Patient Advocates by Reanna Mathis
Compression Stockings by Mona Hussein
Meet the member: Kat's story by Chelsea Goldstein
Medical Q & A, answers provided by DINET's Medical Advisory Team
Information Patient Guides
Looking Back and Looking Forward - 2017 to 2018
Featured below are ongoing studies related to dysautonomia and POTS related illnesses. DINET does its best to select the studies that we believe will best appeal to our community. If you know of a study that you would like to share with DINET, please email the information with the link to the study, to email@example.com All information will be reviewed.
Open Recruitment Studies (updated December 2019)
RECRUITING: John Hopkins University is examining the use of a temporary celiac ganglion block before celiac ganglion resection in dysautonomia-related bowel dysmotility. Autonomic celiac ganglia resection has been shown to alleviate symptoms of dysautonomia-related dysmotility by interrupting the sympathetic stimulation to the GI system. Currently there has been no test to confirm this diagnosis pre-surgery. This studies objection is to temporarily block the ganglion to see if the symptoms go away, therefore confirming diagnosis and allowing for the more permanent surgical action. This study is recruiting patients with chronic dysmotility who are considering Celiac Ganglion resection. For further criteria and information about this study, please visit:
Contacts: Christos Georgiades, MD PHD firstname.lastname@example.org
Beatriz Kohler, email@example.com
RECRUITING: Clarkson University is conducting a study to learn about what factors affect the function and quality of life for people living with various chronic illnesses. The study should take approximately 45 minutes to complete and asks similar questions to those asked by healthcare providers. Questions will include quality of sleep, fatigue, pain, etc. All answers will be anonymous. Participants must be 18 years or older. Each person participating is requested to ask one healthy person to also participate but this is not required. To learn more about this study or to begin the questionnaire, visit https://www.surveymonkey.com/r/V3P7S9J This is an IRB exempt study.
RECRUITING: A study is being conducted to examine the affect on parents who are raising a child with POTS. This study is being conducted through the University of Mississippi, under the Principle, Abigail Armstrong for her Master's thesis. Abigail is a POTS patient and DINET member.
This is an IRB approved study.
You must be a parent or primary caregiver of a child 8 - 17 years of age who has been diagnosed with POTS
The child's diagnosis must have been made 6 months ago or longer
You must be able to speak and read English proficiently
This study will be conducting completely online and will take 10 - 15 minutes to complete. The purpose of this study is to better understand the impact POTS has on the parents and the child. The study will ask you to complete a series of brief questionnaires about yourself, your experiences as a parent, and your child diagnosed with POTS.
Please email Abigail with any questions about the study at firstname.lastname@example.org
To begin the study, click on the link provided: https://usmep.co1.qualtrics.com/jfe/form/SV_cIpzp1ncQXLJdad
RECRUITING: Vanderbilt University is conducting a study entitled "Pathophysiology and therapy of Orthostatic Intolerance." Studies to identify the role of the brain, the autonomic nervous system and the vasculature in Orthostatic Intolerance. Blood pressure and HR are measured laying down and standing at regular intervals. Blood samples are drawn for hormones affecting blood pressure control. Some studies require tilt table testing and medication administration.
Eligibility: All participants are adults. Contact Information:
Principles: David Robertson, M.D., Bonnie Black, RN
Vanderbilt University, Clinical Research Center
RECRUITING: Clinical Trial: Dr. Satish Raj and the University of Calgary is recruiting POTS patients for a study of the effects of compression on the symptoms of POTS https://clinicaltrials.gov/ct2/show/NCT03484273?term=POTS%2C+Postural+Orthostatic+Tachycardia+Syndrome&cond=dysautonomia&rank=5
OPEN ENROLLMENT: The Mayo Clinic is conducting a study to better understand the causes of autonomic disorders. The study includes the collection of DNA for future studies. This study is being conducted in part by Dr. Philip Low, one of the leading researchers in this field.
Eligibility: Males and females (non-pregnant) age 13 years and older diagnosed with MSA, PAF, Autonomic Neuropathies, NOH, POTS, Dysautonomia and healthy participants. Orthostatic range must include a systolic BP deduction of > 30 mm Hg or mean BP reduction of > 20 mm Hg that occurs within 3 mins of head-up tilt. For help understanding the criteria or for more information about the study, please contact Tonette Gehrking CAP at email@example.com or call 507-284-4462
Participating Clinics: Rochester, Minnesota.
RECRUITING: University of CA is studying the effect of the drug Ivabradine, a drug currently used for heart failure, to examine the possibility of its use as a treatment for heart rate issues in POTS patients.
University of CA, San Diego
Investigator: Pam Taub, MD
For more information: https://clinicaltrials.gov/ct2/show/NCT03182725?cond=Postural+Orthostatic+Tachycardia+Syndrome&rank=3
RECRUITING: Parent-Child Dyadic Experiences Living with Postural Orthostatic Tachycardia Syndrome (POTS) during Emerging Adulthood. What is it like living with POTS during emerging adulthood? Virginia Tech wants to know. If you are interested in joining a family science study on POTS, please contact Masumeh@vt.edu. Participants must be 18-29 years old, diagnosed with POTS. This is a parent-child study, so both must be willing to participate. Participants must reside in the U.S. Virginia Polytechnic Institute and State University
Department of Human Development
Principal Investigator: Dr. Carolyn Shivers
Co-Investigator: Masumeh Farchtchi
Specifics about the study and a consent form will be emailed to you if you are interested.
ACTIVE NOT RECRUITING: Clinical Trial: University of Oklahoma and Vanderbilt University are recruiting POTS patients for the Autoimmune Basis for Postural Tachycardia Syndrome study. They are looking at the levels of immune proteins (autoantibodies) in POTS patients and their relation to symptoms over time. https://clinicaltrials.gov/ct2/show/NCT02725060?term=autonomic+dysfunction&cond=Postural+Orthostatic+Tachycardia+Syndrome&rank=5
Recruiting: Vitamin D Deficiency in Dysautonomia In previous work the investigator identified a group of children between the ages of 10-18 years whose diagnostic workup for chronic nausea unexplained by conventional diagnostic tests has unexpectedly revealed underlying cardiovascular instability manifesting as orthostatic intolerance, primarily defined as postural orthostatic tachycardia syndrome (POTS) (88%). While this is an atypical initial presentation for orthostatic intolerance in general, the investigator believes that the cardiovascular problem is serious and represents a cause of nausea in a majority of these individuals, as treatment of the POTS with fludrocortisone reduced the symptoms of nausea. While fludrocortisone treatment abrogates the fall in baroreflex sensitivity (BRS) during tilt in part, it did not completely correct the tachycardia symptoms or the BRS suppression during HUT. Furthermore, it caused an elevation in MAP in a supine position, which may lead to future cardiovascular problems such as early onset hypertension and cardiac hypertrophy. This argues for a different treatment approach. The investigator presents preliminary data in this application revealing that OI subjects tend to have lower 25-hydroxyvitamin D (25(OH)D) compared to non OI subjects.
Open to children 10 - 18
Still Recruiting: ME/CFS Activity Patterns and Autonomic Dysfunction The purpose of this study is to identify daily activity patterns, negative life events and autonomic abnormalities that may be related to non-improvement in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). For both naturalistic studies and behavioral intervention trials, roughly 50% of patients report worsening or unchanged illness. The proposed four-year study would be the first to look at the relationship between illness non-improvement, patient activities at home and autonomic function. Our long-range goal is to identify physiological signals and activity patterns that predict non-improvement and relapse and develop a self-management program that prescribes improvement-linked behaviors and discourages non-improvement activities.
Contact: Particia Bruckenthal, PhD, RN 631-444-1172 firstname.lastname@example.org
Contact: Jenna Adamowicz, MA 631-371-4417 email@example.com
Recruiting: The investigators propose to conduct a safety, tolerability and early proof of concept efficacy study of phosphatidylserine in patients with FD. The long-term goal is to find an effection nutritional therapy that will improve the quality of life for patients with FD and alter disease prognosis Contact & participation information is available - https://clinicaltrials.gov/ct2/show/NCT02276716?cond=Dysautonomia&rank=5
Completed, Results TBA PET Imaging Study of Neurochemical and Autonomic disorders in Multiple System Atrophy (MSA) from the University of Michigan. This study aims to better understand the patterns and timings of nerve degeneration relatively early on and how it affects symptoms and progression.
Eligibility: 30 - 80 years old
Gender: AllSubject: diagnosis of MSA or probable MSA of the Parkisonion subtype (MSA-P) or Cerebellar subtype (MSA-C), Subject must be willing and able to give informed consent. Normal cognition as assessed by MiniMental State Examination
Timeline: Less than 4 years from the time of documented diagnosis See study online for exclusions and further information. https://clinicaltrials.gov/ct2/show/study/NCT02035761?recrs=ab&cond=Dysautonomia+Orthostatic+Hypotension+Syndrome&rank=4 Contacts: Arijit K Bhaumik, B.A. CCRP, 734-936-8281 firstname.lastname@example.org Edna Rose, Ph.D., RN, MSW, BC, 734-936-7359, email@example.com Estimated Primary Completion Date: July 2018
Recruiting: A Study of Pyridostigmine in Postural Tachycardia Syndrome.
This is a 3-day study being conducted by the Mayo Clinic comparing pyridostigmine vs placebo in the treatment of POTS. Researchers expect pyridostigmine to improve tachycardia and stabilize blood pressure.
Eligibility: Diagnosis of Postural Tachycardia Syndrome using the following criteria:
Orthostatic heart rate increment greater than or equal to 30 beats per minute (BPM) within 5 minutes of head-up tilt.
Symptoms of orthostatic intolerance. These include weakness, lightheadedness blurred vision, nausea, palpitations, and difficulty with concentration and thinking.
Both criteria must be fulfilled
See study online for exclusions and further information http://www.mayo.edu/research/clinical-trials/cls-20128843 Mayo Clinic location, Rochester MINN, Principal Investigator: Dr. Philip Low Contact: Tonette Gehrking, CAP, 507-284-4462, firstname.lastname@example.org
(Completed, Results TBA) The Safety and Tolerability of Kinetin, in Patients with Familial Dysautonomia The overall objective of this study is to assess the safety and tolerability of administering kinetin in patients with FD. The specific aim of this proposal is to determine the safety of a once-daily dose of kinetin in patients with FD using a dose ascending titration and to determine the long-term safety and tolerability during 3-years of receiving a maximum tolerated steady state dose of kinetin. The investigators hope to also demonstrate early proof of concept that kinetin enhances the ability of the neuronal tissue to correctly splice IKAP mRNA.
Eligibility: Male or female 16 years of age and older, confirmed a diagnosis of familial dysautonomia by genetic testing, written informed consent to participate in the trial and understanding that they can withdraw consent at any time without affecting their future care. And the ability to comply with the requirements of the study procedures.
See study for more info and exclusions: https://clinicaltrials.gov/ct2/show/NCT02274051?cond=Dysautonomia&rank=3 New York University School of Medicine Estimated Completion date: September 2019
Contact: Horacio Kaufmann MD, 212-263-7225,email@example.com Contact: Jose Martinez, MA, 212-263-7225, firstname.lastname@example.org
Two new studies open for patients with MSA The NYU Dysautonomia Center has 2 new clinical trials to test new drugs that are being developed for the treatment of OH in patients with MSA. Both compounds work by enhancing the body’s levels of norepinephrine. Both studies are also being carried out at the Autonomic Dysfunction Center at Vanderbilt University. NYU Dysautonomia Center and Vanderbilt are longtime collaborative partners in rare autonomic disorders.
(CLOSED RECRUITMENT) Study 1: A Phase 2 Study to Assess the Effect and Safety of TD-9855 in Subjects with Neurogenic Orthostatic Hypotension
This Study is in collaboration with Theravance Biopharma R & D They are testing the acute efficacy and safety of a new compound (TD-9855) in improving blood pressure and reducing orthostatic symptoms in patients that have neurogenic orthostatic hypotension (nOH), which includes those with MSA. This study is also open to patients with Pure Autonomic Failure (PAF) and Parkinson’s Disease (PD) with NOH.
Eligibility: 40 years and older, All Genders
Diagnosed with symptomatic orthostatic hypotension due to Parkinson’s disease, MSA or PAF (ie.neurogenic orthostatic hypotension)
At screening, a subject must meet the diagnostic criteria of neurogenic orthostatic hypotension, as demonstrated by a > 30 mm Hg drop in systolic blood pressure (SBP) within 5 minutes of standing.
Impaired autonomic reflexes, as determined by the absence of BP overshoot during phase IV of the Valsalva maneuver, in subjects where Valsalva is performs as appropriate.
For the optional open-label extension study subjects must have demonstrated a pressor effect and completed dosing in Cohort 1.
Estimated completion date: June 2018 (Completed, results not yet published) See study for further info and exclusions: https://clinicaltrials.gov/ct2/show/NCT02705755 NYU Information sheet: https://dysautonomiacenter.com/2017/04/10/two-new-studies-open-for-patients-with-msa/
STILL RECRUITING: Study 2: Norepinephrine Transporter Blockade, “Autonomic Failure”
This study is supported by The Food and Drug Administration’s Office of Orphan Product development. , We are testing whether we can repurpose an available drug (atomoxetine) as a treatment for neurogenic orthostatic hypotension (nOH). This study is also open to patients with MSA, pure autonomic failure (PAF), and Parkinson disease (PD) with OH.
Eligibility: 40 to 80 years old, any gender, with Neurogenic Orthostatic Hypotension (defined by a reduction of > 30 mmHg drop in SBP within 3 minutes of standing, associated with impaired autonomic reflexes as assessed by autonomic function tests.
Estimated completion date: July 2020
Contact: Bonnie Black, RN, 615-*343-6862, email@example.com Contact: Jose Martinez, 212-263-7225, Jose.Martinez@nyumc.org
See study for further info and exclusions: https://clinicaltrials.gov/ct2/show/NCT02784535
NYU Information sheet: https://dysautonomiacenter.com/2017/04/10/two-new-studies-open-for-patients-with-msa/
Recruiting: Vagal Stimulation in POTS - The Autonomic Inflammatory Reflex (Pilot 3) The purpose of this study is to investigate how the electrical stimulation of a nerve in the skin of your earlobe (transcutaneous vagal nerve stimulation) affects the way your autonomic nervous system controls your heart rhythm.
Eligibility: Participants must be female between the ages of 18-45 diagnosed with POTS.
See Study for further information and exclusions: https://www.rarediseasesnetwork.org/cms/autonomic/6111 This study is a part of the Rare Disease Clinical Research Network and the Autonomic Disorders Consortium
Contact: Vanderbilt University Medical Center Nashville
Misty Hale CCRP, 615-322-2931, misty.hale@Vanderbilt.edu
Recruiting: The Big POTS Survey is still recruiting This study’s lead investigator is Dr. Satish Raj MD MSCI, Adjunct Professor of Medicine at Vanderbilt University’s Autonomic Dysfunction Center. Dr. Rah says that the information collected as part of this survey “will help us learn more about the possible underlying causes and risk factors for developing POTS, treatments, and the economic, educational and social impact of POTS on patients and their families.” Dr. Raj serves on the Medical Advisory Board for DINET and Dysautonomia International. DI is sponsoring this survey.
It's that time again to promote awareness and education wherever we can. Let's face it, we are all dedicated to doing this 365 days a year, we don't need a special month to tell us to push awareness. But it is a great reminder to consolidate our efforts and start reaching out in ways we haven't before.
NEW YOUTUBE FEATURE: So for 2019, we have launched a new YouTube channel for DINET - with a feature called "The Chronic Corner". Our Social Media Coordinator, Lauren Mlack, will be posting new videos every month, with topics ranging from the latest information about treatment options to understanding the many forms of dysautonomia to living with chronic illness. There will always be something to learn, explore, share and question.
DISCUSSION AND SUPPORT have always been at the top of DINET's priorities. Whether you are more comfortable on Facebook or you prefer anonymous chats on our moderated forum, both offer you a way to connect with other people living with dysautonomia. Discussions range from comparing symptoms, asking questions about others experiences with a medication or treatment option, to handling the stress of chronic illness and so many more. You can read the forum anytime, but you do need to become a member if you want to join in the conversation. https://www.dinet.org/forums/ or check out our Facebook page - https://www.facebook.com/DysautonomiaInformationNetwork/
INFORMATION GUIDES: This is the time to share info with family and friends and help them understand what you live with everyday. Share the link or scroll to the pdf link at the bottom of the page and print. Share with people in the medical community who just don't understand the words on your chart like POTS, Dysautonomia, NCS, etc. Also, if you would like to share information with a group, we have printed materials that we are happy to send along. Please contact firstname.lastname@example.org with the name of the group and the number of packets you will need. Please allow 2 weeks to receive your request.
Pure Autonomic Failure (PAF)
A degenerative disease of the peripheral nervous system characterized by a marked fall in blood pressure upon standing (orthostatic hypotension). The orthostatic hypotension leads to symptoms associated with cerebral hypoperfusion, such as dizziness, fainting, visual disturbances and neck pain (Mathias, Mallipeddi & Bleasdale-Barr, 1999). Other symptoms such as chest pain, fatigue and sexual dysfunction may also occur. Symptoms are worse when standing and are sometimes relieved by sitting or lying flat.
Our web site provides links in our Link Directory to pure autonomic failure resources on the Internet.
Mathias, C. J., Mallipeddi, R. and Bleasdale-Barr, K. (1999). Symptoms associated with orthostatic hypotension in pure autonomic failure and multiple system atrophy. Journal of Neurology, 246, (10), 893-898.
Otherwise referred to: Neurally Mediated Syncope, Neurally Mediated Hypotension, Vasovagal Syncope
This disorder is characterized by an episodic fall in blood pressure and/or heart rate that results in fainting (Robertson, 2002). The disorder occurs intermittently, with patients sometimes reporting good health between episodes.
Our web site provides general information on NCS, and also explores its symptoms, mechanisms, diagnosis and treatment. More information about NCS can be found here - https://www.dinet.org/info/ncs/neurocardiogenic-syncope-info-r104/ We also include links to more web resources in our Link Directory.
Robertson, D. (2002, July). Drug therapy. National Dysautonomia Research Foundation Patient Conference. Washington, D.C.
by Margaret Rose Lombardi
Being adequately hydrated isn’t just an important part of physical health for people with POTS and other forms of dysautonomia. Without proper hydration, anyone's body can experience severe damage and even death. Knowing the signs and symptoms of dehydration for yourself and your family is critical during the summer months.
Feeling thirsty is the least reliable way to tell if a person has enough fluid in their body. Many people don’t feel thirsty until they are already dehydrated.
Not urinating at all, urinating infrequently, or urinating very small amounts
Dark colored urine with a strong odor
Feeling confused or acting “spaced out”
In Babies and Small Children
Dry mouth and tongue - lips sticking together
No urination or wet diapers for three hours
Extreme tiredness or irritability
Eyes and cheeks looking “hollowed out” or “sunken”
Indentation of the soft spot on top of the head (infants)
For both children and adults, dehydration is possible in hot weather, during exercise, and during illnesses, particularly if the person has diarrhea, vomiting or fever.
Dehydration can cause extreme damage to the healthiest of people, including:
Heat stroke, cramps, and heat exhaustion
Urinary and kidney damage - including kidney failure
Seizures - potassium and sodium (electrolytes) can become too low causing seizures. Electrolyte imbalance can also cause involuntary muscle contractions and unconsciousness.
Hypovolemic Shock - low blood volume causes a drop in BP and the amount of O2 in the body.
Why does dehydration affect POTS patients more than the average person?
For POTS and many other dysautonomia patients, the mechanism that regulates BP and HR when a person stands up is dysfunctional (BP goes down, HR goes up). Water intake counteracts this response, helping the symptom that leads to dizziness, pre-syncope, and syncope. Water intake can help to minimize BP’s reaction to standing in most patients.
In understanding the effect increased water intake can have on the symptoms associated with POTS and Dysautonomia, it is easy to understand how drinking just an average amount of water isn't enough and won't necessarily prevent symptoms.
It is extremely important, truly critical to understand that although the results of dehydration will be similar for POTS patients as it is for the healthy person, the steps to becoming dehydrated should not be underestimated. Excessive sweating is another of the functions of the autonomic nervous system that is dysfunctional in a person living with dysautonomia. Because of this, a person with these disorders can dehydrate regardless of the outside temperature. Couple this symptom with the body’s reaction to high summer heat and a potentially dangerous picture emerges.
The recommended way most POTS patients protect themselves from dehydration is by maintaining a combination of salt intake and electrolyte-rich drinks - all under the supervision of their physician. This is a crucial part of management that can’t be ignored, especially during the lazy, hazy days of summer.
The contents of this Web page are provided for informational purposes only and should not be used as a substitute for professional medical advice, diagnosis or treatment. Please keep in mind that new treatments are continually emerging and some of the older treatments may rarely be used.
Your physician may prescribe medication to decrease the symptoms of POTS. Doctors admit that treatment can be a challenge and that no single therapy is uniformly successful. Medications that are useful in some patients may have no effect in others (Jacob & Biaggioni, 1999). Occasionally medications can worsen symptoms. Medications used to treat POTS include the following:
Anti-arrhythmic drugs, such as disopyramide (norpace), have been used to treat POTS patients. However, studies have shown that some anti-arrhythmic drugs may increase the risk of death, and they are usually used only to treat life-threatening arrhythmias.
Benzodiazepines, such as Clonazepam (klonopin) or alprazolam (xanax), are not used as a first-line of treatment and can worsen tachycardia and hypotension. However, they may be helpful in select patients. Klonapin has been shown to be effective in the treatment of some patients with neurally mediated syncope (Kadri, Hee, Rovang, Mohiuddin, Ryan, Ashraf, Huebert & Hilleman, 1999). These drugs are central nervous system depressants. They are thought to enhance the effect of gaba, an inhibitory neurotransmitter. Benzodiazepines should be used with caution, as they are highly addictive. Some physicians do not advocate their use.
Beta Blockers are especially useful in those with elevated norepinephrine levels, beta-receptor supersensitivity and a hyperadrenergic state. Beta blockers can exacerbate hypotension and are not well tolerated by some dysautonomics. Beta blockers need to be used with caution, as they are known to reduce plasma renin activity. Research shows that hypovolemic orthostatic intolerant patients commonly have inappropriately low levels of plasma renin activity (Jacob, Robertson, Mosqueda-Garcia, Ertl, Robertson & Biaggioni, 1997). Reduced plasma renin activity may be an important pathophysiologic component of the syndrome of orthostatic intolerance (Jacob et al., 1997). Hence, some POTS patients may have low plasma renin activity that is contributing to their disorder. Beta blockers may further lower plasma renin activity in these patients. Therefore, the use of beta blockers in some hypovolemic patients may be counterproductive.
Beta blockers should be used with caution, if at all, in those with mast-cell activation disorders (Shibao, Arzubiaga, Roberts, Raj, Black, Harris & Biaggioni, 2005). Beta blockers may trigger mast-cell activation.
Cerefolin is a vitamin supplement that may help patients combat fatigue and feel more alert.
Clonidine (Catepres) is a centrally acting alpha-agonist agent. Clonidine inhibits sympathetic outflow (Grubb & McMann, 2001, p. 117). It can stabilize heart rate and blood pressure in patients with post-ganglionic sympathetic involvement (Gaffney, Lane, Pettinger & Blomqvist, 1983). Clonidine will actually display a vasoconstrictive effect in these patients.
Clonidine is started at 0.1 mg a day and titrated upward (Grubb, Kanjwal & Kosinski, 2006). It is available in a long-acting patch form.
DDAVP (Desmopressin) is used to help patients retain water. DDAVP can raise blood pressure and seems to be especially useful in lessening morning hypotension. It is a man made copy of the anti-diuretic hormone vassopressin. Vassopressin and DDAVP stimulate the kidneys to concentrate urine.
Droxidopa (Northera) Droxidopa, a norepinephrine (NE) precursor, improves symptoms of neurogenic orthostatic hypotension (nOH) by replenishing NE levels. Central NE effects are poorly described but may offer potential benefits given the pathophysiologic progression of alpha-synuclein related disorders.
Erythropoietin raises blood pressure and red cell mass. Red blood cell volume has been found to be low in POTS patients (Raj, Biaggioni, Yamhure, Black, Paranjape, Byrne & Robertson, 2005). Erythropoietin is also a potent vasoconstrictor and is quite useful in the treatment of orthostatic disorders (Grubb, Kanjwal & Kosinski, 2006). There may be an impairment in erythropoietin production and/or function in some individuals with POTS. Erythropoietin reportedly works in 80% of patients (Grubb, 2002). One study showed that erythropoietin administration led to dramatic improvements in some patients with orthostatic hypotension (Hoeldtke & Streeten, 1993). However, a later study of (only) 8 patients with orthostatic tachycardia reported that erythropoietin did not help the tachycardia (Hoeldtke, Horvath & Bryner, 1995). Erythropoietin is not commonly used because it has to be injected and is expensive. Procrit is a common medication that increases erythropoietin, which in turn increases red blood cell mass. Patients treated with erythropoietin may need iron supplementation as their hematocrit rises.
Prior to starting erythropoietin, a complete serum blood count (CBC) as well as a serum iron, total iron binding capacity, and ferritin level should be obtained by one's physician (Grubb, Kanjwal & Kosinski, 2006). Erythropoietin can be employed as long as the hematocrit (HCT) is less than 50, and patients appear to achieve the best hemodynamic effect when the HCT is in the low to mid-40 range. The usual starting dose of erythropoietin is 10,000 units injected subcutaneously once weekly, and it usually takes 4-6 weeks to see the full effects of this medication (Grubb, Kanjwal & Kosinski, 2006). Patients should have their HCT checked monthly to make sure it is below 50.
Florinef (Fludrocortisone) increases plasma volume. It helps the body to retain salt and water. It also sensitizes blood vessels so that they can constrict more easily (Haran, 2004). Some doctors administer salt tablets with florinef. This is because the effectiveness of Florinef depends upon salt intake. Florinef can deplete potassium and magnesium and supplements may be required. Florinef increases intracranial pressure and should not be used in patients with hind brain compression. Numerous symptoms of sympathetic overactivity are enhanced by Florinef and some people develop severe headaches as a result of treatment (Schondorf & Freeman, 1999). Florinef is a mineralocorticoid and, like beta blockers, can reduce levels of plasma renin activity (Jacob et al., 1997). Reduced levels of plasma renin activity correlate with the hypovolemia observed in some POTS patients. Florinef may be a counterproductive treatment in these patients.
Usually, POTS patients are prescribed 0.1-0.2 mg of fludrocortisone daily. The dose should never exceed 0.4 mg orally each day as adrenal suppression may occur (Grubb, Kanjwal & Kosinski, 2006).
Ivabradine, a sinus node blocker, has reportedly helped some POTS patients experience less symptoms. Ivabradine is sometimes used as an alternative to beta-blockers because it results in heart rate reduction without vasodilation, sexual disturbances, ornegative inotropic effects.
Labetalol is sometimes used in POTS patients because it induces both alpha- and beta-blockade. Dosages of 100-400 mg orally twice a day may be employed (Grubb, Kanjwal & Kosinski, 2006). Carvedilol works in a similar fashion to labetalol and is also sometimes employed as a treatment for POTS.
Methyldopa is helpful in select POTS patients (Grubb, Kanjwal & Kosinski, 2006).
Mestinon (Pyridostigmine Bromide) has traditionally been used to treat myasthenia gravis, but is now sometimes being used to treat POTS patients (Grubb, 2002). Mestinon works by inhibiting the breakdown of acetylcholine. Acetylcholine is the main chemical messenger of the parasympathetic nervous system. Some POTS patients may have immune systems that are mistakenly making antibodies that are plugging up acetylcholine receptors (Grubb, 2002). Mestinon works to unplug these receptors by allowing more acetylcholine to remain at the neuromuscular junction. Mestinon is particulary useful in patients who have the postviral, paraneoplastic or autoimmune forms of POTS. Mestinon is usually started at 30 mg orally twice a day, titrating to 60 mg orally twice daily, if necessary (Grubb, Kanjwal & Kosinski, 2006).
Motrin (Ibuprofen) or Indocin (Indomethacin) might be beneficial treatments for patients with postprandial hypotension (Hilz, Marthol & Neundorfer, 2002). Postprandial hypotension refers to low blood pressure occurring after meals. Motrin and indocin block the blood pressure lowering effects of prostaglandins (Hain, 2001). Studies have suggested that nonsteroidal anti-inflammatory drugs may also lower one's risk of developing Alzheimer's disease(in t' Veld, Ruitenberg, Hofman, Launer, van Duijn, Stijnen, Breteler & Stricker, 2001). However, long term use of nonsteroidal anti-inflammatory drugs can have serious side effects.
Phenobarbital is a central nervous system depressant. It can be useful in the hyperadrenergic form of dysautonomia. However, phenobarbital is a barbiturate and people can become addicted to this drug. Barbiturates can also cause fainting (Grubb & McMann, 2001, p. 109).
Prednisone, plasma exchange or intravenous gamma globulin may be used in patients who are in the acute post-viral phase of the illness (Low, Schondorf, Novak, Sandroni, Opfer-Gehrking & Novak, 1997, p. 694). These treatments are most likely to be effective in patients displaying evidence of an acute autonomic neuropathy.
Saline has shown to be very beneficial in decreasing POTS symptoms. It is an inexpensive treatment with few side effects. However, saline must be given through an IV, which is time consuming and may require trips to the doctor's office. Some of the most severely affected patients report having a peripherally inserted central catheter (PICC line) inserted so that IVs can be administered at home. However, some physicians do not believe the benefits outweigh the possible risks associated with a PICC line.
Selective Serotonin Reuptake Inhibitors (SSRI's) are sometimes used to treat those with autonomic disorders. SSRI's are used because serotonin is the principal neurotransmitter that the brain uses to govern autonomic control, in particular to govern blood pressure (Haran, 2004). Studies have shown that some patients with autonomic disorders may have disturbances in central serotonin production and regulation (Grubb & Karas, 1998). SSRI treatment can suppress the sympathetic nervous system (Shores, Pascualy, Lewis, Flatness & Veith, 2001). Venlafaxine is particularly effective, possibly due to its actions on norepinephrine as well as serotonin. It has been reported that SSRI's may be effective in treating the chest pain that is associated with dysautonomia (Low, 2000). However, the FDA has issued a public health advisory regarding antidepressants, and they should be used with caution.
Sleep medications are used by some POTS patients. A number of patients have significant sleep disturbances (Low, 2000). Some patients report successfully using natural alternatives to sleep medication. Herbal remedies should be used with caution and under a physician's supervision, as there are known risks with some OTC sleep aids. For example, the FDA has issued warnings regarding Kava Kava and melatonin supplements have been shown to worsen orthostatic intolerance.
Stopping menstruation through the use of birth control pills has reportedly helped some patients feel better. Many women report a worsening of symptoms around menstruation. Stopping menstruation is somewhat controversial, and not all physicians advocate it.
Vasoconstrictors such as ergotamine, midodrine, octreotide, ephedrine, pseudoephedrine, yohimbine, theophylline and ritalin improve venous tone which decreases pooling blood.
Midodrine is particularly useful in patients with peripheral denervation (Low, 2000). Midodrine is usually started at 5 mg orally three times a day and can be titrated up to 15-20 mg orally four times a day, if necessary (Grubb, Kanjwal & Kosinski, 2006). Midodrine can be used on an as needed basis. Theoretically, continuous use of midodrine could result in constriction of blood volume due to chronic sympathetic activation (Jacob & Biaggioni, 1999).
Octreotide is especially useful in preventing vasodilation in the gut, thereby reducing splanchnic pooling. Its actions help to prevent postprandial hypotension (low blood pressure after meals). Octreotide inhibits the release of a variety of gastrointestinal peptides and also may reduce postural and exercise induced hypotension (Mathias, 2003). Octreotide does not often appear to enhance supine nocturnal hypertension, however one study reports that it is a possible side effect (Hoeldtke, Bryner, Hoeldtke & Hobbs, 2007).
Octreotide is administered by subcutaneous injection starting at 50 µg 2-3 times a day, and dosages may be titrated up to 100-200 µg three times a day (Grubb, Kanjwal & Kosinski, 2006). A long-acting injectable form has also been developed.
Ephedrine is not often used due to its short half-life and undesirable B-adrenergic actions (Jacob & Biaggioni, 1999). Ephedrine can cause tachycardia.
Theophyllineis primarily used in asthma patients. One of its effects is to increase vasoconstriction, therefore theophylline is sometimes used to treat dysautonomia (Grubb & McMann, 2001, p. 116).
Ritalin increases peripheral vascular resistance via alpha receptor stimulation (Grubb, Kosinski, Mouhaffel & Pothoulakis, 1996). Ritalin is prescribed by some physicians, but can be addictive.
Wellbutrin (Bupropion) is a central nervous system stimulant. It is a dopamine agonist and also a weak blocker of the neuronal uptake of serotonin and norepinephrine. Wellbutrin is not habit forming and works immediately. Wellbutrin can sometimes be used to combat the fatigue that plagues POTS patients.
There are also many non-pharmaceutical methods to decrease the symptoms of POTS. These include the following:
Butcher's broom may lessen orthostatic hypotension in some patients (Redman, 2000). Studies show that butcher's broom does not cause supine hypertension and that it can alleviate the worsening of symptoms in hot environments. Butcher's broom is a vasoconstrictor that reduces capillary permeability. Butcher's broom has been used as a diuretic, so patient's need to be especially cautious about taking it. Butcher's broom should only be taken under a doctor's supervision.
Changing eating habits and diet can help relieve hypotension. Patients should eat frequent small meals instead of three large meals a day. This will help reduce the amount of blood needed for digestion. Hence, more blood will be available for the brain and heart. Refined carbohydrates, such as white flour and sugar, can exacerbate hypotension (Mathias, 2000). There are patients that report a worsening of symptoms when eating certain foods, such as dairy products. It is important for each patient to identify and avoid their food triggers.
Cooling devices can help POTS patients. There are many different types of personal cooling vests available that may help patients tolerate hot environments.
Countermaneuvers can help to decrease symptoms by lessening the amount of blood that pools in one's legs. Useful countermaneuvers include: standing with your legs crossed, sitting in a low chair, sitting in the knee to chest position, leaning forward with your hands on your knees when sitting and tightening the buttocks, thigh and leg muscles when standing (particularly when standing for any length of time). Research shows that tensing the leg muscles while standing enhances brain blood flow and reduces sympathetic activity (van Lieshout Pott, Madsen, van Goudoever & Secher, 2001.) Squatting can also be a useful countermaneuver, although some patients report an increase in symptoms after squatting.
Compression devices, such as abdominal binders and compression stockings, help to reduce the amount of pooling blood. Compression stockings should be at least 30-40 mm Hg and will work best if they are waist high (Grubb & Karas, 1999). Compression stockings should be fitted to achieve the greatest benefit. Many insurance plans will cover the cost of prescribed compression stockings if purchased through a medical supply company. They are also available without prescription through many online retailers.
One POTS patient has found relief of symptoms by wearing a G-suit, and she has created a website that details her experience with this compression device. Her website begins "G-suits are pants that can save the life of a fighter pilot. G-suits are pants that have 'saved' my life too." Click here to visit this patient's informative website.
Correcting anemia has been shown to improve orthostatic tolerance (Low, 1994).
Elevating the head of the bed 4-12 inches has helped some POTS patients become less symptomatic. It has been reported that elevating the head of the bed generates mechanisms that expand plasma volume (Low, 2000).
Exercise can be helpful to those with dysautonomia. It is important that one does not let their body become deconditioned, as this will exacerbate symptoms. Tightening and building the leg muscles will help them to squeeze pooling blood back to the upper part of the body. Swimming in water has been reported to help many dysautonomics, however no one who faints should go into water alone. Yaz Exercises and recumbent stationary bikes may be beneficial to some patients with POTS. Aerobic exercise performed for 20 minutes a day, three times a week, is sometimes recommended for patients who can tolerate it (Grubb, Kanjwal & Kosinski, 2006).
Getting plenty of rest is very important for those with POTS. It has been reported that some POTS patients have significant sleep disturbances (Low, 2000). These patients may require more sleep than the average person.
Heart rate watches can help patients identify situations that trigger heart rate increases. These watches are available at sports stores or can be purchased on the Internet.
Ice has reportedly helped some POTS patients. Rubbing ice on the body, especially on the bottom of the feet or neck, may help some POTS patients ward off an episode.
Increasing fluids helps many people with POTS to feel better. Many POTS patients report Gatorade or electrolyte solutions to be particularly helpful. Drinking water has been shown to moderately reduce orthostatic tachycardia in patients with idiopathic orthostatic intolerance (Shannon, Diedrich, Biaggioni, Tank, Robertson, Robertson & Jordan, 2002). Drinking large amounts of water helps to raise blood pressure (Jordan, Shannon, Grogan, Biaggioni & Robertson, 1999). Consuming large amounts of water increases blood volume, which is especially useful in the hypovolemic and those with pooling blood. Some patients report that drinking water before getting out of bed in the morning helps decrease symptoms. Physicians suggest patients drink eight eight-ounce glasses of water daily (Low, 2000). Patients should not drink excessive amounts of water because doing so can cause essential electrolytes to become diluted in the bloodstream, which may affect heart rhythm.
Increasing salt is a treatment used for many people with POTS, however salt is not recommended for all patients.
While normal subjects reduce urinary sodium excretion on assumption of upright posture, patients with orthostatic intolerance do so ineffectively (Vanderbilt University Autonomic Dysfunction Center, 1999). Impaired renal sodium conservation can contribute to hypovolemia (Streeten, 1999). One study found POTS patients to have inappropriately low levels of renin and aldosterone, two hormones that promote sodium retention and increase plasma volume (Raj, Biaggioni, Yamhure, Black, Paranjape, Byrne & Robertson, 2005). Renin and aldosterone are both regulated by the kidney.
Increasing salt is an effective way to raise blood pressure in many patients with orthostatic hypotension. Salt helps to expand blood volume. A number of patients find salt tablets and/or electrolyte solutions to be helpful. Some physicians suggest patients who benefit from salt take in 10-15 grams daily (Low, 2000). Other physicians suggest between 3-5 grams of salt per day (Grubb et. al., 2006). Salt is 39% sodium, therefore 15 grams of salt equals 5,850 mg of sodium.
Licorice root has been used as a remedy for various disorders throughout history. Itcan sometimes be used as an alternative to Florinef. Licorice root does have some side effects, and patients should get a physician's approval before taking it.
Magnesium may be helpful to a number of POTS patients. Magnesium is sometimes prescribed to POTS patients with Ehlers-Danlos syndrome. Some patients report a decrease in arrhythmias after taking this mineral daily for a few weeks. Magnesium deficiency can cause many of the symptoms associated with POTS. Excessive norepinephrine levels can deplete magnesium levels. Magnesium should be used cautiously as it can lower blood pressure.
Scheduling activities in the afternoon as opposed to the morning is a wise decision for those with POTS. Most patients report symptoms being greater in the morning hours.
Sitting down in the shower instead of standing is helpful to many patients. It is important to avoid hot water as this will dilate blood vessels and exacerbate symptoms. Rinsing the legs (or whole body) in cold water before exiting the shower will constrict the blood vessels and should help one to feel less faint.
A sock filled with warmed rice may provide some relief from the headaches that can accompany dysautonomia. Rice socks can be made by filling a tube sock with uncooked white rice, tying the sock closed at the end. Heat the rice filled sock in the microwave for a couple of minutes until warm. Be careful not to overheat, and be cautious of hot spots. The rice will hold heat and provide long-lasting relief of headaches.
Standing up slowly will give a patient's body more time to adjust to upright posture. Patients getting up from a lying position may find it beneficial to sit up for a few minutes before standing.
Treating allergies might help one to feel better. It has been reported that people with POTS lose their ability to vasoconstrict (Grubb, 2000). This means that many POTS patients have problems with their blood vessels being excessively dilated. Histamine is known to dilate blood vessels, which can further lower blood pressure in POTS patients.
Allergies may also stimulate the sympathetic nervous system. Many POTS patients have overactive sympathetic nervous systems and benefit from avoiding potential sympathetic stimulants.
Walking around right after getting out of bed is beneficial to some patients. The constricting leg muscles help to counteract pooling blood.
Wearing ankle weights compels the leg muscles to work harder, thereby forcing pooling blood back into the upper body. It is especially helpful to put the weights on before getting out of bed in the morning. Ankle weights should not be worn continuously, as the body will then adjust to the extra weight and they will no longer be effective. Ankle weights should be used with caution, as they can possibly interfere with one's normal gait which can cause injury.
It is important for one to consult a physician before trying any of the above treatments. Treatments that are beneficial to one patient may be detrimental to another.
Do you know of something that may help POTS patients but is not listed here? Please send suggestions to: email@example.com
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Managing & Enjoying Life After reading an article, use your browser's back button to easily return to the Table of Contents on this page.
Surviving the Guilt that Comes with Chronic Illness by Amy Keys The Ins and Outs of Owning and Training a Service Dog by Ellen Driscoll Dehydration by Margaret Rose Lombardi Enjoying Life at National Parks by Hallie MacDonald Beat the Heat by Amy Keys Meet the Member: Erin's Story by Chelsea Goldstein Medical Q & A - Member Questions Answered by DINET's Medical Advisors Updated - Research and News about Dysautonomia and Related Illnesses Updated - Open Recruitment Studies
by Amy Keys
Chronic illness comes with a smorgasbord of difficulties, but one sure to be at the center of the struggle buffet is GUILT. Guilt manifests in many forms and can quietly sneak in a bit at a time or viciously attack all at once. It's silly to think that a person could feel guilt over something that certainly wasn't their doing or their fault, but yet it is incredibly common. Understanding the different types of guilt experienced can be helpful for the patient, and more importantly, for the family and friends of that person as well.
The most obvious type of guilt comes with the financial burden. “My medical procedures and medications are costing this family so much money.” “Maybe we would have a saving account if it weren’t for the emergency room visits.” “I could be making money if I weren’t sick." It's one thing to be too sick to work, but how discouraging to not only be unable to make money but also spend money on health expenses nonstop.
Beyond finances, frequently the one who suffers from a chronic condition feels like a physical burden to family and friends. From needing a lift assist to helping with simple hygiene needs, the physical toll can be exhausting to those acting as caretakers. It can be hard to think that your health is draining the energy of your family.
The guilt that comes with canceling plans at the last minute or even failing to commit to begin with can be quite upsetting as well. Once again, becoming ill or flaring is not something within a chronically ill person's control. It's so hard to imagine people thinking of you as an irresponsible person because you can't always be counted on for an event. This perception is even more likely with so-called 'invisible illnesses' - nothing like looking great but feeling too fatigued to even leave bed. It can be debilitating to wonder and worry about what people are saying about you behind your back. What if they truly think you're just a flake? What if you have to call in sick to work? Now the person with the condition feels like they are burdening not only their family but their coworkers too.
Several people deal with guilt over having specific food restrictions and needs. It can be hard to be the 'high maintenance' one of the group who can only eat at particular establishments, or can only cook certain foods.
The types of guilt experienced can seem daunting and unending. So, what can be done? I find it helpful to think about the facts of the matter and only what is within my control. Can I suddenly make myself able to work? Can I decide not to have medical expenses? Can I make myself well enough to be sure I can make it to that event? No. It's ok to feel frustrated for a moment, but don't allow yourself to spend too much time on something that you have no control over. It's important to stop, take a deep breath, and empower yourself by shifting your focus and guiding your thinking in more positive directions.
First of all, remember that your health is the top priority, both physical and emotional. Try a gratitude journal to keep your mindset on the positive, instead of frustrations and negatives. Remember to take time for self-care as well; whichever type is best for you.
Focus on the fact that if it were your family member who was struggling with illness, you wouldn't feel burdened. You would take it in stride and not resent them for the changes to both your lives. Perhaps when a loved one tells you that you aren't a burden, give them the same benefit of the doubt and know that they mean it.
Realize that you still have value and purpose; it may be different than it was, but you still have a place in the lives of your family and friends. You can still encourage the people around you and help in other ways. This is not the end of your story.
We welcome your letters to DINET's Medical Advisors. Please be aware that the information provided is not meant to be a diagnosis or medical advice. It is provided to give you background information to discuss with your medical team and general information to keep you well informed about dysautonomia disorders. If you have a question for our advisors, please send to firstname.lastname@example.org
Related Questions from Two Members:
Question #1 from Member Bxxx:
Hello, Please can you explain how someone can feel extremely lightheaded and faint when they are sitting with a completely normal heart rate and blood pressure?
I understand you can still have low stroke volume and hence cardiac output, which is not measurable without invasive tests.
I have heard other patients say they also feel presyncopal with normal observations, but medical professionals often do not seem to understand this.
Question #2 from Christina
Hello, I’m a Dinet volunteer, username clb75. I have a question for the medical advisory board.
Many people with Pots experience dizziness when upright even though their BP and heart rate are normal. What causes this and what are the best ways to treat this type of dizziness?
Answer from Dr. Satish Raj
I think that there are a couple of issues here – one of nomenclature and one of physiology.
The nomenclature problem is with the word “dizzy”. It is not a medical term and could refer to two different medical problems: vertigo or light-headedness. Vertigo is where either the room spins around you or you spin within the room. This is usually not a blood pressure (or heart rate) issues but can be due to problems with the inner ear or brainstem. Light-headedness is the feeling that one is going to faint, although to a lesser degree than when actually fainting. In some languages, the term for light-headedness directly translates to “head spinning”, making it difficult at times to sort these out.
The second issue, assuming that it is light-headedness that is being discussed, is physiology. Low blood pressure or a low or high heart rate DO NOT, in and of themselves, cause light-headedness. They do this presumably by altering blood flow in the brain, and perhaps the delivery of nutrients (such as oxygen or glucose) to the brain. This disruption could occur on a more local scale (within the brain) as well. Many things alter blood flow in the brain…many more than I can name. Something as simple as breathing can do so. Hyperventilation, for example, can do this.
The challenge is that light-headedness is a common symptom that can be caused by many/most medical disorders. That is why, in many cases, more specific presentations (e.g. association with tachycardia or with fainting) are needed to help to narrow down the list of possibilities.