Lily

Your English is excellent. No need to apologize for it. Did your doctor test the amount of norepinepherine (noradrenaline) in your blood? That can be done during a tilt table test or not, and it involves one blood draw after lying around quietly for 15 minutes, then another blood sample after standing up for 15 minutes. If you make too much norepinepherine you can get symptoms of anxiety. In this case, your body is anxious, not your mind. It can be annoying, and can make you mentally anxious because you are worried about why you are physically anxious! In answer to your newest question, I do not think social anxiety is caused by POTS. Fatigue, brain fog, dizziness, and anxiety can all be caused by POTS.

You may not be getting enough vitamin D. Your doctor can check for that.

Slow walking, as in average person speed at the mall, will generate symptoms. Fast walking, however, is totally fine. Or running. I suppose the slow speed isn't enough to keep blood flowing and not pooling in my feet.

Do you have hyperPOTS? Perhaps your body is overreacting to a normal drop in blood sugar, and cranking out stress hormones when it doesn't need to. I second the recommendation to decrease carbs and increase fats. That will keep your insulin and blood glucose more stable.

I was told that the florinef won't keep my blood volume up if I don't load up on salt and water.

My mom flies with a motorized chair. If yours is motorized, they'll want to know what kind of battery it has, and certain batteries can't be allowed onboard. She gate checks it at the bottom of the ramp. Dad folds it up and puts on the travel cover. She (and anyone traveling with her) gets to go through the handicapped security line, and she boards first with the other people who need assistance or extra time to get down the ramp. I can't remember what happens at security. She can walk through the metal detector, but I don't remember what happens to the chair.

My mom reversed her osteopenia with lots of vitamin D3 (10,000 IU per day or something like that) and eating lots of dairy. It can be done.

Jessica, you might try intentionally focusing on what your body can do, rather on what it can't. Example: Yay! I exercised for X minutes today. Lets see if I can do it again tomorrow. Also, instead of heart rate you can go by perceived exertion. Here is one scale, with descriptions of how you feel at different levels: https://www.hsph.harvard.edu/nutritionsource/borg-scale/ And keep a log of your exercise and perceived effort, so you can look back at it and feel good about yourself.

I get PVCs or PACs, too. Doc says they're annoying but harmless, so I don't worry about them.

I have hyperPOTS and I function well enough to do whatever exercise I want. I lift weights, ideally twice per week, and I try to get in cardio at least 3 times per week. Indoor cardio is boring, but I have 2 ways that I can do it. I have my outdoor bike on a magnetic trainer in sight of my TV, and I got an under-desk elliptical trainer for at work. I can usually make myself do one or the other most days. I do not pay attention to my heart rate at this time, unless I get curious. I would if I was going to train for a race or something. I find that I feel better in general with vigorous exercise. For example, walking slowly at the speed people usually go causes me to feel poorly, but walking quickly makes me feel better. Gets the blood moving, I suppose. I also suppose your response to exercise could depend on the exact mechanism causing your POTS. In my case it is low blood volume combined with overly-stretchy veins, and a sympathetic nervous system that keeps cranking out norepinepherine. Start slowly. Do what you can and keep trying to go longer and faster.

I, too, get symptomatic if I walk too slowly (but not as bad as you). I presume that slow walking gives enough opportunity for blood to pool, but faster walking keeps the blood moving sufficiently that it doesn't pool. My mom got a motorized wheelchair for spinal stenosis, and she loves being able to go places again. It is definitely worth considering, but also maybe by working on your cycling your tolerance for walking will increase? I remember reading that after several months of consistent cardio exercise you get increased blood volume.

My favorite is a recipe for homemade Pedialyte-like drink. It has allowed me to function almost normally. The recipe is from this article: https://paleoleap.com/all-about-electrolytes/ The article also includes some sugar free paleo recipes and a comparison of some common commercially available drinks. It is written with the average paleo-inclined reader in mind, not POTSies, but the information is helpful nonetheless.

I don't know enough about midodrine to speculate about why you are having worse brain fog. I have some work suggestions, though. You might try putting your feet up on a box, so that you are sitting in a position closer to squatting. You probably won't be allowed to put your feet up on your desk, but that helps a lot for me. Fidgeting and contracting your leg muscles might help keep blood flowing. Do you have compression hose? You might also consider bringing documentation about POTS with you, in case you need to explain yourself to your boss and ask for accommodations. I hope it goes well for you!

We tried methyldopa, but it helped my ADHD and not my POTS.

I have hyperPOTS, and I have no issues with flying that I do not also have on the ground. My biggest problems are standing in line and staying hydrated. I wear compression hose and load up with salt before going. I worked on flexibility enough that I can get into a "third world" squat if I need to sit down in line. I take a salt shaker with me and I empty my water bottle before getting to security. I refill the bottle on the way through and usually buy another. If I can walk fast enough through the airport, I will feel better on my way to the gate. On the airplane I make sure to stay hydrated, and fidget a lot to discourage clotting.

I have ADHD (inattentive and hyperactive) and POTS. ADHD [and ADD (inattentive only)] is a life-long problem. It does not develop with time like POTS can. There is some overlap in symptoms, due to the decreased cerebral blood flow in POTS, but one can distinguish between the two. If you truly have ADHD/ADD your symptoms will have been evident your entire life, and they will be the same from day to day and hour to hour regardless of how you are feeling POTS-wise. I was diagnosed with ADHD at age 16. Thinking back, Mom and Dad could see that my behavior as a 5 yr old (maybe even earlier) was consistent with ADHD. If you have fewer or zero "ADD" symptoms when you are lying down or having a good POTS day, you should be strongly suspicious of the ADD diagnosis. There are some medications that are used with both conditions, but I don't know that a causal link between the conditions has been discovered. It would be very interesting if there was a more basic physical problem that can cause both conditions, but ADD and POTS cannot cause each other. Ritalin is a primary and very effective ADHD drug, but it is also used in POTS to help peripheral veins constrict better. Clonidine is sometimes used in ADHD as a secondary add-on to the primary drug, and it is also used in POTS when the sympathetic nervous system is overactive. I take Strattera and Wellbutrin for ADHD. They boost norepinephrine and dopamine in the brain, respectively. For POTS I am on Clonidine and Florinef. All this works very well for me, but it took a lot of experimenting to find the right medications in the right combinations. ADD medications can work better or worse for different people, so you will probably need to try a few before finding the right one for you. It would probably help to bring POTS info to your psychiatrist. Perhaps ask your POTS doctor what kind of article or other written material he would give to a fellow doctor.

My doctor recommended 8-10 grams of salt. Your recommendation may be different, but for tracking salt intake you'll have to measure. Check your salt container to be sure, but 1/4 teaspoon should be a little over 1 gram. If you eat a typical American diet you may get 3 grams or so from processed food. Gatorade does not contain enough salt for us POTSies, but Pedialyte is better. My favorite recipe for a Pedialyte-like drink: mix 1 tsp salt, 2 tsp low sodium salt, and enough juice for about 80 grams of carbs, and enough water to make 1 gallon. You might also try elevating the head of your bed by a few inches. This supposedly helps the body retain water overnight. Exercise is also a very common prescription. Cardio against resistance, building up to 30 minutes 3x per week is what I was told. Stronger leg muscles help veins constrict, and consistent cardio exercise causes blood volume to increase eventually.

I read other people on the internet saying that working up slowly, 1/4 of a tablet per week, prevented weight gain. I did that, and I have not had any negative side effects. Water and salt didn't seem to be effective without it.

My plasma NE was 1962 mg/dL (or whatever the units were), so I qualify as hyper POTS. I do not think mine is primary, though, but a result of my body trying to deal with overly-stretchy veins and low blood volume. I take clonidine to keep a lid on the sympathetic nervous system and florinef (with extra salt and water) to expand blood volume. Some of the salt and water comes from a homemade Pedialyte-like electrolyte drink. I wear compression hose as needed and I elevated the head of my bed. All this has helped tremendously. I also try to get exercise in, both cardio and weights. Keep in mind that I was never so badly off that I couldn't work, although being a graduate student and then working in academia is very flexible when it comes to workplace accommodations. I think the critical part of treatment is not what subcategory you fall under, but which mechanisms are causing your symptoms. I hope this all helps.

I wasn't getting much help from fluids (4+ L) and salt (8-10 g), either, until I started taking some of it as Pedialyte. I now make my own electrolyte cocktail at home, because it is cheaper. Juice, enough to get about 20 grams of carbs. 1/4 tsp regular salt. 1/2 tsp. low-sodium salt. Enough water to make 1 liter (or quart) total. Something about the salt + sugar is different from salt alone, even though I usually get my salt with food.

How about vertigo? Is it sort of like vertigo?

Yes, it all sucks quite a lot. What mental tricks will help you cope sort of depends on how your mind works, but here are some thoughts. 1. Think about how it could be worse, and be thankful that it is not. 2. Read about other people who worked hard and accomplished something, regardless of what it is. Maybe one of these people strikes you as motivational. 3. Focus on daily or weekly goals instead of the big picture. 4. Every day write down one thing you are grateful for. 5. Giving up means the bad stuff wins. 6. I read somewhere that consistent aerobic exercise eventually (after a month or two) results in increased blood volume. 7. 25% of people remain severely disabled. That means that 75% of people improve partially or completely. 8. There is a blog of a POTSy who runs half-marathons! 9. Perhaps you need to allow yourself to mourn for the life you lost to POTS? May I say something religious? If so, highlight the line below to read the white type. 10. I'm Catholic, and if God is the way the Catholic Church says He is, then He wouldn't allow something bad to happen unless there was some good that could come out of it. That's all I have for now. Motivation ultimately has to come from within, but we are always here to cheer you up.

Wow. Have fun with that (sarcasm). I wonder how long it will take her to realize that you have a physical problem? Anyway, your HR increased by more than 30 bpm upon standing, right? That is characteristic of POTS. As for the HR during exercise, I don't know if there is one characteristic response. Surely this would be dependent on the individual?

Maybe instead of trying to go straight to a ketogenic diet, perhaps you should decrease your carb intake slowly and in steps? Jumping right in with both feet might be too much change too quickly for your body. A slow step-down might have fewer unpleasant side effects. Try something like 50 grams of carbs less than usual for 2 - 3 weeks, and then drop it a little more.

I was feeling so poorly in September and early October that I was worried about being able to keep working. Then I drank a liter of Pedialyte on impulse, and I felt halfway better in minutes. So for me an electorlyte solution for sick people works better than simply salt and water separately throughout the day. I mix up an electrolyte cocktail and drink 1 - 2 quarts daily as part of my salt and water intake. I feel better than I have all year even when working all day, and my orthostatic tolerance has increased. Juice to equal about 80 grams of carbs (how much depends on the juice, and you can use Gatorade, too). 1 teaspoon regular table salt. 2 teaspoons low-sodium salt. Enough water to make the total volume 1 gallon. This has about the same electrolyte and sugar content as Pedialyte.