abnel

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 are all different. It is a mystery why it helps some and makes others so much sicker. I judge no one and only replied to this thread to share my own experience. I only discovered this year that I probably have MCAS which is why everytime I tried exercising in the past I felt like I was going to stop breathing afterwards and during. I'm able to do much more exercise now that I'm on tiny doses of H1/H2 blockers and singulair which stops the near anaphalactic episodes I have during and after exercise. I know that when I was very ill unloading the dishwasher or loading my washing machine was my aerobic activity done for the day. All I think exercise has done is helped me to tolerate standing and walking for longer, and conditioned me to activities of daily life, but I still have the underlying problems which if I stopped exercising would become much worse again. Not that this is anything to scoff at, but still, it has done far less than was promised to me by my ignorant doctor who suggested all POTS was due to deconditioning.

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.

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.

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 home tired and sometimes exhausted. He sometimes feels very weak if he overdoes things and very occasionally gets the racey heart. His energy levels do not even come close to my energy levels before I got POTS. There have been a few times since I've had POTS that we've both felt pretty crappy and it's no fun as we can't look after each other, let alone ourselves. I hope your husband gets better soon or at least finds some answers. With your support he will be ahead of the game in terms of diagnosis if he has dysautonomia/Pots.

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 figured out. If you're not already supplementing with potassium it might be worthwhile getting your potassium levels checked and supplementing if you need to. I faced a lot of resistance from my doctors to the notion that FLorinef can cause potassium loss when it is printed as clear as day in all the literature. They refused to believe my low potassium was related to Florinef until more recently. I hope your SOB improves soon for you.

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.

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.

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 Singulair? I just wonder if it would help you too. It really helped with my breathing problems (which I still get, just not as badly as before). Before I started it, I could hardly sing one line in a song. Now I can finish a whole song and sometimes sing 2 or 3 more. Ofcourse if I'm having a bad day breathing wise, singing is off the cards. But at least now if I'm having a good day I can sing, especially at night (when symptoms are usually better).

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 our most vulnerable is when we should be receiving the care and attention we most need. We shouldn't be accused of falsifying how ill we feel by being told it's just in our heads.

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 given him a bit of a fright and would hopefully make him think twice before treating another patient that way. I would recommend doing this (when you're not so stressed) as it might make them think twice about how they are treating you. The patient liaison officer I saw drafted my statutory declaration for me and took care of things. I hardly had to do anything but make a statement. I think she was the one who referred the whole thing onto the Medical Practitioners Board. When the dust settles, it might also help if your liaison officer would arrange a meeting between you and senior doctor in charge of the Emergency Department to resolve the dispute as it sounds like you will need to continue to seek out their care in the future. Ofcourse this could all be way too stressful for you and believe me when I say I understand the whole anxiety thing that comes with dealing with the medical profession. I have a bad case of "white coat fever" most times now when I go into see specialists.

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...

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 exercise, but have terrible breathing issues whether I'm sitting or standing. Makes me wonder how much of it is really related to Orthostatic Intolerance.

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 this forum has Vocal Chord Dysfunction and told me that eating and breathing is also very difficult for her. I also have probable Mast Cell Activation Disorder, and occasionally my Mast Cell meds have helped when I start wheezing and reacting to the food I am eating. But other times my mast cell med's haven't helped, so I think there is something else going on. I have seen immunologist, respiratory physicians, etc, and no one can tell me why this is happening to me. The only thing that helps me when I sometimes feel like my windpipe is closing up (different to the lung congestion feeling I get which is MCAD related I think), is to try the exercises for Vocal Chord Dysfunction. Suprisingly it sometimes helps. I also have a singing technique which my opera singing teacher taught me (in pre POTS days) called the "Muti" exercise which also helps strengthen the vocal chords.

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. For women I think it is harder generally to build the upper body, and a good place to start is the lower body. 6. Definitely yes. 7. Yes, push through every time, even if it's only small amounts of exercise each day and very gradually building up. During my last crash it would take me 2-3 hours to do a gym routine that normally takes me only 1/2 an hour. I just kept perservering until I got it back down to 1/2 an hour, but it took me many months and it was very hard and left me feeling ill and exhausted afterwards.

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.