Lily

I had a nuclear stress test years ago, and they told me to eat a greasy hamburger to help clear the isotope from my body.

44 minutes ago, bombsh3ll said:

Lily, what symptoms/tests did your doctor base the low blood volume theory on? Did you have it measured? I truly believe this is a major issue for me. 

My doctor did not do any tests for blood volume.  I complained about how I feel worse after lying down with my feet up compared to right before, and it takes a half hour or so before I feel better.  He said that it sounded like low blood volume and prescribed Florinef.

Example of diagnosis by symptoms:  Upon standing my feet turn red, and you can see the veins pop out from the skin.

I have very high norepinepherine during upright tilt.  The doctor suspected hyperandrenergic based on symptoms, and tested catecholamines during a TTT to check.  But he also says I have symptoms consistent with low blood volume, and he suspects I might have EDS.  I think that my situation is similar to what Bombshell said: hPOTS caused by my body trying to deal with low blood volume and veins that are too stretchy. 

I can go all day without eating if I am on a low carb high fat diet (not necessarily ketogenic).  Less than 100 grams of carbs per day is good for me.  Yes, I get hungry, but I do not get weak, lightheaded, cranky, & such.  If your body is adapted to a low carb high fat diet, it turns on the genes for fat burning, which means you can use your own stored body fat for fuel if needed.

POTS is sometimes misdiagnosed as GAD, so you have a valid alternate hypothesis there.  Try telling yourself during the next panic attack that it is just your body overreacting, and wait it out patiently.  I can't speak to substance abuse, but surely there are people on campus who can help with that?  As for guilt, it depends what you're feeling guilty about.  It is totally valid to feel guilty for doing something you know to be wrong.  In this case, resolve to stop doing whatever it was, forgive yourself, and move on.  If you're feeling guilty about not being able to do things because of POTS, that is another matter entirely.  Misplaced guilt.   American culture right now is so very utilitarian that it can be hard not to feel this way (You said "college" and not "uni" so I'm assuming you're from USA.).  The worth of a person in a utilitarian sense is in what they can do.  Focus instead on being countercultural by valuing yourself (and others) for who you are (a human!  a unique one!).  Also try spending some time each day thinking about things that are true, good, and beautiful.  That helps to counteract negativity in general.

12 hours ago, potsiebarbie said:

Have you always had it? Do you have any other medical issues? If you don't mind me asking.

I don't know if I have always had it, but it was found on an EKG when I first started noticing POTS-like symptoms.  I hadn't had many of those previously, so who knows.  I don't have any other heart conditions, just POTS, NCS, ADHD, migraines. 

I have Incomplete Right Bundle Branch Block, and I was told it was a normal variant and not any kind of problem at all.  Left BBB, now, that is more likely to be a problem.

On 3/15/2019 at 2:25 PM, Potsies said:

I was thinking maybe stretchy veins, as I do have hypermobile joints and soft stretchy skin, as seen in EDS, but I don't have any of the joint pains or dislocations associated with it, and my POTS symptoms came about quite suddenly just last year. Are you on any medications? What do you fins helps you most with your symptoms?

My POTS doctor is uncertain if I have EDS or not.  I have many signs of it, but not badly enough to make a diagnosis obvious.  I suppose I should see someone about that.  My NE was 1962 ng/dL (or whatever the units were), so I am on Clonidine to keep a lid on the sympathetic nervous system.  Also Florinef (+ salt and water) because my symptoms are also indicative of low blood volume, according to my doctor.  He likes to diagnose based on symptoms instead of running all the tests (other than the TTT).  I also have compression hose, but I hate to wear them.  I feel fine as long as I am walking quickly.  Also sitting with my feet up.  Those help the most.  Medications do not help as much as I would like them to, and I have ADHD problems with maintaining a steady exercise program.  I suppose that would probably help a great deal, too.

14 hours ago, Potsies said:

What would be the cause of my heart rate going so high without me having severe symptoms? My only major symptom that I complain about the most is fatigue. I am so exhausted, constantly. I wake up feeling as if I never slept. I do have occasional numbness in my extremities and cold and clammy feet, but the fatigue is what bothers me the most. I can walk almost an hour before feeling faint. I went to the doctor yesterday and she took my heart rate and was shocked that it was 157 just from standing, with normal blood pressure and that I didn't feel like I was gonna pass out. I read about a lot of people fainting and being quite more disabled than me with heart rates of 110-120, so how can I have an average heart rate of 150 but still have only "mild" symptoms?

You and I are in the same boat: relatively mild symptoms that worse off people might be glad to experience.  As I understand, the heart beats faster because otherwise the blood wouldn't get around well enough.  Here is an example:  perhaps your veins are too stretchy, allowing blood to pool in your feet instead of circulating.  Your body increases release of norepinepherine in an attempt to get the veins to constrict.  The NE also raises your heart rate.  Your end result is an elevated heart rate.  The fatigue comes from all the extra work your heart is doing.  This is just one example.  I am most familiar with this possible mechanism, because I think this is what is happening with me.  There might be other mechanisms and processes that can lead to the same end result.  The severity of symptoms depends on exactly what in your body is malfunctioning.  There are several different malfunctions that can lead to the same end result, so it is all highly individual.

Here are some of the things I do to help me sleep.  I do not do all of these every day, but some of them are routine.  Slow deep breathing, a shower before bed, avoid or block blue light frequencies about an hour before bed, no internet surfing in bed, relaxing music, pray a rosary, make up a plotline for a novel and work on the details (or some other all-consuming but completely unnecessary thinking task).

ORS = Oral Rehydration Solution.

I use a recipe I found on Paleoleap.com: 1/4 teaspoon regular salt, 1/2 teaspoon low sodium salt, enough juice for about 20 grams of carbohydrates, and enough water to make the total volume 1 quart.  Sometimes I just put the salt into a bottle of Gatorade and drink it concentrated, with plain water after.  For traveling I make up little baggies of the salt mix in advance so I can mix them with bottled drinks as needed.  

The Polar H10 is very good, and it has an app (Polar Beat) that it can work with.  Maybe your app store will have a version of it for your tablet.

How long have I had POTS?  I'm not sure, because it sneaked up on me.  I started to notice more fatigue than I expected around 2007 or so, and the first diagnosis of anything related (neurally mediated (near)syncope) in 2011.  It has been getting slowly worse over time, but I can still hold down a full time job (with accommodations).  

My sister has hEDS.  My POTS doctor thinks I might have it but he's not sure.  My knees and elbows are hypermobile, and my skin is abnormally stretchy, but I can only touch the floor, not put hands down.  And I can't touch my thumbs to my wrist.  HEDS would certainly explain why I have blood pooling!  I haven't gone to a specialist because I don't dislocate, but perhaps I should.  

This is good, because all the doctors are in agreement.  I do hope your disability case comes through smoothly and easily.  Just don't give up an be bedridden entirely.  Do what you can otherwise you may get worse.

How about exercises while lying down?  Leg lifts and such.  

Interesting.  I called my pharmacy to ask about this, and they haven't heard about a Florinef shortage.  Maybe it is regional.

I do not have OCD, but I do have ADHD.

I have a non-POTS sensitivity to perfumes (all artificial scents).  Could be the case with you, or not.  What about when you cook?  Same problem?  Is it certain cooking foods or all cooking foods?  For example, maybe there are compounds released to the air when frying things.

I had a gastric endoscopy once.  While waiting my turn to be scoped I had to sit on a gurney with an alligator clip HR monitor on my finger.  Every 5 minutes or so it would start beeping because it couldn't find a pulse.  This was caused by my long skinny fingers.  They get cold, veins constrict, pulse gets fainter.  The nurse on duty showed me how to turn off the warning, after it was clear what was going on.

You're seeing them in your field of vision?  It could be low oxygen, or perhaps floaters in your eyeball, or a migraine prodrome, or possibly many other things.  Do they move independently of your eyes, or are they always in the same quadrant and location no matter where you look?

I hate compression hose, but they do help.  Thigh highs have the benefit of not needing to be pulled down to use the toilet, but you might need a higher compression level for them.  All the good brands/styles that are made with comfortable fabrics (that don't make my legs itch and hurt) are expensive.  Your insurance may or may not cover them (mine doesn't). 

Open toe stockings are easier to put on, because you can get a little silky slipper sock thingy to help your feet slide in, and then pull it out through the toe.  Plus, toenails making holes in $100 stockings is more than a little annoying.  Many of the companies also sell rubber gloves to help get them on.  They prevent fingernail holes, too.

Colors:  Plain boring "nude" colored hose can be dyed with acid dyes if they are predominantly made from nylon.  I have done this a few times with Sigvaris Eversheer.  Either buy proper acid dyes from a company like Jacquard or Dharma Trading Company, or else use food color and vinegar.  Experiment on cheap nylon knee highs first, though, if you want a specific color.

Juzo has nice soft cottony fabrics in entertaining colors, and Sigvaris has a style called Eversheer, which is as close to nylon hose as I have ever seen, yet is still effective.  Those are my favorite brands, although I hate to wear them and do my best to avoid them.

You could try thigh high stockings.  I prefer them to waist high because 1) I don't risk tearing them every time I have to use a toilet, and 2) they don't have a waistband to roll into a little tube around my waist.  That having been said, I hate compression stockings.  They work well, but I hate putting them on and I hate they way they feel and I hate the price you have to pay for comfortable ones.

Perhaps your sensory processing issue sets off your POTS and is not the same disorder.  I have major problems with perfumes, but not with the same effects that you describe.  What happens if you wear earplugs to dampen the sound a little?