Since having an unexpected emergency surgery October 1st my health has continued to get worse. I was recently diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS). It is a form of Dysautonomia and affects the autonomic nervous system which controls heart rate, blood pressure, temperature control, digestion and more. I also have Hypermobile Ehlers Danlos syndrome and the 2 conditions are known to occur together.
There is no cure or FDA approved treatment for POTS, but there are some medications that may help with the right combination given by a doctor familiar with treatment. I was referred to a cardiologist but couldn’t get an appointment until 12/31 and it’s not guaranteed that they can help. The only specialists in my state have years long waiting lists or do not take insurance. Cleveland Clinic has specialty clinics for both POTS and hEDS but cost will be between $2,500 to $6,000 depending on the treatment plan.
I am also going through neurological testing for tremors and cognitive issues as well as Orthopedic Surgeon for craniotomy-cervical instability and getting further tests for a mass on my abdominal wall.
My 13 year old son is being evaluated for hEDS because it’s a genetic condition and was diagnosed with a double curve scoliosis this week and referred to a pediatric orthopedic surgeon.
I haven’t been able to work since October 1st and didn’t have employer disability coverage. Between my son and I we have 9 Dr appointments in December plus tests and other appointments not scheduled yet.
This year has been overwhelming for our family starting with almost losing my Mom after a prolonged hospital stay then a stroke. Thankfully she has recovered more than anyone expected and is doing amazing.
Im at a point where I don’t know how to stay afloat and running out of options. Every little bit will help to ease some of the stress so that we can get better.
