Hi, I’m new here.
I’m diagnosed with mild gastritis, anemia (intermittent), seronegative rheumatoid arthritis, polycystic ovarian syndrome, and a whole lot of brain-weird (depression/anziety/ect).
I’ve had syncope for a long time. The first attack I remember I was probably 10. It was a hot summer and I was riding my bike all day. People called it heat stroke, sat me down and gave me water. I remember always feeling like I was more sensitive to the sun than everyone else, but I don’t remember having another one till I was probably 12. At some point, probably around 15, it became (at least) a yearly event. I have experienced the following things over the years with the attacks: narrowing and darkening of my vision (like someone pulled the plug) as well as kinda like rainbow static), flushing (along with feeling like all the blood vessels and pores opened up on my face) pallor, sweating, nausea & vomiting, numbness & tingling (legs, arms, lower abdomen, and head), weakness, lightheadedness, ringing in the ears, lethargy & sleepiness, confusion, and generally feeling like I’m underwater (deadening of sound, feel like time slows down).
I took forever to talk to a doctor about it. The first thing that I tried to get doctors to figure out was my nausea (almost everyday in the morning, and occasionally throughout the day - with intermittent lower GI complaints - lost 20lbs pretty rapidly when it got bad). Celiac’s biopsy was negative, endoscopy found inflammation in the stomach and atrophy of the villus. The motility tests was normal. They gave me some SSRIs and Zofran.
I talked to my doctor about the heart palpitations and intermittent tachycardia. EKG found an abnormal t wave (inverted), and I was just told the 3-day monitor was inconclusive.
We did a TSH test, negative. After pregnancy I had postpartum thyroiditis and the we ran a full thyroid panel, everything that wasn’t negative returned to normal a month later.
I talked to my doctor about the pain and numbness in my hands and he sent me to a neurologist. Never conduction tests were abnormal but inconclusive. So I asked to see a rheumatologist who did x-rays of my hands and found peri-articular osteopenia, but my blood work was negative. Prednisone helped though and my family is full of RA. (I also occasionally run a low fever and pretty much feel like I got hit by a bus)
I have abnormal liver tests that come and go (probably because I had an alcohol problem for 8 years (I do not drink anymore and I hope with time those will come down again). I have had anemia off and on for the last 8 or so years.
I’m starting to feel like a lot of my issues stem from my autonomic nervous system.
I started having nausea right around the same time that the lightheadedness became s regular thing.
Since my 20s I’ve become increasingly fatigued. My joint pain started around 27.
At 30 now, I’m constantly in pain, exhausted, and looking for answers. I spoke with my doctor recently about the syncope (with a 1 year old I kinda need to get it figured out). It’s exacerbated by heat and dehydration but not specific to only the conditions (the last two bad ones I had were at 10pm and I was well hydrated). He’s going go test my heart… again. Rheumatologist sent me to a neurologist because i’m getting numbness and tingling on the regular again.
And I just realized that blood pools in my hands. And I might be crazy but I’M PSYCHED that there’s finally a glaring symptom that I can replicate over and over. (Takes a couple seconds and my hands are red, swollen, with bulging veins, disappears instantly upon raising my hands over my heart)
So I’ve started to wonder, instead of looking at the usual suspects… maybe look at the ANS.
I’m pretty sure they think I’m a hypochondriac, but I have consistent, chronic, and progressive symptoms and I WANT IT FIGURED OUT!
They effect my daily life in a big way.
I don’t know what to do other than just surrender to the medical system while they look in the same place repeatedly. I sent my doctor a message saying that I have identified the blood pooling in my hands (he told me to look for it in my feet) and at least a 30bpm increase during a syncope attack. My doctor’s nurse emailed me saying that they’re considering sending me to a POTS specialist. (Considering?)
I’m kinda feeling like… 99% certain it’s some form of dysautonomia (POTS/Orthostatic Intolerance). I wonder how much of my pain is amplified by the blood pooling. I wonder how many of my symptoms would go down if we just did something about this.
I have been having pre-syncope symptoms almost everyday for the last couple of months (to be fair, it’s hot), and two actual syncope attacks in the last week.
I’m constantly taking care of various children and I’m worried about these attacks and their safety. I try to be careful (drink lots of water, spend most of my time laying on the floor with them), but my fear at this point is that I’ll have one while picking one of them up.
Tell me if I’m crazy… but this is a problem.