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About Lily

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  1. Lily

    What does seeing stars mean?

    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?
  2. 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.
  3. 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.
  4. Lily

    Sensory issues?

    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?
  5. Lily

    going back to work

    Katyroq, I don't have too bad a case either, but it is enough to put a damper on things. I am glad that I can work full time, even if I have a distracting level of fatigue most of the time. If you can figure out what interventions and medications help the most, and be ready to explain the condition to people who will need to know (like if your advisor doesn't understand why you want to sit down all the time), you ought to be able to work out a lifestyle that allows you to maintain an academic career.
  6. Lily

    never felt worse. :(

    Do you have any Pedialyte at home? I found that salting my food and drinking lots of water does not help much, but having some of that salt and water as Pedialyte (or a DIY recipe) makes a huge difference for me. Plus I'm on Florinef, which helps to bulk out the blood volume. I'm sure that's part of it, too.
  7. Derek, you might try Pedialyte. It has lots of sodium and potassium. I get more benefit from my DIY recipe than I do from salting my food and drinking plain water. Without having some of my salt and water this way, It is as if the salt and water are completely ineffective at making me feel less lightheaded and fatigued. Something about the sugar helping get the salt into the bloodstream perhaps? DIY Pedialyte-like drink: 1/4 teaspoon regular salt, 1/2 teaspoon low-sodium salt, enough juice for 15 - 25 grams of carbohydrates, enough water to make 1 quart (or liter) total.
  8. Lily

    going back to work

    I am a college professor, on the tenure track at a teaching-oriented university. The extreme flexibility of my job is a huge asset. I have an office, so I can work with my feet on my desk if I want to. I can take a power nap if I feel particularly terrible. If I want to teach my classes sitting cross-legged on a table instead of teaching, well, college professors are eccentric, aren't they? A lot of colleagues know that I have some kind of chronic health condition, but that it is not a problem for doing my job. I have never had to invoke the Americans With Disabilities Act, probably because I can just do any accommodations I need. Maybe something unusual will come up in the future, but the past 5 years have been fine for me.
  9. Lily

    Florinef Dosing Experiences?

    Phew! I'm so glad you double-checked.
  10. Lily

    Florinef Dosing Experiences?

    I was prescribed 0.1 mg per day. I would double-check if I were you. Also, I started with 0.05 mg per day for a week and increased by 1/4 of a tablet each week until I got to the full dose. I did this on my own recommendation after reading many anecdotes on the internet. Other people claimed that ramping up slowly prevented them from getting side effects like swelling or weight gain. I am not a doctor, I can't give medical advice, all the usual warnings, etc.
  11. Professor Lily has a lesson on barometric pressure: Barometric pressure (air pressure) is the weight of the air above you all the way to the top of the atmosphere. It is measured by an instrument called a barometer. The pressure can change from place to place and with time at the same place. Differences in air pressure are what drives winds. High pressure is caused by descending air. It moves down from above, making the pressure experienced at sea level higher than usual. Low pressure is caused by ascending air. It rises, which means at the ground the pressure experienced is lower than usual. When storms and weather fronts pass by, the barometric pressure decreases at first and then increases after it passes. Technically, pressure is the amount of potential energy per unit volume. Barometric pressure is measured in millibars (mb) according to the system of measurement units typically used by scientists. The "bar" is a unit of pressure, like pascals or pounds per square inch. Your weather station is converting pressure at the barometer to pressure at sea level ("sea level pressure"). Some weather stations do that. Here in USA we also see it expressed as "inHg" which means inches of mercury. The old barometers used a vial full of mercury that was open to the air, and it had a skinny tube pointing up. The air pressed down on the open vial of mercury and forced it up the skinny tube to a greater or lesser degree depending on the actual air pressure. Millibars and inches of mercury have different scales, and one can convert between them mathematically. So when you see the barometric pressure go from 1017 mb to 1029 mb it means that the air pressure at the location of the barometer increased by 12 millibars. It does not mean that the pressure at sea level is equal to the average pressure at 1029 meters above sea level. There is a link between pressure and altitude, but it is not what you thought it might be. Average air pressure at sea level is 1013.25 mb (29.9212 inHg). It decreases by about 12 mb for each 100 meters (328 feet) above sea level in the lowermost part of the atmosphere. At the summit of Mt. Everest (8,844 m, or 29,029 ft) the pressure is about 337 mb.
  12. Lily

    Just how dangerous is fainting?

    Bunny, I had no idea they could make cars to do all that. So cool. Reminds me of the 80s TV show Knight Rider.
  13. Lily

    Just how dangerous is fainting?

    As far as I understand, the faint itself is not dangerous. It is your body's way of restoring blood flow to your brain (get flat again so blood flow returns). As you said, it is where you faint or what you hit on the way down that can be dangerous.
  14. It helps me to put my feet up on a high footstool in front of my chair, right away before I start to feel lightheaded. I also noticed a definite difference when I started taking some of my fluids and salt as Pedialyte.
  15. Lily

    Right bundle branch block?!

    They found it while doing a standard workup for palpitations, several years prior to my POTS diagnosis (and major symptoms). I do not have symptoms from it, although the cardiologist said that IRBBB can cause palpitations. It is considered normal for me.