Dysautonomia International Medical Advisory Board member Dr. Satish Raj answered some common coronavirus questions we’re seeing on our support groups. Dr. Raj is a Professor of Cardiac Sciences at the University of Calgary.

I can’t reach my doctor and I think I may have coronavirus. What should I do?
Keep trying to reach your doctor, but in the meanwhile, you can use the CDC’s self-checker tool to see if your symptoms may be due to coronavirus. Make sure that you are “self-quarantining” if you have symptoms EVEN if you have not yet tested positive.

I have symptoms suggestive of coronavirus, but I can’t get tested. What should I do?
If you haven’t already done so, call your doctor to let them know you are feeling ill. Follow the advice from your doctor. If you cannot reach your doctor follow the CDC’s self-care guidelines. Most cases of COVID-19 can and should be managed at home, even in people with dysautonomia.

Since there are limited tests available at this time, government agencies and hospitals are limiting tests to those who need it most, like healthcare workers. Even if you test positive, the treatment is supportive. This means “riding through it” if able to do so at home, or being admitted to hospital if you need breathing support (hopefully not).

Is it normal to feel your heart racing faster than usual when someone with POTS has an infection?
Yes, it’s common for people with POTS to have a temporary worsening of their POTS symptoms, including more heart racing, when they have any infection. Even healthy people can develop some heart racing when they have an infection.

Should I go to the ER during the coronavirus pandemic if I am having a POTS flare?
It’s really important to avoid visiting the hospital at this time unless you are experiencing a life threatening situation. Hospitals are starting to become overwhelmed with COVID-19 patients who need emergency medical care to help them breathe. Visiting the hospital may expose you and anyone who joins you to COVID-19.

POTS flares can be very uncomfortable or distressing, but POTS is not life threatening. It is best to manage a POTS flare at home. Most POTS patients can ‘ride out’ a flare at home by resting in a quite space, laying down, putting their feet up on the wall or a few pillows, making sure they’re properly hydrated (some extra salt and fluids usually helps), and making sure they’ve taken their medications as prescribed. Eating frequent small low carb snacks or small meals several times a day can be helpful during a flare, rather than three larger meals. Slowing down your breathing or using relaxation apps may also help (POTS is not caused by stress, but being stressed about a flare can make the flare worse).

If you feel that you must go to the hospital, try to call first so that you can be instructed on what to do when you arrive, as many hospitals are trying to separate respiratory infection patients from other patients.

Stay up to date on the latest dysautonomia news, research and events by joining Dysautonomia International’s email list.

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Researchers around the world have started studying the use of plasma from people who have recovered from COVID-19 to treat those who are severely ill. Blood banks are also asking the public to donate blood, because many blood drives have been cancelled. Many of you have asked if it’s safe for people with POTS or neurocardiogenic syncope to donate blood or plasma, so we checked in with our Medical Advisory Board for their input.

What is convalescent plasma?
For over a century, doctors have used convalescent plasma to treat serious infections. Plasma is collected from a volunteer who has recently recovered from an infection. Their plasma usually contains a lot of antibodies generated by their immune system to fight off the infection. Their plasma is then infused into someone who is still sick and needs help fighting off the same infection.

Is convalescent plasma a proven treatment for COVID-19?
According to the US Food & Drug Administration (FDA), “[a]lthough promising, convalescent plasma has not yet been shown to be effective in COVID-19.” Since there are no known effective treatments, multiple options are being studied. There is some evidence suggesting that convalescent plasma may help some COVID-19 patients, especially those who are seriously ill. This is why the FDA recently announced an effort to study this treatment option. Other countries are also planning convalescent plasma studies.

Is it safe for people with POTS to donate plasma for COVID-19 research?
Prior research studies have found that a majority of people with POTS have a lower than normal volume of blood, also known as hypovolemia. However, not all POTS patients had this problem, and for some it is just slightly below normal volume.

The decision on whether or not a POTS patient should donate blood or plasma should be made on a case by case basis with input from your doctor. There is nothing about POTS that makes it inherently dangerous to donate blood or plasma. You may feel temporarily more lightheaded, which can also happen to healthy people when they donate blood or plasma.

If you do decide to donate blood or plasma, you should increase your oral fluids before and after your donation. Ask the donation center if you can receive 1L of normal saline after your donation. It may also help to be in a reclined position when donating blood or plasma. Most blood/plasma donation centers have recliner chairs available.

Is it safe for people with neurocardiogenic syncope (also known as vasovagal syncope) to donate plasma for COVID-19 research?
Yes, just like POTS, the decision on whether or not an NCS patient should donate blood or plasma should be made on a case by case basis with input from your doctor. There is nothing about NCS that makes it inherently dangerous to donate blood or plasma. You may feel temporarily more lightheaded, which can also happen to healthy people when they donate blood or plasma. For some individuals with NCS/VVS, the sight of blood or needles may trigger a syncopal event.

If you do decide to donate blood or plasma, you should increase your oral fluids before and after your donation. Ask the donation center if you can receive 1L of normal saline after your donation. It may also help to be in a reclined position when donating blood or plasma. Most blood/plasma donation centers have recliner chairs available.

Where can I find out how to donate convalescent plasma?
In the US, if you have recovered from confirmed COVID-19, visit https://ccpp19.org/donors to find out how to register to donate plasma. Canada is also putting together a study, which you can read about here. In other countries, we recommend contacting your local academic medical center, Red Cross, or local blood donation clinic to ask if they are collecting plasma from individuals who have recovered from COVID-19.

Where can I obtain plasma for someone who has severe COVID-19?
This research-based treatment is only being used in hospital settings for severely ill patients. If you are asking on behalf of a friend or loved one who is severely ill in the hospital with confirmed COVID-19, ask the hospital if they are part of a convalescent plasma research trial.

In the US, clinicians can register their hospital to be part of the national trial here.

If a US hospital is not part of an approved clinical trial, the FDA can also give physicians emergency authorization to use convalescent plasma in a single patient by telephone. This is called a Single Patient Emergency Investigational New Drug approval.

Several other countries, including Canada and the UK, are in the process of setting up COVID-19 convalescent plasma research studies. Ask the hospital if they are using convalescent plasma for their severe COVID-19 patients.

Where can I learn more about COVID-19 and how it impacts people with dysautonomia and related conditions?
Visit our Coronavirus Information Page: dysautonomiainternational.org/coronavirus.

Photo from MedPageToday’s story on COVID-19 plasma research.

Stay up to date on the latest dysautonomia news, research and events by joining Dysautonomia International’s email list.

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You have undoubtedly heard the news about the spread of coronavirus or COVID-19 and the advice that we should all be “social distancing.” We hope you’re doing well with the current health crisis, although we’re sure that dysautonomia patients are better than most at social distancing as many of us are experts at taking care of ourselves at home! Still, this is a very new time for all of us, so we wanted to provide you with some resources to help you make the most of your time at home.

Become a Dysautonomia Expert
If you watched even half of the 100+ videos on our Autonomic Disorders Video Library, you will have received more hours of medical education on autonomic disorders than most doctors receive throughout their entire career.

Read Books For Free
There are tons of ways to read books for free online without leaving your house. First, check out your local library’s website. Most public libraries partner with an app like Libby where you can check out books and audiobooks using your library card. Don’t have a library card? No problem. Check out Open Library, which allows you to check out books for free for a limited time. Not only do they have classic books like Shakespeare’s plays, but they also have newer collections like George R. R. Martin’s A Song of Ice and Fire. Manybooks and Project Gutenberg offer texts with expired copyrights, so they are free to share and download. Little ones may enjoy Storyline Online, where famous actors read beloved children’s books. This is 100% free and totally fun!

Take Online Courses
If you have time off of work or feel like sharpening your brain, there are many options for online learning. edX offers over 2,500 courses from 140+ different institutions. Coursera offers courses from over 190+ universities and companies. Khan Academy, which was originally created by Salam Khan as a way to help his cousins with their homework, can teach you anything from elementary school math to art history. Khan Academy utilizes videos, articles, and quizzes to help you master your topic.

Learn To Code
Computer programming is one of the most marketable skills on the job market right now, so why not use this time to develop it? Code Academy offers a quiz to help you figure out where to begin in your journey with coding, and lets you choose what you want to learn, whether it’s website learning or data analysis. Code Wars offers a huge selection of programming languages to learn, and gives you challenges to take on. For K-12 students, Code.org is designed specifically with kids in mind, and it’s supported by some of the biggest leaders in tech like Amazon, Facebook, and Google.

Learn A New Language
If writing a new programming language isn’t your thing, maybe speaking a new language is up your alley. It’s never been easier to start learning a new language with all of the free apps available. Duolingo is one of the most popular ways people are learning to speak new languages with a 4.7 rating and more than 704,000 ratings on the Apple App Store. Duolingo offers quick lessons you can take any time on your phone with visual and audio cues, quizzes, and lessons to help you start speaking a new language in no time. Babbel offers lessons are voiced by native speakers. Live Mocha is another option.

Learn to Cook
Social distancing means most, if not all, of our meals are made at home, so now is the perfect time to learn to cook, learn new recipes, or improve your cooking skills. YouTube is the first place you should turn as there are endless channels full of chefs who will not only teach you but entertain you. Try Bon Appetite, the popular channel created by Bon Appetit Magazine with great series like Baking School, Cook Like A Pro, or Gourmet Makes, where a chef will learn how to make your favorite treats and candies in the Bon Appetit test kitchen and teach you how to make them at home. There’s also BuzzFeed’s Tasty, full of recipes, meal ideas, and how to’s, plus more fun series like Making It Big, I Draw, You Cook, and the very helpful, Tasty 101. Binging With Babish will teach you how to make a dish inspired by a TV show or movie and has great commentary to go with it. If videos aren’t your thing, or you’re looking for something with a bit more intensive information, check out this cooking course from CookingLight full of articles about different techniques.

Exercise
Yes, yes, exercise. While we are all different, doctors typically advise people with dysautonomia to exercise 30 minutes a day, five days a week. Dysautonomia International offers dysautonomia-friendly exercise tips. Without access to the gym, exercise might get a little boring, so check out a 30 day free trial of the app Aaptiv, which offers guided workouts like yoga or outdoor running from professional trainers. Every workout comes with an energetic soundtrack to keep your energy up, and is offered in levels from beginner to advanced. If yoga is something that interests you, you can join the website DoYogaWithMe for free and get access to hundreds of yoga videos at different expertise levels and different lengths. Some are as short as 8 minutes, some span over an hour – you can find whatever is perfect for you.

Start Crafting
This one will require some supplies, but if you’re artistic, crafting is a great way to create something new while also relieving stress! The Spruce Crafts has tons of great tutorials on everything from crocheting, to knitting, to embroidery. You can learn how to add embroidered designs to your favorite t-shirt, how to make some custom beaded hairpins, and learn some new friendship bracelet patterns. If you’re a fan of paint and wine nights, you can still have them at home! Here’s a blog that outlines a suggested material list and even links to the YouTube they watched for their own at-home-paint party. Check out The Art Sherpa’s YouTube channel for dozens of painting tutorials. Artist at Heart Paint Party will also be going live every weekday this week at noon with a free art lesson!

Check Out Online Concerts
Most musicians are having to cancel their tours due to coronavirus, but some are turning to Twitter, Instagram, Youtube, and Facebook to still give their fans a show. Check out your favorite artists’ social channels to see if they’ve posted anything new. Visit StageIt where you’ll find concerts from thousands of different artists performed often from their own living rooms. Each concert comes with a chat room that lets you connect with other fans and the artist themselves. Note, these concerts are typically only $5-10 to attend. Each artist sets the own price for their concert.

Find Something NEW On Your Streaming Services
If you’re having a hard time deciding what to watch on your streaming services, whether it’s Netflix, Hulu, what have you, try one of these websites to help you get some suggestions!
whatthehellshouldiwatchonnetflix.com
whatmovieshouldiwatchtonight.com
decider.com/what-to-watch

Tour Museums Online
Museums across the world are making themselves accessible virtually thanks to partnerships with the Google Arts & Culture project. You can tour the British Museum in London or the Uffizi Gallery in Florence without leaving your couch. The British Museum has its own, special website that you do NOT want to miss! This blog has also collected links to other museums that offer virtual tours who are not a part of Google Arts & Cultures along with other online exhibits, apps, and learning resources.

Stream An Opera
The Metropolitan Opera in New York City has begun streaming past performances every night at 7:30 PM EDT. This will give you the chance to see world class musicians perform classic operas for free from your home. 

Play Online Puzzles and Games
If all of that won’t do, how about some games? Try jigsaw puzzles on Jigsaw Explorer, games like word searches, crosswords, and sudoku at ProProfs, or Logic Puzzles at PuzzleBaron.

No matter what you’re doing during this time of unprecedented change, we hope you and your family stay safe. Don’t forget to check out the Dysautonomia International Coronavirus Information Page.

Stay up to date on the latest dysautonomia news, research and events by joining Dysautonomia International’s email list.

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We’ve received inquiries from dysautonomia patients who are having a hard time accessing their normal medical services and providers during the COVID-19 pandemic. Many healthcare facilities are postponing non-urgent appointments, surgeries and testing in order to minimize the risk of exposing patients and medical professionals to COVID-19.

Additionally, many medical professionals are being called to duty to serve individuals who have been severely impacted by the virus, or the are very busy answering many questions from their own patients. Please be patient with your healthcare providers at this time. They are facing the same challenges all of our families are struggling with, in addition to trying to serve their patients.

As much as possible, we should all avoid visiting hospitals at this time for non-urgent situations. Not only will this protect you from unnecessary COVID-19 exposure, it will also protect others in case you may have COVID-19 (you can infect others even if you don’t have symptoms). Read the CDC’s advice on what to do if you think you or a member of your family may have COVID-19.

Dr. Jeffrey Boris, pediatric cardiologist and Dysautonomia International Medical Advisory Board member, offered to answer some of the more pressing questions we are receiving from our patient community.

Q: I can’t get the IV saline infusions I have been receiving. What should I do?
A: It depends on how you have been getting the infusions.  Some people get them at their doctor’s office. Some get them at an infusion center. Some get them at home.  If you have been getting them through your doctor’s office or through an infusion center, speak with your provider and see if the infusions can be set up for you through a home health prescription.  It may take a bit longer to start, as the provider will have to get insurance approval. I would recommend against routinely going to your local Emergency Department for infusions, due to the risk of infectious exposure. If at all possible, you should increase your oral salt and fluid intake to compensate for the saline you are unable to receive.

Q: I can’t find the electrolyte drink I usually use. Is there a recipe for a homemade electrolyte drink?
A: You don’t necessarily need to have an electrolyte drink.  If you are taking in adequate amounts of fluid (2 to 3 ½ liters/day) and the equivalent of 1 to 2 teaspoons of salt per day through your food, that is actually quite good. There are salt capsules, such as Salt Stick Vitassium, that can help.

A homemade electrolyte drink can be a large glass of water with a little flavor, a little salt, and a little sweetness (to take advantage of the sodium-glucose pump, which helps you absorb fluids from your gastrointestinal tract into your bloodstream more efficiently). You can experiment with different combinations until you create a drink that you like. Here are some ideas.
Flavor: fruit juice, citrus, ginger, berries, melon or cucumber
Salt: any salt will work
Sweet: sugar, honey, or maple syrup

You can find Dysautonomia International’s salty snack and meal ideas here.

Q: I can’t get refills of my medication at the local pharmacy. Any ideas on how to get common dysautonomia medications without leaving home?
A: A number of insurance companies have a mail-order option, in which you get a 3-month supply sent directly to your home. Check with your insurance plan to see if this exists for you, then have your provider order it as a 3-month supply through the mail-order group.  Make sure that you get the name of the mail-order group working with your insurance company so that you can pass it on to your provider.

Q: I can’t get my fludrocortisone (Florinef) prescription refilled, but I can get licorice root. How much licorice root should you take to equal .1mg of fludrocortisone?
A: The short answer is that we do not know.  Licorice root is a supplement that is not overseen by the FDA, nor has there been adequate scientific study of it or its effects. Since it’s not overseen by the FDA, the amount (or contents) advertised on the bottle may not be what you’re actually getting. Also, the cleanliness of the plant as well as the supply chain of ingredients may be in question.

Q: I can’t get my midodrine prescription refilled, but I heard phenylephrine (Sudafed-PE) is a similar drug. Can I take this while my midodrine is out of stock?
A: Although phenylephrine is similar to midodrine, it’s not the same.  All of the research that has been done with it in POTS patients has been using intravenous infusions.  Thus, we do not know the appropriate dose, much less how long it would work.  The side effects associated with chronic use are also not known, except for rebound nasal congestion.  I would recommend against using this as a substitute. Consider using compression stockings (20-30 mmHg, waist to toe) while awake instead.

Q: My physical therapy appointments have been cancelled. What exercises can I do at home?
A: The modified Dallas (Levine) exercise protocol is available through the Dysautonomia International website. In general, you want to exercise recumbent (reclined, not upright, such as recumbent bicycle, swimming, or rowing machine), starting with 10 minutes per day, and increasing until getting to about 60 minutes per day by the end of the second month. You should be exercising about 5-6 days/week, which is a lot, but is very important to reduce symptoms. You should also be doing exercises to strengthen your core and leg muscles. With continued exercise, many people start to feel better by month 3-4. Exercise like this should be maintained indefinitely. Patients often state that they feel bad if they skip more than 2 days in a row. If you do have to skip, due to illness, back up 1-2 weeks in the protocol, and then pick back up.

Q: My psychologist/psychiatrist appointments have been cancelled. Where can I get mental health support at this time?
A: This is a difficult problem. I would definitely recommend contacting your psychiatric provider/counselor to find out how they are specifically the managing care of their patients. Some may be able to care for you by phone, others by Skype or FaceTime, others by a specific telemedicine link. Recognize that, due to everything happening in society at the present time, they are going to be overwhelmed with many patients requiring their attention, so try to be patient as you (and they) navigate this new, but temporary, reality.

In the US, your local affiliate of the National Association of Mental Illness (NAMI) may be able to suggest alternative local resources. 7 Cups is a free online source for emotional support.

If you missed our recent webinar, Coronavirus Q&A for the Dysautonomia Community, sign up for the Dysautonomia International email list to receive a copy.

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Robin and Hannah Lucas are a mother-daughter duo from Georgia who are very active in the dysautonomia community. They have been volunteers for Dysautonomia International for two years and Robin helps lead Dysautonomia International’s Georgia Support Group.

After Hannah was diagnosed with POTS at the age of 15, she struggled with her mental health. By the time they found Dysautonomia International, Hannah had been learning to manage life with dysautonomia for several years. Volunteering was a way for Hannah and Robin to help others and give back.

Hannah says, “I was bullied at school. I would wear my compression socks and get made fun of. It was hard and on top of it all I had anxiety about doing simple tasks alone, like going to the bathroom. What if I fainted and no one was there?”

With dysautonomia patients in mind and for anyone struggling with depression or anxiety, Hannah created the NotOK App. This app allows you to let someone know that you are not OK with a push of a button. Hannah and her brother Lucas developed the app, which has helped thousands of people. They’ve become frequent guest speakers on teen mental health at national conferences and in the media too.

Robin and Hannah attend their first Dysautonomia International Conference back in 2018. Hannah says, “[i]t was incredible to engage with other kids who had the same illness as me and it was amazing to see them living inspiring lives.” Hannah lectured during the teen program on how to stay positive while living a life with chronic illness.

Robin and Hannah appreciate the opportunity to learn from others on Dysautonomia International support groups, but they enjoy being there for other families too.

Thank you for everything you do for Dysautonomia International, Robin and Hannah!

If you’re interested in volunteering for one of Dysautonomia International regional support groups, please email Kirsten at kslowey@dysautonomiainternational.org.

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We asked our Medical Advisory Board, which includes many of the leading dysautonomia experts, to answer some questions from our patient community for Heart Month.

What is cardiac arrest?
A cardiac arrest is a condition in which the heart is not able to deliver blood to the brain and body. This can be due to multiple causes, but is most often due to an irregular heart beat (an arrhythmia that is either very fast or very slow) that makes it impossible for the brain to get enough blood and the patient becomes unconscious. When it is due to an extremely fast rhythm called ventricular fibrillation, this is often referred to as “sudden cardiac death” since the patient will die unless they get out of this rhythm within a few minutes. This is what is depicted in many medical TV shows when everyone rushes into a room and shocks a patient. The actors are pretending to shock someone out of ventricular fibrillation and return them to a heart rhythm that can deliver blood to the brain and body. It’s important to know that the fast heart rate seen in POTS is not considered an arrhythmia.

What is a heart attack?
A “heart attack” is colloquial term that refers to a myocardial infarction. This usually occurs when a clot forms around a cholesterol “plaque” that ruptures in one of the blood vessels that supplies the heart muscle its blood. This leads to heart muscle damage. When this is first happening, it can also lead to the abnormal rhythm of ventricular fibrillation, which causes the cardiac arrest. If a cardiac arrest happens, the patient will be unresponsive. If there is no pulse, then CPR should be started immediately, emergency services should be called (9-1-1 in North America) and an “automated external defibrillator” (or AED) used if it is available.

Does orthostatic intolerance (OI) or postural orthostatic tachycardia syndrome (POTS) cause cardiac arrest or heart attacks?
No. These are unrelated.

How common is cardiac arrest in the general population?
It is estimated that there are about 600,000 cardiac arrests in the USA annually, so the incidence is about 0.2% per year. In some people with structural heart diseases (e.g. cardiomyopathy or after myocardial infarctions, or in people with some inherited heart rhythm disorders), this may be a lot more common.

How common are heart attacks in the general population?
It is estimated that about  805,000 Americans have a heart attack every year, which is an incidence of about 0.24% per year.  Heart attacks are quite uncommon in the young, but it become more common in both men and women from middle age and the frequency increases with increasing age.

Where can people do to reduce their risk of heart attacks and cardiac arrest?
Exercise regularly, eat healthy, stop smoking, and manage conditions like diabetes or hypertension closely with your doctors. For more information, visit the sites below.
Dysautonomia International: dysautonomia-friendly exercise tips
American Heart Association: heart attack prevention
Heart Rhythm Society: sudden cardiac arrest prevention

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Meet Zack Orban, the focus of Dysautonomia International’s Volunteer Spotlight for December 2019! Zack has been a great volunteer for Dysautonomia International for the past several years.

Zack was instrumental in carrying out our 2019 conference study earlier this year. He processed hundreds of blood, serum and genetic specimens using the laboratory skills he acquired as a Neuroscience major at North Central College and as a Research Study Coordinator at Northwestern University, where he currently works on T cell immunity and the role of viruses in neurological disorders and neuroinfectious disease. “I was thrilled I was able to use my skill set and education to assist with a study to set the foundation for POTS research in terms of immunology.”

Zack has helped out at prior conferences too, and he raises funds to support Dysautonomia International’s research, physician education, public awareness, advocacy and patient empowerment programs. He’s also put his research skills to good use serving as a grant reviewer for Dysautonomia International’s highly competitive POTS Research Fund grant program.

“The organization means a lot to me and inspires me, as I want to become a researcher myself. Since I have POTS, I know first hand how badly we need the resources that Dysautonomia International provides.”

Zack was diagnosed with POTS 6 years ago and like many of us, he’s been through a lot, but he remains optimistic. “I struggled when I was first diagnosed, but once I had more experience on how to handle the condition I was able to see how much I was still able to do. Never give up and don’t be afraid to try new things that may help.”

If you’d like to volunteer for Dysautonomia International, get involved with our support groups to find out what’s going on in  your area (dysautonomiainternational.org/support), sign up for our email list (bit.ly/email_DI), or contact us at volunteer@dysautonomiainternational.org.

Zach (blue shirt, back row) was part of the international research team that conducted the POTS Immune-Phenotyping study during Dysautonomia International’s 2019 Conference.

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The holidays can be tough for someone with dysautonomia, but these affordable gifts are sure to being a smile to your favorite dysautonomia warrior’s face.

Donating in Honor of Someone Special
Donating to Dysautonomia International in honor someone who has dysautonomia or a family struggling with dysautonomia shows that you care. The individual or family the donation has been made in honor of will receive a nice letter notifying them that you have donated in their honor. The amount of the donation is not disclosed. All donations will be doubled during our Holiday Matching Grant Challenge, up to $150K, until December 31, 2019. Your donation will support Dysautonomia International’s research, physician education, public awareness, legislative advocacy and patient empowerment programs.

FighterWear
Nurture your loved one’s fighting spirit as they fight dysautonomia everyday! FighterWear was designed by fellow dysautonomia warrior Morgan McCastor, who donates the profits to Dysautonomia International. The hoodies are super soft and comfy. Turquoise is the color of dysautonomia awareness.

LiquidIV
Tasty flavors in single-serving sticks like lemon lime and passion fruit dissolve in water to help you get your sodium and hydration. Options to help with sleep and energy too! Liquid IV is a Diamond Sponsor of Dysautonomia International’s research, education, and patient empowerment programs.

SaltStick
SaltStick Vitassium is an oral salt pill with added potassium that is designed not to upset your tummy like many salt pills do. SaltStick FastChews are tasty little chewable tablets to help you get a quick fix of electrolytes. SaltStick is a Platinum Sponsor of Dysautonomia International’s research, education, and patient empowerment programs.

NormaLyte
NormaLyte PURE is a flavorless electrolyte powder you dissolve in water. PURE is formulated to provide maximum hydration and was developed with the input of over 1000 dysautonomia patients. NormaLyte also comes in flavors like green apple and grape. NormaLyte is a Gold Sponsor of Dysautonomia International’s research, education, and patient empowerment programs.

POTS: Together We Stand, Riding the Waves of Dysautonomia
This book was written by one of our founding board members, Jodi Epstein Rhum.  After raising kids with POTS and EDS, Jodi took everything she learned, reached out to experts like Dr. Svetlana Blitshteyn, and put it into an easy to understand book for patients and family members. Jodi founded the large POTS group on Facebook and is one of the founding board member of Dysautonomia International. She donates a portion of book sales to support Dysautonomia International.

Food That Cares: A Restorative Approach to Health, Living with POTS, Dysautonomia and Chronic Illness
This beautiful cookbook filled with delicious, easy to prepare, nutritious meals will get your taste buds excited. Author Wendy Baruchowitz became an Integrative Nutritionist after she was diagnosed with celiac disease and POTS. Wendy volunteers on Dysautonomia International’s Patient Advisory Board and donates a portion of book sales to support Dysautonomia International.

Peace, Love & Dysautonomia Awareness Tote
This Peace, Love & Dysautonomia Awareness tote is eco-friendly and a great conversation starer to help raise awareness. A portion of the sales benefits Dysautonomia International.  Shirts and other items with the same design are available through our Dysautonomia Gear Shop.

Compression Gear
Doctors often recommend 30-40mmHg full-length medical compression stockings to help dysautonomia patients avoid blood pooling and get more blood flowing back up to the heart and brain. While full-length stockings work best, some patients prefer thigh high or sock length compression gear.  They come in nude, black, many colors, and prints too! Compression socks aren’t as effective at preventing blood pooling, but may be fun to wear on days you’re dysautonomia warrior is chillin’ out on the couch. Abdominal compression can help too.  Abdominal binders are available, but women often prefer Spanx and similar compression undergarments. Compressing the lower abdominal area is key, so don’t get something that only cinches the smallest part of the waist.

Grocery or Meal Delivery Services
Some people who have dysautonomia have a really hard time finding the energy to go food shopping and cook healthy meals. This is extra challenging for adult patients who have families to care for.  Meal delivery services like Daily Harvest, Blue Apron or Freshly can give your loved one a healthy eating boost. A lot of people with dysautonomia have food allergies, so if you’re not sure if your loved one has a specific diet, a gift certificate for grocery delivery service like Amazon Fresh or Peapod may be helpful.

Cooling Devices
People with dysautonomia can feel much worse in the summer heat, because some of us don’t regulate our temperature properly, or we can’t sweat. Heat can also dilate our blood vessels more than normal, which can drop blood pressure. Cooling vests, neck wraps, wrist wraps, and personal spritzer fans may make us more comfortable in the heat of summer.

Glass Water Bottle Infuser
Dysautonomia experts jokingly refer to “the water bottle sign” as a sign that someone has dysautonomia. People with dysautonomia usually are advised by doctors to drink 2-3L of hydrating fluids per day, so it’s common for us to always have a water bottle with us.  It can get boring drinking plain water, so some patients like to infuse their water with melon, berries, mint, cucumber, pomegranate, citrus, herbal teas, and other flavor infusions. Look for glass bottles if you want a bottle that can hold hot and cold beverages, and something with a slip proof grip case, like this one. There are many sizes and options available.

Happy Holidays to all!

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For this week’s #SillySaturday humor, let’s find out what would happen if Simon & Garfunkel had dysautonomia.

Hello darkness my old friend
I’ve stood up too fast again
I lose my vision while standing
Bursts of tachy when I am sleeping
And the blood flow is not getting to my brain
So much pain
That’s the sound of my stomach

In restless dreams I never sleep
Can barely walk right down the street
Beneath the halo of an ER bay lamp
My body aches when it’s cold and damp
I’m gonna faint from the flash of a neon light
Don’t feel alright
And that’s the sound of my stomach

On the Dysautonomia International site I saw
We’re 70 million strong maybe more
Doctors interrupting when I’m speaking
Doctors judging without listening
Giving misdiagnoses that they’ve pulled right out of thin air
Some don’t care
Disturbed by the sound of my stomach

Fools I said you do not know
Dysautonomia really blows
Hear my words that I might teach you
Take my pulse so that I might reach you
But my limbs like spaghetti noodles fell
And echoed through the halls of your clinic

And the patients begged and prayed
Please give us NIH funding someday
Dysautonomia International flashed out a warning
That a huge patient movement was forming
And the sign said
The struggles we all have
are written on Facebook walls
And Instagram
And whispered over the sound of my stomach
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Sing along to the original Simon & Garfunkel song, the Sound of Silence. Even better, send us a video of yourself singing these lyrics! Email your video to info@dysautonomiainternational.org.

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