Are you treating your POTS with salt, fluid loading, Midodrine/Mestinon, and Florinef, but still suffering? Do you feel ill even when you are reclined? If so, looking for the medical cause of your symptoms may be critical for recovery, as it was for Dr. Diana Driscoll and her children.
Diana Driscoll, OD (now Clinical Director of POTS Care) penned The Driscoll Theory with contributions from other physicians and patients, as answers to POTS and similar invisible illnesses came to light. The Driscoll Theory was the first to reveal many aspects of EDS/POTS that had been previously missed – and left untreated in the majority of patients. Importantly, these commonalities suggested an entirely different etiology for most cases of POTS. Typical theories of POTS being due to deconditioning, poor diet, poor attitude, gradual laxity of tissue and vessels, or hypervigilance fall short when the true underlying problems are located.
Looking beyond anatomy and genetic laxity in connective tissue disorders to conditions causing increased weakness of tissue over time is also critical. Most importantly, these new thoughts also point to new, and dramatically different treatment options for patients.
Take a look at the Introduction to see how Dr. Driscoll’s journey played out:
“You and your kids need neck fusions, Chiari surgeries, lumbar punctures and brain shunts.
Drink lots of water, eat lots of salt, take pain medication and antidepressants.”
These were the instructions given our family and most EDS/POTS patients (Ehlers-Danlos syndrome/Postural Orthostatic Tachycardia Syndrome), and we were horrified at the prospect of putting our children through such invasive surgery. We were desperate, like many of you. But because our son and I seemed fine prior to viruses and because our daughter had headaches her entire life, we were reluctant to accept the hypothesis of “gradual laxity of ligaments over time” as the cause of our symptoms. We left the specialist’s office, strongly suspecting that something was being missed. But what?
This is the story of how we were able to forego many “traditional treatments”, avoid invasive procedures and ultimately, successfully manage our condition.
The Driscoll Theory is now understood and validated by key experts in EDS (video here) and begins to tell the story about POTS and related “invisible illnesses” often involve abnormal intracranial pressure, vagus nerve problems, inflammatory conditions, and problems with the immune system. By locating the underlying medical cause(s) and treating accordingly, recovery from POTS is possible. Dr. Driscoll and her children and the many patients they help at POTS Care can testify to that!
A word from Dr. Driscoll:
The journey for answers to my completely disabling POTS and that of my children, encompassed over ten years of study and personal suffering. This is not a journey I would wish on anyone (nor want to repeat), but it did result in answers that I hope can help you and dramatically push ahead the understanding of many invisible illnesses.
In the search for answers, we need to stay firmly in the science for every patient, but we need to dig deep and never assume conditions are psychosomatic merely because we don’t initially understand them. One of the worst aspects of this condition for my family and I was the lack of validation for an extraordinary amount of suffering. We were incredibly ill, but because the doctors had no real answers, many easily discounted the severity of our symptoms. No patient’s suffering should be minimized by their physicians because they don’t understand the illness. I have no doubt that in a decade, we will look back at POTS and related conditions and know how badly we missed the mark for these patients. We will have objective markers of illness in hand reflecting the severity of the illness– we will no longer be guessing. In fact, we are doing this every day at POTS Care.
Gentle hugs to you all,
The Driscoll Theory can be found here. If you are a patient and unable to afford a copy of the e-book, we are happy to send one your way. Please contact us through www.POTSCare.com and we'll get it to you! For those of you who are able to purchase a copy, we thank you! 100% of the profits go to the studies of Genetic Disease Investigators, LLC – the group that has conducted numerous studies on invisible illnesses and currently has two active studies going on today.
For more information on previous studies by Genetic Disease Investigators, LLC you may enjoy seeing the research page at www.POTSCare.com/research/
Dr. Diana Driscoll is now working full time at POTS Care. A recovered POTS/EDS patient, and mom of children who have now also recovered, she has been instrumental in finding the underlying medical conditions responsible for this and other potentially disabling “invisible” illnesses.