Dr. Diana,
I appreciate your distinction between POTS and Dysautonomia. I think this is a very crucial step in getting better care…
Last night Austin came into our room about and hour after we all went to bed. He was having great difficulty breathing, he lay on our bed struggling to get each breath but doing a great job to remain as calm as possible so as not to aggravate the issue, he was very pale (he is very pale anyways…) and it was as if his rib cage or diaphragm were contracting…like spasms… I could feel his trunk go super hard on and off.
Thank you Dr. Diana, for all you do!
Terri Lynn
Hi Terri Lynn, This breaks my heart. Your son sounds so much like mine… I will tell you that difficulty breathing was my first symptom — and it was horrific. When it hit, NOTHING helped. Even in my sleep, my breathing was VERY rapid and shallow (scaring the pants off of my husband as he laid there counting my respirations). I knew if it was happening as I slept, it was likely neurological, and I took it from there. My son had episodes of difficulty breathing at age 3 or 4. Of course they assume asthma, but I knew they were missing something. If he feels like he’s spasming, your doctor will probably want to be sure he is getting a TON of magnesium. Even when our blood levels are “normal”, it is low in each of our cells. Epsom salt baths help with that, too. Over time, my improved, as did my son’s, and I can’t say if treating the low pressure hydrocephalus or the mast cell treatment, the combo of each, or just time helped. Has he tried any of those treatments yet?
I had every single one of the symptoms you listed, but believe I’ve figured out why we tend to slide downhill. I’m bringing in other researchers to get this out as fast as possible, as it can help not only our children and us, but so many other conditions as well.
Big hug, Diana