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Lily

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About Lily

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  1. I have these sometimes. It turns out that I have Incomplete Right Bundle Branch Block, which is a normal variant and can cause them. They turned out to be harmless (but annoying).
  2. Remember that there are several different mechanisms that cause the same set of symptoms (which we call POTS). For example and not all-inclusive: some people have a lot of blood pooling, others have weird reactions to histamines, others have low blood volume. The commonality is a malfunctioning autonomic nervous system. So you could have POTS and not have blood pooling.
  3. My feet turn a mauve-pink color. I tought that was normal (I'm standing on them, after all!) until my doctor pointed it out during the TTT.
  4. Lily

    Sleep Apnea diagnosis

    My dad was given the choice of losing weight or using a cpap. He gave the cpap back after one night and worked at losing weight instead (which did decrease is snoring).
  5. If you are under Great Britain's health system, you might have to make do for a while with what you can do without a prescription. That health system seems to be unconscionably slow. Anyway, if you have POTS the first line treatment is increasing intake of salt and water (8-10 grams of salt per day and at least 4 liters of water). You don't need a doctor to tell you to try it. Some people benefit more if some of that salt and water is in the form of Pedialyte (or a homemade facsimile thereof). Tensing your leg muscles when you are standing or sitting and feeling symptoms come on can help. Doing some kind of cardio against resistance (like cycling, swimming, or elliptical trainer) helps to improve leg muscle tone, which helps to keep blood from pooling in your legs. Do what you can each day even if it's just 1 minute of air cycling in bed. Then do a little more than that tomorrow. For motivation, here is a woman with POTS who runs marathons: https://themighty.com/2017/07/pots-dysautonomia-working-out-running/ This one does ultramarathons: http://killtherun.blogspot.com/p/running-ultramarathonswith-pots.html If you feel symptoms after eating (blood rushes to your stomach to help with digestion), then eat smaller meals more often. Some people feel better after eliminating certain foods, like carb-rich foods or foods that contain histamine. Keeping a food and symptom diary might be worth the bother. Can you manage to not stand very much at work? Something as simple as putting your feet up on a footrest can help prevent blood from pooling in your feet. That is all I can think of for now. Try some non-prescription treatments and see if they help, but also keep pursuing the "probably POTS" diagnosis and see if you can get it clarified.
  6. Lily

    I'm new to the forum. I am scared

    There are multiple forms of dysautonomia. The connecting factor is a malfunctioning autonomic nervous system, but the mechanisms that cause the symptoms differ. Getting the diagnosis pinned down more precisely will take time, but it ought to help you find the correct treatment. There are treatments, like your doctor said about that one medication, but they do not cure the problem. Some good news: many people with POTS, for example, are able to regain some level of functioning, up to living a completely normal life. You are not necessarily doomed to a life of disability. Keep pursuing treatments and don't give up.
  7. I'm going to come at this problem form the other side: What if she is correct? If you do indeed have psychological issues with respect to food, then consulting a psychologist might be a good idea. The psychologist ought to be able to either confirm what the gastroenterologist said, or else tell you that it is not so in your case.
  8. My doctor did not take supine blood. He only drew blood after 18 minutes into tilt. My NE was 1962 ng/dL, which definitely put me into hPOTS territory. But I also have symptoms consistent with low blood volume and overly stretchy veins. The going hypothesis is that NE gets so high in response to these other failures. But anyway, there is another data point for you.
  9. I tried raising the head of my bed by about 6 inches. Much to my surprise I did not need to pee as often in the middle of the night. I can go about 6 hours now before needing to pee again. Yes, I am taking Clonidine, which helps decrease the need to pee as well. Raising the head of the bed resulted in an added effect on top of that.
  10. Lily

    Florinef

    I take Florinef, and it plus the requisite salt and water loading made a huge difference in my level of fatigue and lightheadedness. Granted, I have never been as badly off as your daughter, but I no longer worry that I won't be able to do my job. I increased the dose gradually after reading a lot of anecdotes on the internet, and I did not have any side effects. Also, my sister has been on Florinef for well over a decade (maybe 2) and as far as I know she has never had to go off of it. I suppose it depends on individual differences. Another important point I discovered is that the salt and water loading is more effective when I get some of it in the form of Pedialyte (or similar DIY mixture), about twice per week.
  11. Lily

    Be Brave

    I'd like to know, too! I'd get one if it comes in 6.5 inch circumference. Any larger and it would dangle and interfere with typing. Can you please tell us the size of your wrist and the size of the bracelet?
  12. Lily

    Exercise and heart rate

    I guess it depends on your own level of functioning and exercise intolerance. I use healthy-person perceived exertion guidelines, because I am not so badly off that I can't exercise however I want to. Others will need to monitor heart rate more precisely.
  13. I vacationed at 7,900 ft this summer. There were 6 adults and 3 kids on the trip. Three of the adults have POTS, of which 2 also have NCS and 1 CFS. Everyone got a headache the first day or 2. Most of the adults mentioned getting winded with exertion much easier than at sea level. Everyone felt normal by the end of the week. I kept checking my SpO2 on my phone, and it went from 98 - 100 % at sea level to 87 - 93%. Overall my experience was about the same as everyone else's. The extremely low humidity removed a variable that usually makes me feel poorly (dewpoint temperatures were in the mid 40's Fahrenheit, compared to 60 - 75 at home). Note that I am not as badly off as some people here (full time job, not housebound).
  14. Lily

    Hyper POTS questions

    I do not have noticeable symptoms from the regular dental pain block.
  15. Lily

    Fludrocortisone?

    I had the same concern when I started it. A lot of people on the internet reported that starting with 1/4 tablet and increasing my 1/4 tablet each week up to the prescribed dose prevented weight gain. I did it like that, and I have not gained weight.
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