Lily

I have high plasma NE on standing and I'm on a high salt diet, too. I think the important point is why your NE is high. Is it high because your body is trying to compensate for low blood volume or excess veinous pooling? That is a different situation from primary hyperPOTS, where your body just makes lots of NE for no reason.

Do you experience this in certain positions but not others? For example, I can't sleep with my arms folded across my chest because eventually my pinkie and ring fingers will go numb. I don't think it is related to POTS, but just a trapped nerve from the way you are lying.

Don't let your fears rule you! Try the job and see. You already know what is the worst that is likely to happen (you get fired or have to quit), so now think about good possible outcomes. Imagine your self succeeding. The human mind is devious and can make imagined outcomes happen, both good ones and bad ones. Also, plan out ahead of time what you will do if you start to feel poorly. Wear the stupid annoying compression hose. Do all the right things. Etc. I agree that if you are teaching math one-on-one, you ought to be able to sit with each child while discussing math problems. Maybe your desk chair will roll. Then you can roll it around with you as needed.

I tried one of those velcro belts and it made my lower back hurt. Also, the Sigvaris waist high compression hose that have abdominal compression roll down at my waist and dig in uncomfortably. I just use ultra-firm panty slimmers. Recent discovery based on my most recent doctor's appointment. For me, they work better alone than compression stockings alone. Its amazing! I can tell because my feet don't turn nearly as pink as they do without, and I feel better. Both together are, of course, best, but for everyday working at a desk just the glorified girdle is enough.

Hey, I shave my legs and I hate them too. Compression stockings help, but not so much that I want to wear them. Upon complaining to my doctor, he said that if blood is pooling in my legs, it probably is also pooling in my abdomen. He suggested trying Spanx. So I bought an ultra-firm high-waisted thing and discovered that it works better than the stockings all on its own! So I have not been wearing the stockings. My point here is to tease you about wearing a girdle. But it might help!

I'm a professor at a comprehensive university (so teaching is more important than research). I teach from a seated position to deal with POTS. The nice thing about universities is that 1) certain accommodations I don't have to ask for, like this one, 2) I don't teach all day, just part of the day, and 3) professors are expected to be eccentric so sitting cross-legged on a table is consistent with expectations. Your school might be willing to accommodate a request like this. Or you might find that you have the freedom to just do it without asking. I guess the question is how much do you reveal and ask for up front, and how much do you wait and reveal later if needed.

The resistance band leg presses might feel wobbly because you are using small stabilizer muscles that you don't normally use much. If this is the case, continuing to do them will result in improvements in stability as those small muscles strengthen. You could also ask your girlfriend to push on your legs as you push back. What about lying on your back and using your legs to push yourself backwards around the floor? Or get one of those dollies that mechanics use to roll under a car and rig up something squats-like. Maybe attach your resistance bands to it and to a wall, so you have to push against the resistance?

I have blood pooling. If I stand up without any compression gear on, within a few minutes my feel will get pink and the veins in my feet will start to distend out from my skin. The longer I stay still the darker they get. I thought it was normal (they're red because I'm standing on them) until my POTS doctor told me otherwise. He recently told me that I could also have blood pooling in my abdomen, but it won't turn red as a result. He advised that I try abdominal compression, and that ladies shapewear is sufficient. Boy was he right! I tried it with and without the compression hose, and shapewear alone is more effective than the hose alone if I'm not planning to stand up for long periods of time. Amazing. Anyway, that is all I can say about blood pooling. I do not experience the sensations you mentioned.

I have no idea if these things work or how well, but I saw a post about hot girl pearls on Facebook. They are large pearls on necklaces and bracelets, and they are filled with ice pack gel. You freeze them inside their little pouch. The pouch is insulated. You can take them with you when you go out and put them on as needed.

I have been taking florinef for about a year for POTS. I take 0.1 mg per day, but I ramped up slowly based on reading about other peoples experiences. Potassium was not prescribed as in taking another pill from the pharmacy, but my doctor did tell me to make sure to eat foods high in potassium. It helps to bulk out my blood volume so that I feel less lightheaded. Also my sympathetic nervous system doesn't seem to go on overdrive as much because the blood volume is higher, so I feel less fatigue and less hyperandrenergic symptoms. I can't answer your questions about stopping, or about aldosterone production.

That's weird. I would think that they wouldn't go anywhere if your legs aren't moving much. Perhaps all these issues with rolling is variation between our body shapes and the shapes assumed by the manufacturers. For example, Sigvaris thigh highs fit me better than Juzo because Sigvaris's thighs are larger for the same size ankle. The silicone band on the Eversheer is great. It is not a bunch of little dots, but a wide strap of silicone. It works for me, and they don't fall down as long as I make sure to wash the silicone band as well as the rest of the hose when I sink-wash them at night.

Have you tried to bring your doctor a data table or graph of your blood pressure fluctuations? Record several days worth at least so they know it is not temporary, and however many times per day you need to in order to show the full range of variability.

@Pistol, Thanks for the tips. Note that I have never machine washed any of the compression hose, yet all brands roll up on me. Poking my fingers through was neatly solved by using the donning gloves, though. They should sell those for regular nylon hose!

@Pistol, I did try the waist high hose. My doctor recommended Sigvaris waist high because that brand has abdominal compression. The problem I had with it was primarily that the waist band rolled down into a little binding tube around my waist. That was more than a little annoying, because every time I fixed it, it rolled right back down again. The other problem is that every trip to the toilet is another opportunity to poke holes in them with your fingernails. If not for the first problem I might have started carrying my gloves with me, or cutting out the crotch.

Great! Thanks. My cardiologist yesterday said that I ought to consider Spanx to cut down on abdominal pooling. I didn't know that blood pooling in the abdomen doesn't show up like in the feet. Anyway, I bought a Spanx high rise panty and I am wearing it today with my thigh high compression stockings. Darn it! It does help. I hate the compression stockings, but adding the Spanx makes a huge difference. I guess I will be wearing these more often. Not sure about squats and deadlifts with them on, but we shall see.

I can't find a post about this question, but my apologies if I missed it. Does anyone have any information about whether we're supposed to wear compression while exercising?

I take mine in the morning. Clonidine is split between morning and evening.

The elevated bed position helps me to not have to pee after 3 hours. I can make it to 6 hours instead.

I take clonidine and florinef. My elevated NE seems to be a response to low blood volume and blood pooling.

I, too, was told that the whole head of the bed has to be raised. I tried it, and found that it does work, and it didn't feel all that odd. It was easy to get used to it. Mine us up about 4 inches.

I have had 2 TTTs. The first used nitrogycerine, and I almost passed out. Heart rate rose up to a point, and then HR and BP both dropped suddenly. They got me flat in time, though. That one diagnosed me with NCS. The second TTT was specifically for testing for hPOTS, so they did not use nitro, nor did they leave me tilted upright long enough for NCS to kick in naturally.

Gatorade does not have a lot of electrolytes in it. You might try adding salts (regular and low-sodium together).

People in general do not talk about mental health often enough. There is no shame in seeking help for something you're having trouble dealing with. After all, Prince Harry of England admitted publicly his own problems! Consider your local possibilities and perhaps try someone. Also, can you use logic to break out of the unhealthy eating habits? You know you are making everything worse by eating edible food-like substances instead of food. I know this is hard, but you have probably done other hard things before, so you can deal with this, too.

Most of the time I fall asleep reasonably quickly, and wake up 4 to 6 hours later to pee. If not for Clonidine it would be 3 hours. Sometimes I have a hard time falling back to sleep, or else I sleep lightly until morning.

My body doesn't handle heat + humidity well. Heat by itself is okay, but not if it is also humid. It triggers all my POTS symptoms, and the only thing I can do about it is to minimize exposure by wearing a hat and a cooling scarf, and staying in the shade or air conditioning as much as possible. Bright sunlight also triggers something, too.