yogini

It's been studied. See for example here: https://www.ncbi.nlm.nih.gov/pubmed/19015909

You are correct in questioning whether florinef makes sense for you. It is not an easy drug to go on or go off. 6 weeks seems like a long time, but it might make sense to just wait. Personally if I had high BP and I were just starting my journey, it wouldn't be the first drug I'd want to try.

Thank you! I have been looking for something which isn't an aerosol and which isn't heavy to carry around

Um, the only person saying that he invented the surgery is him. You’d think they’d have at least quoted his doctor if it were true, and that it would be written up in all kinds of medical articles . Don’t think I questioned his illness or recovery in any of my posts above, so not sure why you’d ask that. 🙄

And you believe the used car salesman when he's the one that says he invited a surgery, lol???? Let's agree to disagree.

He has a rare adrenal condition called bilateral adrenal medullary hyperplasia so the POTS treatments would not work. I'm guessing he is trying to promote his business and career as a motivational speaker through the hyperbole. It is a lot more interesting to hear a speaker who "invented a surgery" than one who simply navigated his way through the system to improve from a rare illness.

I agree he was his own hero, and it is always inspirational to hear about anyone's recovery. But I've read dozens of stories about people recovering from dysautonomia over the years - all of whom were their own heroes, came up with their own treatments and went through incredible struggles - but have never seen a story presented in this in this tone. "I discovered a category of illnesses", "I invented a surgery", etc. I found it a bit off-putting and strange.

Article says he has bilateral adrenal medullary hyperplasia.

If your symptoms sound similar to the person in the article, it might make sense to look into this condition (or related conditions). But even he kept his adrenals. As Lindsay delved into more medical literature, he found only 32 recorded cases of bilateral adrenal medullary hyperplasia.

Yes, infuriating.

You should contact Doug Lindsey and see if he can connect you with his doctors. He says he's dedicated to helping other patients. I'm not sure removing the adrenal glands make sense - but perhaps there is a way to slow them down that your doctor isn't aware of.

He got dysautonomia a few years before me. At the time of my diagnosis, there was already this forum and a few other forums that have been around for years. Dysautonomia as a condition has been around for quite a while. I could believe that he didn't get the right medial advice, but as soon as he made the connection to autonomic disorders, his story gets strange -- watch his Ted Talk. We all have to take control of our healthcare and guide our doctors, but none of us have discovered this condition ourselves or a cure.

I am not sure what to think about this article. Glad the patient is better and helping people but doesn't sound totally medically accurate. https://www.cnn.com/2019/07/27/health/doug-lindsay-invented-surgery-trnd/index.html This college dropout was bedridden for 11 years. Then he invented a surgery and cured himself

Most of us with dysautonomia when symptomatic spend all day in bed or on he couch. Badminton wouldn't be an option - we are lucky to make it out of bed to go to the bathroom without feeling ill. What you are describing sounds quite different, so you may want to consider other causes in addition to dysautnomia. I hope you are able to find a doctor to bring you to a diagnosis. Hang in there and hope you feel better soon.

If you have fatigue and dizziness without HR and BP issues or orthostasis (increased symptoms when standing), it might make sense to look into causes other than dysautonomia.

Your heart rate seems totally normal (in the normal range, not indicative of POTS no symptoms when standing). Checking it might be making you worry needlessly. Changing antidepressants is rough on the body, so that also might be factoring into it. Hope you feel better soon.

Orthostatic hypotension if there is a sustained decrease in blood pressure when standing.

That's awesome. If you keep doing it I am sure you will continue to improve. maybe if you add in the lean against the wall exercise regularly and try to increase it-even by 30 second increments - you might be able to improve your tolerance to being upright over time.

How long have you been doing it for? And are any of your other symptoms better - like sleep, etc.? Have you tried the leaning against the wall exercise?

Electrical signals can interfere with the measurement so sometimes there are blips. Or maybe you sat down for a sec? Do you remember what you were doing?

I will add that in retrospect I wish I had never done cardio. It's just not well-suited for my body. Other people have a lot of success with it. Try a few things and find what works.

Not sure how bad things are for you and I had a sudden onset and I couldn't walk around the block when I first got POTS. Though I didn't faint I just got extremely out of breath. I would literally practice standing, doing the leaning against the wall exercise. I got a stretching video and did exercises on the floor. I would be winded after doing 5 minutes. I also practiced walking up and down the hallway of my apartment building. Gradually the stretching got easier and I could make it through a 30 minute video. Then I switched to swimming, bike, same thing - 5 minutes at a time. I used to have to sleep through the whole weekend to recover. My advice is go slow. Meet your body where it is and hopefully over time you'll feel better. Now I'm not on any meds and can do advanced yoga.

Have you had a sleep study? Maybe you have sleep apnea?

Sorry you are having such a hard time getting a diagnosis. I've been told by my doctor (and have generally read) that a HR of 60-100 bpm is normal. It is a healthy response to have an increase from sitting to standing of 15-20bpm. So the heart rate you're describing may not be related to what's causing you to feel ill right now. The low temperature does sound concerning and I think a doctor would have to take you seriously.. Maybe if you make an appointment and just bring that up, that would push the envelope? Also, if your doctor isn't helpful maybe there is another one in your area you could switch to?

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