Frequently Asked Questions
Is this a “one-size-fits-all” approach to treatment?
No! We find that traditional treatment of POTS (blood volume expansion, beta-blockers, antidepressants, and exercise) not only does nothing to treat the underlying medical cause of POTS; it presumes all patients are the same. Instead, we dig deep to locate what others have missed, including possible abnormalities with intracranial pressure, vagus nerve problems, immune system disorders, endocrine abnormalities, vascular issues, and abnormal inflammation.
Only by treating every patient as an individual case and moving far beyond symptomatic treatment can the majority of patients recover from Idiopathic POTS. Our job is to locate these issues as quickly and as non-invasively as possible, so that patients are no longer shuffled from specialist to specialist, with no one looking at the big picture. Not only is that approach often unsuccessful, but it can also take months or years for complete evaluations.
How does the two-month-long program work?
First, you will be with us at POTS Care for approximately 3 days for your evaluation. At the end of that time, you will leave with a preliminary treatment plan in place, medications and supplements needed, and dietary and exercise recommendations, beginning your road to recovery! You will also begin a 3 month series of audios chosen just for you to teach, inform, and coach you through the process. You will also leave with a biosensor (wearable technology) to help with anxiety and surges of adrenaline that can be common in this condition. This is the latest in biofeedback devices that although not a cure, can assist you with some symptoms.
Over the next three weeks, we evaluate your new blood work as it is available and your response to treatment thus far, and make adjustments to your treatment plan based on these results.
Three weeks later, we will have a telephone or Skype meeting to cover your detailed final treatment plan with you. At the time of this final summary, you will have copies of your record, your blood work, and your final summary. We will make sure you have all of your questions answered, and we will contact you weekly for another month should new questions arise.
This arrangement gives us the necessary time with you, yet allows you and your friends or family to return home as soon as possible. We know how difficult it can be to travel, to be away from home, and to ask others to interrupt their schedules for long periods of time. We hope this arrangement eliminates some of the frustration of multiple doctor visits with large gaps of time in between. We’d like to shorten your journey for answers to your POTS!
Who are your doctors? Are they familiar with POTS, Chronic Fatigue Syndrome/M.E., or Ehlers-Danlos syndrome?
Dr. Diana Driscoll, Clinical Director, is an EDS patient who recovered from POTS, as have her children. Dr. Diana Driscoll began studying POTS and running numerous clinical trials when traditional treatment for POTS failed her and her children, and she was convinced there were medical reasons for their illness. Dr. Diana Driscoll together with her husband, Dr. Rich Driscoll, established Genetic Disease Investigators, LLC to conduct studies and began finding answers via unique ocular testing. You may know Dr. Diana Driscoll from her site www.Prettyill.com where she provides informational videos concerning EDS (Ehlers-Danlos syndrome), mast cell activation disorders, chronic fatigue, hyperadrenergic POTS, and other forms of dysautonomia and POTS. She has worked tirelessly to promote awareness and education concerning these conditions, is recognized as the first person to use the now common #EDS hashtag on Twitter, and has reached out to help others on her forum at Prettyill.com, now known worldwide. See Dr. Driscoll’s complete CV here.
Does your treatment plan involve high doses of salt and fluids, beta-blockers and blood-expanders?
No. Traditionally, these medications have been recommended for symptomatic relief of POTS, but these medications do not address the underlying medical problem resulting in POTS. Depending upon the underlying cause(s) of your case of POTS, these medications may actually be worsening your condition. Sometimes helpful for patients in the short-term, we do not recommend them for long-term management. Instead, our effort will go towards locating and treating the underlying cause of POTS and its numerous comorbid conditions.
Is this treatment centered around biofeedback training?
No. Biofeedback is included for you and it can be helpful to control some aspects of POTS, especially when surges of some chemicals cause a “hyperadrenergic” response of the body. These surges can easily be diagnosed as “anxiety” by the uninformed. At POTS Care, we focus on the medical problems that contribute to POTS and utilize the latest in wearable technology (a form of biofeedback that goes with you) to help control these surges. We find that biofeedback alone is insufficient for recovery.
I don’t feel well and I worry about too much walking, standing or even thinking! How exhausting is the visit?
How much does it cost?
We charge $8,800 for your evaluation and treatment for two months of care when you pay with a credit card, your flex spending account, or a check. This fee does not include your lodging (we will provide you with information on some great local hotels). We also offer financing plans (many are interest-free).
How can I pay?
You can pay with cash, check, credit card, your Flexible Spending Account (FSA), Health Savings Account (HSA) or you can make payments through our credit program (many payment plans are interest-free). We do not accept Medicare or Medicaid, nor do we bill insurance companies. Your receipt will generally be adequate for your FSA or HSA programs, however.
Do you offer payment plans?
Yes! We have arranged for payment plans for you. There is no fee for opening or activating your account and the application can be completed online or over the phone and is simple and fast.
Why doesn’t my health plan cover this?
After considering all options, we have decided a comprehensive evaluation and accelerated treatment program is the only effective way to identify the underlying cause of POTS for most patients, despite the reluctance by many insurance companies to cover such a program. Although this is an unprecedented approach to POTS treatment, it can provide answers much more quickly for you. We hope it ends up saving you thousands of dollars, and most importantly, allows you to return to a full life as quickly as possible.
Do you take Medicare or Medicaid?
Although we are happy to provide care for Medicare or Medicaid patients, we do not accept Medicare or Medicaid for payment (we have opted out of these programs). If you come to POTS Care, you will not receive reimbursement from Medicare or Medicaid.
Do you require an official diagnosis of POTS to see me?
No. Many patients come to POTS Care with a firm diagnosis (the result of a tilt table test), but many come with strong suspicions of POTS in conjunction with some abnormal findings on the “poor-man’s tilt table test”. We pre-qualify all patients to make sure they can be helped at our clinic.
Can you help my kids?
Yes. We can see children as young as eight years old. Ask yourself if your child is able to sit for testing (an eye examination or dental exam, for example) and is capable of answering questions about symptoms. If so, your child is likely old enough to be seen and treated.
I believe I have Mast Cell Activation Syndrome (MCAS). Can you help me?
Yes. Mast Cell Activation Syndrome is a common comorbid presentation in many cases of idiopathic POTS and we can assist you in its treatment as it relates to POTS. The first question that must be asked is, if MCAS is present, what is activating the mast cells? Some patients presume they have MCAS because their presentation appears as such, but we have found many to be misdiagnosed. By identifying the true underlying problem (often affecting mast cells) patients can respond to treatment. We will be evaluating you closely to try to find out if mast cells are the only (or even the primary) histamine-producing cells that may be contributing to your symptoms.
I’ve been to the experts with no real help. Why should I trust you?
Personal experience with these conditions offers insight into symptoms that can be difficult for other doctors to understand. Our Clinical Director, Dr. Diana Driscoll, was disabled by POTS for over a decade. Her children also had POTS and her son had to miss three years of school. They were able to recover only by locating and treating the underlying problems causing POTS. POTS Care is the culmination of ten years of research (and personal experience) into this challenging disorder, focused on locating objective markers of illness.
Can my doctor(s) continue my care after I leave, or do I need to return to POTS Care?
If you require prescriptions, they will (usually) be good for a year. After one year, should you still need some prescriptions, we are happy to explain this to your doctor and help you pass the baton to them. Alternatively, you can return to us annually.
Will you run blood tests?
Yes. Blood work will be billed to your medical insurance plan. We may want to perform some blood tests ahead of your visit, if possible, to give us more answers quickly and to guide our next steps.
POTS Care is the only clinic dedicated to locating and treating the underlying medical causes of POTS – not just the symptoms.