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Missy M
Age specific tools for managing chronic illness
I’m no expert in the field of chronic illness. Nor am I any type of medical professional. However, I AM an older adult with eighteen years of experience in dealing firsthand with a chronic illness (dysautonomia). I’ve been asked to share my experiences, observations, and opinions. I’m happy to do so in case any of it may help someone else.
In my opinion, when it comes to having a chronic illness it matters where you are located in your Life Cycle. By that, I mean that your current place in your “Life Timeline” (childhood, young adulthood, middle age, older age) is a factor that impacts how you experience and cope with your chronic illness. Each phase we go through in Life can provide us with age-specific tools that may serve us in good stead during a major upheaval. I base this personal opinion on my own first-hand experiences as well as upon my observations of younger people I personally know who have a chronic illness.
There are probably advantages (and disadvantages) to being in each age group when it comes to experiencing a chronic illness. I am, of course, more familiar with the advantages of being middle-aged and older-aged during a chronic illness because I didn’t begin experiencing mine until I was 40 years old. It didn’t severely disable me until I was 56 years old. I have thus lived the experience of being challenged by chronic illness later in life.
One observation I would make is that by age 40 I had experienced many of Life’s ups and downs. We all experience at least some of them: Love, rejection, marriage, divorce, birth, death, the thrill of getting that new job we wanted, the melancholy of leaving an old job where we had good friends, happy beginnings, sad endings, etc. By the time I became seriously ill, some of my own Life “ups” had been magnificently exhilarating. Some of my Life “downs” had been the scorched earth variety of devastating. However, both the ups and the downs carried value because I had learned important lessons from each. For purposes of later managing what was  to become my chronic illness the downs arguably contained the most important lessons because, if you think about it, our most profoundly sad Life experiences involve loss and the Life Lessons of how to cope with it.
Knowing how to cope with loss and to already have strategies in place for dealing with it when it comes knocking can be an extremely valuable tool to have in one’s toolbox. This is particularly true when one begins dealing with the loss of the life one had as a healthy person. In my opinion, a person like me who experiences the onset of chronic illness later in life may well have this valuable tool available in their coping toolbox.
Another difference appears applicable to those of us who do not become chronically ill until middle age: In my case, by that stage in my Life Cycle I (like most of us) had not only had the experience of one or more Life losses, I had also survived those losses. There’s a certain self-confidence born of surviving a bad experience or loss. Once we’ve survived one bad experience or loss, lesser bad experiences and smaller losses can seem less daunting. We now have a measuring stick (the terrible experience we survived) against which to measure subsequent bad experiences. Speaking for myself, younger me didn’t typically have the self-assured attitude enjoyed by older me of “I’ve survived some pretty terrible losses in the past. I, therefore, KNOW I can survive this.” Older me is more serene in the knowledge that if past losses haven’t defeated me, new losses certainly won’t either. This provides an additional tool for the coping toolbox that we can employ in managing the onset of a chronic illness.
I have also realized that experiencing the onset of chronic illness later in life has meant that I had previously had the opportunity to experience many major life events as a healthy individual. In my case, prior to being stricken with a serious illness, I had already had an opportunity to pursue my dream of putting myself through college and law school. I had likewise had an opportunity to experience marriage and to have my babies. I had successfully pursued a career I enjoyed and had even achieved what was for me my ultimate Dream Job. I had also learned to ballroom dance and to excel in a sport I enjoyed.
Although many of us with chronic illness will naturally grieve the loss of the more physically capable life we have left behind, I did not experience a sense of having “everything” taken away from me when I became disabled at an older age. This is because I had already had a chance to pursue some goals which had felt important to me and to live some Life while enjoying good health. I had gotten to DO some things I had wanted to do. Not to sound trite, but as an older person, I was able to fully appreciate the Dr. Seuss saying of “Don’t cry because it’s over. Smile because it happened.” This has been another useful coping tool for the chronic illness management toolbox.
As an older person, I had also had the opportunity to get to know myself pretty well by the time my onset of chronic illness occurred. I know my individual quirks. For example, younger me wouldn’t know (as older me does) that if I silently engage in artistic, creative endeavors for a few hours, it will help calm me down if I’m feeling upset. As with many older people, I thus have tried, and true coping mechanisms I know will see me through challenging times. Older me knows just what to do to soothe my soul when I’m feeling battered by Life. This is another tool in the coping toolbox which is arguably “age group specific.”
In my opinion, all of these factors add up in such as way as to provide inherent age group specific tools for those of us who are older when we cope with the onset of disability and chronic illness management.
Younger people likewise arguably have age group specific tools in their coping toolboxes. Although I do not have firsthand, personal experience with such tools (since my onset of chronic illness occurred later in life), I have observed them in young adults and children I know. For example, teenagers and younger adults may be better connected with their people. This is because they are arguably more likely than we older people to communicate frequently with others through computer and smartphone technology. Such technology enables a physically limited person to “stay connected.” with others 24/7 if they’d wish.
Teenagers and younger adults also possess an online savvy which may additionally provide an enhanced ability to research and better understand the nuances of their medical conditions. Such research capabilities may provide a person with a better sense of control over the situation. They may also be more predisposed to take advantage of online support groups.
A teenager or young child may be more likely to have a built-in support system of family living under the same roof to assist them that an older individual may or may not have. This can be an extremely important tool in one’s toolbox, especially if the family proactively helps the teenager or child prepare for adulthood by ensuring he or she learns about appropriate assistive devices and management strategies. Any medical provider worth their salt will tell you that when it comes to treating medical illness, children are not simply smaller adults, women are not simply smaller men, and the elderly are simply younger adults with gray hair. What we can easily lose sight of is a corollary to that: The day to day coping strategies for (and management of) one’s chronic illness can likewise be very different experiences for these individual groups as well… especially with regard to where we are in our Life Cycles. Each age group brings its inherent situational strengths to the table in coping with chronic illness.
It seems to me that if we of different age groups can find a way to proactively reach out to one another as mentors, all of us will benefit. If there were an organization to facilitate and coordinate such mentoring, in my opinion, the quality of many lives would likely be improved.
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edriscoll
The term self-care is becoming trendy, which means you may have heard someone talk about it at some point.  What is it though?  Put simply, it’s caring for yourself, just like it sounds.  So many people spend the whole day making sure everyone around them is taken care of while continually bumping their own care down lower and lower on the to-do list.  Essentially, the more time put towards self-care, the longer you can go between burnouts. 
I used to work for the State Police, and under special circumstances, troopers could provide a gas transfer to a citizen.  You see, if the trooper had not made sure that his or her own tank was full first, then they would be completely useless in helping the citizen in need.  To be the very best mom, sister, daughter, wife, employee, and friend, it’s important to take time to fill up your tank too. Otherwise, there is nothing to give to others. 
Besides having more to give to others, there are health benefits too.  Let’s brush up quickly about dysautonomia, which is dysfunction of the autonomic nervous system.  Within the autonomic nervous system are two parts, the parasympathetic nervous system, and the sympathetic nervous system.  Those of us who suffer from different forms of dysautonomia have a broad goal of activating the parasympathetic nervous system in a healthy way. In fact, research suggests that plenty of self-care activities can enable your parasympathetic nervous system (PNS).  Activating your PNS places your body into a more restful and rejuvenating state.  This can strengthen your immune system as well as make healthy strides towards calming the dysfunction of the autonomic nervous system.  Therefore, more self-care, possibly fewer dysautonomia flares, as well as fewer colds and cases of flu interrupting your year. 
Self-care can be difficult at times because it means saying “no.”  It means saying you can’t fit in that other meeting and take on that additional project.  It means you can’t head up every club and run all the fundraisers.  At the end of the day, you need time for your health- physically, emotionally, and spiritually.  This may look different to different people, but it’s important to learn which activities help to refocus you and ground you, and what invigorates you and rejuvenates you. 
Here are a few ideas that might be a good fit for you, depending on your current needs.  As always, check with your doctor before starting new physical activities.
●       Plant a garden and spend time in it.  Get your hands dirty, literally. 
●       Rearrange your furniture.  Your mind will continue to be stimulated until you are used to the new setup. 
●       Learn how to make a budget that works. 
●       Start journaling.
●       Find a book that interests you and then make time to read it. 
●       Learn about your local history. 
●       Revisit an old hobby. 
●       Learn to sew, cross stitch, crochet or quilt. 
●       Tidy up a small space.  Organizing your space can organize your mind. 
●       Play a new board game.
●       Visit a bookstore.
●       Read a magazine.
●       Do a puzzle.
●       Write a poem. 
●       Make achievable daily goals.
●       Create an inspirational collage.
●       Unfollow toxic friends on social media.
●       Try out a new exercise class.
●       Go to bed early.
●       Go for a bike ride.
●       Spend time with your pets.
●       Do something kind for someone else.
●       Bake something for fun and share with a friend.
●       Take a bubble bath.
●       Buy yourself flowers.
●       Visit an antique shop.
●       Try a new hairstyle.
●       Wrap up in a cozy blanket and drink tea.
●       Look at the stars.
●       Light a candle. 
Schedule some time for YOU and try out some of these activities.  Make time for your mind, your body, and your soul.  You deserve it! 
References:
http://www.thelawofattraction.com/self-care-tips/
https://www.developgoodhabits.com/self-care-ideas/
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edriscoll
Open Recruitment Studies
Recruiting:  The investigators propose to conduct a safety, tolerability and early proof of concept efficacy study of phosphatidylserine in patients with FD.  The long-term goal is to find an effection nutritional therapy that will improve the quality of life for patients with FD and alter disease prognosis  Contact & participation information is available  - https://clinicaltrials.gov/ct2/show/NCT02276716?cond=Dysautonomia&rank=5
Recruiting:  PET Imaging Study of Neurochemical and Autonomic disorders in Multiple System Atrophy (MSA) from the University of Michigan.
This study aims to better understand the patterns and timings of nerve degeneration relatively early on and how it affects symptoms and progression. 
Eligibility:  30 - 80 years old
Gender:  AllSubject:  diagnosis of MSA or probable MSA of the Parkisonion subtype (MSA-P) or Cerebellar subtype (MSA-C), Subject must be willing and able to give informed consent. Normal cognition as assessed by MiniMental State Examination
Timeline:  Less than 4 years from the time of documented diagnosis
See study online for exclusions and further information. 
https://clinicaltrials.gov/ct2/show/study/NCT02035761?recrs=ab&cond=Dysautonomia+Orthostatic+Hypotension+Syndrome&rank=4 
Contacts:  Arijit K Bhaumik, B.A. CCRP, 734-936-8281 arijit@umich.edu
Edna Rose, Ph.D., RN, MSW, BC, 734-936-7359, ednarose@umich.edu
Estimated Primary Completion Date:  July 2018
Recruiting:  A Study of Pyridostigmine in Postural Tachycardia Syndrome.
This is a 3-day study being conducted by the Mayo Clinic comparing pyridostigmine vs placebo in the treatment of POTS.  Researchers expect pyridostigmine to improve tachycardia and stabilize blood pressure.
Eligibility:  Diagnosis of Postural Tachycardia Syndrome using the following criteria:
Orthostatic heart rate increment greater than or equal to 30 beats per minute (BPM) within 5 minutes of head-up tilt.
Symptoms of orthostatic intolerance. These include weakness, lightheadedness blurred vision, nausea, palpitations, and difficulty with concentration and thinking.
Both criteria must be fulfilled
See study online for exclusions and further information
http://www.mayo.edu/research/clinical-trials/cls-20128843
Mayo Clinic location, Rochester MINN, Principal Investigator:  Dr. Philip Low
Contact:  Tonette Gehrking, CAP, 507-284-4462, gehrking.tonette@mayo.edu
Recruiting:  The Safety and Tolerability of Kinetin, in Patients with Familial Dysautonomia 
The overall objective of this study is to assess the safety and tolerability of administering kinetin in patients with FD. The specific aim of this proposal is to determine the safety of a once-daily dose of kinetin in patients with FD using a dose ascending titration and to determine the long-term safety and tolerability during 3-years of receiving a maximum tolerated steady state dose of kinetin. The investigators hope to also demonstrate early proof of concept that kinetin enhances the ability of the neuronal tissue to correctly splice IKAP mRNA.
Eligibility: Male or female 16 years of age and older, confirmed a diagnosis of familial dysautonomia by genetic testing, written informed consent to participate in the trial and understanding that they can withdraw consent at any time without affecting their future care. And the ability to comply with the requirements of the study procedures.
See study for more info and exclusions:  
https://clinicaltrials.gov/ct2/show/NCT02274051?cond=Dysautonomia&rank=3 
New York University School of Medicine 
Estimated Completion date:  September 2019
Contact:  Horacio Kaufmann MD, 212-263-7225,horacio.kaufmann@nyumc.org Contact:  Jose Martinez, MA, 212-263-7225, jose.martinez@nyumc.org
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 longtime collaborative partners in rare autonomic disorders.
Study 1: A Phase 2 Study to Assess the Effect and Safety of TD-9855 in Subjects with Neurogenic Orthostatic Hypotension
This Study is in collaboration with Theravance Biopharma R & D  They are testing the acute efficacy and safety of a new compound (TD-9855) in improving blood pressure and reducing orthostatic symptoms in patients that have neurogenic orthostatic hypotension (nOH), which includes those with MSA.  This study is also open to patients with Pure Autonomic Failure (PAF) and Parkinson’s Disease (PD) with NOH.
Eligibility: 40 years and older, All Genders
Diagnosed with symptomatic orthostatic hypotension due to Parkinson’s disease, MSA or PAF (ie.neurogenic orthostatic hypotension)
At screening, a subject must meet the diagnostic criteria of neurogenic orthostatic hypotension, as demonstrated by a > 30 mm Hg drop in systolic blood pressure (SBP) within 5 minutes of standing.
Impaired autonomic reflexes, as determined by the absence of BP overshoot during phase IV of the Valsalva maneuver, in subjects where Valsalva is performs as appropriate.
For the optional open-label extension study subjects must have demonstrated a pressor effect and completed dosing in Cohort 1.
Estimated completion date:  June 2018 
See study for further info and exclusions: https://clinicaltrials.gov/ct2/show/NCT02705755 
NYU Information sheet:  https://dysautonomiacenter.com/2017/04/10/two-new-studies-open-for-patients-with-msa/
Study 2:  Norepinephrine Transporter Blockade, “Autonomic Failure”
This study is supported by The Food and Drug Administration’s Office of Orphan Product development. , We are testing whether we can repurpose an available drug (atomoxetine) as a treatment for neurogenic orthostatic hypotension (nOH). This study is also open to patients with MSA, pure autonomic failure (PAF), and Parkinson disease (PD) with OH.
Eligibility:  40 to 80 years old, any gender, with Neurogenic Orthostatic Hypotension (defined by a reduction of > 30 mmHg drop in SBP within 3 minutes of standing, associated with impaired autonomic reflexes as assessed by autonomic function tests.
Estimated completion date:  July 2020 
Contact:  Bonnie Black, RN, 615-*343-6862, bonnie.black@vanderbilt.edu
Contact: Jose Martinez, 212-263-7225, Jose.Martinez@nyumc.org
See study for further info and exclusions:  https://clinicaltrials.gov/ct2/show/NCT02784535
NYU Information sheet: https://dysautonomiacenter.com/2017/04/10/two-new-studies-open-for-patients-with-msa/
Recruiting:  Vagal Stimulation in POTS - The Autonomic Inflammatory Reflex (Pilot 3) 
The purpose of this study is to investigate how the electrical stimulation of a nerve in the skin of your earlobe (transcutaneous vagal nerve stimulation) affects the way your autonomic nervous system controls your heart rhythm.
Eligibility:  Participants must be female between the ages of 18-45 diagnosed with POTS.
See Study for further information and exclusions: https://www.rarediseasesnetwork.org/cms/autonomic/6111 
This study is a part of the Rare Disease Clinical Research Network and the Autonomic Disorders Consortium 
Contact:  Vanderbilt University Medical Center Nashville 
Misty Hale CCRP, 615-322-2931, misty.hale@Vanderbilt.edu
Recruiting:  The Big POTS Survey is still recruiting  
This study’s lead investigator is Dr. Satish Raj MD MSCI, Adjunct Professor of Medicine at Vanderbilt University’s Autonomic Dysfunction Center.  Dr. Rah says that the information collected as part of this survey “will help us learn more about the possible underlying causes and risk factors for developing POTS, treatments, and the economic, educational and social impact of POTS on patients and their families.”  Dr. Raj serves on the Medical Advisory Board for DINET and Dysautonomia International. DI is sponsoring this survey. 
https://redcap.vanderbilt.edu/surveys/?s=9rB9NkqMrC%20%20
 

edriscoll

EDS Why Zebras?

By edriscoll, in EDS,

Why are EDS patients called Zebras?
Patients with EDS frequently call themselves Zebras, why?  According to the Ehler's Danlos Society, it originated from something taught to medical students about diagnosing patients - "When you hear hoofbeats behind you, don't expect to see a zebra"  In other words, look for the most common and usual, not the most unusual when diagnosing a patient.
The Zebra became the symbol for EDS patients because, as with most dysautonomia disorders, it takes years to gain a diagnosis because the patient looks too "normal" or seems too young to have so many ailments. Generally, it is unexpected and unusual. The Zebra symbolizes the idea that "when you hear hoofbeats, it really is a zebra".  
For more information about Ehler's Danlos Syndrome, visit https://ehlers-danlos.com   For information about POTS symptoms and treatments, visit https://www.dinet.org/content/information-resources/pots/

edriscoll
We can't stand without support.  We can't do it as individuals.  We certainly can't do it as people with dysautonomia.  And we can't do it as an organization.  We all need each other's help.
But there are so many worthwhile organizations, so many places needing help - why help DINET?
DINET is a validated, certified 501(c)(3) nonprofit organization.  Guide Star, the world's largest source of information on nonprofits awarded DINET the Silver Seal of Transparency.  Vetting DINET as an organization providing the public full access to its financial filings and managerial platform.  
Volunteers moderate the forum - to guarantee patients a protected place to have discussion anonymously about your health and your experiences; to share your concerns, ask questions and be supported by a community of people who understand.
DINET goes where the work is needed. DINET belongs to the Rare Diseases Clinical Research Network working within their Autonomic Disorders Consortium. Why should you care?  Because it gives you access to the information that is at our fingertips - literally.  New research and recruiting studies are published on our homepage as they become available.
DINET is also a member of the Coalition of Patient Advocacy Groups.  Chelsea Goldstein, one of DINET's Board of Directors will be attending the annual meeting in June to discuss ways to incorporate the patient's voice into the research process, as well as other issues related to the translation of clinical research to real life patient settings.  
The 2017 Survey, along with the ongoing Surveys on Facebook, give our readers another way to have their voice heard.
DINET continues to support workshops and information sessions across the world with materials, videos, and in-person talks (when possible).  Most recently, DINET provided educational materials about dysautonomia and POTS for two health workshops about invisible illness in North Carolina.  An in-person presentation at a NH Hospital is scheduled for late May.  The more we increase awareness, the shorter the time to diagnosis and the better the treatments of the illness will be. 
We post information about living with chronic illness, latest news and discoveries about dysautonomia and related disorders on our site and daily on Facebook.
Volunteers personally answer every email we receive with the best answers we can find - on our site and through other organizations.
We care...truly.  We are patients & caretakers and the information we gather, the connections we make and the support we provide is just as important to our health as it is to yours.  We are a 100% volunteer organization - every one of us.  We give our time, our energy (between naps) to do this because we really do care and we want to help. 
If you would like to help DINET continue to stand, please consider making a donation and/or volunteering.  
or email webmaster@dinet.org with questions.
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edriscoll
The University of Alberta and McGill University released their findings for a new therapeutic agent that may hold the potential for the prevention of MS.
 In the new study, according to the synopsis published in Medical News Today, the researchers examined tissues from donated human brains.  They found that the brains of people with MS had very high levels of a protein called calnexin compared with the brains of people who did not have MS.
The team then used mice that had been bred to model human MS to examine the influence of calnexin in living creatures.
The study authors were very surprised to find that mice that did not have calnexin seemed to be “completely resistant” to MS.
Marek Michalak, from the University of Alberta said that he and his colleagues believe that these findings have identified a potentially vital target for developing future MS therapies.
Study:Calnexin is necessary for T cell transmigration into central nervous system
First published 3/8/2018 by JCI Insight (Journal of Clinical Investigation), Vol 3, Issue 5
Authors:Joanna Jung, Paul Eggleton, Alison Robinson, Jessica Wang, Nick Gutowski, Janet Holley, Jia Newcombe, Elzbieta Dudek, Amber M. Paul, Douglas Zochodne, Allison Kraus, Christopher Power, Luis B. Agellon, Marek Michalak
University of Alberta and McGill University
https://insight.jci.org/articles/view/98410
Medical News Today
By David Railton, published 3/14/2018
Fact checked by Jasmin Collier
https://bit.ly/2GhF5FK
 
Neuroprotective Diet for MSA Patients (Multiple System Atrophy)
Information from the MSA Coalition says that although the causes of MSA are still not known, daily food choices can influence certain components of the disease process - slowing or speeding up inflammation, degenerative protein accumulation, nerve cell destruction and decreased neurotransmitter levels.
The diet focuses on calorie restriction, low- protein and protein redistribution combined with an anti-inflammatory diet that includes high antioxidant foods.  
From the MSA Coalition, https://www.multiplesystematrophy.org/about-msa/neuroprotective-diet
_________________________________________________________________________________________________________________
FDA Authorizes Marketing of First Blood Test to Aid in the Evaluation of Concussion in Adults
The FDA approved the first blood test to evaluate mild traumatic brain injury (mTBI) commonly referred to as concussion in adults.  The test called the Banyan Brain Trauma Indicator, is expected to be released for use in less than 6 months as a part of the FDA’s Breakthrough Devices Program.  
The test promises to be a better indicator of trauma citing that most people with suspected concussion are examined and given a CT Scan to test intracranial lesions and tissue damage.  However, in the majority of people evaluated, the CT Scan can not detect intracranial lesions. The blood test would give physicians a clear marker to indicate the need for a CT Scan, saving the patient needless exposure to radiation and saving the healthcare system millions of dollars.  
Published on the Food & Drug Administration website, FDA News Release https://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm596531.htm
February 14, 2018
Media:  Tara Rabin
 
Could Targeting Gut Bacteria Prevent Autoimmunity?
Researchers from Yale University in New Haven, CT discovered that bacteria in the small intestine can travel to other organs and induce an autoimmune response.  By administering an antibiotic or vaccine, the scientists found that they could suppress the autoimmune reaction in mice, reversing the effect of this bacteria on autoimmunity.
A few of the illnesses that may benefit most from this research are Type 1 Diabetes,Systemic Lupus, Autoimmune Liver Disease and other autoimmune diseases linked to this bacteria.
The new study complements prior studies that uncovered a link between gut bacteria and autoimmune diseases.One of those studies published in the journal Applied and Environmental Microbiology, showed that species of Lactobacillus in the gut of a lupus mouse were linked to a reduction of symptoms.
The Study:  Translocation of a Gut Pathobiont Drives Autoimmunity in Mice and Humans Bacterial involvement in Autoimmunity 
Published by Science, 3/9/2018
Vol 359, Issue 6380, pp 1156-1161
DOI: 10.1126/science.aar7201
A synopsis of the new study and links to the original studies can be found in Medical News Today  https://www.medicalnewstoday.com/articles/321157.phpBy David Railton, published 3/9/2018
 
Postural Tachycardia in Hypermobile Ehlers-Danlos Syndrome:  A distinct Subtype?
A study was done to determine is patients with POTS and EDS differ from patients with POTS from other etiologies.  The comparison of autonomic testing results along with healthcare utilization in POTS patients with and without EDS was examined.
Results:  The study concluded that while autonomic testing results did not differ dramatically between groups, the patients with POTS and EDS took more medications and had greater markers of healthcare utilization as well as chronic pain playing a prominent role.
Study:  NCBI PubMed: PMID: 28986003, DOI:10.1016/j.autneu 2017.10.001
https://www.ncbi.nlm.nih.gov/pubmed/28986003
 
Thanks to Lisa Carr for the contributions of research material that were gathered for this article.
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edriscoll
During the summer of 2017, DINET conducted an informal survey that asked questions about the age of onset of dysautonomia symptoms, diagnosis and the experiences our female members had during the diagnostic process.  The survey results contained in the pdf below show the raw numbers collected from respondents answers, as well as selected written answers from respondents.  Many women shared their stories within the survey answers and the similarity of experience was striking.  
This was not a scientific study and the data presented represents a sampling of information and opinion and should not be interpreted as research.  
Special thanks to Trudi Davidoff for writing the survey and compiling the results.  
Survey_2017.pdf
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edriscoll
Every Sunday on DINET's Facebook page, our Social Media Coordinator, Lauren Mlack asks DINET followers questions about living with dysautonomia and chronic illness. Here are highlights from some of the surveys.  Find out how your answers compare to the rest of the community.
"Do compression stockings/tights help your symptoms?"
56% yes, 44% no
"How did you find out about DINET?"
11% friends and family, 89% through research online
“How many of you are dysautonomia fighters and how many are dysautonomia caretakers?”
84% fighters, 16% caretakers
"While trying to find a diagnosis, were you told at some point by a medical professional that it was just anxiety causing your symptoms?"
89% yes, 11% no    
"For those of you who have POTS, do you also have syncope (passing out) or near syncope (the feeling like you are about to pass out but usually don't)?"
71% report near syncope to 29% experiencing syncope
"Do you experience brain fog?"  
98% answered “yes”, 2% no
"Do you have temperature sensitivity? (Such as feeling worse or better when it is cold versus warm outside"
95% said “yes, my symptoms change” 5% no
Does a cold/flu hit you harder or last longer while having a chronic illness?"  
94% said “yes!”
To participate in these surveys, check out DINET's Facebook page every Sunday. 
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edriscoll
We welcome your letters to DINET’s Medical Advisors.  Please be aware that the information provided is not meant to be a diagnosis or medical advice.  It is provided to give you background information to discuss with your medical team and general information to keep you well informed about dysautonomia disorders.  If you have a question for our advisors, please send to webmaster@dinet.org
 
Dr. Satish R. Raj    MD, MSCI, FPCPC
Associate Professor of Cardiac Sciences
Libin Cardiovascular Institute of Alberta
University of Calgary | Vanderbilt University
 Q. I currently suffer from small fiber sensory neuropathy and MSA. Over the last several months I have been experiencing intense dreams that do not seem like dreams, more like hallucinations. When I awake I am usually terrified and continue to hallucinate. I usually fall back to sleep within seconds or minutes. When I finally awake to start my day I am extremely disoriented as the hallucinations begin to fade. Within a minute or so I am fine, just a bit shaken.
I initially attributed these experiences to Methadone which I began taking just prior to the hallucinations. However, my wife is concerned that they may be another symptom of MSA rather than a side effect of the Methadone.
My neurologist hasn’t a clue. He has recently advised me to find a specialist as he is out of his element. Any thoughts?
-- Thank you, Darrin Duhamel
A:  Hallucinations can definitely be seen in MSA patients. - Dr Satish Raj
From DINET:  We recently published a link on our site to new information for patients living with MSA - https://www.multiplesystematrophy.org/about-msa/neuroprotective-diet   The website may be a good resource for you to learn more about the illness.
Amer Suleman, MD, FSCAI, FHRS
The Heartbeat Clinic
Adjunct Professor, UT Dallas
Q:   Is it typical to have high cortisol and high norepinephrine?   I have been diagnosed with Hyperadrenergic POTS. What can I take to lower the Cortisol?   Thank you, Kay Mcatee
A:  Unfortunately this question will require a physician evaluation to be answered fully.  However, I am not familiar with a relationship of hyperadrenergic POTS and high cortisol. - Dr. Suleman
Q: Six months ago I began having episodes of lightheadedness that last about 90-120 seconds, I also began having frequent bouts of sweating above my level of spinal cord injury.  The sweating occurs almost every day, lasting sometimes for 10 - 15 minutes and other times 5 or 10 hours. The bouts may occur intermittently or continuously throughout the day and night but not while supine.  The sweating is not due to autonomic dysreflexia, which I know because I can stop it by lying down or fully tilting my wheelchair. Also, it occurs when my blood pressure is low, high and normal. The lightheadedness has not ever occurred while I am sweating.  I have had a 48 hr EEG, a brain MRI, and a spinal MRI & CT scan, a sleep study showing mild sleep apnea but no arrhythmia. I have consulted 2 neurologists, a physiatrist, electrophysiologist and a pulmonologist to no avail. Thank you Ed Kopelson
A:  Unfortunately, this question also requires a physician evaluation.  However, I would consider doing a TST (thermoregulatory sweat test). - Dr. Suleman
Nicholas G. Tullo, MD, FACC, FHRS
New Jersey Center for Fainting
West Orange, NJ
njfaint.com  
Q:   When I was in my early 20s I was diagnosed with pots but since then it improved but then when I hit 30 I was diagnosed with an autoimmune disease called Sjogren's. I am having major autonomic dysfunction and considering going back on the medication to try to make it better. I am having extremely low blood pressure very low. But I'm also having very low heart rates, especially at night. Is there a medication to help with raising my blood pressure and helping with my major fatigue. My doctor had mentioned going back on midodrine at my last appointment but I did not go through with it yet. I've heard midodrine can lower pulse even more and I remember back in my twenties it gave me bad headaches. But honestly, I'm up for whatever may help this debilitating fatigue and autonomic dysfunction spells.
Thanks for any advice that maybe can help me or I can talk to my doctor about! - Stacy Tucker Willie
A:  Dear Stacy,
POTS (Postural Tachycardia Syndrome) is a “syndrome,” which is a group of symptoms that tend to run together in certain patients.  It is not really a disease, so it generally occurs because of some underlying reason… the challenging part of caring for POTS patients is to try to figure out what that reason is and correct it as best as we can.  
The symptoms of POTS are varied and include palpitations, fatigue, lightheadedness, brain fog, headaches, chest pain, GI symptoms, sweating problems, and others. However, the one finding that ties it all together is a significant increase in heart rate with standing WITHOUT a significant drop in blood pressure.  POTS is one specific sign of autonomic dysfunction, but many things can cause POTS, including Sjogren’s Syndrome.
Sjogren’s Syndrome is a poorly understood rheumatological disease that results in inflammation in certain tissues of the body, mostly connective tissues.  It is characterized by dry eyes, dry mouth, dry thick skin, frequently with GI symptoms and often associated with joint and muscle pains and other systemic symptoms.  Early forms of Sjogren’s may be difficult to diagnose. Blood tests are often negative in about 30% of patients. Sometimes the only way to diagnose it is with a biopsy, usually of the inside of the lip.  
It’s conceivable that Sjogren's was the problem all along and led to the initial symptoms of POTS.  Maybe you went into remission but now the underlying disease has resurfaced and so your POTS symptoms have returned.  I would certainly consider restarting midodrine if your blood pressure is low and you have symptoms from that. Usually, midodrine does not cause excessive slowing of the heart unless your blood pressure becomes too high. You should definitely see a doctor experienced in treating POTS, since there may be other medical treatments that could improve your quality of life. Ultimately, treating the Sjogren’s is likely to improve your symptoms the most.
Best of luck!
Dr. Nicholas Tullo
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edriscoll
After spending most of my life challenging myself with physically demanding activities - I became attached to a cane 15 years ago after back surgery.   Following surgery, I spent months believing I would fully recover. Then during a follow-up visit, the doctor cleared his throat, multiple times, and said, "You mean no one's told you?"  I won't bore myself or you by repeating all the details of the rest of that conversation, except to say - no, no one had told me.
So, fifteen years have passed.  After much urging by my husband to get something more attractive, in year seven, I finally replaced the metal hospital cane. The old cane was part of the web of denial I had spun around myself. To replace the "temporary" hospital cane with a more permanent one meant a permanent condition.  You get the gist.
Anyway, I have moved on and mostly adjusted.  I say "mostly" because after the original adjustment to being disabled from my back, I had the additional job of adjusting to life after dysautonomia - a little something I picked up after my second back surgery in year nine.  Still, I have enjoyed myself during the past fifteen years and I have refocused on the things that I can still do instead of the things I will never do again. I keep a quote by Stephen Hawking in a frame in my home. He said - “My advice to other disabled people would be, concentrate on things your disability doesn’t prevent you doing well and don’t regret the things it interferes with.  Don’t be disabled in spirit as well as physically.”  I take this advice very seriously.
 But when I think about adjusting, there is one thing that I will never manage to accept - how a portion of the world has adjusted (or not) to me. A while ago, I was having lunch with my friend in a local restaurant.  We were having a great time catching up and having "girl time." In the midst of our fun, an older man (a stranger) approached our table and just stared. When I asked him what he wanted, he said, “What's with the cane?  Did you fall or something?"
 When I didn’t answer right away, he went on to say, “Oh, I just ask because you look too young for a cane and I thought you might need some help."  Keep in mind, I am 48 years old, so “too young for a cane” is lost on me. And beyond that, I was eating lunch at the time - not trying to run out of a burning building!  So being in need of help at that moment was lost on me also. I must have looked less than appreciative, because, after a few vague offers to help, he then said in a scolding tone, “I am trying to be sympathetic," and went off in a huff.  My friend was horrified and felt my embarrassment as people at nearby tables stared. Did I mention how loudly he offered his help?
We enjoyed the rest of our lunch entertaining ourselves with comebacks for next time. Feel free to come up with your own, but, here were our favorites:
1.  Oh, this?  I carry it for protection.
2.  Oh, I hurt myself during extremely athletic sex - thanks for asking.
3.  Don't tell anybody but I just carry it to get one of those pretty blue handicap placards for my car.  
I wish I could tell you that this was an isolated encounter with one rude man, but it's not.  It has happened enough times that I have lost count - it happens in supermarkets, at meetings, airports - in fact, anywhere.  And when I do not give details - frequently, the person asking refuses to let it go. They may turn it around to indicate that they only ask because they want to help or offer sympathy. They imply that I am rude not to thank them for their concern.
I am perplexed by this. Why would people think that asking intrusive questions is allowable when related to an assistive device? Would that same man have thought it acceptable to ask about other things he notices looking at a stranger? Would it be okay, to walk up to a bald man and say "So, why are you bald? Was your father bald too?" Would it be acceptable to walk up to an older person eating dessert and say “Too much sugar can lead to Type II Diabetes, especially in older people, did you know that?”  Of course not. Most reasonable people would know that questions like that would be considered very rude and embarrassing in some instances. So, the difference seems to be related to the device.
Perhaps these people think they are asking about the device, not the person, so it's allowable.  They fail to see that the device is a part of the person’s health record, not to be shared with strangers.  Also, the device, whatever it is, is a part of the person’s permanent “look.” All the time - everywhere. Drawing attention to the device as a curiosity is intrusive.  It may be embarrassing and it may exacerbate any feelings of self-consciousness that the person may already have.
That day, in that restaurant, I'm sure that there were other people facing chronic conditions or illnesses.  They enjoyed their lunches despite more hidden conditions like diabetes, HIV, high blood pressure, colitis, heart conditions, etc.  Just because a person has a wooden appendage or some other device, it does not make it acceptable to ask personal questions that are clearly tied to their health.
On behalf of all of us who go through life with canes, wheelchairs, oxygen, leg braces, etc., I offer a reflection. If people would examine why they are asking, before they ask, it might save everyone some discomfort.  Curiosity is not a reason to intrude even in the guise of helping. When I arrived home that night, my husband heard my story and pointed out that the man was trying to "reach out" and "trying to be nice," - he believed the man just "felt sorry" for me.  That may be true, maybe that was his intent. But the real truth is, all he accomplished was to interrupt my lunch and make me feel bad.
I appreciate immensely when someone sees me struggling to balance my cane while carrying groceries and trying to open a door.  The good Samaritan who runs up and grabs the door for me is a hero. And the person who offers me a seat at the DMV when the line is long is a saint. Those are the things that folks can do when coming across a person who wears their medical condition on their sleeve.  
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