to figure it all out he told me he wasn’t an expert in this and if I wanted to address this aggressively I should see some actual experts. To my local doctor’s credit he had my care plan about 90% correct and those other specialists just made some adjustments to get me to where I am now.

So keep asking for help! I’ve found a few phrases to be especially helpful. One is “I want to approach this aggressively, what’s the next step for that?” Another helpful one is “My quality of life is too low.” It shouldn’t be the patient’s responsibility to translate things into terms doctors understand but often, if the patient is able to do that, they will get better care. Also, I hate to have to say this but...if you can bring a man with you to “vouch” for you that often helps. That reality is infuriating but I’ve seen it play out personally. If I go to the hospital with chest pain I’ll get blown off half the time but if my husband is there looking worried all the sudden the doctors are very attentive. I think we need to work to change these things but in the meantime we all have to find ways to survive in the world we currently occupy. So I guess for now we play the game and continue to advocate for better treatment.

2. Compression gear can be really helpful and isn’t actually as horrible as you think it is. One of the first things my doctor recommended was compression socks or stockings. In my head those were what my grandma wore when she wasn’t doing well. In reality lots of other people use compression, like marathon runners and elite athletes. When a person with POTS is upright their body is working about 3 times as hard as a normal body would be. So doing a full day of normal activities for a person with POTS can be pretty gruelling. Your body is working super hard, and there are some easy ways to give it a little help. One is compression.

So here’s the basics you need to know about compression. Compression is measured in mmHG or millimeters of mercury. There are different levels of compression. The compression gets more intense as the numbers go up. It usually starts at 15-20 mmHG and then goes up. I find the next level (20-30 mmHG) is the best option for me because it does enough to help but it isn’t so tight that I hate wearing it. If you go with something you find uncomfortable you just won’t use it as often, so don’t push yourself too much. Go as high as you can comfortably go and stick with that.

The next thing you need to know about compression is that you don’t have to buy it from a medical supply store or a drug store. In fact I would recommend against that. The medical grade things would probably last longer but they are so much more expensive and so ugly that it’s just not worth it. I buy 6 packs on Amazon and replace them about once a year. This has worked well for me so far and I get to feel like an athlete rather than a grandmother.

https://amzn.to/36sXFa6 For instance try these:

https://amzn.to/3tf8Qg4 Or these:

There are lots of colors and designs and thanks to Anime wearing knee high socks is in at the moment.

https://amzn.to/3cEXSuL For stockings you will mostly only find black or beige but black in particular can work with cute outfits and not be obvious that you are wearing a medical device.

https://amzn.to/2NRBeF0 Or if the waist high bothers you (it bothers me so I avoid those) you can try these thigh high ones.

3. Find an online support group but remember what it’s for. Online support groups are great at a lot of things but it’s important to remember that most of the people on the support group are people who aren’t doing super well. So it’s a great place to pop in and say “hey, this thing happened, is this normal?” or to commiserate about life with chronic illness, but it’s not a great place to get a clear picture of what living a healthy and full life with chronic illness might look like. Use those online spaces but keep in the back of your mind that this is where people come when they are struggling and don’t get discouraged thinking your whole life is going to be like the people in the support groups. Sure you will probably have periods where your life is challenging with chronic illness but there are also a lot of times when you can do pretty well, albeit with some lifestyle modifications and medications helping you. Online support groups really are a fantastic resource, just remember what they are there for.

4. Most people are diagnosed when they are doing poorly. That’s what gets your attention and the attention of doctors. But that also means that you get this new diagnosis when you are at or near your worst. So it’s important to remember that you aren’t going to feel this way forever, but it’s also important to have a realistic timeframe. POTS can often begin or get much worse after a serious infection. This is called post-infectious POTS. The estimates are that about 80% of people with post-infectious POTS can get back to some semblance of a normal life. But that usually takes them between 2 and 5 years. That’s a long time and I know that’s hard to hear when you are newly diagnosed but it’s important to know what you’re dealing with.

I’m a decent example of this. I had POTS symptoms starting when I was 13 but didn’t get diagnosed until I was 27. The year before that I had two major bacterial infections in a row and I was pretty inactive for about 5 months as a result. I wasn’t totally bed bound or anything but I wasn’t doing athletic activities or high energy activities. And so deconditioning was a big part of why this all got worse. I also think talking about conditioning can be a bit of a minefield for both patients and doctors.

Any doctor who treats POTS patients knows how important conditioning is but they don’t always communicate that in a good way. Often doctors won’t realize that what they say makes the patient feel personally to blame for their illness. This makes the patient less likely to comply because they know intrinsically that the reason they are sick isn’t because they are weak. This is true but what is also true is that more exercise will help. The way I think about it is that because of my POTS I have to be much stronger to feel healthy than the average person does because my body is working 3 times harder than the average person’s body is.

Another thing about exercising is that when POTS is really bad you just can’t actually exercise sometimes. It’s called exercise intolerance and it’s a very real thing. There are some medications that are specifically used to get a POTS patient to a place where they are able to exercise. There are also specific types of exercises that are better for POTS patients and these often aren’t intuitive. Getting help from a Physical Therapist that is either knowledgeable about POTS or is willing to learn about it can be invaluable.

When I started on my exercise program under the direction of my cardiologist it didn’t feel like it was helping for about a year. That’s a long time to just muscle through something. Having the support of a PT or other medical professionals can help a lot with that grind. I also had some setbacks in my exercise program and ended up needing to do water PT for a while. But most people my age don’t even know what water PT is, let alone knowing where to go to get that type of treatment. So you have to keep asking for help each step of the way. And you have to be patient with yourself. POTS progress is measured in years, not weeks.

5. The laying down test. This one is just a good way to figure out if POTS is the culprit when you have a weird new symptom. I’ve found that if I have a weird symptom, say I’m vaguely nauseous for no good reason, if I lay down for an hour (and distract myself) it will often “magically” go away. Then when I stand up again the symptom will come back. This is a pretty solid test for whether or not POTS is causing the symptom. Laying down doesn’t instantly fix the problem so it’s important to give it some time. I tend to put on a TV show or distract myself in some other way for an hour or so. If the symptom doesn’t go away then it might be something else. If it does go away it’s probably POTS.

This was especially important early on when I was still learning all the ways POTS can affect me. Since it’s a dysfunction of the autonomic nervous system (ANS) and the ANS does so many different things it can be surprising sometimes what things happen. Now, 5 years after being diagnosed, I usually can recognize a POTS symptom when it comes up. This doesn’t totally solve the problem of course, but at least I don’t have to worry about there being anything else wrong with me. Honestly that peace of mind is worth a lot when you are living with chronic illness.

Also, I understand that you don’t always have an hour to “waste” whenever a new symptom appears. You just do the best you can. And if the symptom is bad enough you won’t be all that productive anyway. So whenever you can, take an hour and lay down. It’ll really help you learn to identify POTS symptoms that wouldn’t otherwise be obvious.

6. Lastly for this post, salt is your friend. Salt will increase your blood pressure, which can be super helpful. I mostly get my salt in my diet though they do make drinks and salt tablets that can be used instead. The salt tablets in particular can be hard on the stomach sometimes so use those cautiously until you see how you do with them. I make sure to have salty snacks around, keeping at least one or two within easy reach of the couch. Great options are pickles (really any pickled vegetable), corn chips, soy sauce, salsa, potato chips, crackers, beef jerky, lunch meats, cheese, and bacon.

I also would recommend getting some gatorade powder (https://amzn.to/2MsaA53). The powder lets you make it whatever strength you like and it cuts down on plastic bottle use. In the summer when the weather is hot I usually just plan to drink a glass of gatorade each day. Drinking broth in colder months can also be a good way to get extra salt in. I actually carry a small container of Himalayan rock salt (https://amzn.to/2Mr4To7) in my purse for emergencies. If I’m out and don’t have any other good salt options I’ll just suck on a piece or two and drink some water.

I hope some of these ideas help folks who have just recently been diagnosed. I plan to write a part 2 to this post. I had a few too many ideas to fit into one post. Keep an eye out for that in the near future.