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2017 was a year full of changes for DINET, changes that have had a positive impact on our members and the organization. The year began with the launch of the new website, which almost overnight doubled our reach nationally and internationally. Our forums saw a meteoric rise in new topics and continued discussions - a trend that continues to this day. We entered into partnerships with organizations that provide very different, but equally important support for dysautonomia patients, caregivers and physicians. And we have seen a significant increase in crossover discussions between our Facebook followers and our site members. The outreach and growth has not only been within the patient community. Through our partnership with Outcome Health, DINET now has digital information screens in thousands of neurology, cardiology and primary care offices, with more being added all the time. Here are some other important initiatives: -- DINET produced a patient survey focused on gaining a better insight into the age of onset of symptoms and the diagnostic experience of our members. The final results are still being assembled for publication on our site. -- For October Awareness, DINET produced Information Guides for patients to use to help explain autonomic dysfunction in simple, non-medicalized terms. October also produced many discussions and Facebook posts about the time it takes from symptom onset to diagnosis. And along with the fantastic work from our partners, DINET reached thousands of new patients & physicians with information, resources and messages of hope and support. -- Survey Sundays. A new Facebook feature that asks a new question every Sunday about a different aspect of living with dysautonomia. -- Featured Member Projects launched its first set of members in November. Every few weeks we share the talents and interests of a DINET member (or two). The project can be anything that a member does to keep themselves active, entertained, and happy. We’ve seen photos of member’s pets, beautiful artwork, music, movies, poetry, children’s books, gardens...the list goes on. We’ve received so many requests to participate from members that we had to hit the pause button on new applications. But keep checking back, we will be accepting new applications in January. Our Partner Banana Bag Solutions are offering DINET members a special discount on their already discounted subscription prices. A 10% discount on any subscription to their products for the life of the subscription. This is a 10% savings on the already discounted subscription price. Go to https://www.bananabagdrink.com/products/the-banana-bag-oral-solution & use promo code DYS10 to receive the additional 10% off at checkout. What an incredibly generous way to support our membership and the work we do. Great thanks to Banana Bag! Volunteers DINET is so very lucky to have an amazing group of volunteers willing to share their talents to help other patients and caregivers and to raise awareness about autonomic dysfunction in all its forms. Without our volunteers, DINET would not exist. We are a 100% volunteer based organization and we are all patients and caregivers as well. Volunteering is a rewarding experience too. It is a fact that giving is good for your health and it doesn’t take much to reap the rewards. It is a tremendously restorative experience to put your own feelings of discomfort aside for a moment or two, and instead, to focus your energy on helping another person, If you have found help, support or community through DINET, please consider giving back to the organization by helping out. Here are a few volunteer opportunities needed now….. Forum Reader The role of a Forum Reader is a very important part of keeping the forum community safe & accessible for all members. The Forum Reader needs to have a solid understanding and familiarity with the Forum Guidelines. The Reader reads new posts and reports any guideline conflicts to the Forum Admin or Moderators. The work can be done anywhere and at any time of day, but it is required that the Reader be able to login every other day to read new posts. The forum operates as a team so all members need to be comfortable working with other people in an online environment. Forum Moderator in Training A Forum Moderator is a critical role in the forum community and requires training. To be considered for this role, a volunteer needs to be an active forum member in excellent standing for a minimum of 6 months. A Moderator in Training begins as a Forum Reader to acclimate to the reporting structure and the types of conflicts most commonly seen. The Moderator’s position requires logging in to read and edit (if needed) 3 - 4 times per week. The Moderators and Administrator work closely together to make decisions about content and guidelines, so it is important to be able to work within a group effectively. The Forum positions are some of the most rewarding volunteer opportunities available with DINET. To learn more about volunteering on the Forum, or to begin the application process, please email the Forum Administrator at dinetforums@dinet.org Social Media Assistant DINET is ramping up our social media activity but we need help to do it. Our Facebook page interactions have quadrupled in the past 6 months and are growing more each week. Our Social Media Coordinator needs someone who would really enjoy posting, linking and chatting online with patients living with dysautonomia. To volunteer in this position, you need to be very familiar with Facebook and at least one other - Twitter, Instagram, Youtube, SnapChat. The position would require a commitment to post at least 2 days per week. To learn more or to apply, please email webmaster@dinet.org Website Proofreader If you have an eye for details, can take good notes, know how to check web links and generally have a good command of the english language, this is a perfect volunteer opportunity for you. This position only requires 2 - 4 hours per month and it can be done at any time convenient for you. There may be times when your help is requested for a specific project or task, but this would be arranged in advance. The work requires going through content and taking notes for any typos, misspelled words, grammatical/punctuation errors, checking links to be sure they go to the appropriate page and taking notes about any errors found. This is a great way to volunteer especially if you are not sure how much time you can devote or if you have been away from work for a while and are not sure how much you can take on. If you are interested in this position, please email webmaster@dinet.org Thanks to all for a wonderful 2017! Best of health for all in 2018... Return to Newsletter Table of Contents - December 2017

2017 was a year full of changes for DINET, changes that have had a positive impact on our members and the organization. The year began with the launch of the new website, which almost overnight doubled our reach nationally and internationally. Our forums saw a meteoric rise in new topics and continued discussions - a trend that continues to this day. We entered into partnerships with organizations that provide very different, but equally important support for dysautonomia patients, caregivers and physicians. And we have seen a significant increase in crossover discussions between our Facebook followers and our site members. The outreach and growth has not only been within the patient community. Through our partnership with Outcome Health, DINET now has digital information screens in thousands of neurology, cardiology and primary care offices, with more being added all the time. Here are some other important initiatives: -- DINET produced a patient survey focused on gaining a better insight into the age of onset of symptoms and the diagnostic experience of our members. The final results are still being assembled for publication on our site. -- For October Awareness, DINET produced Information Guides for patients to use to help explain autonomic dysfunction in simple, non-medicalized terms. October also produced many discussions and Facebook posts about the time it takes from symptom onset to diagnosis. And along with the fantastic work from our partners, DINET reached thousands of new patients & physicians with information, resources and messages of hope and support. -- Survey Sundays. A new Facebook feature that asks a new question every Sunday about a different aspect of living with dysautonomia. -- Featured Member Projects launched its first set of members in November. Every few weeks we share the talents and interests of a DINET member (or two). The project can be anything that a member does to keep themselves active, entertained, and happy. We’ve seen photos of member’s pets, beautiful artwork, music, movies, poetry, children’s books, gardens...the list goes on. We’ve received so many requests to participate from members that we had to hit the pause button on new applications. But keep checking back, we will be accepting new applications in January. Our Partner Banana Bag Solutions are offering DINET members a special discount on their already discounted subscription prices. A 10% discount on any subscription to their products for the life of the subscription. This is a 10% savings on the already discounted subscription price. Go to https://www.bananabagdrink.com/products/the-banana-bag-oral-solution & use promo code DYS10 to receive the additional 10% off at checkout. What an incredibly generous way to support our membership and the work we do. Great thanks to Banana Bag! Volunteers DINET is so very lucky to have an amazing group of volunteers willing to share their talents to help other patients and caregivers and to raise awareness about autonomic dysfunction in all its forms. Without our volunteers, DINET would not exist. We are a 100% volunteer based organization and we are all patients and caregivers as well. Volunteering is a rewarding experience too. It is a fact that giving is good for your health and it doesn’t take much to reap the rewards. It is a tremendously restorative experience to put your own feelings of discomfort aside for a moment or two, and instead, to focus your energy on helping another person, If you have found help, support or community through DINET, please consider giving back to the organization by helping out. Here are a few volunteer opportunities needed now….. Forum Reader The role of a Forum Reader is a very important part of keeping the forum community safe & accessible for all members. The Forum Reader needs to have a solid understanding and familiarity with the Forum Guidelines. The Reader reads new posts and reports any guideline conflicts to the Forum Admin or Moderators. The work can be done anywhere and at any time of day, but it is required that the Reader be able to login every other day to read new posts. The forum operates as a team so all members need to be comfortable working with other people in an online environment. Forum Moderator in Training A Forum Moderator is a critical role in the forum community and requires training. To be considered for this role, a volunteer needs to be an active forum member in excellent standing for a minimum of 6 months. A Moderator in Training begins as a Forum Reader to acclimate to the reporting structure and the types of conflicts most commonly seen. The Moderator’s position requires logging in to read and edit (if needed) 3 - 4 times per week. The Moderators and Administrator work closely together to make decisions about content and guidelines, so it is important to be able to work within a group effectively. The Forum positions are some of the most rewarding volunteer opportunities available with DINET. To learn more about volunteering on the Forum, or to begin the application process, please email the Forum Administrator at dinetforums@dinet.org Social Media Assistant DINET is ramping up our social media activity but we need help to do it. Our Facebook page interactions have quadrupled in the past 6 months and are growing more each week. Our Social Media Coordinator needs someone who would really enjoy posting, linking and chatting online with patients living with dysautonomia. To volunteer in this position, you need to be very familiar with Facebook and at least one other - Twitter, Instagram, Youtube, SnapChat. The position would require a commitment to post at least 2 days per week. To learn more or to apply, please email webmaster@dinet.org Website Proofreader If you have an eye for details, can take good notes, know how to check web links and generally have a good command of the english language, this is a perfect volunteer opportunity for you. This position only requires 2 - 4 hours per month and it can be done at any time convenient for you. There may be times when your help is requested for a specific project or task, but this would be arranged in advance. The work requires going through content and taking notes for any typos, misspelled words, grammatical/punctuation errors, checking links to be sure they go to the appropriate page and taking notes about any errors found. This is a great way to volunteer especially if you are not sure how much time you can devote or if you have been away from work for a while and are not sure how much you can take on. If you are interested in this position, please email webmaster@dinet.org Thanks to all for a wonderful 2017! Best of health for all in 2018... Return to Newsletter Table of Contents - December 2017

Ongoing Study Information Recruiting: 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 long time collaborative partners in rare autonomic disorders. Contact information and more information about the studies can be found in this article. 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 ear lobe (transcutaneous vagal nerve stimulation) affects the way your autonomic nervous system controls your heart rhythm. Participants must be females between the ages of 18 - 45 with POTS. To learn more about this study or to participate, visit https://www.rarediseasesnetwork.org/cms/autonomic/6111 Recruiting: Clinical Autonomic Disorders: A Training Protocol is a study to learn more about dysautonomias for the specific purpose of developing training protocols to help new physicians understand the illness and to better diagnose patients. To participate in the study or read more about it, visit our studies page or go directly to the clinical trials site. Recruiting: The Big POTS Survey is still going on. Vanderbilt University and Dysautonomia International sponsored survey. The study's lead investigator is Dr. Satish Raj, MD MSCI, Adjunct Professor of Medicine at Vanderbilt University's Autonomic Dysfunction Center. Dr. Raj 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. Go directly to the survey News and Information Deadly risks of taking kratom This seemingly innocent natural product can be very harmful to your health. IMPORTANT INFORMATION: POTS & Ehlers-Danlos Syndrome "Postural tachycardia in hypermobile Ehlers-Danlos syndrome: A distinct subtype?" by Miglis MG, Schultz B, and Muppidi S, from the Departments of Neurology and Psychiatry at Stanford University Medical Center. "It is not clear if patients with postural tachycardia syndrome (POTS) and Ehlers-Danlos syndrome (hEDS) differ from patients with POTS due to other etiologies. We compared the results of autonomic testing and healthcare utilization in POTS patients with and without hEDS." https://www.ncbi.nlm.nih.gov/pubmed/28986003 POTS Related Information Estimation of Sleep Disorders using Wrist Actigraphy in Patients with POTS https://ww2.mc.vanderbilt.edu/adc/43572 Investigators conducted a questionnaire study to assess sleep disturbances and quality of life in patients with POTS and healthy subjects. Patients with POTS and healthy volunteers were given several surveys to assess their sleep (Epworth Sleepiness Index & Medical Outcomes Study [MOS] Sleep Survey), level of fatigue (a visual analogue scale) and health related quality of life (RAND36 and EQ5D). Patients with POTS reported more sleep problems, daytime sleepiness and fatigue, and worse health related quality of life than the healthy volunteers. Patients with POTS had a markedly diminished quality of life in both physical health and mental/social health domains compared to the healthy volunteers. The scores were comparable to previously published scores for patients with kidney failure requiring hemodialysis. The Vanderbilt data were similar to a prior publication from the Mayo Clinic {PMID: 12059122} that also found diminished quality of life in patients with POTS. There was a strong correlation between sleep problems and physical and mental health related quality of life. In fact, 60% of the variability in score for each of the physical health domain and the mental health domains could be accounted for by the Sleep Problems Index (a summary score from the MOS Sleep Survey). Orthostatic Intolerance and Tachycardia Associated with Norepinephrine-Transporter (NET) Deficiency https://www.ncbi.nlm.nih.gov/pubmed/10684912 Lack of function of the norepinephrine-transporter can cause POTS* Some years ago, a patient with POTS was found to be heterozygous (had one copy of the mutant allele) for a mutation in the norepinephrine transporter gene that caused a single amino acid (protein building block) change in the protein (A457P). The mutation was “dominant negative” and resulted in an almost complete “loss of function” of the norepinephrine transporter compared to the normal gene. Since the transporter is involved in clearance of norepinephrine from the sympathetic nerve synapse (area between nerve terminals), this mutation likely led to an increase in norepinephrine in the synapse, and in excessive sympathetic activation. This likely resulted in the excessive heart rate seen in this patient, which was worse on standing (when there would be more sympathetic nervous system activation). Other members of this patient’s family that had this genetic mutation also had a greater increase in heart rate with standing and elevated plasma norepinephrine compared to those without this genetic mutation. This demonstrates that orthostatic intolerance and tachycardia are associated with norepinephrine transporter deficiency. Do Other Non-Related Patients Have This Mutation? For several years, we looked for this mutation in other POTS patients. We have not found any other non-related patients to have this same loss of function mutation. Decreased NET Protein Expression in Some POTS Patients We had just about lost hope in NET deficiency as an important contributor to POTS in many patients. More recently, colleagues from Melbourne Australia published a very nice paper in which they performed forearm vein biopsy in a handful of POTS patients and healthy volunteers. They then assessed the amount of NET protein in the vein tissue. They found that several patients, but not all, had low levels of NET protein expression compared to the healthy volunteers, These data suggest that even though most POTS patients do not have a genetic mutation causing dysfunctional NET protein, it may be more common to have decreased protein expression. Further work from their group has suggested that the relevant DNA may not “uncoil” properly in some POTS patients. This would be required to make it available for transcription to RNA to then make the protein. In another very elegant paper from the Czech Republic, the authors performed MIBG heart scans in 20 POTS patients. MIBG is a radiotracer that is taken up by sympathetic nerves via NET. They found that 20% of the patients had markedly diminished heart uptake of MIBG. They concluded that these hearts were denervated. An alternative explanation could be that these patients had decreased NET expression (as shown in the Melbourne studies) and could not take up the MIBG tracer. *Summary information above from the Vanderbilt Autonomic Dysfunction Center Return to Newsletter Table of Contents - December 2017

Ongoing Study Information Recruiting: 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 long time collaborative partners in rare autonomic disorders. Contact information and more information about the studies can be found in this article. 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 ear lobe (transcutaneous vagal nerve stimulation) affects the way your autonomic nervous system controls your heart rhythm. Participants must be females between the ages of 18 - 45 with POTS. To learn more about this study or to participate, visit https://www.rarediseasesnetwork.org/cms/autonomic/6111 Recruiting: Clinical Autonomic Disorders: A Training Protocol is a study to learn more about dysautonomias for the specific purpose of developing training protocols to help new physicians understand the illness and to better diagnose patients. To participate in the study or read more about it, visit our studies page or go directly to the clinical trials site. Recruiting: The Big POTS Survey is still going on. Vanderbilt University and Dysautonomia International sponsored survey. The study's lead investigator is Dr. Satish Raj, MD MSCI, Adjunct Professor of Medicine at Vanderbilt University's Autonomic Dysfunction Center. Dr. Raj 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. Go directly to the survey News and Information Deadly risks of taking kratom This seemingly innocent natural product can be very harmful to your health. IMPORTANT INFORMATION: POTS & Ehlers-Danlos Syndrome "Postural tachycardia in hypermobile Ehlers-Danlos syndrome: A distinct subtype?" by Miglis MG, Schultz B, and Muppidi S, from the Departments of Neurology and Psychiatry at Stanford University Medical Center. "It is not clear if patients with postural tachycardia syndrome (POTS) and Ehlers-Danlos syndrome (hEDS) differ from patients with POTS due to other etiologies. We compared the results of autonomic testing and healthcare utilization in POTS patients with and without hEDS." https://www.ncbi.nlm.nih.gov/pubmed/28986003 POTS Related Information Estimation of Sleep Disorders using Wrist Actigraphy in Patients with POTS https://ww2.mc.vanderbilt.edu/adc/43572 Investigators conducted a questionnaire study to assess sleep disturbances and quality of life in patients with POTS and healthy subjects. Patients with POTS and healthy volunteers were given several surveys to assess their sleep (Epworth Sleepiness Index & Medical Outcomes Study [MOS] Sleep Survey), level of fatigue (a visual analogue scale) and health related quality of life (RAND36 and EQ5D). Patients with POTS reported more sleep problems, daytime sleepiness and fatigue, and worse health related quality of life than the healthy volunteers. Patients with POTS had a markedly diminished quality of life in both physical health and mental/social health domains compared to the healthy volunteers. The scores were comparable to previously published scores for patients with kidney failure requiring hemodialysis. The Vanderbilt data were similar to a prior publication from the Mayo Clinic {PMID: 12059122} that also found diminished quality of life in patients with POTS. There was a strong correlation between sleep problems and physical and mental health related quality of life. In fact, 60% of the variability in score for each of the physical health domain and the mental health domains could be accounted for by the Sleep Problems Index (a summary score from the MOS Sleep Survey). Orthostatic Intolerance and Tachycardia Associated with Norepinephrine-Transporter (NET) Deficiency https://www.ncbi.nlm.nih.gov/pubmed/10684912 Lack of function of the norepinephrine-transporter can cause POTS* Some years ago, a patient with POTS was found to be heterozygous (had one copy of the mutant allele) for a mutation in the norepinephrine transporter gene that caused a single amino acid (protein building block) change in the protein (A457P). The mutation was “dominant negative” and resulted in an almost complete “loss of function” of the norepinephrine transporter compared to the normal gene. Since the transporter is involved in clearance of norepinephrine from the sympathetic nerve synapse (area between nerve terminals), this mutation likely led to an increase in norepinephrine in the synapse, and in excessive sympathetic activation. This likely resulted in the excessive heart rate seen in this patient, which was worse on standing (when there would be more sympathetic nervous system activation). Other members of this patient’s family that had this genetic mutation also had a greater increase in heart rate with standing and elevated plasma norepinephrine compared to those without this genetic mutation. This demonstrates that orthostatic intolerance and tachycardia are associated with norepinephrine transporter deficiency. Do Other Non-Related Patients Have This Mutation? For several years, we looked for this mutation in other POTS patients. We have not found any other non-related patients to have this same loss of function mutation. Decreased NET Protein Expression in Some POTS Patients We had just about lost hope in NET deficiency as an important contributor to POTS in many patients. More recently, colleagues from Melbourne Australia published a very nice paper in which they performed forearm vein biopsy in a handful of POTS patients and healthy volunteers. They then assessed the amount of NET protein in the vein tissue. They found that several patients, but not all, had low levels of NET protein expression compared to the healthy volunteers, These data suggest that even though most POTS patients do not have a genetic mutation causing dysfunctional NET protein, it may be more common to have decreased protein expression. Further work from their group has suggested that the relevant DNA may not “uncoil” properly in some POTS patients. This would be required to make it available for transcription to RNA to then make the protein. In another very elegant paper from the Czech Republic, the authors performed MIBG heart scans in 20 POTS patients. MIBG is a radiotracer that is taken up by sympathetic nerves via NET. They found that 20% of the patients had markedly diminished heart uptake of MIBG. They concluded that these hearts were denervated. An alternative explanation could be that these patients had decreased NET expression (as shown in the Melbourne studies) and could not take up the MIBG tracer. *Summary information above from the Vanderbilt Autonomic Dysfunction Center Return to Newsletter Table of Contents - December 2017

Below are questions sent in by DINET members and answered by our team of Medical Advisors. If you have a question for DINET's advisors, please send to webmaster@dinet.org Q: My neuro ordered IVIG that was denied and then denied again on appeal, even tho I had what most consider very good insurance. I read on your site that over 50% respond very well, but “more studies are needed”. My question is when will this happen? It seems after five years there would be some progress. Thanks, Lisa A: There is research money available for this. Several universities are applying for grant so may be 1-2 years Amer Suleman, MD, FSCAI, FHRS The Heartbeat Clinic Adjunct Professor, UT Dallas Q: I have hyperadrenergic POTS with no known underlying cause at this time. I have recurrent attacks which usually occur after 1-2 hours of sleep at night with a 169-170 HR and sweating and feeling terrible. The attacks have recently been happening during the day as well. Is there a medicine that helps calm the SNS specifically? I am on Propanolol right now but it isn’t seeming to help as much as I would like. I feel as though these attacks are more of adrenaline surges and they are by far my worst symptom. Any advice would be greatly appreciated. Thanks, Jessica A: Hyperadrenergic POTS is a poorly understood medical problem that can cause debilitating symptoms. It most often begin in the late teens or early adulthood. It may be due to a wide variety of conditions that lead to symptoms of postural intolerance (feeling uncomfortable in a sitting or standing position) in association with a rapid heart rate and elevated adrenaline levels with standing. Depending on your age and the presence of other factors in your medical history the exact cause of the problem may be determined, but often no clear correctable cause can be identified. Most commonly, symptoms are limited to standing or sitting, so waking up in the middle of the night with such a rapid heartbeat would be unusual in this condition. That history raises the possibility of a cardiac arrhythmia, and this should be explored with extended cardiac monitoring or perhaps electrophysiologic testing. Assuming that it is not an arrhythmia, episodic tachycardia, especially with hypertension, raises the possibility of an adrenaline-secreting (most often benign) tumor know as a pheochromocytoma. Obtaining 24-hour urine measurements of adrenaline and its breakdown products can help rule this out. If neither of these other conditions is present and you are dealing with hyperadrenergic POTS alone, then beta blockers like propranolol can help because they block the effect of adrenaline on the heart. However, propranolol has a relatively short duration of action, meaning that it wears off 6-8 hours after taking the pill. Often it has to be taken 3 or 4 times a day to provide adequate relief of symptoms. There are longer-acting beta blockers that might work better. However, beta blockers often worsen the fatigue that comes with POTS. Other medications that have been successfully used in the treatment of hyperadrenergic POTS symptoms include methyl dopa and clonidine, which work by reducing adrenaline production. Other more standard treatments for POTS include water and salt loading, exercise, and other medications to expand blood volume or improve the body’s ability to compensate for an upright posture (mainly agents that constrict blood vessels like midodrine). You should speak with a physician who is experienced in treating POTS to gain additional insights into what treatments might improve your symptoms further. Nicholas G. Tullo, MD, FACC, FHRS New Jersey Center for Fainting West Orange, NJ njfaint.com Q: I have been diagnosed with POTS/NCS and what has been described to me as general autonomic dysfunction. I have been prescribed narcotic pain medications for a separate issue but I am concerned about the effect of narcotics on BP and heart rate or on dysautonomia overall. Also, one of my worst symptoms is shortness of breath with movement (even walking causes a drop in oxygen levels), so my question is, in general are there known complications with narcotics for people with dysautonomia? And if so, are there precautions to take to lessen any negative side effects? Thanks so much, Wendy A: Shortness of breath with exertion is common in POTS. This is usually due to the tachycardia. It is not usually associated with drops in oxygen saturation. If your oxygen saturation is dropping, especially without the tachycardia there is another problem - either a "hole in the heart" or a shunt in the lungs or some other lung disease. The narcotic question is difficult to answer. Narcotics can clearly reduce gut motility. They should not drop the blood pressure as a class. Some narcotics can cause a lot of histamine release, and this could cause a drop in blood pressure. Satish R Raj MD, MSCI, FPCPCAssociate Professor of Cardiac SciencesLibin Cardiovascular Institute of AlbertaUniversity of Calgary, Vanderbilt University Q: Hi I am a POTS patient in the UK, unfortunately no access to IV saline here apart from what I can get outside of the NHS medical system as a doctor myself. It is immensely helpful but only for a short time and I wonder if 5% albumin would have a longer effect by boosting the intravascular volume for longer. Is this or has this been used/considered/studied anywhere and have the effects been positive? Many thanks, Lanah Dawn Scotland A: We utilize IV saline on as-needed basis, but we do not use albumin infusions or other types of solution. I don't believe there has been any research done on the use of albumin infusions in patients with autonomic disorders. Svetlana Blitshteyn, MD Director and Founder of Dysautonomia Clinic Clinical Assistant Professor of Neurology University at Buffalo School of Medicine and Biomedical Science Q: What are treatment options for GI problems related to POTS? Does autonomic dysfunction effect the nerve control in the bowels, and if so, how can that be treated to improve digestion, motility, and function? Thank you! Karen Eldersburg, MD USA A: GI symptoms are very common in patients with POTS and may include upper GI: nausea, abdominal pain, bloating and reflux, or lower GI: diarrhea, constipation or both. Both upper and lower GI tracts are innervated by the autonomic nervous system and have high concentration of serotonin. GI motility disorders, such as gastroparesis, rapid gastric emptying or intestinal hypo- or hyper-motility disorders can occur in patients with autonomic disorders. There are medications that can improve gastric or intestinal motility and laxatives for those with constipation. Dietary changes can also be very helpful in some of our patients with significant GI complaints. In order to come up with an individualized nutrition plan, we have been offering nutrition consulting for patients with POTS. If you would like to have a nutrition consult, please contact our clinic 716-531-4598. Svetlana Blitshteyn, MD Director and Founder of Dysautonomia Clinic Clinical Assistant Professor of Neurology University at Buffalo School of Medicine and Biomedical Science Return to Newsletter Table of Contents - December 2017

Below are questions sent in by DINET members and answered by our team of Medical Advisors. If you have a question for DINET's advisors, please send to webmaster@dinet.org Q: My neuro ordered IVIG that was denied and then denied again on appeal, even tho I had what most consider very good insurance. I read on your site that over 50% respond very well, but “more studies are needed”. My question is when will this happen? It seems after five years there would be some progress. Thanks, Lisa A: There is research money available for this. Several universities are applying for grant so may be 1-2 years Amer Suleman, MD, FSCAI, FHRS The Heartbeat Clinic Adjunct Professor, UT Dallas Q: I have hyperadrenergic POTS with no known underlying cause at this time. I have recurrent attacks which usually occur after 1-2 hours of sleep at night with a 169-170 HR and sweating and feeling terrible. The attacks have recently been happening during the day as well. Is there a medicine that helps calm the SNS specifically? I am on Propanolol right now but it isn’t seeming to help as much as I would like. I feel as though these attacks are more of adrenaline surges and they are by far my worst symptom. Any advice would be greatly appreciated. Thanks, Jessica A: Hyperadrenergic POTS is a poorly understood medical problem that can cause debilitating symptoms. It most often begin in the late teens or early adulthood. It may be due to a wide variety of conditions that lead to symptoms of postural intolerance (feeling uncomfortable in a sitting or standing position) in association with a rapid heart rate and elevated adrenaline levels with standing. Depending on your age and the presence of other factors in your medical history the exact cause of the problem may be determined, but often no clear correctable cause can be identified. Most commonly, symptoms are limited to standing or sitting, so waking up in the middle of the night with such a rapid heartbeat would be unusual in this condition. That history raises the possibility of a cardiac arrhythmia, and this should be explored with extended cardiac monitoring or perhaps electrophysiologic testing. Assuming that it is not an arrhythmia, episodic tachycardia, especially with hypertension, raises the possibility of an adrenaline-secreting (most often benign) tumor know as a pheochromocytoma. Obtaining 24-hour urine measurements of adrenaline and its breakdown products can help rule this out. If neither of these other conditions is present and you are dealing with hyperadrenergic POTS alone, then beta blockers like propranolol can help because they block the effect of adrenaline on the heart. However, propranolol has a relatively short duration of action, meaning that it wears off 6-8 hours after taking the pill. Often it has to be taken 3 or 4 times a day to provide adequate relief of symptoms. There are longer-acting beta blockers that might work better. However, beta blockers often worsen the fatigue that comes with POTS. Other medications that have been successfully used in the treatment of hyperadrenergic POTS symptoms include methyl dopa and clonidine, which work by reducing adrenaline production. Other more standard treatments for POTS include water and salt loading, exercise, and other medications to expand blood volume or improve the body’s ability to compensate for an upright posture (mainly agents that constrict blood vessels like midodrine). You should speak with a physician who is experienced in treating POTS to gain additional insights into what treatments might improve your symptoms further. Nicholas G. Tullo, MD, FACC, FHRS New Jersey Center for Fainting West Orange, NJ njfaint.com Q: I have been diagnosed with POTS/NCS and what has been described to me as general autonomic dysfunction. I have been prescribed narcotic pain medications for a separate issue but I am concerned about the effect of narcotics on BP and heart rate or on dysautonomia overall. Also, one of my worst symptoms is shortness of breath with movement (even walking causes a drop in oxygen levels), so my question is, in general are there known complications with narcotics for people with dysautonomia? And if so, are there precautions to take to lessen any negative side effects? Thanks so much, Wendy A: Shortness of breath with exertion is common in POTS. This is usually due to the tachycardia. It is not usually associated with drops in oxygen saturation. If your oxygen saturation is dropping, especially without the tachycardia there is another problem - either a "hole in the heart" or a shunt in the lungs or some other lung disease. The narcotic question is difficult to answer. Narcotics can clearly reduce gut motility. They should not drop the blood pressure as a class. Some narcotics can cause a lot of histamine release, and this could cause a drop in blood pressure. Satish R Raj MD, MSCI, FPCPCAssociate Professor of Cardiac SciencesLibin Cardiovascular Institute of AlbertaUniversity of Calgary, Vanderbilt University Q: Hi I am a POTS patient in the UK, unfortunately no access to IV saline here apart from what I can get outside of the NHS medical system as a doctor myself. It is immensely helpful but only for a short time and I wonder if 5% albumin would have a longer effect by boosting the intravascular volume for longer. Is this or has this been used/considered/studied anywhere and have the effects been positive? Many thanks, Lanah Dawn Scotland A: We utilize IV saline on as-needed basis, but we do not use albumin infusions or other types of solution. I don't believe there has been any research done on the use of albumin infusions in patients with autonomic disorders. Svetlana Blitshteyn, MD Director and Founder of Dysautonomia Clinic Clinical Assistant Professor of Neurology University at Buffalo School of Medicine and Biomedical Science Q: What are treatment options for GI problems related to POTS? Does autonomic dysfunction effect the nerve control in the bowels, and if so, how can that be treated to improve digestion, motility, and function? Thank you! Karen Eldersburg, MD USA A: GI symptoms are very common in patients with POTS and may include upper GI: nausea, abdominal pain, bloating and reflux, or lower GI: diarrhea, constipation or both. Both upper and lower GI tracts are innervated by the autonomic nervous system and have high concentration of serotonin. GI motility disorders, such as gastroparesis, rapid gastric emptying or intestinal hypo- or hyper-motility disorders can occur in patients with autonomic disorders. There are medications that can improve gastric or intestinal motility and laxatives for those with constipation. Dietary changes can also be very helpful in some of our patients with significant GI complaints. In order to come up with an individualized nutrition plan, we have been offering nutrition consulting for patients with POTS. If you would like to have a nutrition consult, please contact our clinic 716-531-4598. Svetlana Blitshteyn, MD Director and Founder of Dysautonomia Clinic Clinical Assistant Professor of Neurology University at Buffalo School of Medicine and Biomedical Science Return to Newsletter Table of Contents - December 2017

Newsletter Content 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 Dysautonomia Research Information Patient Guides Looking Back and Looking Forward - 2017 to 2018

Newsletter Content 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 Dysautonomia Research Information Patient Guides Looking Back and Looking Forward - 2017 to 2018

read the Featured Member story of Kelsey Boncato Watch the video, hear the music "Ain't Over" , performed by Idesia, lyrics by Daniel Oldham Those quiet tries, they mean something Those tired eyes, they're worth something And those grey skies, not fooled by no false pride, sweet lies Always on our feet while we're still breathing Ain't gonna retreat, this fight is freein’ Looking for belief are you? That dream I told ya, ain't ever over This world don't own us, This dream ain’t over Those hollow sighs, they help somehow Those absent cries, they're heard somewhere And those high times love ‘em Lost as soon as they're found, lost as soon as they’re found, No blind circumstance or lucky break This life we'll make, no one can take That dream I told ya, ain't ever over This world don't own us, This dream ain’t over

DINET member name: B.KELS Kelsey's home town: Los Angeles, CA Diagnosis: POTS/NCS Music video link: https://vimeo.com/224607332 My portfolio: https://bkelsstudio.cargocollective.com/ Notes on the project: My name is Kelsey Boncato and I am an LA-based visual artist living with POTS/NCS. My project is a music video I animated and directed for the electronic soul group, Idesia. The piece is entitled “Ain’t Over” This video was a collaborative effort. The Music Producer, Co-Director and writer of the music and lyrics to this song is Daniel Oldham. Daniel also lives a life strongly affected by dysautonomia. His younger sister has POTS and other underlying illnesses and was a strong influence on the creation of this song. The music and video to “Ain’t Over” evoke messages about finding strength within the state of being vulnerable and taking control of your path. The music, lyrics and animations work together to approach soulful and emotive tones that are minimal yet complex. This is highlighted throughout the piece, essentially producing its’ meditative essence. The lyrics were inspired by a multitude of events around the end of last year. Daniel’s sister was hospitalized again during the Christmas holiday, due to multiple complications. Since the song’s conception, it has provided a sense of hope and a reminder that even in knowing the difficulties life presents, we can continue to flourish. (Read the lyrics) More….. The song “Ain’t Over” is sung by Sophie Dimitroff, the lead singer for Idesia. Daniel also plays bass guitar on the song. All involved are USC graduates. Kelsey’s portfolio can be seen at https://bkelsstudio.cargocollective.com/ and more about Daniel can be seen at http://danieloldham.com/ For more about Idesia and to hear more of their music, visit http://idesiamusic.com/

DINET member name: Missy Milton Missy's home town: Fayetteville, AR Diagnosis: Dysautonomia (POTS & NCS) website: https://www.melissamiltonart.com/ In Missy’s words……. Living with dysautonomia requires me to spend many chunks of hours laying down. Laying down is a necessary tool for regulating my roller coaster blood pressure. After about a year of spending so much time being “stuck horizontal” a dreadful, negative boredom ensued. I decided to start painting again as a fun way to pass the time when I can’t move about. Before my illness, It had been over 30 years since I had painted but it came back to me quickly. I use magnetized paint brushes and pencil on an ipad with an inexpensive (under $10) painting software. Creating digital art this way, instead of traditional paintings, keeps me from worrying about spilling paint on my bed or sofa. Nowadays, when I’m laying down I create artistically. I’ve started composing music recently and I just launched my website which includes my portfolio of art and a new blog. When I’m able to sit up and/or move about, I do more day-to-day things, such as water the plants or fold the laundry. The combination of the day-to-day activities and my creative projects, strikes a balance in my life which, for me, creates cheerful contentment. My body may malfunction in certain ways, but I feel whole. Sincerely, Missy Milton At left: "Night Flowers" Right "That time I found a fairy" More about Missy......Missy’s attitude towards her life and her illness are evident in this quote she sent in with her application Missy’s new website is her latest creation. It includes Missy’s art portfolio and her newly started blog. A blog that her adult children have encouraged her to write for a few years. It also includes a recording of her original music. Be sure to check out the great story she tells about her grandmother in the About Us section. Missy’s painting “Water Freedom”, featured here, is enjoying success in the 2017 Rare Artist Contest - a contest for artists with rare diseases. http://m.heyo.com/198fe2 Be sure to vote while you're there! Missy can be reached by email through her site at https://www.melissamiltonart.com/contact-1/

DINET member name: Missy Milton Missy's home town: Fayetteville, AR Diagnosis: Dysautonomia (POTS & NCS) website: https://www.melissamiltonart.com/ In Missy’s words……. Living with dysautonomia requires me to spend many chunks of hours laying down. Laying down is a necessary tool for regulating my roller coaster blood pressure. After about a year of spending so much time being “stuck horizontal” a dreadful, negative boredom ensued. I decided to start painting again as a fun way to pass the time when I can’t move about. Before my illness, It had been over 30 years since I had painted but it came back to me quickly. I use magnetized paint brushes and pencil on an ipad with an inexpensive (under $10) painting software. Creating digital art this way, instead of traditional paintings, keeps me from worrying about spilling paint on my bed or sofa. Nowadays, when I’m laying down I create artistically. I’ve started composing music recently and I just launched my website which includes my portfolio of art and a new blog. When I’m able to sit up and/or move about, I do more day-to-day things, such as water the plants or fold the laundry. The combination of the day-to-day activities and my creative projects, strikes a balance in my life which, for me, creates cheerful contentment. My body may malfunction in certain ways, but I feel whole. Sincerely, Missy Milton At left: "Night Flowers" Right "That time I found a fairy" More about Missy......Missy’s attitude towards her life and her illness are evident in this quote she sent in with her application Missy’s new website is her latest creation. It includes Missy’s art portfolio and her newly started blog. A blog that her adult children have encouraged her to write for a few years. It also includes a recording of her original music. Be sure to check out the great story she tells about her grandmother in the About Us section. Missy’s painting “Water Freedom”, featured here, is enjoying success in the 2017 Rare Artist Contest - a contest for artists with rare diseases. http://m.heyo.com/198fe2 Be sure to vote while you're there! Missy can be reached by email through her site at https://www.melissamiltonart.com/contact-1/

Also practices at Massachusetts General Hospital in Boston, MA

Offices also in Wentworth Douglas Hospital is Dover, NH Dr. Farhad specializes in Neurology and Comprehensive Neurology. This focus is on patient care and treatment, specifically on patients whose disorders do not fit clearly into established neurology subspecialties & difficult to diagnose disorders.

NOTE: If you are a part of a support group or and would like to receive printed materials to share with family, or local medical community, please contact webmaster@dinet.org DINET supports your efforts! You have what? You may have said words like that to your friend or family member when they told you they had a diagnosis. When they began trying to explain things like dysautonomia, autonomic dysfunction, tachycardia and the many other rarely heard words, you may have felt it was all too obscure, too medical to understand. You're right, those are a lot of complex processes and difficult concepts to tie together. Even a large part of the medical community doesn't know about it. If you have a friend or family member who has been diagnosed with an illness falling under the umbrella term "dysautonomia", this guide will hopefully help you understand it and better help support your loved one. What is dysautonomia? Dysautonomia, simply put, refers to a sort of misfiring of the processes in your body that normally function without you needing to think about them. For example, when you go from a dark room to a backyard on a sunny day, you don't make your pupils contract to protect your eyes from the bright light. And you don't have to think about whether your pupils will dilate to allow more light in, when you return to the dark room. For a person with a dysautonomia illness, their pupils may not react automatically. That dysfunction of an automatic system/response in the body is autonomic dysfunction - the core of dysautonomia. Why does my friend/family member have so many different complaints? There can't be that many things wrong with them, can there? The example above doesn't sound too hard to live with maybe, but if you stop and think about all of the functions of the body that we don't have to think about - all of the autonomic functions - we can quickly understand how debilitating this illness can be and how widespread. There are many types of dysautonomia (about 15 types) but they all involve the autonomic nervous system (ANS). The ANS controls: regulating a constant internal temperature regulating breathing patterns keeping blood pressure steady - regardless of body position regulating the heart rate urination/excretion pupil dilation The next time your friend or family member is sweating profusely, has a migraine headache and can't stand up without feeling faint, you will understand better how this can all be happening. What are the symptoms? The symptoms vary depending on the type of dysautonomia, but the most common symptoms are: lightheadedness & fainting tachycardia or fast heart rate chest pains shortness of breath stomach upset exhaustion - far beyond normal tiredness over-sensitivity to temperatures (extreme sweating regardless of temp) "brain fog" - confusion or memory loss that passes What can I do to help? When do I call 911? If in doubt call 911, especially if the person loses consciousness or can not speak or help themselves. It is always better to call than to risk the results of not calling when you should have. But, most cases of fainting or lightheadedness, extreme tachycardia or BP, will resolve itself if the person returns to a lying down position. But that is very dependent on the type of dysautonomia and the other illnesses present. Always call if you are concerned. Understand, support and spread the word! There is nothing that feels better to a person struggling to live through an illness, than to be believed and understood. Too many times patients go through years of being told by the people around them that they are anxious or stressed or they need to push passed their symptoms. When your body feels so out of your control, the last thing that you need to hear is that you should be able to control your symptoms somehow. Once you understand the illness, advocate for your loved one and help them be heard. Remind and support their efforts to be well. Remind them to hydrate. Good hydration with electrolyte products is essential to feeling well. Read more about the effects and pick up a coupon for an electrolyte drink - Banana Bag. Keep them from feeling alone. One of the tough parts of this illness is feeling as though the world is going on without you. On their bad days, instead of trying to push the person to try and do what you can do, try adapting yourself to what they can do. If you invite them to go for a swim and they can't, change the plan to playing cards, listening to music, or just a visit. Your company will go a long way. To learn more about illnesses classified under the dysautonomia umbrella, visit the Information Resources section of our site or visit our YouTube channel for more information.

How to prepare for an ER trip or a visit to a new medical practice. Going to the ER or to a new doctor’s office can be a stressful experience. To complicate things, dysautonomia is not very well understood and by nature includes the dysfunction of a complex set of multiple systems within the body. The best way to combat these issues is to be well prepared. Let’s face it, it can’t be easy for the ER team, to have a patient in front of them talking about illness and treatments that they know little, if anything, about. So since they can’t prepare, it falls to you. Here are some suggestions to help you get ready in advance. Long before you are in need of new services, create a medical notebook. Download one or two medical articles related to your particular form of dysautonomia, a list of ALL of your medications (even the things that don’t necessarily come by prescription, like the vitamins you take and the lemon-mint tea that helps you digest), a listing of your medical history (past and current) and at least one doctor at the center of your treatment that can fill in any blanks. It is very helpful if you can arrange an understanding with your “go-to” doctor in advance so they are willing to jump in when needed. A few cheat sheets are included with this to help you get started. Be sure to have water and a snack with you for the wait and don’t forget to bring your current meds with you. As we all know, dysautonomia symptoms do not always follow the “normal” course of accepted action and reaction. For example, in the case of certain types of dysautonomia, the standard test for dehydration may return normal levels and volume, yet if the medical team understands what to look for, they might see that the person has dangerously low levels of sodium. This is just one example, there are many more examples of vital information that can be missed because this illness does not follow the standard, expected reactions of other illnesses. Be sure to include the HR range and BP range that is “normal” for you. And this brings us to the next extremely important preparation to make before you go to the ER or to a new medical team - advocacy. You have to be ready as the patient to advocate for yourself or if you feel too sick to take on what could be an uphill battle, then prepare to bring someone with you who you trust and who understands your illness well. Understand before you even get there, that if the ER staff or new doctor and nurse you are there to consult with, are unwilling to read the articles you’ve brought with you, or to take their time going through and asking questions about your medical history, then this is not the place for you. If a new team has an uncooperative attitude from the beginning, if they are unwilling to listen and understand the information you have about this complex and unusual illness, then they are unable to treat you properly. The link below is a pdf of this guide along with a printable worksheet that you can fill out in advance listing medications, health history, etc. It is always better to do the preparation in advance when you are feeling well, then depending on remembering important facts when you are at your worst. Patient Guide - medical trips.pdf

Hydration and POTS syndrome According to the site, myheart.net, POTS is a syndrome associated with a multitude of symptoms, one of the most significant being a sudden elevation in heart rate when standing. This symptom is usually associated with dizziness and even passing out. The treatment of POTS syndrome is complex, however a key strategy is increasing hydration and preventing dehydration. Even healthy people (people without POTS or any other forms of dysautonomia) show improved functionality when well hydrated. The tilt table test, a hallmark test in the diagnosis of POTS, was given to 22 healthy people. Half of them were given 16 oz. of water shortly before the test, the other half were not. The well hydrated group was able to remain upright with less of a change to heart rate and circulation. The hydrated group well tolerated the test for 36% longer than the less hydrated group. More than water….. There is plenty of documentation* about the importance of hydration and the amount of fluid required to help POTS symptoms. But water alone can actually cause more problems. It is generally recommended that a minimum of 2 to 3 liters per day be consumed, however, that much water alone can dilute the amount of electrolytes in the body and become counterproductive. There are many electrolyte drinks on the market, but care needs to be taken to avoid some of the high sugar solutions and additives that can be found on the supermarket shelves. That's why DINET partnered with Banana Bag Oral Solution in 2016. Banana Bag provides the hydration recommended as well as many other wonderful supplements designed to help us "POTSies" feel a whole lot better! Here is some great information from Brian Derry (Owner, Phd, Pharmacist) about their products and the amazing custom blend he created. Banana Bag also offers DINET members a 10% discount on any subscription to their products for the life of the subscription. This is a 10% savings on the already discounted subscription price. Go to https://www.bananabagdrink.com/products/the-banana-bag-oral-solution & use promo code DYS10 to receive the additional 10% off at checkout. What an incredibly generous way to support our membership and the work we do. GREAT THANKS to BANANA BAG ORAL SOLUTIONS! What people are saying: "love my daily Banana Bag!" Dana Irwin, St Louis. Check out this review and others by visiting https://www.bananabagdrink.com/products/the-banana-bag-oral-solution Use promo code DYS10 to save an additional 10% off the already discounted subscription price. Hydration and POTS syndrome.pdf

Hydration and POTS syndrome POTS is a syndrome associated with a multitude of symptoms, one of the most significant being a sudden elevation in heart rate when standing. This symptom is usually associated with dizziness and even passing out. The treatment of POTS syndrome is complex, however, a key strategy that works well for many people is increasing hydration and salt intake to prevent dehydration. Increasing salt should only be done on a doctor's recommendation. Even healthy people (people without POTS or any other forms of dysautonomia) show improved functionality when well hydrated. The tilt table test, a hallmark test in the diagnosis of POTS, was given to 22 healthy people. Half of them were given 16 oz. of water shortly before the test, the other half were not. The well-hydrated group was able to remain upright with less of a change to heart rate and circulation. The hydrated group well tolerated the test for 36% longer than the less hydrated group.(Low 2000) More than water….. There is plenty of documentation* about the importance of hydration and the amount of fluid required to help POTS symptoms. But water alone may not be enough for some people. It is generally recommended that a minimum of 2 to 3 liters per day be consumed, however, that much water alone can dilute the number of electrolytes in the body and become counterproductive. There are many electrolyte drinks on the market, but care needs to be taken to avoid some of the high sugar solutions and additives that can be found on the supermarket shelves. That's why DINET partnered with Banana Bag Oral Solution in 2016. Banana Bag provides the hydration recommended as well as many other wonderful supplements designed to help us "POTSies" feel a whole lot better! Here is some great information from Brian Derry (Owner, Ph.D., Pharmacist) about their products and the amazing custom blend he created. Banana Bag also offers DINET members a 10% discount on any subscription to their products for the life of the subscription. This is a 10% savings on the already discounted subscription price. Go to https://www.bananabagdrink.com/products/the-banana-bag-oral-solution & use promo code DYS10 to receive the additional 10% off at checkout. What an incredibly generous way to support our membership and the work we do. GREAT THANKS to BANANA BAG ORAL SOLUTIONS! What people are saying: "love my daily Banana Bag!" Dana Irwin, St Louis. Check out this review and others by visiting https://www.bananabagdrink.com/products/the-banana-bag-oral-solution Use promo code DYS10 to save an additional 10% off the already discounted subscription price. Hydration and POTS syndrome.pdf Low, P. A. (2000, July). Orthostatic intolerance. National Dysautonomia Research Foundation Patient Conference, Minneapolis, Minnesota

Below are packets of information designed to help people living with dysautonomia. The 1st guide is written to help your family and friends understand your illness and help you all learn to live with it together. The POTS Guide for kids was created to be used as a handout for your child's teacher, coach, tutor, school nurse, their best friend's mom, or anyone else that may be responsible for your child when you are not there. There are links to pdfs in each article to make it easier to print, email or share. The 3rd guide is to help patients with tips to prepare for a visit to the ER or a new medical provider. The Information Sheets are designed to help you remember the information you should have with you. UNDERSTANDING DYSAUTONOMIA A guide for family and friends POTS GUIDE - for the family of children & teens living with POTS I know a kid who has POTS Hydration and POTS PATIENT'S GUIDE Preparing for the ER and new medical visits Information Sheets.

Below are articles full of information designed to help people living with dysautonomia. There are guides written to help your family and friends understand your illness and help you all learn to live with it together. The POTS Guide for kids was created to be used as a handout for your child's teacher, coach, tutor, school nurse, their best friend's mom, or anyone else that may be responsible for your child when you are not there. Many guides include links to pdfs to make it easier to print, email or share. The Patient's Guide is to help patients with tips to prepare for a visit to the ER or a new medical provider. The Information Sheets are designed to help you remember the information you should have with you. The Life with Chronic Illness section includes links to newsletter articles on a variety of subjects about the issues faced for people with chronic illness. UNDERSTANDING DYSAUTONOMIA A guide for family and friends POTS GUIDE - for the family of children & teens living with POTS I know a kid who has POTS Hydration and POTS PATIENT'S GUIDE Preparing for the ER and new medical visits LIFE WITH CHRONIC ILLNESS Managing and enjoying life - surviving guilty feelings, service dogs, dehydration, beat the heat, visiting national parks. Thriving with chronic illness - traveling, adaptive devices, technology, hyperPOTS patient story, finding balance.