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About futurehope

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    Clermont, Florida
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    the Lord Jesus Christ, reading, literature

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  1. I would like to add how I view my POTS problems. I look at all my symptoms as if, for example, I broke my arm and as a result, I have to rehab it. Something went wrong in the functioning of my body, and I needed to work to relearn how to live with POTS. It has been difficult and much work. After all, I used to be able to do all sorts of things before POTS took over. The older I became, the worse the POTS got. When I was younger, I was relatively normal. I had my odd symptoms, but I could still participate in life. After resurrecting this thread from Lemonsin2lemonade, I have to agree with
  2. Kay1027, I have the same reactions as you. I exercise and probably will continue to, but do not notice that it helps, or that I can do it anywhere near as easily (without the rebound fatigue) that I could 30 years ago. I always say, the exercise has allowed me to exercise, but has not cured my POTS. My body is malfunctioning and no amount of exercise cures it. But...........there are a few things a bit better. I can exercise vertically and for longer periods of time than I used to. My resting heart rate has decreased somewhat. I do wonder if I am injuring myself by pushing and doing what I
  3. I take extra good care of my teeth because of my dry mouth. I have had several root canals, along with infection after a tooth extraction, for which I needed two courses of abx. For me, when questioning whether to have a tooth with a rotted nerve removed, my answer will always be "yes". I would not want to fiddle with a dead tooth which has rotted material in it. The root canal cleans it out and allow the hole to be filled with an inert substance. This allows the tooth to be saved. Your best bet is to take as good care of your teeth as you can, not allowing food to remain on them, and to ha
  4. Since this thread has taken a turn towards gallbladders, I'll add my two cents. I had my gallbladder out because of thickened walls, which denotes inflammation or malfunction. I felt pain every day from it towards the end, no matter what I ate. I did not have stones in my bladder. It probably was not functioning though. I have no regrets. I do not like the idea of walking around in pain and avoiding fat. I'm saying this even though my reaction to the surgical meds was a nightmare. I have MCAS and am sensitive to anesthesia and pain meds. They make me extremely ill. So, in my case, I do
  5. What is this doctor's specialty? When you spoke to the office, did you speak to the doctor himself or the receptionist? Did you ask about the doctor's experience with "postural orthostatic tachycardia syndrome", "dysautonomia", or did you just say "POTS"? The answers to the above questions would help me know whether this doctor and you are really discussing the same thing. There is some sort of a POTS diagnosis that has to do with tuberculosis.
  6. Hi, Ana! Great news! I'm still on my POTS, MCAS journey and have not improved enough to talk about it. I exercise daily for 40 minutes - 1 hour with a treadmill and weights. So far, no improvement. I'm still way more fatigued than I would like to be. I am beginning a benzodiazepine soon to see if I benefit. All in all my life from beginning to end has been a deterioration. I used to have good times in between the attacks. Now, I have some symptom or another daily. But I have never lost hope. I'm working with Dr. Afrin now with the benzo. I love to hear success stories. It is diffic
  7. My mast cell doctor and I are beginning an experiment with benzos with me. I had told him that in the past that a benzo had helped my POTS symptoms, but that after a few weeks, I would notice a "wearing off" when it came time for a new dose. This made me nervous about developing a dependence, so I stopped taking it. I am very willing to try different benzos, and will be starting with Ativan 2X/day at a very low dose. I will do this because I have been suffering with my medical complaints for years and it was only recently that I was diagnosed with MCAS and I now have a knowledgable doctor.
  8. I was at Charleston in July and Myrtle Beach in August. Not good. 30 seconds outside in it and I would quickly deteriorate into a "weak" attack. I would feel too fatigued to talk, to move, to do anything. There is nothing to do but to prevent it. I blame it on my mast cell disease, and that my mast cells trigger in the heat. I am useless in heat. If I am very lucky, I can get myself wet and stay that way before having a meltdown. Avoidance is the key. If I did need to remain outside in it, I would wind up on a stretcher at the ER.
  9. I do not think anyone on this forum can predict your response to exercise. After 6 months of Dr. Levine's program with an additional 3 months, for a total of 6 months, my rhr is 77, so you are doing better in that area than I am. Then again, I'm 61 years old.
  10. Well, if I compare my exercise ability from six months ago to now, it is obvious that I am capable of doing more exercise for longer intervals. Doing exercise allowed me to have more periods of orthostatic tolerance, meaning I was less dizzy and capable of sitting and standing for longer intervals than before training. For me personally, I feel exhausted lately. Maybe I have been doing too much exercise for me? As time went on, if I wanted to increase my heartrate to the correct exercise zone, I had to increase my incline or go faster. IOW, my heart was getting more conditioned, so I neede
  11. I found it very difficult, but I did it. I must be a masochist.
  12. You can't find it anywhere. He only shares it with people who are in his study. In my case, I was too old to officially be in his study, but he sent my cardiologist the program, who then shared it with me. You have to be under the care of a cardiologist or a physician who is willing to monitor you. Dr. Levine will share the program with them.
  13. FYI, I will be 61 years old in a few days, and I have had severe POTS symptoms, that necessitated withdrawing from the workplace since 2003. I have had strange symptoms and problems throughout my life but I finally obtained a medical reason for much of my suffering. I was diagnosed with Mast Cell Activation Syndrome this year. After a cardiac work-up, I was given Dr. Levine's three month exercise program that he has suggested for POTS patients. Dr. Levine is a cardiologist. After the three month program, I was given an additional three month suggested cardio work out (by Dr. Levine's office
  14. @Jangle, I had no idea that positive Achr antibodies were associated with POTS. Mine have been elevated for years, but my neurologist and the testing they did on me do not show evidence of Mysathenia Gravis. I am wondering why my neurologist never told me they are associated with POTS? Is this a recent finding?
  15. I have been diagnosed with MCAS. It is the only syndrome that explains the varied symptoms I've had over many years-----so much for POTS gets better as time goes on...... I cannot wait to find out which medication regiment keeps me feeling best. It is exciting to realize that we are on the cutting edge of identifying the cause and the help for many disorders. I am glad to be a patient of an MCAS specialist.
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