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Lily

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Everything posted by Lily

  1. I have always been able to see surface veins (very light skin), but when I stand up you can see the veins in my feet distending and standing out from my skin. Its pretty nifty to watch. My hand veins do it, too.
  2. Interesting. When I overdo it, I get all the physical symptoms you mentioned but not any emotional symptoms. Just normal annoyance at my body. When I do get depressed is during a migraine.
  3. I would tell all this to your doctor at your next appointment, or even call and leave a message about it today. You made a reasoned decision to try Midodrine, and it doesn't work nearly as well as Florinef, and you want to go back to F. Since it works so well for you, perhaps increased attention to weightlifting and intake of calcium, and vitamins D and K would be a reasonable alternate to not taking it. My mom managed to reverse osteopenia by eating lots and lots of dairy products, so surely we younger folks can, too!
  4. I take the XR version, which lasts for 8 hours or so. I also take Wellbutrin, and taking a non-stimulant along with a stimulant can help decrease the necessary dose and also make the wear-off period more gradual. I usually do not notice when it wears off, but it is noticable when it gets to my brain in the morning.
  5. I take clonidine to knock my sympathetic nervous system down a little.
  6. I'm also on Adderall, which is in the same class as dexamphetamine. It works well for my ADHD, and I think it helps my poor deficient blood vessels to contract more than they otherwise would. It does not cause tachycardia episodes for me.
  7. I tend to have sleep maintenance insomnia. Why? Stress is definitely a factor, but also I'm in perimenopause, I have to pee frequently (I take desmopressin at night for that now), and I have 2 cats.
  8. I have ADHD. The medications help immensely. It is all about executive functioning. With meds I can easily see how tasks should be prioritized. It is much much easier to get started on tasks, too. It is easier to not be impulsive and to sustain my attention span on only one thing at a time. Everything is clearer. ADHD symptoms feel very different than POTS-induced brain fog.
  9. Probably you should do whatever you can, even if it is only the tiniest amount of recumbent exercise. Alternating leg lifts while lying down, add one more each day. Something like that is better than nothing. You might feel terrible at first, but exercise helps in a long-term manner if you're consistent.
  10. I downloaded it and read it with interest. The focus on heart rate zones and the use of different zones throughout the week is consistent with various training programs I have seen in other contexts, such as training for a race. I didn't see anything in the document about where to start if you already can do upright exercise. Or is this protocol only for people who are quite badly off? All my doctor told me was to do "cardio against resistance" and to work up to 30 minutes 3 times per week. When I said that I can already do that (although I am very inconsistent at actually doing it), he said I can just exercise however I want to, as long as I keep doing it. Now if only I can figure out how to get myself to exercise consistently....
  11. I spent some time at 7,800 or so feet last summer with 2 other POTSies and 5 non-POTS people. All the adults got a bit of a headache and were more easily winded than usual for a day or 2, and that was it. Kids did not seem to be affected at all.
  12. Scout, as for how to move forward, my advice depends on whether or not you share living quarters with the difficult people. If yes, you will have to keep educating them and advocating for yourself. If not, stop talking to them about it and just do what you need to do. In both cases, you might be able to help yourself with some stress by deciding that they are not capable at the moment of giving you what you need (affirmation, believing you, etc.), and stop wanting it from them.
  13. My plasma NE was very high during the TTT, but my doctor thinks it is in reaction to low blood volume and blood pooling rather than primary hyperPOTS. Florinef helps me feel much better. Whether it is for you or not depends on the mechanism that causes your POTS.
  14. It keeps my sympathetic nervous system in check.
  15. It might also help just to remind yourself that you are not psychologically anxious, but rather your body is malfunctioning.
  16. You might try drinking your sodium. Mix up a teaspoon of table salt (for 2.3 grams of sodium) in a glass of water with maybe 1/4 cup of juice. You can also find recipes online for oral rehydration solutions like the WHO uses. I have posted my favorite several times here in different threads about the topic. It will taste nasty (until you get used to the flavor!), but I have found that getting my salt this way is much more effective than salting my food. It made a huge difference in how I feel.
  17. You can also get potassium from low sodium salt. It used potassium chloride instead of sodium chloride. Perhaps consider mixing the two together in your salt shaker.
  18. Yes, I fit your request! I'm a 46 year old tenured college professor (so employed full time +). I have 2 cats, no kids or spouse, and my only limit on exercise is difficulty keeping up the habit of doing it. I have never been bed ridden or house bound due to POTS. Constant grinding fatigue, yes. Inability to live normally, no. POTS sneaked up on me gradually rather than starting suddenly after an illness, and I suspect that the Strattera I was on for ADHD might have had something to do with it (or at least the hyperandrenergic part, as Strattera is a norepinepherine (NE) reuptake inhibitor and too much NE in the nerve synapse can leak out into the blood stream). I thought last year that my POTS was getting worse, but now that I am on Adderall instead of Strattera I suspect that the Strattera was jacking up my sympathetic nervous system and complicating the POTS. Or maybe the Adderall is helping my poor deficient veins to constrict appropriately. Even though my plasma NE was very high during the tilt table test, the treatments that have helped me the most are the ones for increasing blood volume and controlling blood pooling. My job requires at least some standing, but I have the flexibility to teach while sitting if I like. Lectures are more sit-friendly than labs, but so far I have been able to make it do-able. My research is primarily in salt marshes, which results in low level walking and carrying once in a while, followed by laboratory analysis. I regularly work with my feet up on my desk in my office. I am on several medications plus a high salt diet. Compression hose helps, but not enough to make me want to wear it. Abdominal compression alone actually works better (I just use normal high waisted panty slimmers, not medical gear). Summer is a bit difficult when the heat and humidity are both high, but every building around here has air conditioning. For exercise, I am capable of doing 60 minutes of low level cardio, but I prefer weighlifting, outdoor cardio, and evolutionary fitness. My POTS doctor said I can do whatever exercise I like, as long as I exercise. In short, my POTS does not seem to be getting worse and I can live normally. You are not necessarily doomed to getting worse either. Also consider that if you search the internet a bit you can find some POTSies who run marathons and stuff like that. It seems to me that the worst thing you can do when you have mild POTS is to stop exercising and rest a lot.
  19. Adding to the data: I do not have problems flying as long as I drink enough water.
  20. 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.
  21. 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.
  22. 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.
  23. 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.
  24. 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!
  25. 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.
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