Lily

I had an IV inserted because my doctor suspected hyperPOTS and wanted to see what my plasma norepinephrine levels were when standing. He said that just inserting a needle will make NE rise, no matter how easy it is for you. Therefore they insert an IV at least 30 minutes before the TTT to remove a potentially confounding variable from the experiment.

The TTT can be done with or without a blood draw. They will want blood if they suspect you have a hyperandrenergic component to the mechanisms driving your symptoms. If not, they probably won't draw blood. When I had my TTT they inserted an IV a good 30 minutes prior to the test, because doing so during the test will screw up the results. If I remember correctly, IVs also come in different sizes. Anyway, you might not get one. Think positive.

The recommendation is there, I think, because the goal of water + salt is to raise blood volume, which in turn can raise blood pressure. People with hyperPOTS tend to develop high BP, so doing something that could make it worse is not recommended. BUT water+ salt can still be prescribed if your doctor thinks it will help anyway. Also, only about 1/3 of people with regular high BP are salt-sensitive, so maybe it is not a necessary recommendation for everyone. Example: I have extremely high norepinepherine (NE) and blood pooling upon standing. No tests other than the tilt table with catecholamines. Official diagnosis is hyperandrenergic, but there is EDS type 3 in the family and my doc is not sure if I have it or not. Hypothesis is that my body cranks out NE because my veins are too stretchy and won't respond. Anyway, doc has me taking 8-10 grams of salt and 3-4 liters of water daily, compression hose, and clonidine (to supress my sympathetic nervous system). It definitely helps and I have more symptoms if I forget some water/salt. If my BP would have been raised by the salt and water, the clonidine will keep it down because it also decreases BP. I suppose your doctor will tailor his recommendations to your specific malfunctions, and if that means extra water and salt for a hyperPOTS patient, then so be it.

Being bored with beige hose and not liking the way Juzo fits me, I finally decided to try dyeing my oldest and most holey pair of hose. I thought I'd post the results in case anyone else wants to try. My favorite and best fitting style is Sigvaris Eversheer open toe thigh high 30-40 in Natural. They are nylon wrapped around a spandex core. I learned that nylon can be dyed with acid dyes. Spandex can't, but in this case that doesn't matter. One could buy jars of dye from the internet, or just go for Kool-aid dyeing. Kool-aid contains enough citric acid to fix the dye. Food coloring and vinegar will also work. I wanted a raspberry-is burgundy, bUT the only Kool-aid colors availabe in the grocery store were Cherry and Grape. I decided to settle for purple hose. After adding 2 packets of grape to 1.5 quarts of water I dipped in a paper towel. I thought the purple wasn't dark enough, so I added red and blue food color according to package directions for purple. Interestingly, the hose turned out just the shade of raspberry that I wanted! The first photo is of a dyed and an undyed leg of the Eversheer, both being wet. The second photo is of the dry hose on me. Note that there is no spandex visible, and so far no color bleeding out onto my pants or my legs. I am very happy with the color. Now I want to figure out how to get a dusky teal. ETA: The files will not attach. Please try these links instead: https://drive.google.com/open?id=0B0OKpSjSbFIJMW91b3YzbHQ0YTA https://drive.google.com/open?id=0B0OKpSjSbFIJcFNra0VNZ2k3aTg

You can collect data to test this question from NOAA.gov. Go to your location's forecast page. At the top there is a section for current weather at the closest weather station. To the right is a list of links under the title More Information. Click on 3 Day History. It will give you hourly weather data, including barometric pressure. Subtracting pressure at one time from pressure at the previous time gives you change in pressure. If you copy the data into a spreadsheet you can make a timeseries of change in pressure along with the pressure data. You can also note when you feel terrible and when you feel great.

1. Other: knitting. 3. Other: none of the above.

If I remember correctly the stimulants help with vasoconstriction. But there's also the different effects on ADHD vs neurotypical people. If your brain is deficient in dopamine to start with, the stimulants get you up to where you should have been, and you calm down and are better able to focus. If you already have enough, then you get high. Maybe there is a similar differential effect with respect to heart rate? I have ADHD as well as POTS, and my neurologist will not prescribe any stimulants for me either, because of the tachycardia thing. Fortunately, Wellbutrin is able to provide extra dopamine for my poor, deficient frontal lobes. I would probably have to get a letter from the cardiologist. I think that maybe the Wellbutrin makes me feel less fatigue, but I'm not sure. It certainly helps with getting started on tasks! BTW: If your son has ADHD, you might, too. That could be the reason you have brain fog in the first place. ADHD and POTS cause similar cognitive/attention symptoms.

You might not have a flare. Focus on that. I have never had symptoms flare up in response to dental treatment, and I don't do anything special. If your dentist does not know about POTS, you could perhaps take to his office ahead of time one of the review papers or pamphlets that describes it.

I have not tried knee-high socks. My doctor recommended either waist-high at 20 - 30 mmHg compression, or thigh-high at 30 - 40 mmHg. I have been using thigh-high, because the waistband on the others rolls down and is very uncomfortable, and you do not have to pull down the thigh-highs to use the toilet. Also reduces the chance that I'll put a runner in them. I also use open toe, because they are easier to get on and I have a knack for putting holes in regular stockings. Different brands fit more comfortably than others, too. The hose definitely helps even though I hate it. Blood pools less in my feet and so more is in circulation where it belongs. I do not elevate the bed.

Perhaps if you eat more healthy fats? When I am eating a low-ish carb, high fat diet I feel satisfied with much fewer calories than when I am eating high carb and low fat. Add nuts, avocado, olive oil, coconut oil, fat from pastured, organic animals.

My POTS sneaked up on me gradually. I do not remember having symptoms in my 20's, but I did by my late 30's. I got a diagnosis of NCS in 2010 and POTS in 2014.

In addition to what everyone else said, you ought to go to the campus medical center and counseling center. You may be able to get evaluated for free. Then you will have a document to show your professors. Your school should also have a disability services office, which coordinates services for students who need accommodations. Depending on how the evaluations go you may be able to officially request disability accommodations.

I tend to start out at night feeling cold. If i add a down comforter I will warm up quickly and fall asleep, but then I'll wake up about 4 hours later too hot and sweating. What helps me is to take a shower right before bed, sleep in a thin summer nightie, and use a cotton blanket and a bedspread. This way I start out warm enough to fall asleep, but I cool off enough to stay asleep. I assumed it was aging, as I am in my 40's.

Soups are much better when you make them yourself. Try it! When you get your new BP cuff, take it to the doctor and take a reading on it right after he measures your BP manually. That will give you a better idea if the cuff matches the doctor.

I have regular migraines, with or without aura, triggered by weather. Vitamin B2 and Magnesium have been very effective for me in preventing them.

I didn't know Clonidine increases blood volume. Interesting. I was in initially prescribed Atenolol, which helped POTS a great deal but made me depressed. No-motivation-depressed, not sad-depressed. Next up was Methyldopa, which helped my ADHD (motivation! Yay!) but not POTS. Clonidine helps my POTS but not ADHD. I recently added Wellbutrin for ADHD, and I have motivation back. Interestingly I am also a bit more relaxed mentally and less prone to thinking about work repeatedly.

Clonidine has knocked my sympathetic nervous system down to a comfortable level. I do not feel nervous for no good reason, my heart rate and blood pressure are down, and I no longer have to pee every time I stand up. Very nice. Clonidine can't fix blood pooling, of course, but it makes a big difference to the sympathetic nervous system .

If I can't get to sleep it is either because I am ovulating, or I am having trouble turning my brain off. Turning my attention to making up a plotline for a fantasy novel helps with this case. It is more typical for me to wake up in the middle of the night due to overheating. For this problem, I need to start out warm enough (shower), but have a cool room and light bedcovers so I cool down enough after I fall asleep.

Maybe you're overtraining, given that you're in grad school. Been there and done that. It's a lot of stress, and ecercise adds morw. Maybe back off a little and see if that helps.

I always get ordinary novocaine, or whatever it is that they use now, and I do not notice any extra symptoms.

I remember feeling great on Atenolol, except it made me depressed. No motivation depressed, not sad depressed. Maybe you just need to give your body some time to adjust. How long have you been taking it?

I was in the marsh again yesterday, for about 3.5 hours. Goodr189, how does your fit bit heart rate compare to other measures of heart rate? Is it accurate?

Today I am trying out for the first time thigh-high stockings. Sigvaris Ultrasheer, size SL, open toe, 30-40 mmHg. My measurements are within the sizing chart recommendations for size small, but close to the top of the range. I'm 5'8" and 165 lbs, just tall enough that many store-bought pants are a tad too short. I am pleased to report that the silicone band at the top got all the way up to the very top of my leg, and they have so far stayed there. They are not bunched up behind my knee and they have not been slowly slipping down. There is no waistband to roll up or dig in, which is very nice. I don't have to pull them down for toilet time, so unlike the pantyhose version I will not be risking putting a run or hole in them every time I use the toilet. The other thing I like about Ultrasheer is that they have a color that is light enough to almost match my skin tone, and they look like nylons when they are on.

Bodyweight exercises today, same as last time.

Today upright stationary bike, 30 minutes.