So I'm new here, but I've had dysautonomia symptoms my whole life - everything from panic attacks as a kid to not being able to breathe because my diaphragm would "lock" to heat intolerance to palpitations to cold feet/hands (Raynaud's) to wonky BP to unexplained fatigue to IBS to you name it. I've always been weird and it's been pretty rough at times.
I had a big meltdown in 2013 when I was 55 after a dental episode and there were lots of theories such as mercury toxicity to adrenal fatigue to chronic fatigue to MVP/Dysautonomia. Things like brain tumors and Addison's Disease were ruled out and I was pretty much left on my own to figure it out with my family doc who was amazing. I started researching dysautonomia more and reached out to Dr. Grubb's office, but at that time there was a two year waiting list, but his PA was great and sent a lot of info to me and my doctor. I had an echo cardiogram which did not show MVP, but if I go to a doc in a.m. without drinking enough water they always hear a click. I never had a ttt or any other dysautonomia tests, but she created a protocol based on Dr. Grubb's info and her own research etc. that has worked pretty well. I was able to return to work after about 9 month on the couch, but have never regained all my strength back. I can control the BP/HR pretty well with salt water and magnesium, too. I also have fibromyalgia/trigger points so that is also a part of the picture and it makes it hard to tease out sometimes the source and and the remedy for a symptom.
So this winter I got a virus and lost my voice for 4 days. The hoarseness has been stubborn and a speech pathologist dx me with Muscle Tension Dysphonia and I'm currently in speech therapy, but its NOT getting better, but I have to admit that I'm not doing everything I'm supposed to, and I'm a music teacher and have used my voice improperly for decades, so maybe she is right and it is what I have?
I happened to stumble onto the Vanderbilt page on dysautonomia this evening and read about Multiple System Atrophy and one of the symptoms is hoarseness. And most of the other symptoms are so similar to POTS and MVP/Dysautonomia. It also says difficulty in swallowing, and I've had that all my life, too - can never swallow pills, my husband has always teased me about that. And it mentions sleep apnea which I was just dx with, but my mom had it and my sis has it with CNS episodes along with obstructive episodes. In a sleep study about 25 years ago I was dx with a mild level mixed CNS/OSA and I declined to get a CPAP, so it's not really a new thing, although I now have moderate to severe mixed CNS/OSA and am using an oral appliance that is working really well. (My sleep dentist has found that CNS apneas greatly decrease when the OSA's are corrected by the appliance, and says the brain starts to figure it out again.)
MSA has a terrible prognosis and says life expectancy of 7-10 years. My meltdown was almost 7 years ago and I've had so many of these symptoms since my earliest memories. One thing I do not seem to have is the high blood pressure while laying down, which everything I read seems to list as a hallmark symptom.
I'm freaking out - but the timing on all of this doesn't seem to match up with a 7-10 year survival rate since almost everything it lists has been with me all my life. Has anyone else compared POTS to MSA or Pure Autonomic Failure (PAF) and thought they have a heck of a lot in common?