Lily

It looks like you had an excellent childhood diet (other than no meat), which was much better than what most people in USA eat. Assuming your parents knew how to do veganism the correct way (which requires planning and forethought), you may not have been deficient enough in anything to cause disease. Maybe your vegan diet was very low in salt? I wouldn't ruminate on it any more if I were you. Focus on the present, because that is where you live. The only universal dietary recommendation that makes sense to me as being truly universal is to eat Real Food and avoid processed food. Second is to drastically reduce added and refined sugars, but avoiding processed foods goes a long way to accomplishing that. Humans can thrive on a wide variety of diets and macronutrient ratios, so beyond that one simple rule you eat how you like. Maybe you would benefit from a Whole 30 or other elimination diet, or just experimenting with adding or subtracting different types of foods to see if your health improves after eliminating something. I did this with dairy once even though I knew I did not have a dairy problem, and I found out otherwise. I was accepting as normal symptoms that were not. Maybe there is something in your vegan diet that was exacerbating your symptoms, something that you normally don't eat when being ominivorous?

I don't know if it will make you lose weight, but surely eliminating all processed food will result in a healthier diet with greater nutrient density. I also recommend avoiding seed oils (corn, soy, canola, peanut, sunflower, etc), because they have way too much omega 6 fatty acids (too much promotes inflammation). Focus on real food instead, the kind your great-grandmother would recognize. No more edible food-like substances! Also, if you're worried about diabetes, perhaps try limiting carbs.

I think that it is also important to discern why one's NE levels are so high and treat accordingly. In my case it seems to be a response to low blood volume and blood pooling. I feel much better on Florinef even though I have very high NE. Doc didn't try it right away, but did after I described how I feel during and after having to stand.

I'm a college professor. Some days I teach, other days there are no classes. Either way I try to get in to school before 8am (to get a convenient parking space). I generally eat breakfast in my office while I get my thoughts straightened out for my 8:30 class. Class 1 is 8:30 to 9:45, class 2 is 12:45 to 2:00. Monday and Wednesday there is also a lab for class 2, which is 2:10 to 5:00. I do not stand up to teach. Maybe some of the period, but certainly not the whole time. Standing the whole time would result in too much fatigue, lightheadedness, and brain fog to be able to do additional work that day. I sit cross-legged on a table in the front of the room instead. College professors are allowed to be eccentric, so it works. After classes I work in my office, usually with my feet on the desk. If I am too fatigued to think or get started on work, I take a nap. I also have an under-desk elliptical trainer, which is the only way I have been able to get in my cardio these days. I eat lunch before the 12:45 class, and sometimes I get hungry later in the afternoon. About 5 pm I go home, usually tired. I may take a power nap. I try to have lights out before 10pm, but I am not always successful. I generally save housecleaning tasks for weekends, but sometimes I hit up the grocery store on the way home during the week. I also try to get to the gym twice per week for weightlifting. I have been feeling better recently after starting to make and drink 2 quarts of Pedialyte-style electrolyte replacement drink. I hope this helps!

My POTS doc tried this on me. It helped my ADHD but not my POTS. Clonidine is more effective for me.

I agreed to try magnesium oxide and vitamin B2, just so I could say I tried it. 400 mg/day each. I expected it not to work, but it did. Over the course of a month or two my migraines faded out and now I hardly ever get one at all. If I do get one, it is so mild it almost doesn't count and Excedrin and a nap takes care of it.

I have never done a full elimination diet, but I discovered by accident that eliminating petroleum-based food additives (artificial colors, 5 preservatives) eliminates most of my Tourette Syndrome tics, and that eliminating milk proteins (casein and whey) eliminate almost all of the rest of the tics AND obsessive, anxious, depressed, paranoid obsessive thoughts. No noticeable effect on POTS, though.

I, too, forgot about the importance of electrolytes, and having a little sugar in the electrolyte water (but not as much as Gatorade includes). Two weeks ago I had gotten severely run down and dragged out, to the point that I was getting worried that my POTS was getting worse. Then on impulse, on the way from work to an event I was determined to attend, I bought and drank a liter of Pedialyte. Boy did that help! I felt halfway better on minutes. That was last Friday. Since then I have been mixing up my own using juice (enough for 80 grams of carbs or less), 1 tsp regular salt, and 2 tsp low sodium salt, then enough water to make 1 gallon. I drink 2 quarts of that over the day every day. Over the week I have been gradually feeling so much better.

I am 44, and a college professor in a STEM field. POTS sneaked up on me gradually, and only in the past 8 years or so, but I have had ADHD since early childhood. Academia is very flexible in terms of POTS accommodations, but medications and fluids help a great deal. If I want to teach while sitting cross-legged on a table instead of standing, or work with my feet on my desk, or take a short nap, I can. As long as I get my research done, teach well, and get to meetings. Medications have been invaluable for ADHD. I'm not sure what I would do for employment if I were to not get tenure.

When I started florinef I read on the internet that people who increased up to the prescribed dose slowly didn't gain weight. I started with half of a pill for a week and added another quarter of a pill weekly until I got to a whole 0.1 mg pill. No weight gain. I have also found that my body likes lower carb, higher fat diets, but not too low with the carbs. It is easy to keep my weight stable, and only a little effort to lose.

Perhaps you should talk to your doctor about managing this fear.

I also take salt and extra water, because my high NE seems to be a response to blood pooling and low blood volume. I think that the advice against salt and water for hyperandrenergic POTS is for cases where the high NE is primary, and not compensation for other malfunctions.

I'll answer a few of your questions, too. Has anyone had a period of time when the symptoms disappeared for a month or more then came back? - No. This has not happened to me. Is it possible to experience pots symptoms sitting for extended periods of time, primarily lightheadedness? - Yes, oftentimes I feel lightheaded when sitting in a chair with feet on the floor. If I have the feet up, or I'm sitting cross-legged, then no or lower symptoms. Can lightheadedness be present without tachycardia? - I don't wear a heart rate monitor, but I seem to have lightheadedness with hr elevated but not over 100 bpm. Does anyone experience a pulse after sitting for awhile that goes up/down (not in a single beat, but over 30 sec), from say 70s-100s or 60s-90s then back again, occurring over and over for 30+ min? - No, I do not think this has ever happened to me. More likely I'll be sitting with my feet on my desk and my heart cranking away at 96 bpm. Is pots worse standing completely still then walking around gently or doing easy house work? - Standing still and walking slowly will give me POTS. Walking quickly makes me feel better. Did anyone start out being diagnosed with pots after having a good fitness level? Were you able to stay on top of your fitness (at least maintain if even at a little lower level) despite high heart rates? - I was never an athlete, but I can still work out however I want to. My limit on cardio is attentional, not POTS-related. Gym time for me is weightlifting, and I got an under-desk elliptical trainer so I can get in the "cardio against resistance" in a way that I will actually do it. Is it possible to have a milder pots (or well controlled) where most days can be doable just with tachycardia and a mild lightheadedness, brain fog and fatigue? - Yes! This is me. I'm a college professor on the tenure track at a teaching-oriented university. Standing up for 1.25 hrs to teach is a problem, but I can sit. I can work with my feet on my desk. I can take a nap if I need to. It is a very flexible job, but it comes with self-doubt built in. Until you get tenure, you constantly worry that you won't get it, that you're not good enough. But if I have to give more than I have in order to get tenure, then I shouldn't have it. The brain fog is my biggest concern, job-wise, but if I keep the blood pooling under control with positional adjustments then it is workable. College professors are allowed to be eccentric, so sitting on a table to teach works. Plus, I have combined-type ADHD, so it also works with my hyperactive nature.

My NE was 1962. It seems to be a result of low blood volume and blood pooling.

I bought a FitDesk Under Desk Elliptical trainer for my office. Often when I am feeling POTSy some exercise will help me feel better, but if I'm at work I don't want to take a gym break. So I got this and assembled it today. I am pleased to report that it is very quiet and my knees do not hit the underside of my desk (I'm 5' 8" tall). It sticks out in front of my desk, but I have a one-desk office so I don't care. It has 8 levels of resistance, and the lowest level is challenging enough for now. I don't think I'll max it out any time soon. As for POTS therapy, I am more likely to do this than to get on the bike at home with 3 cats asking for food and petting. It remains to be seen if I stick with it, but this is making cardio with resistance exercise too convenient to put off. Anyone else have interesting exercise devices?

The issue might be the refresh rate of the screen. Does anyone notice different effects with TVs vs movie theaters vs computers?

I second the suggestion to collect data (but then, I'm a science professor, so of course I would). In order to prevent the introduction of accidental bias in your measurements, you might try taking your temperature at the same time every day, maybe 3 set times. And then also add in additional times if you feel particularly hot or cold. I don't know how long you will need to do this, but if you keep it up long enough you will have a nice data set to show your doctor.

You could take the home BP monitor with you to the Dr. office next time and see how it's measurement compares to the Dr. office reading. Yours might be off a little.

I have never had problems with the flights themselves, even 15 hours between Paris and San Francisco. Waiting in line is usually more of an issue for me. I make sure to wear compression hose, get extra water bottles, and bring salt. And I am a rude girl who tries to put her feet on the backs of the armrests in front of me.

This article goes into detail about electrolytes (from a non-POTS perspective): https://paleoleap.com/all-about-electrolytes/ If you scroll down a ways you can find some recipes for DIY electrolyte replacement drinks. The electrolyte and sugar content of some major brands and the DIY drinks are compared.

Thanks for the link! Challenging program, but helpful.

My doctor says Florinef will not help unless you are also taking lots of water and salt. My doc has me taking 8 - 10 grams of salt per day and at least 4 liters of water. I do feel more symptomatic on days when I forget the salt.

POTS crept up on me gradually instead of developing after an illness. I have very high standing plasma norepinephrine, but it seems to be a response to low blood volume and blood pooling rather than a primary hypernadrenergic state. The symptoms that interfere the most with daily life and my job are lighthededness, brain fog, and fatigue. I am able to hold down a full-time job as a college professor, partly because the nature of the job is so very flexible. I can just do any accommodation I feel like I need. I haven't had to ask formally yet for anything. Plus I love my job. I'm on fluorinef and clonidine for POTS, and I have compression hose, but they don't get me back to 100%. Exercise helps, too, but I have typical ADHD problems with staying on schedule.

Maybe you are getting too much vitamin K. Do you take a vitamin that contains it? Do you eat unusually large amounts of greens, diary, prunes, or other foods that contain it?

If you don't need abdominal compression, you might consider thigh high. It is not necessary to pull them down to use the toilet, so they get holes much less frequently.