#and like i do actually have a diagnosis for migraines lol i saw a neurologist every six months all through hs and was medicated and trying

[eileennatural]

okay strictly speaking idk if tmj actually can cause like literal neurological migraines but when i have a "tmj migraine" i experience all the symptoms that i have with like. regular migraines plus the tmj stuff so. i think thats a reasonable way to refer to the phenomenon

[cookinguptales]

Okay so weird question, but how exactly did you get diagnosed with POTS? I was diagnosed with hypermobility syndrome and partial arrhythmia a while ago, and it's only just recently that I've had a doc wonder if I have POTS. He didn't really tell me anything about POTS, and now I'm really lost! Do you think it's unlikely that I could get to be 21 and not be diagnosed?

Strap in, friend, because the story of how I got diagnosed is long and unpleasant.

So to start off, here’s a basic explanation of Postural Orthostatic Tachycardia Syndrome. It’s a syndrome, which means that it is a description of a collection of symptoms rather than an underlying cause. Frankly, doctors aren’t super sure why any of this happens, what exactly causes it, or even if it’s genetic or what. (But my mom, sister, and grandmother all show signs of mild POTS, so uh. It’s probably genetic.) The long and short of it, though, is that your blood vessels are supposed to automatically tighten or release in order to control blood flow. When you stand up, they tighten to counteract gravity and make sure blood stays where it should be. When you have POTS, your blood vessels don’t do what they’re supposed to do. Your autonomic nervous system stops controlling this tightening and loosening process, which means your blood flow is not being adequately controlled. (Also, there seems to be some research showing that #1, we tend to have more elastic blood vessels, which means they just expand when they fill up more – bad because that means your body can’t use blood pressure to regulate blood flow, either, and #2, we may not always have enough blood in our bodies to fill our blood vessels, so again, shitty blood pressure.) ANYWAY, what all this means in practice is that assorted parts of your body aren’t getting enough blood, or they’re getting too much blood. Blood does all sorts of important things for your organs, especially oxygenating them, so this really means that POTS is an “anything that can go wrong will go wrong” situation. Anything in your body that uses blood can go haywire at any time. And sorry to say, that’s everything.

Now, POTS is highly variable. Again, it’s a loose collection of symptoms, and those symptoms are different for literally every patient. POTS is actually super common in teenage girls, but it tends to be very mild and some teens (mostly boys, mind) completely grow out of it, so people often don’t even notice they have it. People only just started researching it and it’s still not talked about much, which, well, is probably due to sexism. I learned the hard way that teenage girls are not generally listened to when they complain about nebulous symptoms, especially if those symptoms have literally anything to do with hormones and menstruation. (Which POTS does. It’s…I think ¾ of all people who have it are biologically female, and onset usually accompanies periods of hormone fluctuation such as start of menstruation, childbirth, or start of menopause. Most sufferers get it in their teens when they start getting their period.) Like… It’s hard to really put this in a gender neutral way because I promise you, the reason doctors are shitty about POTS is tied to both the biological and societal effects of being female. That’s an aside though.

Anyway, tl;dr, it’s different for everyone and doctors think you’re nuts. When I was diagnosed, in the informational packet literally said “THIS IS NOT ALL IN YOUR HEAD” because so many patients have been repeatedly told that. For me, I was actually uh. I don’t want to say lucky? But in some ways I guess, yeah, lucky. I have a really bad case of POTS with some really severe symptoms. I have a lot of digestion problems, extreme exhaustion problems, dizziness, faintness, anxiety/depression, pooling/tingling/coldness in extremities, and here’s the biggie – blindness. When I stand up, I often just straight-up go blind. (Or if I’m just sitting there doing fucking nothing if I’m on an airplane.) It was really bad especially when I was a teenager. It used to be like literally every fucking time I stood up. (We later found out it was because all the blood was draining out of my head bc gravity. Turns out your brain likes blood! This is also why it hurts so much.) Now, doctors ignored most of what I told them about exhaustion, trouble keeping down food, aches and pains, etc. I was repeatedly told “oh, well, that’s just part of being a teenage girl”. Like honestly, try telling someone that you have exhaustion, pain, and nausea relating to a period and see how seriously you get taken. Jesus.

BUT UH THEY COULD NOT IGNORE THE BLINDNESS. Like I don’t care how teenage girl-y you are, it is not normal to go blind on the regular! My doctors could not figure out what the hell was happening. And I do mean doctors. I got POTS when I was around 10, along with my period. I was diagnosed when I was almost 18. In the meantime, I was passed around between dozens of doctors and honestly? I was a guinea pig. They didn’t know what was wrong with me so I was subjected to constant barrage of tests and treatments that made me a hell of a lot sicker. I was going to like 3 different doctors a week, sometimes every day. There are very few medical tests I have not had at least once. Some of the treatments they tried, I later learned, carried a strong risk of addiction, permanent neurological damage, and death. I was a drugged-out mess trying to drag myself through 15 flavors of physical therapy every day. Like uh. In short, my teenage years weren’t…good… 

I finally got referred to like my sixth neurologist, and the guy was like “okay, you have been passed around between neurologists, cardiologists, ENTs, sleep disorder specialists, etc. for YEARS and we don’t know what’s wrong, so it makes no sense to keep ‘treating’ you – so I’m gonna take some readings and send them (and you) to a research hospital”. And that’s what he did! He took me off all of my medications (leading to the kind of DTs that honestly possibly could have killed me; I researched a few of the medications later and let’s just say you’re not supposed to go off them cold turkey) and did some tests. He found out some stuff like my blood pressure moves around a lot when I stand up. And sometimes my blood pressure was as low as 60/40. (Yo, that’s almost dead. The nurse took the reading three times with two different machines bc she was freaking out, lmao.) So he referred me to Mayo Clinic.

Now, what I did not know before this was that Mayo was actually the clinic that had discovered (and still researched) POTS! They saw a lot of girls like me. They took some blood, did a few tests, and when I had my appointment with them, they knew in under a half hour that I had POTS. I…cried. A lot. haha. It was so bizarre how many things in my life were actually an indicator of POTS. They were like “do you often sit all folded up?” and I basically exclusively do – and often got in trouble for it in school – and they were like “yeah, that’s POTS, you unconsciously try to keep all your limbs tucked in to reduce how far your blood needs to go”. Which is, I guess, why I tend to lose sensation in my legs and/or have my feet turn purple when I sit in normal chairs. lol. “Do you ever get dizzy or black out when you stretch or yawn?” oh yeah. “Do you get really sick when you take hot showers?” almost died once or twice, check! “Do you get weak when you lift things above your head?” you betcha. “Do you have a lot of problems with heat and sunlight?” OH YES I DO. Living in Florida was hell. I’d be vomiting and unable to stand up after like 30 minutes outside in the summer. I still vomit and get migraines if I look at a sunset, when the sun is strongest. Sensory sensitivity, especially photosensitivity, is a thing with POTS.

The actual diagnosis of POTS is kind of difficult. They usually have to do a ton of tests to rule everything else out first. Then they’ll usually try a tilt-table test (they tilt ya and measure your heart rate to see if your heartbeat skyrockets to help battle your blood doing weird shit) or a sweat test (which I am told is supposed to be painless but was one of the most painful experiences of my life so maybe it was a POTS thing) or look at your pee and see if you’re hella dehydrated. If you have POTS, you’re pretty much always hella dehydrated. (Gross but important: a symptom I never mentioned bc I didn’t know how abnormal it was – it burned like HELL when I peed. Turns out I was grossly, dangerously dehydrated. My urine was so concentrated that it was literally burning my urethra. idk how this slipped by so many doctors, but drink some dang water!) So it’s really a combination of tests for diagnosis, and they have to know to look for it in the first place! More and more doctors know about POTS now, but when I was first diagnosed almost a decade ago (this February! :’) when I went to college none of the school doctors knew about it. My family doctor didn’t know. None of my specialists knew about it. They wouldn’t give me student vaccinations bc they didn’t know how they’d interact with my brain. lol. It’s better now, though! I recently got a new doctor when I left my school’s health system, and she knew what POTS was! I was so happy, haha. Once I had a doctor literally google it right in front of me, so it was uh. A welcome change.

All this is to say that getting POTS diagnosed can be hell!! And I could definitely buy that you’re 21 and haven’t yet been diagnosed, especially if you’re female. My recommendation is this: the main treatment for POTS is diet and exercise, and that can’t hurt even if you don’t have POTS. I shit you not. There’s no cure or anything, but you are supposed to drink A LOT of water (I drink over a gallon a day, and that’s on days I’m not dealing with the sun) and eat a LOT of salt (”as much as you can stand” was their exact wording) and wear compression clothing (spanx and compression socks help me) and try to keep your body as toned as possible. It’s really easy to get out of shape when you have POTS (god knows I did), but they recommend trying to keep your blood moving. (THOUGH, CAVEAT!! I put on a lot of weight since I got diagnosed, and I have to admit. It’s gotten my blood pressure to a healthier level. So idrk what to make of that.)

I’m not gonna tell you to start eating massive amounts of salt when I don’t know your body, but drinking water can’t hurt you. So if you suspect that you may have POTS, start drinking water. This is not a replacement for a treatment plan, but it can’t hurt you! It can only help! So while you’re working with your doctor, just drink a lot of water and see if it helps you feel better. It is like night and fucking day with me.

Finally, POTS has a high comorbidity rate with other issues. In other words, if you have a severe case of POTS, you probably don’t only have POTS. A common illness to have with POTS is EDS, or Ehlers-Danlos Syndrome. It’s a type of hypermobility, which may be why your doctor is concerned. (I don’t have EDS, probably, but I do have some pain/movement issues that they’ve never been able to pin down, so there’s probably…something. idk.)

Here’s my advice. Work with your doctor to try and figure things out. Drink water. Make sure you have a good doctor whom you trust. Even after I got diagnosed, I regularly got medical professionals who believed this shit was all in my head. And try not to worry. Like I said, for most people who have it, POTS is extremely mild. If you change your lifestyle, you might not see many symptoms at all, and if you do, well. Work with that trusted doctor. Hit me up. I know a lot of ways to get a lot of salt in your body. lol