Around the world, people are eager to forget that 2020 ever happened and are quick to stop taking COVID-19 seriously. I’m typically the only person in a mask whenever I go somewhere public; if I’m lucky there’s 1 or 2 others wearing a mask. I understand wanting it all to go away, I really do, but I’m a realist, and wishing and hoping won’t make it magically disappear. I live in New York, the epicenter of Coronavirus cases in the spring of 2020, and I saw the devastation and toll it took on everyone. We quickly went from a few cases to hundreds to thousands in just a few days, and there’s no forgetting the footage from the hospitals who were ill equipped to handle the inflow of a growing pandemic. I also know that the long-term effects millions are experiencing from COVID are real, and they’re ruining people’s lives. I’m not even talking about the millions that have lost their lives, because if you don’t understand how devastating COVID has been at this point, you never will. This is about the millions that are experiencing the long-term effects, commonly called Long COVID, or Long-Haulers. This is about the connection between dysautonomia and Long COVID. This is about those of us who are yelling into the wind.
COVID Turning Into Long COVID
According to Penn State College of Medicine, recent research shows that as many as half of the people who have had COVID will develop Long COVID. To date, as of early April of 2022, almost 500 million people worldwide have had COVID. That’s just the number of those who have been actually tested and been reported. I know firsthand that many people who have COVID are not getting tested, especially now that there’s home test kits. I know a number of my own friends and family weren’t tested because their spouse or family member they lived with was, so they knew they had COVID.
Since many people who have had COVID are going unreported, as many as 60% of cases in the U.S. alone have been unrecorded. That data comes from a new model from the University of Washington, and really makes you think. That means, worldwide, that more than 1 billion people could have had COVID at this point. Some are asymptomatic, and they’re the lucky ones. However, they’re also likely passing it to others without knowing, since they don’t know they have it.
Long COVID, or Long-Haul COVID has also been called post-acute COVID-19, chronic COVID, and post-COVID conditions. Millions are developing this after contracting COVID, even those who have had mild cases. Symptoms include but are not limited to fatigue, rapid heartbeat, palpitations, brain fog, sleep difficulties, dizziness upon standing, joint and muscle pain, post-exertional malaise, mood changes, and many more.
It is a multi-system condition, and can affect numerous, if not all, of your organs. Symptoms may sound a bit familiar to some, I know they did to me when I first read about them in 2020. That’s because they’re alarmingly similar to the symptoms of the condition that has debilitated me for a decade now– dysautonomia.
The Dysautonomia Connection
Dysautonomia is dysfunction of the autonomic nervous system. I describe it in more detail in a recent blog post. The autonomic nervous system controls and regulates all of the body’s automatic functions, from heart rate to pupil dilation, breathing, digestion, kidney function, blood pressure, and everything else our body does without us having to think about it. There’s over a dozen types of dysautonomia, but one of the most common is called Postural Orthostatic Tachycardia Syndrome, aka POTS. This is also the type of dysautonomia I have.
In the past 2 years, I’ve seen the numbers in the support groups grow exponentially. There’s constantly new people getting diagnosed with POTS and dysautonomia after having COVID, and they’re joining the groups by the thousands.
Postural Orthostatic Tachycardia Syndrome is a condition that affects circulation and blood flow. It’s a form of orthostatic intolerance, which means that upon changing positions, tachycardia (rapid heart beat) occurs and leaves us feeling very symptomatic. For me, when I stand I get presyncope, which means I get close to fainting, but I do not actually pass out (syncope). Instead, my vision gets dark and dim, my legs, hands, feet, arms, and lips get tingly and numb, I get extremely dizzy, an instant headache, weak, and very disoriented. These are all common symptoms for POTS, and many experience these and more.
When we’re standing, our blood pools to our lower extremities. Our bodies fight to try to pump the blood back up to our hearts, but too little pumps back up. This causes all of the symptoms and tachycardia we experience.
In order to get a POTS diagnosis, your heart rate must elevate by at least 30 bpm (beats-per-minute) within the first 10 minutes of standing. For adolescents, the heart rate must elevate by at least 40 bpm.
POTS and dysautonomia have many causes, but it most commonly occurs after an infection (flu, mono, Epstein-Barr, COVID), autoimmune disease, small fiber neuropathy, Parkinson’s, diabetes, Ehlers-Danlos Syndrome, post-concussion, Chiari malformation, Lyme disease, and more.
Dysautonomia International, dysautonomia’s leading non-profit organization, has been at the forefront of research for years, and has been trying to raise awareness on dysautonomia, POTS, and now more recently Long COVID.
The president of Dysautonomia International, a hardworking woman named Lauren Stiles, who also has dysautonomia, was recently quoted saying the following: “Of the 4.8 million confirmed COVID-19 cases in New York State today, we can expect to see 1.4 million New Yorkers developing Long COVID.” She went on to say that more than half will develop dysautonomia.
When I first read that quote, I was taken aback for a number of reasons. First of all, the number is staggering. That’s a lot of people who have developed or will develop dysautonomia.
Secondly, where are they going to go? There are only about 150 doctors worldwide that specialize in autonomic disorders. Do you need to read that again? I did. ONE HUNDRED AND FIFTY. I knew there were few, but I didn’t realize how few.
Of those 150 autonomic specialists, I’d assume some are just for children, and some are just for specific disorders like Familial Dysautonomia, which is completely different from regular dysautonomia (you can’t develop Familial, it’s something you’re born with). I don’t know how many are specifically for adults who have or think they might have a form of dysautonomia.
Now imagine millions of people developing a condition that affects every organ in their bodies and having to find a doctor to not only diagnose them, but treat them properly as well.
There’s a reason I’ve been to over 50 doctors and only one has known enough about POTS to treat me. Most doctors have never even heard about dysautonomia and POTS because they don’t teach it in all medical schools. In the ones that do teach it, it’s usually a short paragraph that medical students probably skim in their dorm rooms.
And now? Now we’re left with a world with 9.2 million doctors, and only 150 of them are autonomic specialists. Do I have to do the math for you? I hope not, because I dropped out of Statistics in college. But that number is low.
I am beyond lucky that the doctor who treats my dysautonomia (a neurologist) is within an hour from my home, but a lot of people don’t have that luxury. They travel to different cities, different states, even different countries, in order to get properly diagnosed. That’s if they figure out on their own that they think they have these conditions, or maybe have a doctor who has heard of it and can point them in some kind of direction.
Moving Forward
I don’t want you to think all hope is lost, because it’s not. It is possible for a doctor who is not an autonomic specialist to treat and diagnose your dysautonomia. If your doctor doesn’t know about it, they have to be willing to do the research to learn about it in order to properly treat you. As for diagnosis, it gets more complicated because autonomic testing is recommended. Not every hospital (and certainly very few doctor’s offices) may be equipped with it, but some hospitals are. Diagnosis can occur without autonomic testing, but it’s certainly recommended to confirm it.
Dysautonomia International has a list of recommended physicians, and that’s the best place to start if you’re looking for a doctor. If there’s no one in your area on the list, be prepared to do a lot of trial and error in finding the right doctor. It will be hard, and it will likely be upsetting at times, but push through and advocate for yourself, because you deserve the best treatment available. Don’t let anyone gaslight you and tell you it’s all in your head, and if they do, move on to the next doctor on the list.
Even better for Long-Haulers, there are numerous clinics all over that are now treating only Long COVID. These clinics are set up all over the world. They will not help you if your symptoms presented itself from anything other than COVID, though.
The only issue is I’m not sure how knowledgeable these clinics are on autonomic disorders. In talking to my neurologist about it recently, he was saying how most of those who are going to the clinics have dysautonomia, and even POTS, and are still undiagnosed.
My own POTS symptoms seemingly started in 2012 after I got Strep throat 3 times in less than 2 months. We’ve known for years (decades, even) that dysautonomia can be triggered by an infection. It’s not new. We’ve been suffering for years and no one would listen. The government certainly wouldn’t. POTS still has no FDA-approved medications, and the amount of funding it’s gotten each year is insulting to those of us suffering.
Before COVID, POTS affected anywhere from 500,000 to 3 million individuals in the U.S. alone. Now that number is much higher. Millions have it worldwide, and many are undiagnosed because of lack of awareness on dysautonomia and POTS.
In 2020, the NIH (National Institute of Health) gave only $1.2 million in funding (and around the same in the past several years, give or take). Lupus and Multiple Sclerosis, which affects almost the same amount of people worldwide, if not a little less, got $127 million and $118 million respectively.
With more money comes more awareness, more research, and more help. We desperately need those things, and now more than ever. $1.2 million is a drop in the bucket. A drop in the ocean, really. It’s not even remotely close to the amount of money needed to take this debilitating disorder seriously.
Last September (2021), the NIH awarded $470 million to study Long COVID. While that number is appropriate given the number now affected by Long COVID, some of that research should be overlapped with the research done on dysautonomia and POTS. There needs to be communication between the two– some of the research may have already been done already. Like I said, we already knew an infection could cause dysautonomia.
Unless dysautonomia is caused by an autoimmune disease, it is treated the same. If it is caused by an autoimmune disease, some doctors might prescribe a treatment called IVIg (Intravenous immunoglobulin). Not all doctors believe in this treatment for POTS, though. I’ve even heard of people getting IVIg treatment without having an accompanying autoimmune disease.
If it’s caused by a concussion or an infection, treatment will remain the same. All off-label treatments, since nothing is FDA-approved, and typically starting with small things like compression garments and a high salt diet and/or salt tablets. Other treatments are based on individual symptoms, as there’s no “magic pill” for this multi-system autonomic dysfunction.
The Forgotten Ones: What About Us?
For years, those of us with dysautonomia have been trying to get the awareness out there that’s necessary for change. There have been many events to raise awareness, from lighting up buildings and even Niagara Falls in turquoise (the color for dysautonomia awareness) in October (the month for dysautonomia awareness), to walks for POTS awareness. There have even been rallies in Washington, D.C. for more funding for medical research.
If you were diagnosed with dysautonomia before 2020, you likely understand the struggle for awareness. Here’s where it gets really hard to swallow though– we’ve been yelling into the wind for years and no one has listened.
Suddenly more people are being affected post-COVID, and eyes and ears are opening up. The government is starting to pay real attention for the first time. But are they?
They’re still separating the two. $470 million for Long COVID research, a mere million and change for POTS. Even if you Google Long COVID and dysautonomia and read the articles, you’ll see that they know the two are linked. There are countless articles about the connection. So why isn’t research into dysautonomia and POTS getting a boost in funds?
I know what you’re thinking, and you’re right. The money they put toward Long COVID research will help those of us with dysautonomia. Yes, it will, someday. Who knows how long that will take, but I’m very hopeful that this will finally be what we need to get proper treatment, education, and awareness. It’s the most hope I’ve had since I was diagnosed.
But there’s the downside too, and the downside has been very upsetting and aggravating.
I’ve been trying to find additional doctors for years. Although a neurologist treats my POTS, a cardiologist is still needed. My neurologist is the expert, and he’s a brilliant man. POTS is a neurological condition that affects heart rate, therefore, I still need a cardiologist who understands POTS enough to at least to do the basics. It’s been impossible to find one, though.
At this point I’ve been to 8 and I’ve yet to find one I can actually use. I asked my neurologist for a recommendation, and he admitted that he doesn’t know of one cardiologist that is knowledgeable enough on POTS. There’s one that people love in the city (NYC), but she doesn’t take my insurance so I can’t see her. Insurance issues are a whole other issue that deserves more than a post, because that’s a huge problem, especially for those of us who are chronically ill and need so many types of doctors.
I need each of my doctors to have at least heard of dysautonomia and understand the basic principles. Dysautonomia affects every part of my body, and I need to go to different specialists to help with the dysfunction it causes, but how can they treat me if they don’t understand it?
I can’t tell you how many times I’ve witnessed a doctor Googling dysautonomia as they’re in the room with me. I can tell you this though, it’s not very comforting. I had to explain what dysautonomia was multiple times in a matter of minutes to a hematologist I was seeing, who I stopped going to after that. I still don’t think he grasped it after my explanation either.
When people started developing Long COVID shortly after the pandemic was in full swing, the clinics started opening up around the world to help those who were developing these symptoms. Dozens of these clinics have opened up in New York alone.
Here I am, struggling to find a single doctor who can treat me, and long haulers are able to go to these clinics which are equipped with doctors from every specialty you can imagine. Those of us who were diagnosed pre-COVID aren’t allowed to go to the clinics, and there’s not enough doctors to treat us.
Dysautonomia International only has 1 doctor they recommend on Long Island, and I see him. But what about the rest of the specialties? There’s not many doctors to treat us around the country, or around the world.
Most doctors who treat POTS have either 2 year waiting lists or don’t take new patients anymore. Plus, they’re out-of-state, which means I’d have to pay for travel and for the appointment, which I can’t afford to do.
So while these clinics are wonderful for those who have Long COVID, what about the rest of us?
In addition to that, people with Long COVID are being approved their disability, meanwhile I still can’t get mine accepted after 6 1/2 years of fighting for my life. (If you haven’t read my story, you can read Part 1 & Part 2 of my disability saga). How is that fair? My dysautonomia came from an infection as well, how is it that different?
I’m constantly seeing articles in the newspaper and online and seeing segments on TV about Long Haulers. Where are our articles? Where are our segments? We’ve been suffering for years, some of us for decades. We’re already becoming the forgotten ones.
And what if the connection between Long COVID and dysautonomia doesn’t become more official? What if they do their research, find treatment options, and only approve it for Long COVID use? We’ll be denied coverage from insurance, and be unable to get the treatment we need for the same exact illness, just caused by a different infection (or one of the other many causes). Doctors still won’t understand dysautonomia enough to treat us, but they’ll be up-to-date on the latest about Long COVID. The awareness we’ve been begging for will never come.
Maybe I’m seeing the worst-case scenario for some of these things. It is what I do best. But like I’ve said before, I’m a realist. I know what is happening already, and I know what could happen if the cards are not played right.
I don’t want anyone to think I’m not happy Long Haulers are getting the treatment and help they deserve, because I am. Of course I am. I know how much being this sick rocks the axis of your life and turns everything upside down. I know it all too well.
That doesn’t mean I’m not bitter too, though. I know I’m not alone in these feelings, because I’ve seen others mention it here and there. What about us? We’ve been suffering for years, and no one has listened. Are they going to help us too?
And I have the same questions. What about us?
Can you imagine if it was discovered cancer could be an after-effect of COVID, and they decided only people who had COVID could see the doctors they’ve put aside for them, but not anyone who had cancer before? There would be rioting in the streets. That’s how I feel. It’s not the same, of course, because cancer can be more fatal, and there’s more awareness and funding for cancer. But you get the basic idea. It would be ludicrous.
I just don’t want to be pushed aside like we have been. There’s no reason why we shouldn’t be getting the same help those with Long COVID are being provided. This is an important fight for us, and we can’t continue to be ignored and forgotten.
No matter how we developed POTS or another form of dysautonomia, we should all be in this together.
