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Information Resources


edriscoll
The Dreaded Question by Sarah Phelps
The Challenge of Working with Dysautonomia by Ellen Driscoll
Diagnosed at 59: I am an Outlier by Trudi Davidoff
Beat the Heat by Amy Keys
Meet the Member - Trudi's Story by Chelsea Goldstein
Creative Writing: Drowning in the Wake by Rachel Cox
DINET Community News: Welcoming new Board Members & Volunteers and saying Goodbye to a few old friends.
 

edriscoll
from Ellen Driscoll, President Dysautonomia Information Network - DINET
As people who live with, or have loved ones living with, Dysautonomia, we know it is frequently a roller coaster ride of a life.  We have good days and bad days and sometimes it is very tough to remember what a good day felt like when we are in the middle of a string of bad days.  We also tend to hear and read some of the most dismal and dark information about our illness and our road ahead.  But we have good stories, great stories too.  Stories from patients who are managing their illness and enjoying life after years of struggle.  Stories from caretakers who are seeing smiles more often and pain less and less, from their loved one who is finally adjusting to their meds.  And we have stories of remission….recovery.  Stories that we have largely been told don’t exist or rarely do.
Good news, news of recovery!
Two of our board members are managing their illness and have recovered enough to return to full time work.  While we are always thrilled to hear news of wellness, it is particularly sweet when it is one of our own.
Michael Blaney has served as a DINET Volunteer and Board Member since 2015.  Michael spent time contributing to the Forum as an Ambassador, as well as working as the designer for our newsletter.  For the past year, Michael has contributed to our Facebook page making updates and sharing information with all of you.  Now that Michael’s health has improved to a great degree, he is excitedly returning to school and planning a much more challenging schedule.  Michael has been an asset to the DINET Board of Directors in many ways and will be missed.  We all celebrate Michael’s recovery and wish him the best of luck in his educational and professional pursuits.
Michelle Sawicki founded DINET.  After developing POTS in 1999, she became frustrated by the lack of resources and information about this disorder.  Thankfully for all of us, she decided to do something about it.  Using her educational & professional background in Library and Information Sciences, she researched and cataloged reams of information about this illness.  She shared that information with the world, as the web site PotsPlace in 2002.  A year later, she merged and expanded that information into the Dysautonomia Information Network (DINET).  Establishing DINET as a non-profit organization as well as a website capable of connecting patients and caregivers worldwide.  Michelle served the organization as President from 2003 - 2011 and returned to serve as VP from 2015 to 2017. Michelle’s energy and commitment to this organization has helped thousands of people struggling to understand this illness.   Michelle’s busy work and life in Missouri has made serving on the board very difficult for her recently.  We greatly appreciate her willingness to stay on long enough to pass on her wisdom to the rest of us that will be moving into new leadership roles at DINET.
Another goodbye and thank you goes out to a valued member of DINET’s Forum Team, Corina Rietbroek-Methorst.  Corina has been a member of DINET since 2004 and became a Forum Moderator in 2013.  Corina lent her empathetic voice to her work as moderator. She answered questions, found resources for other members and generally guided users to have the best experience possible on our forum.  Corina leaves DINET to tend to family responsibilities.  She will be sorely missed by the DINET staff and especially by our forum users.  DINET wishes her all the best.
Changing Roles & New Members
Sarah Abraham has been serving on the DINET Board of Directors since 2015 and most recently served as Board Secretary.  Sarah has been a volunteer with DINET for many years and has worked in many different areas of the organization, giving many hours of tireless work in her role as Forum Moderator in particular.  Sarah has jumped into every project where help was needed and has gathered an enormous amount of experience and knowledge in doing so.  The DINET board is very happy to announce Sarah Abraham as the new Vice President.
In addition to these changes, we are beyond excited to welcome members to new roles within the organization.  Joining the Board of Directors as General Members are Chelsea Goldstein and Trudi Davidoff.  I’m sure Chelsea’s name is familiar to most of you.  She may have even interviewed you once upon a time.  Chelsea has contributed to the DINET newsletter as the writer of the Meet the Member column for many years.  Her insight, talents and dedication has helped us to know one another, near or far, in so many ways that would have been difficult without her and certainly wouldn’t have been as interesting.  
Trudi Davidoff is new to DINET but not to online knowledge based sites.  Trudi brings a wealth of talents for research and information gathering as well as a sincere desire to help and support others living with dysautonomia.  In addition to her board responsibilities, Trudi will be writing for the DINET newsletter.  In fact, this edition features the writings of both Chelsea and Trudi, including Chelsea’s interview with Trudi for her Meet the Member column.  
DINET is very lucky to welcome a new volunteer to one of the most vital roles within the organization.  The role of Volunteer Coordinator has been accepted by Lisa Burgess.  This role is critical for us, not just because we rely on recruiting volunteers to get the work done, but because our volunteers are the face of DINET.  When a person first finds our site, maybe after searching for answers for weeks or months, it is the work that the volunteers do that makes the first impression.  It gives that person their first sense about whether this “place” is going to be a safe home for them.  The Volunteer Coordinator is the essential role that marries that job with that particular volunteer.  It is the Coordinator who will let a person looking to volunteer feel that they are putting their effort into the right organization.  And it is the Coordinator who helps us keep our volunteers by keeping you informed, empowered and feeling valued.  Lisa joins us with a wealth of HR experience, an intelligent, creative mind and a personality that makes you feel you could talk to her all day.  
Please join me in welcoming a new group of volunteers - people generous enough to offer their talents, energy and skills to DINET.,  We welcome - Abi Shrapnell, Amy Keys, Sarah Phelps, Mona Hussein and Reanna Bibb all joining the writer’s group.  Dalia Shafi joins the forum team and Lauren Mlack will be coordinating our social media posts as well as creating graphics for us as needed.  
Finally, I am honored to accept the position as President of DINET.  I am truly excited to work with such a fantastic team of volunteers and board members.  I have been a volunteer myself for a number of years and when first asked to consider the role, I declined.   Not because I didn’t want it, but I felt that it was important to work my way through the organization and to really understand the challenges, as well as the assets, before taking on a leadership role.  Since then, I have served as the Managing Editor for the newsletter, Webmaster to the site, a General Board Member and finally Treasurer.  These roles prepared me well for the work that needs to be done.  This has never been a one or two person show.  DINET requires all of us to do our best, to remember why we are here and involved.  We may be the one, solitary thing that stands between a person feeling validated in their illness and feeling misunderstood and forgotten.  I promise to do my best to serve the dysautonomia community and the Dysautonomia Information Network.  
I hope you will feel energized and newly excited to be a part of DINET.  We have a solid team working together with new ideas and new ways to educate the medical community and new ways to continue to be a place of support and empowerment. Please let us know what you are thinking and the ways you feel DINET can better serve our community. 
Best of health for all of us,
Ellen Driscoll

Rachel Cox
From the editor:  The following is a turn from the style and intent of our usual content . This is a creative writing piece about the sensations and experiences of one woman living with dysautonomia 
I hear footfalls, voices.  Light shifts the shadows on my eyelids.  But I cannot move. I am suspended, somewhere between asleep and awake. Is it night? No, I can feel the warmth of the sun, a band of warmth pinning my legs to the bed.  It slides through the window, deceptively light. How does it imprison me here, a concrete statue, prone? I try to lift my head but it won’t move; my mouth will breathe in, breathe out, breathe in, but will not make words.  I cannot cry out.  I try to calm myself by listening to my heart; it is panicky fast, I try to slow it down with my mind. Count it out. Calm down. Settle, girl. You’ll be alright. I listen, numbed, to the sounds of people who cannot hear me. The air is heavy, thick with exhaustion. Gravitational pull beckons me deeper into the mattress, further into the earth, I am sure I can feel the world turn, I am deep enough in to hear the thrum and lullaby of life itself.  I acquiesce. The grey forgetfulness of sleep is soft around me.
The morning waking is difficult, always a transition of struggle. At first I become aware of myself again; the feel of the sheets against my skin, the ambient sounds around me. I check to see if I can move. And then I am wading out into the waves of waking, pushing my legs against the tide of light and life. Daylight foams around me.  The cold air smarts against my skin.  I am fighting to stay upright on the shifting sands, eyes open, forging forward into the wakeful time. Into the white light of morning.
“How are you today?” he asks me, hopeful.  Hopeful that today might be one of the good ones. I always know, in this moment.  If the waves of wakefulness break high and the sea spray drowns out his voice, I know that I am in the path of the storm for another day.  If the seas are calm, and pushing into the day is easier, I might smile, roll onto my back and float into the sunshine.
Becoming vertical takes time. Walking the short distance to our bathroom is like controlling a marionette from the rafters.  The strings are loosely tied and my gait comical. My legs are heavy and unresponsive in the mornings. The messages seem to take so long, the feet on the ends of my legs don’t feel like they are owned by me. They drag.  I walk by employing a swing and heft of the hips. I keep my head down, hobbled over, reaching for the walls, doors, furniture. As fast as I can I swing and shuffle myself into the bathroom and sink down onto the toilet seat; head on the bath to still the oscillations of vertigo and nausea.
I have learned to take the mornings slowly. To find the gentlest pathway into the upright world. It isn’t easy to stay afloat among the surging tide and rush of a busy family. They are preparing to cast off from the jetty, speed boat engines revving. I tread water, take my medications, open my arms for morning snuggles before the children eat and dress. I manage my horizontal hairdressing duties and tie adjusting. I am the director of movements while my husband shoulders the load. I am the strident voice of mother; teeth-brushing reminder, final inspector.  And then they are gone and I sink into the peace of my quiet house, letting the day arrive on my time scale. Letting what will be, be.
When finally, my head has given me more clear stretches than dizzy, I swallow back on the nausea and swing my legs out of bed for the second time. I sit there for a bit, bracing for the stand.
I am surrounded by the water.
It swings strong around my legs, trying to pull me under. I kick, cycling against the current. I will not drown in the wake. Not this day.
 
Image credit: Ivan Aivazovsky (Armenian Painter) 1895

 
 

Goldstec
by Chelsea Goldstein
Trudi was diagnosed with POTS a few months ago, though she will be turning sixty this year. Some of her physicians were compassionate during her two-year diagnostic process, while others showed lack of understanding, dismissal and even distaste. All of us have similar stories of doctors refusing to believe our state of illness, though Trudi’s experience seemed to be exaggerated by her age, which makes her an atypical patient. Our physicians are trained to look for horses, not zebras. While this adage holds true much of the time, Trudi is a reminder that some patients are zebras, who need zebra-specific treatment.
Trudi’s symptoms began with months of gastric distress resulting in a fissure. She was also diagnosed with vertigo multiple times during this period, yet the treatments did not have lasting or curative effect. She knew her condition was serious when she had an automobile accident. While driving in town, she was overwhelmed by the feeling of disassociating from her own body. Her brain knew she needed to turn right, but her nervous system had taken control and continued to veer left. She sideswiped a stopped bus, damaging the side of her vehicle but, thankfully, the accident did not cause any injuries. Over the next 27 months she saw dozens of doctors, including numerous specialists, most of whom had limited knowledge of Dysautonomia. She recounted her myriad of symptoms to all of them—from gastric complications to out-of-body sensations. Many were dismissive, or downright rude. However, one specialist had her do a tilt-table test and, while her results were not overly conclusive, he listened to her entire history. This complete picture of her health enabled him to definitively diagnose her with POTS. These years of appointments exhausted Trudi, and did not result in much physical improvement. However, in her words, she could now “put a name to the beast and learn to tame it.”
As an avid gardener, and a professional seed sower, Trudi understands how to manage and maintain organic beings. Just like plants, her POTS cannot be controlled, but she can guide it and give it ideal conditions. She does this by taking advantage of the resources in her hometown of Long Island—all of her medical appointments are a short drive away, and she can use reliable public transportation if needed. She is learning to utilize technology in order access more local resources. She can no longer work in the garden because it triggers her POTS and IBS, and her online company is too demanding for her newly fogged brain. However, she has maintained her passion for all things plants by managing a Facebook Forum on winter sowing seed germination. She also made the difficult choice to be open with her professional partners about her health, who have rallied behind her to identify projects within the limits of her body. She has temporarily hired help for cleaning and yard work. She knows the expenses of these services are worthwhile because she is freed to spend her limited energy on activities that best support her physical and mental vitality. Through it all, she has learned to find joy in things like physical therapy and preparing quick meals for her family.
Trudi’s battle with Dysautonomia has been just as harrowing as all of ours, however her developed life experience seems to give her a degree of wisdom about her diagnosis. Throughout her interview, even when discussing difficult moments, Trudi was sure to mention the silver lining of POTS. Her family ‘s help makes her that much more appreciative of her husband and son. Even her dogs have learned to assist her (without training) by pushing her toward the bed when they sense she needs rest, and by acting as supports when she wants to stand. She chooses to see POTS as life changing rather than of life limiting. She uses this positive attitude to focus her energies on advocacy and educating physicians who are unaware of Dysautonomia. Perhaps, through Trudi’s efforts, not all doctors will be as quick to dismiss us as all being horses because sometimes we are zebras and we are all learning to have pride in who we are, with or without Dysautonomia.

WinterSown
By Trudi Davidoff
Though an outlier, let me say that I am grateful to have been diagnosed in a little over two years since becoming noticeably symptomatic. I didn’t notice the loss of appetite or thirst creeping up on me or the constipation causing damage and created a fissure which is a small rip or tear in the anal canal. This was my introduction to things not being as they should be. 
As I learned more about dysautonomia, I was surprised at the length of time and the number of doctors it takes to get a diagnosis.  I’d seen only about a dozen specialists not counting those at the imaging centers who give and interpret so many of the tests.  Despite being older, my diagnosis numbers of 27/12--twenty-seven months and twelve doctors is better than average and it inspires me to help others through advocacy and education. Last month, I gave the office that treated my fissure a copy of The Dysautonomia Project for their in-house medical library which they kindly and graciously accepted—they were among the many doctors who had not yet heard of POTS.
I had never heard of POTS; I had never heard of dysautonomia. But as I began reading and learning about it, I often saw the phrase ‘of child bearing age’[1]  in vetted medical descriptions. But this wasn’t me.  I’m going to be 60 soon and it’s been well over a decade since my last menstrual cycle. I went looking for answers but came away only with more questions.
How, when a syndrome is so new to the medical community, does a particular age group get segregated away from the others?  POTS was named in 1993[2]. In so short of time has enough data been gathered to support post-menopausal women being given an extra hurdle to a diagnosis?  How many women have been symptomatic and accurately described their condition to their primaries, gynecologists, neurologists and cardiologists yet were told they had anxiety and were given a prescription for a low-dose anti-depressant and sent home with a pat on the shoulder?  “There, there honey, you’ll feel better soon.” Sigh.  Women are more than 2.5 times likely to be prescribed anti-depressants than men. [3]
It's time for a change. How do we begin to identify these women no longer of child-bearing age and get them to come forward so they can be accurately diagnosed? They may be stigmatized by being wrongly diagnosed with a mental illness in their younger years and do not wish to bring themselves continued condemnation, further frustration—and even the likelihood of feeling yet again, ostracized. 
What medical practitioner will become the most important care provider for the post-menopausal dysautonomia patient?  Would it be the cardiologist to help with blood pressure, the neurologist to help with the brain fog, or a nutritionist to help with the nutrition, hydration and eating habits that are so vital towards preventing syncope and pre-syncopal symptoms.  Do we see a physical therapist to keep our bodies mobile and prevent deconditioning, or a primary care doctor specializing in geriatrics to assist our aging bodies and knowledgeably send us to the right dysautonomia-educated specialist for advanced help? Ultimately, all doctors should have increased training in dysautonomia related to their field and their education should be without the built-in hurdle of age-related bias.
As changes occur, I would like to see the phrase ‘of child-bearing age’ removed from the medical descriptions of dysautonomia. I feel there is much more research to be done and answers found before we instill a cultural sense that POTS and other OIs are mostly a problem of teens and young women.  No person, male or female, needs their age used a barrier to a speedier diagnosis.  It’s time for a change.
How do we combat this problem of medical age discrimination?  We begin by identifying these women no longer of child-bearing age and encourage them to come forward where they can be accurately diagnosed.  They may be stigmatized by being wrongly diagnosed with hysteria or depression in their younger years and do not wish to bring themselves further frustration and condemnation.  They were already underserved, misdiagnosed and insulted by the medical community, who can blame them for wanting to avoid further ostracizing? 
So how do we begin to help these patients?  To learn more, we are making a small, eight question survey available.  It is a beginning to finding gaps in diagnosing women and creating relevant age-related maintenance programs.  Thank you for participating.  The results will be published on the dinet.org website i.n September of 2017
Let the change begin.
Editor's note:  This survey is sponsored by DINET and will take less than 2 minutes to take. Please consider helping Trudi and DINET understand more about dysautonomia. Thank you.
[1] http://www.dysautonomiainternational.org/page.php?ID=30
[2] http://www.dysautonomiainternational.org/page.php?ID=30
[3] http://www.health.harvard.edu/blog/astounding-increase-in-antidepressant-use-by-americans-201110203624

RoF Bear
By Sarah Phelps
Recently, I was having dinner at a friend’s house with a large group of people, many of whom I didn’t know.  Halfway through the meal, one of the new people turned to me and asked the dreaded question. “So, what do you do?”
I call it the dreaded question because, in our society, people use the answer to judge your intelligence, abilities, and character. But when you have no profession because of illness…where does that leave you?
The dinner guests around me give answers like: ‘I’m a dentist,’ or ‘I’m a builder,’ or ‘I teach kindergarten kids,’ and maybe ‘I work for a local landscaping company.’  They identify themselves by their profession.  Then it’s my turn. My first instinct is to panic: I feel my stomach clench, and my smile stiffen. But I remind myself to stay calm. It’s a perfectly normal question. They don’t know that I’m sick. And even though I am sick, I have no reason to be ashamed – we don’t get to choose our bodies!
But still…how do I explain my lack of a career without bringing up my medical issues?
My outward appearance is that of a bright, happy young woman, so people are always startled when I reveal the brokenness I carry inside. When I tell someone I’ve just met that I’m unwell, it’s an uncomfortable experience for both of us. They are embarrassed that they hadn’t realised, and start drowning me in apologies; all while I repeatedly assure them that it’s fine, they haven’t done anything wrong, they couldn’t have known…
The rest of the new people in the room look away hurriedly, as though I have just made a general announcement that I like to burn down houses for fun. I’m instantly labeled ‘the sick one' and people subtly avoid me for the rest of the evening.  I think it’s because they assume I’ll have nothing to talk about except awkward illness-related topics (and who wants to talk about those?!).
So usually, instead of opening with that, I do my best to keep my smile on and gaily tell them about the two afternoons each week that I teach piano at home. I tell them about the afternoon I volunteer to help with kids’ club, and the youth group talks and games that I write and organize each week. And then, when their smile starts to fade into a confused look, I lamely finish with something like, ‘and that’s about as much as I can handle, with my illness.' Sometimes I’ll get the chance to explain. Often, I won’t. But either way, I never enjoy answering this question.  Why should what I’m able to do be the thing that defines me?
I want to tell them about the real me. The me that draws on trees with charcoal when I’m camping, because creativity just bubbles out of me. The me that loves camping with my husband and family. The me that loves cooking for friends, and playing board games. The me that is full of random, useless facts that I don’t even remember learning (did you know jellyfish have no brains?). The me that cares deeply and genuinely. The me that plays piano. The me that loves to read.
All of us have unique qualities that define and distinguish us from the next person. Whether it’s a witty sense of humor, a great memory for birthdays, or a love of collecting antique couches: these are the qualities that shape and colour who we are. If a loved one was asked to describe you, those are the things they’d most likely share. And people miss out on discovering those traits if the only question is, “So, what do you do?”
I read an article recently about why we should never ask people when they’re going to have children (an important topic for another time!). In the article, the writer shared how heartbreaking it was when she and her husband suffered a miscarriage and just days later unknowing people were saying things like, “You and your husband are so cute together - when are you going to have children?” and “Why haven’t you guys had children yet – you’d be a great mother!”  She knew that if she explained about her miscarriage, the person asking would feel terribly guilty for asking, and she didn’t want that. So, she gave a cheery, vague answer, and changed the subject.
Yes, informing them might have educated them and maybe made them a little less thoughtless in the future. But she was grieving, and not ready to talk about it with someone she’d just met. It was a horrible position to be put in, a slap in the face to someone who was already struggling.
And sometimes that’s how I feel about “So, what do you do?”
Just as folks have no way of knowing if a couple is able to have children or not, they also have no way of knowing if the person in front of them is able to work or not. And if they are not able to work, they are in the awkward position of either having to explain why (often embarrassing themselves and those asking), or downplaying their illness in order to avoid opening that can of worms.
The dreaded question is not going to change. It’s an icebreaker question, designed to start the conversation in a safe, easy-to-answer place (and for most people, ‘what do you do’ is easy to answer). But what can change is the way that we respond to the question.  We can choose to reveal our illness and be honest about our inability to work in the traditional sense.  But we can also avoid the awkwardness that follows by giving alternative discussion points.  Instead of talking about a job, we can talk about the things we enjoy doing.  Most people, whether healthy or chronically ill, have interests that extend far beyond their jobs. In fact, people are often much more passionate about the things they do away from work!
So I might reply something like this: “I’m not able to work because of my medical condition. But I do as much volunteer work as I can, and I have a ton of hobbies. I’ve recently discovered stamping and card making, and I’m really excited about being able to send encouraging mail to my friends all around the world. What kind of things do you like to do in your spare time?”
We can change the conversation.  There are many ways you can answer to let people know that you are unable to work in a traditional way. But you can also show them there is much more to you.  By bringing the conversation back to them, you open up the opportunity to connect and explore each other’s hobbies and interests. Now that’s real conversation!
My challenge is to remember to take my own advice, and not freeze like a deer in the headlights the next time someone asks me, ‘So what do you do?’.  With some deep breaths and alternative discussion points, I think the career query could one day lose its title of most dreaded question.
Hopefully the title won’t be reassigned to, ‘So how many kids do you have?’…

SarahA33
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 dinetandforuminfo@dinet.org  The Medical Q & A is managed by Sarah Abraham
Q: My doctors and I highly suspect I have POTS, though they aren’t experts, they feel it is plausible. That aside, my real question is...POTS...is it one of those things that can happen at night, too? I find myself sleeping and then out of nowhere my heart will pound up to 200 BPM and I will get nausea/diarrhea and have to go to the bathroom. Usually, though, I have to crawl or I will pass out. During this time I am so hot and sweaty. I feel no anxiety, usually sit in the shower and try to distract myself until it passes. The ER hasn’t been helpful and my cardiologist acts like it's nothing, but I'd really like to know what's happening when my heart is doing this to me and then stops in like 15 minutes. - Cassie
A: Sometimes POTS patients can have accelerations of heart rate at night.  This could be a part of nonrestorative sleep disorder.  Alternatively, primary arrhythmias can also do that. You may want to consider a sleep study or Holter to look at heart rate at night.
Dr. Amer Suleman, MD
The Heartbeat Clinic
Q:  How do you decide which type of compression stockings are best for each of your POTS patients (knee/thigh high, abdomen compression and the stocking strength). Does open or closed toe or material matter? - Thanks, Kerry
A: You can do venous Doppler of legs to see the level of venous insufficiency. Most patients require thigh high or waist high 20-30 Hg mm, Open or closed toe should not matter
Dr. Amer Suleman, MD
The Heartbeat Clinic
Q:  When I drink water, I feel more dizzy. I fell (hard!) and fainted once.  My blood pressure was 20 mmHg higher than usual and rose when standing, so definitely not OH.  I was eating salty snacks all day.  Why would I be more dizzy and fall from drinking water?  - Forum Member
A:  You may have orthostatic "hypertension" consider consulting with a physician about this
Dr. Amer Suleman, MD
The Heartbeat Clinic
Q:  I was diagnosed with POTS about six years ago at Mayo.  I am a member of the POTS Forum and have been for years. I have severe osteoporosis and reacted poorly to one dose of a bisphosphonate.  My doctor is pressing me to take a shot of prolia, my bone density is low so I must take something.  I am very concerned because I have read about POTS & Autoimmunity, and prolia works through the immune system, I’m worried about increased POTS symptoms.  Thanks so much. -Lynn
A:  You should be checked for EDS phenotype.  We have presented a paper on this in American college of Rheumatology. Also vitamin D levels should be checked
I am not qualified to opine on treatment of osteoporosis but have not seen much problems with prolia
Dr. Amer Suleman, MD
The Heartbeat Clinic
Q:  I am newly diagnosed with POTS (unknown cause). I become SOB very easy especially in the heat. Is there anything that can help with this? Before it's onset I exercised 4-6 days/week and now can barely tolerate doing simple exercises. Thank you, - Tabatha
A:  Shortness of breath can be related with several things including but not limited to tachycardia, deconditioning, poor cellular oxygen uptake, pulmonary causes, rare disorders like platypnea orthodeoxia.  You should see a doctor. A cardiopulmonary stress test may be a good starting point.
Dr. Amer Suleman, MD
The Heartbeat Clinic
Q:  I was recently diagnosed with dysautonomia.  In addition, I have type 2 diabetes, Parkinson's disease, and kidney disease. I am flying to Denver this summer, and was curious as to whether or not flying could cause any issues with my dysautonomia.  It manifests as an increased heartbeat, inability to regulate my body temperature, and I also have neurogenic orthostatic hypotension.  Also, could the higher altitude in Colorado be an issue? – Tammy
A:   I have not found flying as a major issue.  Drink lots of water, preferably wear Ted hose stockings. As regards going to Colorado, I have seen it both ways mostly cold weather helps orthostatic hypotension. 
Dr. Amer Suleman, MD
The Heartbeat Clinic
Q:  I have high BP, rapid heartbeat and POTS.. I don't faint when I stand from sitting. I faint after exercise, after grocery shopping while waiting in line, while cooking, blow drying my hair, having a bowel movement, while showering. I'm super confused as to what I'm to do to help myself. I'm 63. All I've been told is wear compression socks. Any better suggestions? I have several autoimmune issues, the biggest one is lupus. - Donna
A: In any postmenopausal woman, ruling out heart disease is very important if you have high blood pressure and fainting after exercise or with any other exertion.  If your cardiologist has already done a thorough workup to rule out congestive heart failure, coronary arterial disease, cardiac arrhythmia and other heart problems, then a tilt table test may confirm whether you have neurocardiogenic syncope, POTS or orthostatic hypotension.  Autoimmune disorders, such as lupus, can be associated with these autonomic disorders as well as small fiber neuropathy.  Treatment that helps rapid heart rate and prevents syncope includes medications, such as beta blockers, Florinef, Mestinon and others, but should be started after your diagnostic workup is completed and preferably by a doctor specializing in autonomic disorders.  If you can't find a specialist in your area, you can contact our clinic for help.
Dr. Svetlana Blitshteyn, MD
Dysautonomia Clinic
Q: My name is Cassie and I have recently been diagnosed with POTS. I was cleared by all doctors to get a flu shot this year but after getting the shot my symptoms have been worsening. I was wondering if it was common for the flu shot to aggravate symptoms experienced by POTS? Thank you
A:  Some patients with POTS experience worsening of symptoms after a flu shot; typically, the worsening may last a few days to a few weeks, but in most cases, the patients return to their pre-vaccination symptom severity.
Dr. Svetlana Blitshteyn, MD
Dysautonomia Clinic
Q:  My daughter is 14 and recently diagnosed with POTS. In May 2016, she was diagnosed with h pylori bacterial infection. She was adopted from Russia in 2004 and it was so entrenched that they believe she has had it since before she was adopted from Russia. My question is: Is there any correlation between H Pylori and POTS? Thanks, Lisa C.
A:  I am not aware of any correlation between POTS and H.Polyri, but I don't believe this question has been studied.
Dr. Svetlana Blitshteyn, MD
Dysautonomia Clinic
Q:  My daughter is so tired all the time. The only thing her doctor says to do is eat salt and increase fluids and that is it  She can barely do anything, is there anything else we can do? Beth M.
A:  Fatigue is one of the most common symptoms of POTS and the one that's difficult to treat.  While increased salt and fluid intake can be helpful, it's certainly isn't enough to effectively address fatigue in many patients.  Before proceeding with medications that improve fatigue, it's important to make sure that other POTS symptoms are well-controlled with medications that are used for POTS.  Often patients report improvement in energy level if their heart rate is better controlled with beta blockers or their orthostatic intolerance is improved with Florinef or Midodrine.  If these treatment options have been implemented and fatigue is still unrelenting, then medications such as Provigil, Nuvigil, Ritalin, Adderall, Concerta or Wellbutrin may be helpful.
Dr. Svetlana Blitshteyn, MD
Dysautonomia Clinic
Q:  Since I contracted POTS and SFN (in 2011) I have had more frequent infections and infections that have needed antibiotics to resolve, in particular frequent respiratory infections. Just in the past 18 months, I've had frequent colds  and flu, a couple of UTIs (I'm a male so a bit unusual), recurring prostatitis, recurrent sinusitis, developed asthma and had a bout of labyrinthitis. I've had blood tests for immune function and everything came back normal. Having read the DINET forums I gather other people with POTS have had similar issues with frequent infections and wondered if there was any research or further information available on whether to this part of POTS and why it happens? Many thanks, Glen Brisbane
A:   It would be important to rule out common variable immune deficiency through specific blood tests of IgG subclasses (IgG1, IgG2, IgG3 and IgG4).  In our study of 100 patients with POTS, the prevalence of CVID, generally a rare form of immunodeficiency, was much higher than what is expected in the general population.  Additionally, other causes of small fiber neuropathy (and POTS) should be ruled out, including autoimmune disorders and Lyme disease, both of which can result in altered immune system and various infections.  In general, POTS isn't considered to cause or be associated with multiple infections; rather, POTS is consequence of the underlying etiology that is causing your multiple infections and other health problems.
Dr. Svetlana Blitshteyn, MD
Dysautonomia Clinic
Q:  I have Pure Autonomic Failure (PAF). While I have seen “weakness” listed as a possible symptom, I have found no further information than that description. If weakness is related to PAF, what is the medical understanding of why that occurs. Is there any treatment for it beyond the usual attempts to increase blood pressure? While it would be safer to limit walking when this is a problem, does that risk a loss of muscle mass? Merilee
A:  The weakness is usually related to the drops in blood pressure when standing or with activity. We would encourage activity below the threshold of feeling like you are going to faint. Cooler environments will help as the heat can make this worse.
Dr. Satish R. Raj, MD, MSCI
University of Calgary | Vanderbilt University
Q:  I was put on Concerta and I feel so bad.  My bp is normally around 117/70. Since beginning the medication, my BP has increased dramatically to 195/77. Is it possible the medication can cause this? -Tyla
A:  Yes. Concerta is a stimulant that blocks the norepinephrine transporter. The net effect is that when your sympathetic nerves release norepinephrine, you are not able to clear it as well while on the Concerta. It can create a "hyperadrenergic state".
Dr. Satish R. Raj, MD, MSCI
University of Calgary | Vanderbilt University
Q:  I would appreciate any support regarding the following. My dysautonomia has been a big source of anxiety over the years, as I never know when I am going to have symptoms and what they will be and whether my current mix of medications will control the symptoms.  Are there certain anti-depressants that may be better for anxiety/depression with dysautonomia?   I happen to have a tendency for hypotension with POTS.  SSRI's vs. SNRI's? Preferably an antidepressant that does not have extreme withdrawal symptoms like Effexor/venlafaxine? – Karen S., M.D.
A:  SNRIs can worsen tachycardia in some patients due to its blockade of the norepinephrine transporter. SSRI like sertraline or citalopram should not have this adverse effect and are often well tolerated.
Dr. Satish R. Raj, MD, MSCI
University of Calgary | Vanderbilt University
 
 
 

Goldstec
by Chelsea Goldstein
Our featured DINET member, Rachel, invites us to the Southern Hemisphere to learn about living with Autoimmune Autonomic Ganglionopathy (Seronegative) (AAG) in New Zealand. While some current political discourse highlights hard differences between peoples, Dysautonomia makes no such distinctions—often operating invisibly and affecting individuals all over the world. Rachel’s story reminds us that, despite our geographic distance and individual circumstances, the highs and lows brought by Dysautonomia are more universal than we may think.
Rachel experienced symptoms of Dysautonomia from a young age that became slightly exacerbated in her teen years, though she always felt they were manageable. In 2008, a virus triggered an autonomic flair that led her to see a cardiologist. This visit began her four-year diagnostic process in which she learned that her fainting spells were truly asystolic episodes. Her cardiologist implanted a pacemaker and diagnosed her with POTS.
During the darkest time of her experience with illness, she was told her condition was progressive. A career woman and a relatively new mother—her life came to an unexpected, abrupt halt. She lost her job, her marriage struggled as both her and her husband tried to grasp the uncertain future, friendships dissipated and, in retrospect, she realized her sense of self grew increasingly lost among her overwhelming circumstances. She feared, “dying, or worse ending up in a nursing home” unable to care for her two young children. Despite her insurmountable struggles, Rachel held an instinctual feeling that something about her diagnosis was not quite right. Thus, she self-educated and sought a second opinion from an immunologist who correctly diagnosed her with AAG, as well as provided more clarity, and hope, for her future.
Rachel’s symptoms began to slowly improve with a proper diagnosis until her AAG went into complete remission. She feels her current quality of life is surprisingly better than it was before chronic illness. Now, she approaches others with a new sense of empathy and thoughtfulness. For all that Dysautonomia taught her about the universal human experience, part of her still sees it as the “questionable ex” who could return at any time to threaten the life she has rebuilt.
I have heard Dysautonomia described in this polarizing manner many times—it is both a great teacher and a source of continual fear. We are thankful for the lessons it has taught us, and for the perspective it has provided us. But, simultaneously, we feel like we have had enough character-building experiences, thanks, and we do not welcome the opportunity to learn from Dysautonomia again.  All of us in periods of remission, or relatively good health, are moving forward while remaining keenly aware of our past experiences of illness. Every cough, sore throat, minor headache and moment of fatigue reminds us that it could resurface at any time. I have certainly experienced this fear, which I call Post-traumatic Dysautonomia. It’s often viewed as irrational by our loved ones, but for us, we know how quickly our health can spiral.
These sentiments of fear toward an uncertain future are all too real in our current world. One wrong play could set off a chain reaction of negativity, and we feel both responsible for keeping all elements of life, including our health, moving in a positive direction, but also helpless to do so. In these moments of rebuilding, Rachel can be a great model. She teaches us to do what we can to have purpose, but modify to be kind to our bodies. She got creative with her career to allow herself to work from home, which led her to discover a passion for writing. She reserves her emotional energy for the loved ones who continue to build her up—her children, her husband who grew with Rachel during her toughest times and her friends who remained constant sources of support. Most importantly, she has learned to value herself as she is, not how she could be. She found pride in her ability to remain connected to her children through her illness, and in the insight she provides to others through her writing. While that “questionable ex” will occasionally make her fearful, she remembers not to let it steal her freedom, or her right to exist.
**** Editor's note:  After this article was published we received requests from readers asking for more specific information about Rachel's treatment and remission.  Below is Rachel's response to readers.  Thanks so much Rachel for sharing with all of us.
A note from Rachel: My neuro-immunologist had read the scholarly articles of Doctor Vernino, and seen this presentation ( https://vimeo.com/32792885 ). He also spoke with doctors visiting NZ from Europe who gave their opinions on my case. Given that 50% of AAG patients are seronegative, he thought it was reasonable to try some immune suppression and see if there was any change in my symptoms, with a view to further, more serious immune modulation. 
A plan of Methylprednisolone infusions across 6 months was made, and potentially, IVIG or Rituximab infusions. The IVIG and Rituximab weren’t needed, as I went into remission on the steroids alone. I experienced dramatic improvement in all symptoms; my pacemaker episodes dropped to zero(!) I no longer endured urinary retention and all that it entails, I had energy again, the ability to move around easily, no dizziness, increased gastric mobility, and best of all, I was able to wean off all the medications I had been taking.  All of the symptoms that had plagued me were improving. Throughout the six months of infusions I had a roller coaster kind of response to the steroids, with each month less time relapsing into the symptoms.  This strong improvement was a surprise to us all. It is of course possible that I was already entering remission when the infusions began.  Sometimes patients with AAG spontaneously enter remission. But I believe it was the infusions because of the timing. Although I don’t understand how steroids alone could have achieved this, I’m sure they did and I am delighted!  
Please be aware that this is sadly not the silver bullet for everyone. It may not be a suitable treatment for all Dysautonomia sufferers. High dose pulse steroids can cause serious issues in many patients especially those with co-morbidities. Please seek the consultation of your doctors as each Dysautonomia patient has a different presentation.  I am always cautious about sharing my story as I have no medical explanation to support how it worked. A satisfactory explanation even escapes my very clever doctor!  He assures me that further research will some day shed light on the impact of inflammation at a cellular level on the autonomic ganglia. For now, I am content with the fact that my ganglia were not dead, but somehow impaired. Every single day I am grateful that I get to experience life away from Dysautonomia and enjoy physical freedom again.  I wish you all, the answers you need, I hope you find treatment that works for you.   
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SarahA33
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 dinetandforuminfo@dinet.org
Q:  My life has been on a steady decline since I started passing out running in the summer heat when I was 12 years old. I'm retired on a disability now at 64.  How can I treat this?  The florinef, salt, and water I tried twenty years ago didn't help. Thanks, Robert
A:  Thank you for your question. I am sorry that you have been feeling unwell. One challenge is that your physiology is not the same now, at age 64 years, than it was when you were 12 years of age. In terms of understanding if your blood pressure is still dropping or if you have excessive heart rate increases, it might be worthwhile re-measuring your orthostatic vital signs. Either at home or at your doctor's office, try to check your heart rate and blood pressure after lying down for a few minutes, and then after 1 min, 3 min, 5 min and 10 min standing. If you are still on the treatments above, including fludrocortisone, then it might be worth trying a "drug holiday" to see if you are better off of it. If your blood pressure is still falling a bit when you stand up, then it might be worth trying midodrine. However, the first step is to reassess how you respond to standing up and then to go from there.
Satish R Raj MD, MSCI, FPCPC
Associate Professor of Cardiac Sciences
Libin Cardiovascular Institute of Alberta
University of Calgary
Q:  My 23 year old daughter who has had POTS for 10 years is going through periods of extreme shortness of breath. Have seen pulmonary and were told she probably has asthma and gave inhaler that does nothing and gets worse after eating solid foods. We thought maybe it was related to acid reflux but testing was normal and medication, Nexium, helped for a short time but it came back. She says it feels like she can't breathe. I have heard pots can cause shortness of breath but to this extent?? Any help would be appreciated. This has been very difficult trying to figure out.   Thanks – Janet
A:  Yes, we have had POTS and especially vasovagal syncope associated with dyspnea. And this sounds more like reflux if it is food driven. I would then check with either pulmonary or cardiology to insure absence of their respective diseases. Bed resting or weight loss will aggravate many aspects of POTS.
Julian M. Stewart MD, PhD
Professor of Pediatrics, Physiology and Medicine
Associate Chair of Pediatrics
Director, The Center for Hypotension
New York Medical College
Q:  I teach at a small school of approximately 100  7th - 12th grade students in Asheboro (Randolph County) NC.  Two teen girls in my small school have POTS. One has a very severe case and had to leave school and one graduated in May. Now,  the female math teacher (mid 30s) from that same small school, has been diagnosed with POTS as well.  Is there some environmental connection? Should I call the health department,  EPA , anyone?? Statistically,  this doesn't seem possible.  Do you have any insight? Thank you,  Heather T
A:  POTS seems epidemic. I think it has hit the media. I would make sure that POTS has been accurately diagnosed. That means having non-transient symptoms that come about when upright and abate/resolve once supine. They also should have undergone a tilt table test
Julian M. Stewart MD, PhD
Professor of Pediatrics, Physiology and Medicine
Associate Chair of Pediatrics
Director, The Center for Hypotension
New York Medical College
Q:  My 18 yr old daughter has recently been diagnosed with POTS and Fibromyalgia. Her very first fainting spell happened approximately 6 months ago.  For the past 6 years, She gets a severe migraine in Nov-Dec. that it last for approximately a month.  Also, for the past 6 years and has had tachycardia. Every time she has passed out the first thing she says when she comes to, is complaining of severe legs aches. She lets me  touch her calf muscles and both are hard as rocks.  Can anyone tell me if this is a typical complaint for POTS patients, if so what do you do for the pain?  Pam P.
A:  First, POTS does not cause fainting. Fainting or syncope may occur on separate occasions in a POTS patient. Some fainters with intermittent episodes of fainting have high heart rates before fainting (actually around 40% by 10 minutes in youngsters). POTS is day to day chronic symptoms associated with excessively high HR but not hypotension (low BP) as occurs in syncope. Some suggest that all of these are migraine related and advocate migraine therapy. I am not familiar with rock hard legs but  Leg muscle contraction is a way to fight off syncope.
Julian M. Stewart MD, PhD
Professor of Pediatrics, Physiology and Medicine
Associate Chair of Pediatrics
Director, The Center for Hypotension
New York Medical College
Q:  My young adult daughter has gastroparesis and cannot consume the amount of water she needs to combat her pots symptoms.  Do you have any suggestions so she might be able to get help with hydration at least once a week?  Thank you!  Kris W.
A:  There are salt and electrolyte powders for use with water to increase blood volume (normalyte and banana bag company). Our GI experts have stated clearly that POTS does not cause such gastroparesis. Moreover, there is evidence to suggest the opposite is true. Anorexia and poor fluid intake secondary to gastroparesis can reduce blood volume which produces a POTS like illness. This is severely aggravated by weight loss and bed resting.
Your GI doctor should ensure that there is no eosinophilic esophagitis or gastritis. This has been seen. The expert on Peds GI and POTS is Gisela Chelimsky at Med College of Wisconsin.  
Julian M. Stewart MD, PhD
Professor of Pediatrics, Physiology and Medicine
Associate Chair of Pediatrics
Director, The Center for Hypotension
New York Medical College
Q:   I’m writing for our 14  y/o girl who was recently diagnosed with mild Dysautonomia. Recently she’s had an excessive number of headaches, as many as 4 times a week or as few as once in two weeks. They start as a dull ache in the morning that worsens with movement, but progresses to something like a migraine (though not quite as severe) if not treated with tylenol. A few months ago they did disappear for a couple of months completely.  My question is, is this normal for Dysautonomia? If this is dysautonomia related is there an a non pharmacological approach you can recommend? -Eleanor
A:   I’m not familiar with “mild dysautonomia” have no idea what this means. Migraine is your best bet.
Julian M. Stewart MD, PhD
Professor of Pediatrics, Physiology and Medicine
Associate Chair of Pediatrics
Director, The Center for Hypotension
New York Medical College
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