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About abnel

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  1. Thanks so much for sharing. It's great to hear you have had some improvements. I am one of those potsies who feels better when I move around and worse when I stay in any position for too long. I get dizzier and more short of breath the longer I stay in any one position. I think this is part of the reason why exercise might help me. I now exercise for 1 hour every day. It took my 8 months to build up to this point. I do not exercise in the heart rate zones that the levine people do, but regular, lighter cardio works better for me. It is not a cure, but it has helped me manage my symptoms. We a
  2. I always have (even b4 POTS) had higher than reference range testosterone levels but don't have excessive body hair. No doctor can explain this to me. I have no idea what it means and would love to know if it is significant.
  3. Katybug, I would be keen to participate if your neuro ever nails down a Pulmonologist to do some research regarding this issue. It is my worst symptom, but I'm doing a lot better now I'm taking Singulair and H1/H2 blockers. Only problem with participation is that I'm not U.S based.
  4. Linda, my husband also has a mild form of dysautonomia. He was recovering from Glandular Fever when I first met him and he was always exhausted, was both heat and cold intolerant, had a racing heart and odd breathing patterns for at least the first 18 months to 2 years after we met. Then slowly over a period of around 8 years he got better and better. Then I got sick! I have wondered if it is something to do with our house... He tells me he has never regained his pre-Glandular fever health. He looks normal, holds a stressful full time job, but I know he's not like "normal" people as he comes h
  5. Fludrocortisone can cause low potassium levels. One of the symptoms of hypokalemia is shortness of breath. There is a direct correlation between my potassium levels and my shortness of breath. The more hypokalemic I am, the worse my shortness of breath. I've always had some breathing issues since POTS, but they became much worse after I started Florinef, even after I started supplementing with potassium. I'm still not sure if it's related to a low grade allergic reaction I am having to the Florinef, or if it's just coincidence. I am hoping to go off Florinef completely to try and get this figu
  6. I went ahead and bought one first, then went back to my doc and told him how helpful it had been and asked if he could please write me a letter of referral so I could claim it on insurance. He agreed and wrote a letter so I claimed it on insurance. Unfortunately my insurer doesn't cover this health aid so I paid for the whole thing, but I don't regret purchasing it. It has been a life saver on several occasions.
  7. I think Naomi is onto something. When we're at home we make our environment as comfortable as possible to live in. When we leave the house we have no control over the temperature and barometric pressure. I am sure that is why I sometimes feel worse outside than inside, because my body is supersensitive to barometric, temperature and humidity changes.
  8. Great topic everyone, and something I've been wondering about for a long time too. I am also a singer (trained with an opera singer for a time), so I know how to project and sing using the diaphram. I am also a soprano, but had a lot of trouble with my head voice rather than my chest voice. I am so happy that since I started taking Singulair I've noticed I've been able to start singing in my head voice again and I can even sing a high G above middle C on a good day (which isn't that high really for a soprano but is a lot higher than I could sing before I started my meds). Issie, are you taking
  9. So the hospital (Patient Liaison Officer/ER Manager) wouldn't take it any further with the 2nd doctor?? I wouldn't be put off by the fact you have already reported the first to the AHPRA. You have a legitimate complaint and you have evidence of the horrid things he has been thinking and saying given he wrote to your GP. These doctors sound unhinged - probably overworked and stressed out - not that that excuses a thing! I would press ahead and report the whole matter to the MPB, giving them a chronological account like you have here of what has taken place. I feel for you because when we are at
  10. Endure, that is just awful. I had a bad experience with a doctor once and I contacted the patient liaison officer (can't remember her exact title) and she was wonderful at helping me with my complaint even though she was an employee of the hospital. I was worried that she could have a conflict of interest but she was totally pro-patient care, and interviewed the doctor involved about my situation. I also complained to the Medical Practitioners Board in Victoria. In the end they did not make adverse findings against the surgeon but the whole investigation/interview process with him would have g
  11. Best of luck Sue, I hope you find some answers. You've been very dedicated to finding answer for a long time now and I hope it pays off...
  12. I voted but wanted to add that my breathing is worst of all during meals. I often feel like I can't take a proper breath while eating. Sometimes it's the food I'm eating, other times it's just my lungs don't seem to want to co-operate while I have food in my mouth. I have to force myself to keep breathing through it all. Warm and/or humid air or very cold air is not good for my lungs. My breathing problems do not directly correlate with how severe my POTS/orthostatic intolerance is. I can be having a great day POTS-wise and can stand for longer periods with no racing heart and do some decent e
  13. Tachyfor50years and blinkofani, Yes!, I have this too! I am so glad I am not alone as I have been feeing like there is no one else with POTS who experiences anything like this. I have had POTs for nearly 2 1/2 years now, and this symptom only got really bad last year, following a very nasty gut infection. While I am eating, it actually feels like I am going to suffocate. It is terrifying sometimes. I usually prefer to eat alone, as I can rarely eat around others and talk at the same time. When I was at my worst, I had to take deep gulps of air in the middle of chewing my food. Someone else on
  14. 1. Yes, even through relapses, even if it's as little as 2-5 minutes a day. 2. Yes, I feel better when I work the whole body. Still not able to use the eliptical machine, but hopefully I'll get there one day. 3. Yes, during the first 18 months. No, for the past 6 months - I suspect I am now exercising with a higher HR than before and can tolerate it better because I changed the exercise I am doing. 4. No, I prefer upright exercise. 5. Yes, but even better from strengthening my legs. Most men seem to already have the strength in the legs, so working the upper body is probably an added bonus. Fo
  15. Hawthorn is the one thing that helps me during adrenal surges (together with ice on my feet and back of my neck). It helps my body cope better with the forceful and fast heart beats. I take it all day (sip Hawthorn tea) when I am having a bad day of tachycardia. I only use it on an as required basis for those really bad times.
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