chimeraskeep

Sarah Tee, omg, Dr. Novak is my doctor!! Wow! Thanks for the info!!!

Thank you, everyone, for your helpful replies!!

MikeO, It doesn't necessarily happen upon standing, but definitely when I am upright.

Hi, I was diagnosed a few years ago with dysautonomia and small fiber neuropathy. I told my neurologist I often get shortness of breath which can be partially sated by my lying down or taking kratom (an herbal powder with opiate-like effects). He told me that shortness of breath is a common complaint amongst his dysautonomia patients, but did not explain why, and said to continue taking the kratom if it is helpful. I told my PCP about it. He knows about my dysautonomia, but still commented that the shortness of breath could just be anxiety. (It seems many doctors are unimpressed by a diagnosis of dysautonomia.) Nonetheless, he gave me a lung function test, and it came back normal. Does anyone else get this shortness of breath often? Does anyone know why it occurs?

Thank you for sharing that article, Scott... So many very true statements! Highly enjoyed! God Bless all. 🤗

That's why it is important for you to see someone who specializes in dysautonomia - often it's a neurologist. If you go to the eye doctor, they're just going to diagnose whatever eye problem you might have. If you go to a gastroenterologist, they'll just focus on your stomach, you know? This is a whole-body illness, and you need someone who knows how to see the full picture. As for your wife, she sounds just a bit ignorant, meaning she just doesn't get it. Have you maybe sat down together and looked at a few dysautonomia websites together? Maybe you should even take some time to write down/list all your symptoms, and also see how they may be related to POTS/dysautonomia or syncope? Then you will be better equipped to educate her... but first and foremost, she needs to know and accept that these diagnoses are REAL, that these conditions are PHYSIOLOGICAL, NOT psychological, and you canNOT simply push through the symptoms, nor would she be able to if she were the sufferer, and her wanting for you to just push through is a cruel expectation.

Jim, I'm very sorry you are going through a tough time, but you are actually quite fortunate to have received these diagnoses. Many people with conditions like POTS just continue to go undiagnosed because it takes a keen, informed physician to spot them. It is important that you do see a doctor who specializes in dysautonomia not only for treatment, but also because often there is some underlying illness/disorder that is causing it. You may want to look into neurologists who specialize in this area unless the cardiologist you see seems thorough. I don't know what your employers are like, but perhaps it would be best to keep them informed of your doctor visits, educate them on your diagnoses, etc.? Maybe if they understand what you are suffering from, they will have empathy and try to be lenient somehow? By the same token, you also must be lenient with yourself -- It is far too easy for people in our situations to be hard on ourselves, blame ourselves, try to push ourselves beyond our limits, and tell ourselves we should somehow be in control of our symptoms, or that they are "all in the mind", as some loved ones around us insist. Advocate for yourself, and let people (e.g., your wife) know that this type of thinking is not okay. Best of luck to you!