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 not longer shuffled from specialist to specialist, with no one looking at the big picture. Not only is that approach often unsuccessful, it can 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 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 should you want or need to share that with anyone on your medical team. 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. Drs. Diana and Richard Driscoll began studying POTS and running numerous clinical trials when traditional treatment for POTS failed for them, and they were convinced there were medical reasons for their illness. They established Genetic Disease Investigators, LLC to conduct their studies and began finding answers via unique ocular testing. Drs. Driscoll are intimately familiar with POTS, chronic fatigue, brain fog, immune system decline, gastroparesis and other G.I. problems, poor temperature regulation, interstitial cystitis, and other symptoms affecting these patients. 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.
All physicians and PA’s on the team are carefully selected for their experience in “invisible illnesses”, their compassion and patience. Some physicians assist directly in patient care, while others are available for consultations as needed. Because experience in these conditions is a rarity, the physicians at POTS Care may need to consult with specialists outside of the local area. All of these costs are included in your fee. An integral part of the team are the doctors who work behind the scenes.
An integral part of the team are the doctors who work behind the scenes. POTS Care has licensed the rights to use the collective knowledge obtained by the research of a variety of specialists involved in Genetic Disease Investigators, LLC. Although currently not directly involved in POTS Care, their work has been instrumental in creating the algorithms needed to evaluate POTS patients in a more thorough, yet efficient manner. When you are evaluated at POTS Care, it’s as if dozens of doctors that you never see are contributing their knowledge to your care. This new model for evaluation and treatment was a necessary step in providing patients with the best care possible in the least amount of time possible.
Does your treatment plan involve high doses of salt and fluids, beta-blockers and blood-expanders?
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?
Biofeedback 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. The combination of medication and mind control is a powerful one!
I don’t feel well and I worry about too much walking, standing or even thinking! How exhausting is the visit?
At POTS Care, we understand what is like to suffer with POTS and other invisible illnesses. We are sensitive to your needs for rest, a comfortable reclining position, lots of fluids, low stress, low light levels, etc. We also understand difficulties with brain fog and exhaustion – especially if you need to travel to get to us. We do our very best to accommodate your needs, and you need not feel embarrassed should you require special care. Just let us know what you need, and we will do our best to work around your body’s requirements.
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). Should you be interested in financing, please contact us for details.
How can I pay?
You can pay with a 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 on-line 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.
A note from Dr. Diana Driscoll:
“As a patient, and a mom of affected patients, I went to dozens of doctors, hoping someone would look at my entire list of symptoms. I believed that if someone studied my entire presentation, they had a greater chance of identifying my underlying problems. Instead, I was shuffled from specialist to specialist, and no one considered my body as a whole. Most of the treatments I received were designed to treat my symptoms, not the underlying cause of my symptoms. We traveled across the U.S. for years, and I had numerous expensive and invasive tests, many which made me sicker – and yet we still had no answers. I see many others going through this expensive, frustrating journey and would like to dramatically change this scenario. At POTS Care, we will consider all of your symptoms simultaneously. We will dig deep for signs of illness that can be easily overlooked by others who are not looking at the entire picture. We will not assume your symptoms are all “in your head”, but instead, will consider often overlooked medical causes of obscure symptoms. If you have ever wished that a group of doctors would look at all of your symptoms, understand that your symptoms are not “all in your head” and believe that there is an underlying, medical cause for your illness, you have found that group at POTS Care.”
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.
What patients do you treat?
We treat patients with a diagnosis of POTS (postural orthostatic tachycardia syndrome) as is often found in Chronic Fatigue Syndrome (CFS/ME), EDS (Ehlers-Danlos syndrome), Chronic Lyme disease, and fibromyalgia. Many patients who are presumed to have mitochondrial disorders, mold toxicity or autoimmune disorders such as Lupus (SLE) or Sjogren’s syndrome (with no verifiable antibodies identified) are also suffering with idiopathic POTS. Misdiagnosis is common because patients present with most of the symptoms of these disorders, adding to the diagnostic challenge. Alternatively, when the cause of idiopathic POTS is correctly diagnosed, patients can begin to respond to treatment immediately. At POTS Care, we specialize in idiopathic POTS and the many conditions that mimic this disorder.
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”. Many people have noticed some difficulty with standing or the recent onset of heart racing and/or fainting. We also reach beyond treating orthostatic intolerance and treat most of the symptoms that occur in conjunction with POTS such as extreme fatigue, gastroparesis, brain fog, tachycardia, and insomnia.
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. If you should have the rare mastocytosis or mast cell leukemia, however, you should instead see an oncology (cancer) and/or mast cell specialist. 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 have multiple systems atrophy (ALS) or Parkinson’s disease. Can you treat me?
We specialize in idiopathic POTS and dysautonomia (such as those found with Ehlers-Danlos syndrome, Chronic Fatigue Syndrome/M.E., chronic Lyme disease and some fibromyalgia). For patients with Multiple Systems Atrophy (MSA), Amyotrophic lateral sclerosis (ALS, or Lou Gehrig’s Disease), Parkinson’s Disease, or autoimmune autonomic gangliopathy, a neurologist specializing in these conditions is needed. These conditions are not considered to involve “idiopathic POTS” and are outside the scope of our care. The underlying mechanisms of these illnesses are unique and require specialized management with a neurologist uniquely qualified for these particular illnesses.
Can you guarantee that treatment will be successful?
There is no possible way to guarantee that treatment will be successful in eliminating POTS, and we do not expect resolution of symptoms during your visit, although that can happen. What we will guarantee is that we will evaluate every single symptom you have in our search for answers. We will reach far beyond typical treatments of blood volume enhancers and consider the role of histamine, MCAS, chronic inflammation, endocrine disorders, intracranial pressure problems and vagus nerve involvement, at a minimum. We will look for answers as noninvasively as possible and always start with the safest medications first.
Do you perform genetic testing?
No, but we encourage patients to have a genetic analysis through “23andme.com”. We are now evaluating over 30 SNP’s that can contribute to POTS (something no one else is doing). Being able to find genes contributing to illness, in conjunction with objective evidence in the blood is incredibly rewarding for our medical team, in addition to providing confidence in our work for you, the patient. If you have your “23andme” genetic test results we will use that to help us locate answers for you, but it is not required. Alternatively, if you have results from your geneticist, please bring those to your visit.
Should I get my “23andme” genetic analysis before I come?
There is no need to wait for these results. If you have them, we will incorporate your results into our evaluation.
Do I need to go off of my medications for the testing or visit?
No. Discontinuing medications needs to be done cautiously. We will help you adjust your medications (and hopefully, wean off of most of them) but until then, please stay on your medications. We will advise you on an individual basis prior to your visit, should adjustments in your medication be necessary prior to your visit.
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. POTS Care is the culmination of ten years of research (and personal experience) into this challenging disorder, focused on locating objective markers of illness. Dozens of physicians have contributed to the research and the treatment algorithms needed for this challenging condition. Not content with symptomatic treatment, the research began by looking for contributing factors that have been missed previously (such as problems with inflammation, intracranial pressure, vascular abnormalities and endocrine disorders).
Our doctors understand there are medical conditions causing symptoms, and that for the vast majority of patients, this condition is not a psychiatric disorder. At POTS Care, you need not fear that you will be diagnosed with “anxiety” or other somatic illnesses. We use real science and real medicine – no snake-oil — to try to locate the medical causes of illness. Our research and personal experience taught us to reach far beyond traditional testing to find answers, and to examine all symptoms and signs of illness simultaneously. This is an unprecedented approach to these conditions, but is often essential for proper treatment.
Can my doctor(s) continue my care after I leave, or do I need to return to POTS Care?
When you leave, you will be provided with a preliminary summary of your visit with detailed instructions to follow until your next (phone) consult with us in approximately three weeks. During those three weeks, we will receive your completed blood work and will know of your response to treatment thus far, allowing us to then provide you with a final summary and treatment plan. This final consult takes approximately 40 minutes, and we should be able to answer any remaining questions you have at that time. We will provide you with prescriptions needed and recommendations for your medical team. If you have been given prescriptions, either your doctors can refill them as needed, or we can do so for one year when required blood work is received. After one year, you can go to any doctor of your choosing, we can recommend providers in our area for prescription renewal, or you can return to us for prescription renewals. For conditions outside the scope of POTS Care, we can make recommendations for your doctor, or refer you to doctors in our area for care.
Will you perform lumbar punctures to check for high intracranial pressure?
No. We have found that many patients with POTS have connective tissue disorders, making them prone to acute and chronic CSF leaks and induced Chiari after lumbar punctures. Instead, we will rely on non-invasive testing to determine if patients may be suffering with high intracranial pressure.
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.
Is POTS Care part of Total Eye Care?
Currently, patients at POTS Care are being seen inside Total Eye Care’s offices (see www.TotalEyeCare.com for information about Total Eye Care), yet POTS Care is a separate practice. A spacious facility with multiple exam rooms, a laboratory and all equipment required, Total Eye Care is the perfect location for POTS Care, while an independent suite is being completed. Numerous studies and clinical trials for many invisible diseases (such as POTS, EDS/POTS, and multiple sclerosis) were conducted at Total Eye Care. This means that the staff is comfortable with the special needs of these patients. Your ocular testing will be conducted by doctors at Total Eye Care.