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Information Resources


reannamathis
If you are reading this, then you likely suffer with a chronic illness.   Recently, I published an article on the treatment of patients who have 'difficult to diagnose' illnesses.  I can only speak to my experience with Dysautonomia, Ehlers-Danlos Syndrome and Chiari Malformation; however, this article is applicable to many illnesses that are complicated and messy. 
Sadly, we can be treated poorly as we search for diagnosis and treatment.  We are complicated, messy, mysterious and definitely not a quick fix.  Does that mean we should get treated any less well than the easier patients? I would hope not.  My previous article mentioned contacting a patient advocate and it received a great response and prompted many questions.  So, here is my follow-up.  Hope it helps answer your questions.   
First, I hope you never need this information.  But if you do need an advocate, then perhaps you have had a negative experience with a medical professional/system.  The more doctors you need to see, the more likely it is to happen. Secondly, you are not alone in this.  There are many of us that have had to reach down deep and stand up for our healthcare.  Living with Dysautonomia, with an average diagnosis rate of 5 years and 11 months, has given us plenty of chances to do so. 
There are two types of patient advocates.  One is a professional patient advocate who typically works for a hospital system or physician's office, and the other can be one of your choosing - such as a family member, friend or someone you trust to speak on your behalf.  We will be looking at both roles.
When choosing someone close to you to assist you with medical issues, you may want to consider the following:
Are they trustworthy? Are they well-spoken and assertive? Are they willing and able to fulfill the role you need them to? Are they able to decide quickly how they will help you in the event you cannot speak for yourself? For instance, as much as I love my husband, I would not choose him as my advocate. I believe he is too close to me to make well-informed and unemotional decisions.  As I am writing this, I am thinking of who I would choose.  For me, I might pick someone who shared some of the same conditions, and who I know is already knowledgeable about them.
When deciding how you would want your personal advocate to assist you, it is a good idea to write it down and keep the document in a safe place.  Make them aware of what hospitals you would choose, if you had a choice, what medications you are taking, past surgeries and whether you want them to accompany you to medical appointments.  These are just a few examples.  Your situation and needs will be very individual.  However, taking your advocate to new medical appointments can be a good idea.  It provides you with someone who can assist you in deciding if the physician is a good fit.  Having someone with me for appointments has helped my poor memory on more than one occasion. Plus, if the appointment or hospital visit goes in an unsavory direction, you have a witness, and it is not just your word alone. 
Now, on to professional patient advocates.  They can also be called patient liaisons, representatives, case worker or any rendition of these.  Usually though, if you ask for a patient advocate, you will be understood.  The following quote is from study.com in an article titled “What is a patient advocate,” detailing the role for students who may want to enter this field of work. 
This next point is crucial.  If you feel you have been given substandard care, contact someone! Calling the main hospital line or speaking with an office manager is a good place to start.  Document everything, including the time and date, whom you spoke to and what was said.  However, have reasonable expectations about the outcome.  This is an extremely important reminder when advocating for yourself.  Even if a doctor has treated you unfairly or given care that was less than stellar, do not expect him/her to be fired or reprimanded.  You may not even find out the outcome.  Some hospital systems have what they call “quality control panels” or “risk management committees” and when the complaint goes to those departments, they are not always required to disclose the outcome.  They are only required to disclose that it has been reported and sent.  Regardless, you stood up for yourself and your care, and that is an important point to remember! You also have the right to request amendments to your medical record.  For many of us with Dysautonomia, we get diagnosed with all sorts of crazy things. There are also times that these misdiagnoses can impede our current care.  If you have the medical information to back up amending your records, you can speak with your patient advocate about doing so.  I am in the process of doing that myself. 
What do you do if you feel your patient rights have been violated?  This is beyond a rude and uncaring doctor.  This may include discrimination, HIPPA violations or having your medical records withheld from you.  We have all been offered the patient rights and responsibilities documentation when receiving medical care.  I could wallpaper my house if I kept a copy every time it was handed to me.  If you are confused or unsure as to what your rights are as a patient, take the time to read the HIPPA document.  Being informed is a pillar of managing your own healthcare.  If you feel your rights have been violated, you can submit a complaint to any State Medical Board.  The American Medical Association has a list with the contact information for each State Medical Board.  You also have the option of turning the complaint in to the Department of Health for your state.
When you are writing out a complaint against a doctor or medical establishment, be brief and selective.  It is important to clearly state what the issue is without being emotional. Coloring your words with emotion is completely understandable as this IS your life we are talking about!  But it will not serve you well.
Consider having your personal patient advocate assist you in writing and/or editing your complaint.  State who or what you are complaining about and then the purpose of the letter. Briefly explain the issue that transpired and what you would like to see happen to resolve the problem. In the past, I have requested continuing education for one of my conditions.  Finish by thanking them for their time, and sign, seal and deliver.  A friend and an administrator in one of my support groups shared that she first gave the doctor’s office a copy of the complaint, in hopes of resolving it before turning it into the Board.  This is most certainly an option, if you are comfortable with this tactic.  If you chose to do this, taking your personal advocate with you might be a good idea.  Also, keep triplicates of all letters and complaints submitted.  Even if nothing comes of your complaint, it is documented and will hopefully help another patient with a similar complaint.  If you have trouble discerning whether you should contact patient advocacy or the medical board, run it by a few well-versed fellow spoonies.  Many of us have been in your shoes and know our way around the medical system.
I hope you will never need this information; however, given the nature of chronic illness, you may.   I urge you to stand up for your healthcare in a productive manner and choose the best path for your situation.  
 
*Utterback, S. (2017). What is a patient advocate? Retrieved from:
http://study.com/academy/lesson/what-is-a-patient-advocate-definition-training.html                                              
Editor's note:  The subject of patient advocates was raised in Reanna's article "The Scary Trend I See in our Healthcare System" published in our partner publication, The Mighty. 
 
Return to Newsletter Table of Contents - December 2017

edriscoll
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

edriscoll
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

edriscoll
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, FPCPC
Associate Professor of Cardiac Sciences
Libin Cardiovascular Institute of Alberta
University 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

Goldstec
Kat is a thirty-three year old mother, teacher’s aide and student living in Melbourne, Australia. She has always been a strong, active and independent woman.  Kat once walked eight kilometers (4.9 miles) each evening, was very active in her son’s school, and worked as a teacher’s aide until POTS altered her life in an instant.
When she first experienced symptoms, Kat contacted her general practitioner. Despite his best efforts, he was unable to properly diagnose her after ruling out migraines, chronic sinusitis and even a spread tooth infection. At thirty-two, her symptoms progressed to the point where she failed to remember her son’s birthday party and felt generally unwell. She visited the hospital for the first time in ten years. The attending physicians ran a myriad of tests and ultimately dismissed her symptoms as anxiety—one even went so far as to comment that she was wasting a hospital bed that could be useful for a truly sick person. She spent over a week in the hospital, where many of the health professionals continued to treat her condescendingly. She was only diagnosed with POTS because one night nurse noticed that her blood pressure dropped upon standing. This discovery led her to take notice of Kat’s cold, blue feet and her tachycardia. Kat was diagnosed with POTS and sent home with some medication.
While Kat feels that the medication does help, her life has been dramatically altered by POTS. She can no longer care for her son alone,  and has had to significantly cut back on her working hours.  Occasionally Kat has to use a walker or wheelchair to run errands and is not able to drive in the afternoons when her symptoms peak. These struggles have made her feel alone, and not able to trust her own body.  Kat feels very dependent, too dependent on her loved ones. Most significantly, she has guilt for not being the independent woman she used to be, with the ability to care for her son on her own and remain active in her community.
In interviewing Kat, I could empathize with the very sudden and devastating physical limitations POTS has brought to her life. Yet, I could feel her independent, even optimistic spirit shine through her words. Since POTS often confines her to home, she is getting her Bachelors of Primary Education online to maintain engagement on her tough days. Though she feels guilty about the added responsibility POTS has placed on her loved ones, she also talks about how her relationships with them have grown in deep, meaningful ways. She reminds herself to have faith in and patience with one of the most important people in her life—Kat. She realizes how far she has come since her diagnosis, as well as understanding that POTS can be a terrifying, unknown disease. She discusses that she is learning it is okay to be scared.
Kat is an inspiration for those of us (which I venture to say is many of us) who feel that we are to blame for our Dysautonomia. We feel guilty for losing our former selves, increasing “burden” on our loved ones and not living up to society’s standards of being productive citizens. Most days we want to return to our old selves, but Kat—through her own practice of self-love—reminds us to appreciate where we are today. Her insight also teaches us that we will not get self-love right every day, and it is okay to feel angry and scared through the daily battles we face. Most importantly, she talks about how many people cannot see our struggles - sometimes not even health care professionals. In a world where we may be dismissed as hypochondriacs, or are told our symptoms arise from “just anxiety,” we are quick to judge and question our own experiences. Kat reminds us “not to let someone else tell you how you feel inside.”  A lesson from which we can all draw strength.
Return to Newsletter Table of Contents - December 2017

Mona
6am:  Fumble around for my alarm clock while silently cursing the person who invented mornings. Peel myself out of bed and start my morning ablutions.
6:45am:  Get out of the shower and realize that I need to start putting my compression stockings on immediately. Optimistically try pulling my stocking over my still slightly damp left leg. Nope, never going to work.
6:55am: Blow-dry my legs. Wonder if life has any meaning.
7am:  Try not to panic about how late I am. Scrunch up the left stocking and start trying to slide it over my foot. Repeatedly lose my grip. Wonder if anyone has ever crushed their foot in a compression sock.
7:10am:  Sit on the floor for better leverage. Pull hard until the sock slides over my ankle. Slowly un-scrunch the sock while pulling it up over my leg.
7:20am:  See that the thigh-high sock barely reaches my knee. Start pulling the sock up from the bottom as per the manufacturer’s instructions. Succeed in pulling the sock up 5cm and then watch it shrink back to the ankle. Contemplate going back to bed.
7:25am:  Lie on my back with my leg in the air as recommended in several  instructional videos. Pinch at the fabric around my ankles in an unsuccessful effort to gain purchase.
7:32am:  Give up. Grab the top of the stocking with my aching hands and yank as hard as I can. Pump my fist in the air when the sock lands somewhere around mid-thigh. Victory!
7:33am:  Remember that I also have right leg. Wonder if life has any meaning.
Medical grade compression hose can be an important tool in dealing with orthostatic intolerances.  On the flip side, medical grade compression socks are, putting it mildly,  not exactly the easiest garments. They can be difficult to put on and take off, uncomfortable to wear, and expensive. Fortunately for those who benefit from the use of compression hose, there are ways to make that a bit easier.
1.      Talk to your doctor. If your doctor recommends compression, make sure you understand what you should be buying and how to wear the socks once you have them. If you are having trouble with your socks or are simply not seeing a benefit, bring that up. As with each aspect of managing a chronic condition, communicating with your health care team is vital.
2.      Make sure you have the right fit. Whether you’re buying compression socks for the first time or have been a long-time wearer, it’s important to ensure that they are properly fitted. If the socks are a poor fit, they might not function as intended. (Pal, 2011) Socks that are always falling down, bunching up, or digging into your skin may not be fitted correctly. (legsmart, 2012) You may prefer to have an in-person fitting for your first pair of socks or after a size change. (Linden, 2015) If you are ordering online and are unsure of the sizing, reach out to customer service.
3.      Experiment with different methods of putting on your socks to deal with the inevitable challenge. Proper fit may help as socks that are too small or have too much compression will be harder to put on. There are tools on the market that are designed to make that process easier. Depending on your individual circumstances, there may be suitable alternatives that are easier for you to use (e.g. compression wraps). You may find other approaches that work for you. Do bear in mind that sometimes putting on socks can be physically taxing and be mindful of safety.
4.      Consider different brands/styles/dealers. You may find that certain brands are more comfortable for you or offer the styles that you prefer. There are also many more colors, patterns, and textures available now than in the past. Once you know what socks work best for you, you may also find that you can get better prices or selection from different dealers. If you are able to shop around, that can help you save money.
5.      Keep your receipts if you are keeping track of non-reimbursed medical expenses for tax purposes.  If they are prescribed, they are deductible. 
The above list is certainly not meant to be either exhaustive or prescriptive. There are undoubtedly some strategies I’ve mentioned that won’t work in your particular situation and others, that I didn’t discuss that could be beneficial. Do what is best for you.
Remember, too, if you’re struggling with this part of your treatment plan, there is sure to be someone else out there who is just as confused or frustrated (probably me). Be open with your treatment team and check with them before taking my advice. The people on your treatment team, in addition to having specific knowledge of your circumstances, have years of experience and education. I’m just a stranger with a keyboard who has a hard time putting on her compression socks.
 
Citations:
legsmart. (2012, January 17). 5 Signs Your Compression Stockings Are a Bad Fit. Retrieved from legsmart Resource Center: https://www.legsmart.com/blogs/resources/7033462-5-signs-your-compression-stockings-are-a-bad-fit
Linden, B. V. (2015, January 11). Compression Stocking Tip #2: Where to Buy Compression Stockings. Retrieved from Lymphedema Diary: https://lymphedemadiary.com/2015/01/11/compression-stocking-tip-2-where-to-buy-compression-stockings/#more-438
Pal, S. (2011, March). Compression stockings: One size definitely does not fit all. Retrieved from Lower Extremity Review: http://lermagazine.com/special-section/diabetic-foot-care/compression-stockings-one-size-definitely-does-not-fit-all
 
Return to Newsletter Table of Contents - December 2017

Goldstec
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.  The obvious reason is that we are sick. Sick enough to need an ER or sick enough to need another consult.  But the other more difficult reason for the stress, is the reaction we get from the medical professionals we go to for help..
 
The best way to help your stress level and theirs is to be prepared.  Let’s face it, it can’t be easy for the ER team, the doctors and nurses 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.   Patient Guide - medical trips.pdf

edriscoll
NOTE from DINET:  This article is page 1 of a packet focused on children & teens living with POTS.  This information is available on our site and also as pdfs that can easily be emailed, printed, or printed & copied.  This information can be used as a handout for teachers, coaches, family members and anyone else who is in regular contact with your child yet doesn't understand what they or you are going through living with POTS.  We sincerely hope it helps.
If you know a child or teen who has been diagnosed with something called POTS, you may be scratching your head.  You're not alone.  POTS stands for Postural Orthostatic Tachycardia Syndrome. Although POTS was identified in the 90's, many physicians are still unfamiliar with the illness.  There is still an average wait time of 5 years and 11 months from the onset of symptoms to diagnosis and treatment. That is a very long time to wait for help for an illness that can be completely debilitating. 
No one knows what causes POTS but it frequently begins after the child has had a prolonged viral illness, like the flu or mono.  POTS is not contagious. 
POTS is the result of the dysfunction in the autonomic nervous system (dysautonomia).  Put simply, the autonomic nervous system helps to control many of the things our bodies do automatically - without thinking about them.  A person's heart rate, pupil dilation, blood pressure, sweating, salivating, etc. - all things that our bodies do without us giving it a second thought.  But when a person has POTS, some of these things stop operating correctly.  Although many teens outgrow symptoms as they age, it is a very debilitating illness while it lasts. 
Symptoms & Complaints
 
Some of the symptoms that you may notice or the child may complain about are:
Feeling lightheaded or like they are going to faint when they stand up. Tachycardia (fast heart rate) and palpitations within 10 minutes of standing. Weakness, extreme fatigue and headaches Nausea and stomach pain or discomfort Sweating inappropriately These are only a few of the symptoms a child may experience.  But these are the more common symptoms that are easily noticed and the most common complaints a child might have. 
Action
So, now that you know what it is, how can you help if the child is in your care?
HYDRATE!  Remind them to drink!  POTS is greatly affected by the child’s level of hydration.  Water helps but the best aids are electrolyte based drinks. STAND AND WAIT!  Remind them to stand slowly and give their bodies a chance to adjust to being upright.  A child is  more at risk of being injured if they jump up and run before adjusting to any light-headedness they might be feeling. CARRY MINTS  Peppermint is a natural way to soothe nausea for some people. SALTY SNACKS  What kid will argue with you if you remind them to eat some chips or pretzels?  Salty foods as a snack throughout the day will help the child’s hydration as well as their sodium level. COOL TOWELS  If you notice the child is sweating severely or complains of feeling lightheaded or weak, a cool cloth can help revive and rejuvenate the child. Place the towel on the back of the child’s neck. A cool cloth placed where the head meets the neck can help to relieve feelings of weakness.     Don’t be afraid to ask questions.  The better you understand what the child is going through, the the more help you can be.
Call 911 immediately if the child loses consciousness, is unresponsive or exhibits any other symptom that causes concern.
For more information about POTS and other types of dysautonomia, visit www.dinet.org
Also, consider making a donation on behalf of the child or parents living with this illness to DINET.  We are a 501C3 non-profit, all volunteer organization dedicated to supporting patients and educating the medical community about all forms of dysautonomia.  Visit https://www.dinet.org/get-involved/donate/ for ways you can help. 
Teen POTS download.pdf

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