Wednesday, November 4, 2015 - Noon
Autonomic disorders are neurological diseases which can affect the cardiovascular system. Syncope, Dysautonomia and POTs (Postural Tachycardia Syndrome) are the most common forms. Over one million Americans are impacted with a primary autonomic system disorder and symptoms can include problems with the heart rate, blood pressure, body temperature and perspiration. Neurologist Robert G. Wilson, DO answers your questions.
- Find more information on Syncope and other autonomic disorders.
- If you need more information, contact us or call the Miller Family Heart, Vascular & Thoracic Institute Resource & Information Nurse at 216.445.9288 or toll-free at 866.289.6911. We would be happy to help you.
- View previous chat transcripts.
zar777: Dr. Jaeger was my father’s physician last year. He was amazing. What is being done to inform doctors about this condition? There are a lot of misdiagnoses. Before we met doctor Jaeger, one Dr. told my father he was lazy. She would make him try to sit up for long periods even as his BP was plummeting. Dr. Jaeger has my father on a medication combination that enables him to function normally, he is driving again, and cooking. This time last year, he could not sit up without almost passing out. We thank God for using you, Dr. Jaeger.
Fredrick_Jaeger,_DO: Glad he's doing well! This week, I understand that there is currently a large campaign to inform doctors and others about autonomic dysfunction - including webchats like this one.
zar777: Hello. I would like to pose the same question. What is being done to educate the rest of the medical community to this condition? This condition is very misdiagnosed.
Robert_G._Wilson,_DO: Excellent question. I think it's that autonomic realm is becoming more commonly understood that helps makes diagnosis more common. In teaching of medical students in the Neurology rotation here at Cleveland Clinic, I spend time reinforcing when someone has global symptoms to think autonomic. We are living in a time where this understanding of the autonomic system role in health and disease, there is more research, time and effort into autonomic dysautonomia. I am hopeful.
Genetics and POTS
POTSy: My second question is about genetics and POTS. I have a twin sister and a younger brother who have POTS as well and I've heard that there is some research being done about a genetic link and POTS. Do you know what genetic link that is? I also got tested for EDS and don't have that. Lastly, I have an upcoming appointment with a rheumatologist which I was told to look for my underlying condition such as an autoimmune disorder which is commonly linked to POTS. Do you have any advice on what I should mention in that appointment as it relates to POTS? Thank you so much! :)
Robert_G._Wilson,_DO: So genetics can be relevant, we do see in the joint heart mobility syndromes like EDS and Marfan's increased incidence of POTS. I personally am following a family of 12 relatives with POTS and yet we still do not know the mechanism of why they share this health issue. Migraines can have a genetic component and migraine patients can have an increased incidence of POTS and migraine can be a genetic condition. The question about autoimmune is common autoimmune syndromes can be Celiac, Sjogren's, the ganglionic receptor antibody. Sjogren's has a 15-20% occurrence in POTS patients and the conventional blood test might be negative for neurological Sjogren's. If we have a concern of Sjogren's we will do a dry eye test and a lip biopsy in our POTS patients.
Neurologic Conditions/Symptoms and POTS
RandomJelly: Hello, I've had POTS for some time now that has become very severe and cannot be treated with any of the medications used for this condition. I have developed some neurological issues and have RBD (REM behavior disorder). The POTS specialist here diagnosed me with Shy Drager, now known as MSA (Multiple System Atrophy). My primary doctor and I aren't so sure, or perhaps don't want to believe, I have something fatal. How do I know for certain if it is POTS or is MSA? Do I just have to wait and see if MSA symptoms progress and death is imminent or is there another way? I have read that POTS patients with RBD can later in life likely develop MSA. Is this also true? Thank you for your time.
Robert_G._Wilson,_DO: This is a great question. Generally MSA can be ascertained by careful neurologic exam looking for Parkinson's findings on exam. Also brain MRI may show atrophy in the cerebellum or brain stem area. Generally MSA will not have the tachycardia of POTS. The important thing is there are some autoimmune neurologic conditions that can cause stiffness and POTS; like the anti-GAD syndrome.
MissAshleyAnne: I can't really explain it, but i have been having problems down my left side. It started off as I got up, my whole left side would clench up and it would be like I needed to drag it along, and now it is happening a lot. Sat down, stood still, or moving around. Now recently, three days ago, on the left foot where I have been having these problems I have got really bad pain going across my foot and on my ankle and a little up my leg. I don't know what this could be, can you help?
Robert_G._Wilson,_DO: I think this is very important to address with a very detailed neurologic evaluation. There are conditions that can share autonomic dysfunction and failure to control even one side of the body.
Michaelsmom: My son was just diagnosed with Dysautonomia, and pots, the doctors have told us the seizures he just started experiencing are not a part of the Dysautonomia. I hear of others experiencing similar events. What if anything can be done to help the seizures if they are not epilepsy? The school wants to know before they will let him back in school.
Robert_G._Wilson,_DO: So it's important to ask the doctors if there are any joint or shared diagnoses that could cause seizures. In addition, it's very important to log the frequency of these seizure events. The frequency may help determine if there's a need for more potential monitoring (epilepsy monitoring). In addition, there is a term called convulsive syncope where people can look like they are having a seizure where there is really an autonomic response. Even epilepsy monitoring can demonstrate that these are not seizures and might be a window by heart rate and blood pressure monitoring that this might be autonomic dysfunction as a cause of these events.
gingersnap: I have been diagnosed with POTS for three yrs. now, but doctors still can't figure out or stop the seizures I go into, a lot of times when my blood pressure drops. Is this something that is fairly common; and will I have to struggle through this the rest of my life? There are not any doctors in my area with much knowledge on POTS.
Robert_G._Wilson,_DO: There is a term called convulsive syncope that can look like seizures when the cause is really autonomic dysfunction. With my patients I will want to see their blood pressure logs. If the blood pressure is low I will often use medication and other care to help raise the blood pressure to reduce these events. It's important to make sure you've had evaluation for seizures also, usually with EEG, and neurologic consultation.
Other Medical Conditions and Dysautonomia
neverworks: I have confirmed sarcoidosis in remission and diagnosed with an atrial tachycardia. I dropped 15 lb. in two weeks, developed OI, syncope, worsening GI issues, neuropathy in my hands and feet, loss of dexterity. Stress and activity make it worse, excitement makes me shake uncontrollably. I was tested for every disease known to cause these symptoms. My GI results showed no issues causing my symptoms. I was tilt table and QSART tested twice, both were normal. We captured a 30+ spike in heart rate when standing resulting in near syncope. My docs (Mayo) now suspect POTS or other autonomic dysfunction. A CDP and DVA test, noted functionally impaired DVA with significant loss of visual acuity with right/left head movements. I've made lifestyle changes, salt increases, leg compression, all seem to be helping. Can I have POTS and pass those tests? What other tests am I missing? What should we pursue with the DVA results, my ophthalmologist didn't know? If it's not POTS, what else could it be?
Robert_G._Wilson,_DO: I have seen autonomic dysfunction or POTS develop after sarcoidosis. We can see autonomic dysfunction or POTS develop as a secondary response to a chronic health disease. And besides treating the chronic health issue, treating the POTS is one of the best paths to better health. You can have POTS and pass those tests, one additional test to ask is if you should be tested for small fiber neuropathy related to sarcoidosis and POTS. In addition with all your wellness lifestyle for POTS, cardiac rehab and potential medicines may help your POTS function better.
LEXMEL: With autoimmune autonomic ganglionopathy AAG is it progressive? If the antibodies are treated will your symptoms improve or resolve or stay the same? Do the antibodies do permanent damage to your autonomic system? #2 since the majority of Dysautonomia patients are female, what role does hormones play and can hormone replacement help symptoms?
Robert_G._Wilson,_DO: This is an excellent question. We generally use how someone is doing clinically more so than the antibody levels to tell how someone is doing. Some of my patients who are doing well may have persistent antibody levels. The antibodies represent a potential autoimmune factor. In addition, some of these autoimmune conditions that you mentioned we may also use IVIGG or plasma exchange. As for the hormones, we are still learning its role in this condition. We do know women will do worse around their menses.
smschlot: Can symptoms wax and wane or change over time? For example, can there be periods in your life where prolonged standing or sitting at a computer can trigger tachycardia/presyncope and other times in your life only affected by low blood pressure and narrow pulse pressures with no tachycardia.
Fredrick_Jaeger,_DO: Fluctuations of symptoms are very common. They may have periods of quiescence, a relative control of symptoms, and seemingly or suddenly the symptoms return inexplicably. It's hard to predict, know when this will happen, or know what triggers this. We try to determine what might be the various triggers without autonomic testing, hemodynamic assessments and ambulatory monitors.
dhorine424: I have been Diagnosed with POTS some days the symptoms are sever and then I have days where I feel "normal" is this how it works or have I been misdiagnosed?
Robert_G._Wilson,_DO: People with POTS can have good days and bad days. This does not discount the diagnosis. I encourage my patients to keep a daily log from 1 to 10 in terms of how they're doing. 10 is the worst, 1 is the best. This log can trend how someone is improving or doing worse. Also, the logging might give insight to triggers that are occurring in one's life to cause more bad days than good days. I hope for you to have more better days.
catd: Sleep is a huge problem for me; I find my symptoms significantly worse when I wake up from sleep or a nap. Why is this and how can I manage this?
Robert_G._Wilson,_DO: With autonomic dysfunction, especially POTS, sleep can be a big problem. One aspect is from immobilization, blood pooling occurs. Some patients will wear compression stockings at bed and keep their head elevated at 30 degrees. I often will prescribe a medication if there is nighttime tachycardia that does occur with POTS, like beta blocker. Often some patients will need to use a neuropathic medicine to help with some of the body pains and neuropathic symptoms at nighttime. Many of my POTS patients have very shallow, fragmented poor sleep. I find working to improve sleep often helps the daytime symptoms to be better controlled.
searchingforananswer: What can be done to manage the nausea that can be experienced with POTS and/or Dysautonomia? We have tried Zofran, and that only works for less than 1 hour.
Robert_G._Wilson,_DO: Great question! The question I wonder is, has anyone medically evaluated for gastric motility disorder like gastroparesis that can cause these symptoms? I have actually sometimes used neuropathic medications to help these symptoms over typical anti-nausea medicine.
sisternc: Hello, I have not been dx with POTS, but with autonomic imbalance. I have been having problems with my heart rate and BP increasing, chronic fatigue, nausea, headaches, and problems, itching, blurred vision when BP is slightly elevated, tingling on mainly the left side of my body, frequent urination, which is better, when my BP is normal. I've been informed that it is mostly anxiety. This has been doing on for about 3 years.
Fredrick_Jaeger,_DO: I'm sorry that you're struggling, but autonomic imbalance is just one of the general names ascribed to the category of dysautonomia. The names and nomenclature are influx and are frequently changing. However, many patients have symptoms on various parts of the spectrum, like you describe. Because many doctors do not understand the autonomic nervous system, there is frequent tendency to label it as anxiety or hyper vigilance. Certainly, ongoing autonomic disorders can trigger anxiety, probably appropriately, but what is needed for you is a thorough evaluation of your autonomic nervous system. There is usually good therapies, both pharmacologic and non-pharmacologic that alleviate symptoms.
LZ: I started having odd fluctuations in my body temp in the 90's when I was about 26yrs old. I was diagnosed with FUO and told that "It will either go away on its own or I may have it forever." hmmm. 10 years later I began having random episodes of Tachycardia, less than 180bpm with few if any bothersome symptoms and was diagnosed with SVT. My Neurologist at CC just diagnosed it as POTS since I had an episode upon standing in his office. (diagnosed with NDPH ODDLY enough 10 years after the Tachycardia) The Tachycardia can start upon standing OR while just sitting still. Is that Truly POTS?? I STILL have the crazy fluctuations in body temp but just assumed it was the FUO that hasn't gone away. Could the 2 conditions actually be related?? One other interesting thing, I had a sleep study done and they noted that when I changed positions in bed, my temp would spike up. These Symptoms can be "Irritating" but not life altering. (I don't take Rx for SVT's because I'm usually asymptomatic).
Fredrick_Jaeger,_DO: Temperature intolerance is extremely common in autonomic disorders, but abnormalities in temperature particularly recurrent fevers would not be a common feature of POTS, and suggests another type of underlying disorder, either endocrinologic or underlying covert infection.
Symptoms: Pain and POTS
peacelovealisa: I have had severe pain in the front of both thighs when standing and walking for 4 years. After seeing many specialists and having every test, I had a tilt table test and consult with an autonomic doctor. He said I didn't have POTS because my heart rate didn't increase >30 pts. but said I had venous pooling and atypical presentation. My thighs also turn red when I stand/walk. Midodrine and herbs such as Butcher's broom didn't help, and compression stockings help a little. Another doctor at Johns Hopkins told me thigh pain is not usually associated with POTS and orthostatic intolerance. My BP and HR increase, and I feel jittery, shaky, and lightheaded when standing a few minutes. Could the thigh pain be part of an orthostatic problem, and should I continue to pursue this by seeing another autonomic doctor, or is it likely something unrelated that they haven't found yet? I am a 48-y-old female. Any doctors you recommend in the northern Virginia area? Thanks for your help!
Robert_G._Wilson,_DO: Sometimes I will repeat the tilt table test for those patients I still have a concern for autonomic dysfunction. What I also try to study is the heart rate response through the tilt table and not the heart rate response of 30 beats over baseline at the 10 minute head of bed elevated interval. Midodrine might not be the only medicine to use for autonomic dysfunction. We do see body pain in people with autonomic dysfunction as blood pools or if there is underlying small fiber neuropathy. I think it's essential and excellent that you are trying to monitor your blood pressure heart rate with your symptoms. Also you should be doing your blood pressure at least daily at a standard time besides when you feel at your worst. This logging of vitals helps me understand my patient's physiology to better help them.
XTriathlete: Besides Pain Management are there any other treatments for autonomic disorders? Specifically lower leg spasms and hot/ cold sensitivities.
Robert_G._Wilson,_DO: Again, a great question! This question raises diagnosis that these symptoms can often be tied into neuropathy and this neuropathy is usually a small fiber that can be diagnosed with qsart or skin nerve biopsy . Often for my patients with these symptoms, I will do a comprehensive blood panel for typical autoimmune conditions and neurologic autoantibodies.
Jlwilkes2015: Is there a connection between POTS and neuropathic pain?
Robert_G._Wilson,_DO: We can see small fiber neuropathy in POTS that can cause this pain. Also blood pooling can cause much body pain.
MatildaG: Could POTS cause EXTREME pain in my toes? Like the sensation of an open wound being dragged thru sand & glass? Could it also be responsible for my legs having the sensation of "falling asleep"? Lastly, how do we speak to our own doctors without sounding like whiney crazy people? How do I get my Dr. to listen/understand?
Robert_G._Wilson,_DO: This is an important question that we can see small fiber neuropathy in POTS, about 20% occurrence. In addition, blood pooling can cause these symptoms. The blood pooling and these symptoms might occur when persons are more immobilized through the day from sitting or lying down. In small fiber neuropathy, we use QSART or skin nerve biopsy for diagnosis.
jengeller: Can pain be a symptom from POTS ? How does a person advocate for Themselves during a flare and when should a person go to the hospital for symptoms. Most of us when we go just get a saline iv if that much and are kicked out with a "there is nothing more I can do everything looks fine even though you don't feel fine" Looking forward for your input
Robert_G._Wilson,_DO: Pain is very typical. The cause can be blood pooling. For a subset, they may have small fiber neuropathy. We really try to work with our POTS patients to make their care as outpatient care when possible. Monitoring vitals of blood pressure and pulse daily and when you feel bad it may be insightful to tailor therapy to help you do better.
Symptoms: Migraines and POTS
MK1967: Hello, I was diagnosed with Neurocardiogenic Syncope 6 years ago and had a pacemaker inserted. About 3 years ago I started having Ocular migraines a few times per month where part of my vision is blocked from 15 to 45 minutes. Is this an autonomic issue or another neurological problem? Also, are there any new drugs, supplements or special diets that can help the symptoms of Dysautonomia? Thank you.
Robert_G._Wilson,_DO: Great question. We do see Sjogren's and Celiac as being tied into POTS and gut issues. Testing that is sometimes helpful are any studies for gastro motility. Your gut is a big neuromuscular structure and can be impacted by autonomic dysfunction. And we do see abdominal pain with POTS as blood pools from abdominal skeletal muscles and not impacting the gut itself. Many of my POTS patients need lifestyle and medications to help gut function.
watsone: I have horrible migraines with days of vomiting for which Zofran and all the others don't help. Many medications make my body feel like I should not have taken these medications. In the ER I try to just get fluid support and some IV for nausea but they are always pushing strong medications for the pain. Any suggestions for pain medications that are safe for dysautonomia?
Robert_G._Wilson,_DO: Migraines history can be a risk factor for POTS. Also, headaches and migraines can be common symptoms for POTs and dysautonomia in a young person. Often I find treating dysautonomia helps to reduce the headaches and migraines. Another consideration is that we use Botox injections for migraine prevention and reduction especially when the patient meets FDA criteria.
Symptoms: Heart Rhythm and POTs
Tachy: After 13 years of SVTs and 2 ablations I was recently diagnosed with "dysautonomia". Besides the usual constellation of day time symptoms I battle with I have a major problem with tachycardia during sleep that nobody can figure out. I will sometimes wake during the FIRST hour of sleep with a heart rate of 140-160. It has been this way for years and never once happened further into my sleep. It isn't nightmares because a few times I started to wake slightly right before it started, a few times I remember rolling over from my stomach before it started. The episodes are terrifying and can last 20 minutes (after them I'm cold with chattering teeth, shaky and, of course, up for hours). I recently had a CAT scan and head MRI that was normal as well as an hour long EEG (I was supposed to fall asleep during but couldn't) and was told they could find nothing.
Fredrick_Jaeger,_DO: Depending upon the type of ablations that you've had, you may have developed an inappropriate sinus tachycardia. Your doctors could test you for this with ambulatory monitors, assessments of neurologic and autonomic function as well as possible therapies like beta blockers or ivabradine. Without further information, it's impossible to say exactly what's happening, but we would certainly be happy to see you.
Marie1: Is A-Fib common with POTS? My POTS seem to get worse as I get older (presently 75) is this common?
Fredrick_Jaeger,_DO: Atrial Fibrillation is very common in your age group, and not very common in POTS. In general, POTS in your age group is fairly uncommon as well; therefore, your doctors may consider other types of autonomic problems.
Symptoms: Dizziness, Syncope and POTS
Sova: My POTS symptoms act up with a vehicle moves when first starting out on a drive. Fine sitting down in the car, then just rolling out of the driveway makes my heart rate jump up. Is the nervous system confused? Why is driving/riding in a car different from other motions or activities? Four other POTS patients tell me they have similar experiences. Thanks! :)
Fredrick_Jaeger,_DO: POTS patients frequently have concomitant vestibular/inner ear issues as well as motion sickness, which manifests in a variety of different symptoms. There is very good testing to determine if you have a vestibular component accompanying autonomic dysfunction, including specific neurologic testing of the inner ear function. Cleveland Clinic has several specialists in this, including a group who sees patients with vertigo, dizziness, and POTS.
Katie Burrell: Why is pots causing me to regularly feel dizzy? Particularly after I stop walking or I am standing still even when my blood pressure is normal.
Robert_G._Wilson,_DO: People can feel very dizzy or light headed even when the blood pressure is normal. I would try to check your pulse also. I would try to keep a daily log of how frequently you feel this symptom. With my own patients I will also use how severe or impacted their daily life with medicine, life tips and maybe even use cardiac rehabilitation.
Rainbow4: My 14-year-old great grandson has been having what he calls "his eyes go black" episodes, and he becomes unsteady on his feet. He passed out once just for a moment or two; his eyes were glassy and pupils were dilated. Now when his eyes go black, his ears fill up with a feeling of being underwater. The doctor said it could be Dysautonomia and he has an appointment with a cardiologist next week. Can you help me understand what may be causing this and what can be done. He is now having these episodes more frequently (they actually started over a year ago).
Robert_G._Wilson,_DO: Actually what's happening is when people are fainting or near fainting they will have reduction of blood flow to their head. There is no brain injury from this. As a neurologist, I will often see people who come to us presenting with syncope without symptoms and we've had many patients report to us many symptoms and phenomena and strange body symptoms as their blood pressure and body fluctuate without having complete fainting.
Symptoms: Blood Pressure
sbdavisrn: I have hypertension, pulmonary hypertension and A-fib. (Otherwise, I'm just fine!) I take Avapro, Imdur, Coumadin, Atenolol, Digoxin, Norvasc and Lasix 20. I have told my cardiologist that I have the symptoms of orthostatic intolerance and orthostatic hypotension. He told me to drink more water. (I don't drink enough.) I already know to change position slowly. Is there anything else I can do? Inner ear testing was negative.
Fredrick_Jaeger,_DO: Orthostatic hypotension is extremely common and challenging. When people have the combination of high blood pressure with a tendency for blood pressure to fall when they stand, then there are specific medicines that can be used to help both extremes. There are many mechanisms responsible for this and diagnostic autonomic testing can usually reveal the mechanism. Certainly, augmentation of fluids is helpful, also other things to discuss with your doctor are inclining the head of the bed, exercise program, compression socks, and medications to prevent the falls in blood pressure without increasing or causing hypertension.
Puregold: I have large swings in blood pressure. Generally, my Systolic varies from 125 to 185, Diastolic varies from 62 to 80, heart rate usually around 60. I feel fine with these numbers. However, I also have episodes of very low blood pressure (pressure of 80/40) when my heart pounds hard and faster and I feel I am going to pass out. Actually I don't feel well when the Systolic goes below 130. I've been taking Amlodipine Besylate 2.5 mg daily and wonder if I should continue to do so. The episodes of extremely low blood pressure and feeling faint can happen any time I feel some anxiety, after I've eaten a satisfying meal rather than a light snack, or after walking up a flight of stairs. Is there any way to avoid such drastic drops in blood pressure?
Fredrick_Jaeger,_DO: Swings or lability of blood pressure is very common in patients with autonomic disorders. You may discuss alternatives to amlodipine with your physician. There are other medicines that can be used to avoid much marked swings. Be sure to utilize compression socks, regular exercise, etc. If okay with your physicians, as this can certainly help. Beta blockers may be a better option for your hypertension, as they may avoid both the highs and the lows. But definitely discuss with your physician, or we'd be happy to see you here as well.
pattisv: My blood pressure is usually about 85/55, but sometimes when I exercise, it either goes down a bit, leading to a very fatigued feeling after a short period of exercise, or I develop a very wide pulse pressure, with a reading like 145/41. This causes me to feel like I am going to faint. How should I approach exercise with these difficulties?
Fredrick_Jaeger,_DO: If exercise has been prescribed by your doctors to help, you didn't mention what type, but you probably should concentrate on non-gravitational exercises; exercises done while sitting or lying down, which tends to avoid the marked fluctuations or drop in blood pressure that can happen with some exercise. Be sure to ask your doctor about using custom fitted compression socks, particularly during exercising, augmentation of fluid and salt, if appropriate. If you are having chronic low blood pressure, you should undergo evaluation to determine the cause. This could include, blood volume measurements, autonomic testing, as well as endocrine testing.
Low Blood Volume
watsone: I have been diagnosed with autonomic dysfunction with low blood volume. I also have and have always had low blood pressure. I am trying to figure out spells I get that are not like low BP syncope. With these episodes I get weak and feel like my body is shutting down. Once, when I got to the ER I urinated so much the nurse couldn't figure out what was happening. Sometimes I will shake or feel like I am trying to walk against a great force before I collapse. Any insight?
Robert_G._Wilson,_DO: Low blood pressure and low blood volume can cause many symptoms in the body than just fainting. In neurology, we see that much body pain, weakness and headaches from low blood pressure and low blood volume. It's essential to daily monitor your blood pressure once or twice a day. If my patient has low blood pressure I will use medicine to try and decrease the blood pressure and these symptoms.
fieldhockeymom: I have a daughter who has "Global Dysautonomia with POTS." She is a patient of Dr. Moodley MD, Pediatric Neurology at your facility. She has had vision changes, hearing loss, facial swelling and dysphagia all on the right side since being diagnosed in March 2015. She has a NG tube and is starting vital stim this week on her throat. I am very overwhelmed with the many specialists she has. Is there one physician that could really help me understand everything she has going on? Is there anything else I can do besides treat the symptoms? Thank you so much. I look forward to your session in November!! Christine
Robert_G._Wilson,_DO: This is a very valid question. Dr. Moodley is a wonderful physician. Many patients with POTS have so many specialists that we do have on our floor S3 a large POTS population with opportunity for shared medical appointments and even potential office nurse or physician visits. It's a constant balance to know what POTS is and what is not POTS medically.
POTSpatient: If a person has been diagnosed with POTS and is symptomatic on a daily basis but does not take any prescription meds for the condition, is there any reason to maintain follow-up appointments with a doctor who treats POTS? Are there any annual tests or screenings that are recommended, such as cardiac evaluations?
Fredrick_Jaeger,_DO: Usually, in my practice, patients will get a complete autonomic and cardiac evaluation on the initial visit and then, will usually start with the non-pharmacologic and later during follow up visits, medications or new therapies may be added. In addition, the condition does seem to change in character from time to time and certainly, monitoring for new symptoms or concerns may be appropriate.
olivet: After being diagnosed with non-length dependent small fiber neuropathy, I was worked up at Cleveland Clinic for Dysautonomia. I had a normal TST and was told to cancel my QSART. I failed my tilt table test with Dr. Shields in six minutes. HR up 38 beats/min. and still rising. BP mostly unchanged except fluctuating systolic hypotension. Diagnosis of Cardiovascular Dysautonomia, Cardiovascular Adrenergic Dysfunction. Differential was POTS however cardiovagal findings suggest more widespread disorder. My questions 1) what widespread disorder? 2) why do or not do QSART? Thanks for your consideration of these questions.
Fredrick_Jaeger,_DO: We often consider a thermoregulatory sweat test to be the best test to pick up a disseminated or widespread small fiber or autonomic neuropathy, therefore the QSART would not be needed. There are many conditions associated with vagal abnormalities. You should discuss these with the doctors who did the initial evaluations.
Exercise, Activity and POTS
Witherwings: In rehabilitation/physiotherapy: what is the exact goal you're trying to meet to help with POTS - is it all about gaining more muscle strength (to help pump your blood around) and if so: what if you're not able to gain more muscle (due to polyneuropathy or other muscular disorders)?
Robert_G._Wilson,_DO: The model of rehab that we like to use is a cardiac rehab model over conventional rehab to gently recondition the body using energy expenditure and pulse rate settings. Most POTS patients need very gradual increasing strength and conditioning since too rapid increased of exercise or rehab can actually work against the POTS patients.
pennymyers: How effective is the "Levine Protocol" in helping POTS patients?
Fredrick_Jaeger,_DO: The Levine Protocol also called POTS rehab or non-gravitational exercise program has been extremely helpful in many patients struggling with recurrent symptoms related to autonomic dysfunction. We have introduced this program in our cardiac rehab program and modified it, and are now treating several hundred patients on a regular basis. The results from clinical trials done several years ago have been quite impressive on improving symptoms and quality of life, and our own experience has been similar. The patients undergo rigorous initial evaluation with an exercise program and test and participate in so-called non-gravitational exercises; for example, recumbent bike, rowing machine, nustep, and aqua therapy if available, under a supervised, monitored, individualized, progressing at their own ability.
Stress and POTS
mmcoffman: How much does stress play a role in POTS symptoms worsening? Are PVCs common with POTS patients? If you have PVCS along with POTS, is a high salt intake still recommended?
Fredrick_Jaeger,_DO: Stress is a common occurrence in all of our lives, and can certainly make symptoms more difficult to handle. Increasing adrenaline levels or sympathetic nervous system activation can certainly worsen tachycardia heart rates. In addition, PVCs are extremely common in general and certainly may be exacerbated through the same symptoms. As long as the cardiac function structure is normal and there is no hypertension, in general, high salt should not exacerbate the PVCs. However, high salt may lead to intermittent elevation of blood pressure, which can certainly trigger more PVCs.
louren: Is it possible to be diagnosed with POTS based on an in-office sit to stand test, then show no symptoms during a tilt table test? The doctor had diagnosed my young adult daughter with POTS saying she went up 30 bpm, (later said he wrote down 20 bpm), and did a TTT just to see if it was a certain type of POTS. But when she did not have the heart increase much or faint during the TTT, he said he didn't know if she had POTS or not but it didn't matter anyway because she needs to find the underlying cause anyway. Do you agree? Also, we have found it nearly impossible to find doctors that have heard of, know how to diagnose, or treat POTS. Those that do have new patients waiting up to a year, and some stop taking new patients. It is frustrating and almost impossible to find a doctor nearby when patients can't travel or take off work. Is this being taught in medical schools now, and do you see more doctors looking to specialize in this field? What do we do?
Fredrick_Jaeger,_DO: It is unusual to have "orthostatic tachycardia" at the bedside, but have a normal TTT. Although, I have seen it occasionally and it remains a mystery. Certainly, patients can have daily fluctuation in their Tilt Table responses. Probably would be worthwhile to do further autonomic investigation, particularly since she still has intermittent high heart rates. It can be very frustrating to find physicians familiar with these autonomic problems, although, it appears that they are becoming increasingly prevalent as evidenced by the number of patients writing in today. The estimated incidents is about a million patients right now, and yes, new doctors in medical schools are learning about the autonomic disorders as well as ongoing research being done in multiple institutions.
LKP: What are the indications that a POTS patient should have their Total Blood Volume tested? What information can a patient give to their doctors to help them understand the need for the test? Particularly for older female POTS patients who have had POTS long-term. (In early 50s with POTS for almost 45 years.)
Fredrick_Jaeger,_DO: Our patients typically undergo a blood volume test routinely as that may be the root of their problem with unexpected low blood volume. Blood volume studies are available at about 200 facilities in the US in most major institutions, secondary, and tertiary care centers. It can be extremely helpful to guide therapy if significant low blood volume is found, including treatment with blood volume expanders and investigations of causes of low blood volume. We also perform other cardiac and hemodynamic testing to look at blood volume distribution during postural stress that is unique to Cleveland Clinic, called a radionuclide hemodynamic study, which was developed for patients with autonomic disorders.
Lyn1luv: My daughter is just getting a Dysautonomia diagnosis. What is the treatment for this disease?
Robert_G._Wilson,_DO: Excellent question. Dysautonomia is a very general term, you should ask your physician for a more detailed diagnosis, like POTS for example. For treatment, we try to figure out what might have led to dysautonomia. We will use certain medications, a cardiac rehab model and autonomic life tips to help people function and do better.
shalenado79: I have a new diagnosis of Dysautonomia and am taking Midodrine. Is this a medication I will be on the rest of my life? Also, I have three lesions in my brain. Does this have anything to do with the Dysautonomia???
Robert_G._Wilson,_DO: Great question. You may not need to be on this medicine the rest of your life. I will use this medicine often to get people feeling better initially. As we layer in further diagnostic cause of Dysautonomia, cardiac rehab model and other life tips for Dysautonomia.
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