T H R I V I N G...
5 Tips for Traveling with Dysautonomia by Chelsea Goldstein Finding Workarounds by Amy Keys Technology and Chronic Illness by Reanna Mathis Living with Hyperadrenergic POTS: A Personal Story by Susanne Rimm Finding Balance by Trudi Davidoff Meet the Member: Isabelle's Story by Chelsea Goldstein Medical Q & A - Your Questions answered by DINET's Medical Advisors
Updated - Open Recruitment Studies Updated - Research and News about Dysautonomia and related Chronic Illnesses Celebrating our Volunteers: Melissa Milton: 2018 Rare Artist Contest brings Awareness to Dysautonomia Lauren Mlack: Meet DINET's Social Media Coordinator
Isabelle is a young, creative entrepreneur but that wasn’t always her plan. She excelled at tennis as a preteen and hoped to pursue it as a full-time career. This seemed possible until an episode of heat stroke during a tennis match caused her heart rate to be sustained around 180 beats per minute for several days thereafter. She knew something was wrong having been a relatively healthy young woman prior to the episode. However, the doctors in the emergency room she visited told her that her symptoms were “all in her head,” and they dismissed her heart rate as a byproduct of being an anxious, preteen girl.
Unfortunately, many of us know this story all too well. Was Isabelle anxious? Maybe. Who wouldn’t be after such an intense health episode with no explanation? In my years of writing the Meet the Member column, I’ve talked with so many women who have conveyed that being dismissed as anxious, dramatic, and overly sensitive have been, by far, the most difficult parts of their dysautonomia journeys. I, too, can relate. Isabelle certainly experienced this dismissal throughout her diagnostic process that took about a year and a half. She visited gastroenterologists, cardiologists and made several trips to the emergency department, but received no explanation for her sustained symptoms. Yet, she knew something was wrong; she went from a top tennis player to not being able to walk a mile in gym class.
Though many of Isabelle’s physicians did not take her debilitating symptoms seriously, she ultimately found an insightful doctor who thought outside the box to give her answers. Her now primary care doctor found a connection between Isabelle’s experiences and his time in the Army when he had witnessed several servicemen never return to full health after severe heatstroke. She was ultimately diagnosed with dysautonomia which provided her the validation, and knowledge, to move forward.
Her diagnosis was bittersweet; it gave her answers, but it also made a full-time tennis career feel unattainable. Her mom bought her a camera in an effort to help Isabelle forge a new path, and she immediately fell in love with photography. Just a few years ago, she was selected to participate in a National Geographic Student Expedition in Yellowstone National Park. This was a life-changing experience; she solidified her love for photography, she was able to learn from some of the best professionals in the field, and she made lasting friendships. Now, at age twenty-one, she is a freelance photographer for the Arkansas Democrat Gazette and works for a couple of music publications doing concert photography. She is also currently applying to internships and hoping to go to college in the near future. (*editor's note: Photo at right an example of Isabelle's work)
Isabelle’s strength, ambition, and maturity were evident during this interview. She has clearly made the best of her life with dysautonomia and credits it with helping her discover her passion for photography. However, her difficult diagnostic experiences—particularly being dismissed as an anxious, preteen girl—have certainly contributed to her identity as a young woman. She discussed some of the issues with the ingrained gender discrimination in some of the healthcare systems. Many women with dysautonomia, like Isabelle, wonder if their initial symptoms would have been dismissed so readily if they were men. She also talked about the insight of her primary care physician who was able to draw a connection between the symptoms of a young, female athlete and full-grown, military servicemen.
The dichotomy between supportive and unsupportive physicians is an important issue in our dysautonomia community. It makes us realize that we need to recognize, more often, the doctors, like Isabelle’s primary care doctor, who have been tremendous allies to all of us. Without their insight, research, and help with advocacy many of us would remain undiagnosed in a healthcare system where some professionals are trained that there is a straightforward answer for our complex, and sometimes elusive, collections of symptoms. We commend and thank these medical professionals, and we will continue to do our part in sharing accurate information about dysautonomia. Hopefully, these continued partnerships between the advocacy and medical communities will minimize diagnoses of female hysteria so that ambitious women like Isabelle can move forward to make their mark in the world.
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Editor's Note: Melissa Milton is a DINET volunteer who lends her hand to help wherever it is needed, most often on the forum. Melissa has also written articles for this newsletter, sharing her artistic view of the world with all of us. Melissa came to DINET as part of our Featured Members program and more of her art and her story can be seen on her featured page.
Melissa Milton feels honored to be among the 2018 Rare Artist Contest Awardees. The annual Rare Artist Contest is sponsored by the EveryLife Foundation. The purpose of the contest is to raise awareness for rare diseases, as they are often overlooked when it comes to medical research, medical provider knowledge, etc. Melissa’s rare disease is Dysautonomia.
Each awardee will have a chance to share their story and display their art piece at the Rare Artist Reception, during Rare Disease Week on Capitol Hill in February. One of Melissa’s State Senators, Senator Boozman, will be among those attending.
Melissa’s art statement that will be displayed with her art is intended to raise awareness about Dysautonomia, raise awareness about how water therapy can be beneficial for someone who has it and to perhaps provide some hope for those who face their own life challenges. Melissa’s statement (below) will accompany her art piece, “Flora and Fauna” (shown at left).
“My rare disease, Dysautonomia, is a neurological disorder which causes faulty instructions to be sent to the body for many “automatic” functions. It particularly sends incorrect instructions to the circulatory system.
Like many of us with Dysautonomia, my circulatory system no longer supports me correctly. I am now limited in how long I can stand up (5 minutes for me) and in how long I can sit up (2-3 hours). Other than that, I have to lie down to keep my blood pressure from dropping so low I pass out, or from spiking so high, I’m at risk for stroke. As careful as I am, I still randomly pass out from low blood pressure 3-6 times a week. I am homebound and no longer drive.
I became severely disabled in 2016. I took up painting in 2017 for something to do during the long hours I am forced to lie down during the day. Painting soon took on a life of its own and had become a joyful form of self-expression for me. It has also led to me making new friends (other artists) despite being homebound. It has proven to me that; indeed, one door may close on your Life, but if you search hard for a positive new door then you’ll likely find it.
Like many who have Dysautonomia, I am quite limited in standing on land although I can stand for hours if chest deep in the low gravity environment of water. I spend time each day in the water, happily exercising my muscles and enjoying the freedom of movement I no longer possess on land. My physical therapy time spent in water has inspired most of my artwork. Much of it has a recurring theme of a person, object, or animal weightlessly gliding about.
Some of my art pieces are underwater photographs I have taken in my therapy pool and then turned into paintings later on. This art piece, “Flora & Fauna,” is one of them. My daughter and I sat in the bottom of my therapy pool while I took a photograph of her releasing the silk roses. To me, it symbolizes one of those moments when Life requires you to let go of something you love, and you have no choice but to watch it drift away from you. Like the girl in the painting, we have to learn to let go of the roses. Otherwise, our hands won’t be free to hold on to the next good things coming our way. For those of us with rare diseases, those roses we have to let go of may be the life we had back when our bodies were healthy.”
Melissa encourages other people with Dysautonomia who create art to enter the 2019 Rare Artist contest. It’s a lot of fun, and you’ll be helping raise awareness for Dysautonomia. Entries for it begin in June 2019. You may enter through the “Rare Artist.org” Page on Facebook.
You may view artwork from this year’s and prior year’s Rare Artist Contest by visiting their website: https://www.rareartist.org/
DINET congratulates Melissa and all the other rare disease warriors who participated in this fantastic contest. If you have participated in something to bring awareness to Dysautonomia disorders, please let us know by emailing email@example.com Please include the words "dysautonomia awareness" in the subject line.
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“ I am always so dizzy!”
That was the beginning. My doctor shrugged his shoulders and said: “ We will keep an eye on that.” I knew something was off but really had nothing to report, I just knew I wasn’t right. I kept feeling like I was going to pass out. One day, I was home alone with my 4-year-old daughter, and I had to lie down on the floor knowing I was going to faint, heart racing, shaking. “ If Mommy goes to sleep on the floor dial 911,” I told my daughter and pointed to the numbers on the phone. But I recovered. A week later it happened. I was already wearing a heart monitor because of my complaints about having weird heartbeats. I was at work, a nurse at a cardiac unit, walking down the hall, heart racing and pounding, feeling like my heart was going to explode. When my knees got weak, I leaned against the wall …. when I opened my eyes I was on the floor, panic and noises and activity around me. 168/110, heart rate 160 – that was what they said. Minutes later I was in the ER, admitted and scheduled for a stress test in the morning. The heart monitor showed Tachycardia 160’s for 3 hours prior to the faint.
I had never even heard of POTS or dysautonomia or anything like that, and neither had my doctor. He sent me to a cardiologist for a TTT ( Tilt Table Test). I had never heard of that one either. I failed the test by promptly passing out. “ You have the common faint and most likely will continue to pass out “ was the expert opinion by the cardiologist. “ Take this pill – Metoprolol – and good luck”! I went online and typed “tachycardia and hypertension” and kept on reading, realizing that I had POTS. I saw 5 cardiologists, and a neurologist who performed autonomic studies ( which I was told were unremarkable ) and I tried everything they told me to do – drink more, take salt tablets, wear compression stockings. But the fast HR, high BP, fatigue, palpitations, and the ice cold hands and feet continued. I kept passing out several times a week. And then something changed: one day I woke up from a faint at work, surrounded by nurses and doctors, and was told: “You just had a seizure!!!”. That’s when I had enough. I did not want to have this anymore, I needed to go on with my life. Why couldn’t I just take a pill and get better?
A several day stay at an epilepsy monitoring unit finally showed it: when I fainted while hooked up to EEG and heart monitor, the EEG showed a change in brain waves - excessive vasoconstriction causing blood flow to the brain to stop. The monitor showed tachycardia, an unusual finding since they had expected a drop in HR or even for the heart to stop beating. The neurologist was stumped. So was I because this was not what I had read about POTS. So, I found myself an autonomic specialist and one year and another TTT later I sat in his office, unloading my story to an endlessly patient and understanding physician Dr. Blair Grubb. For 2 hours I spoke without hardly taking a breath while he listened. Then he told me what I thought was true all along – that I had POTS. And after drawing blood to check my neurotransmitters, the diagnosis was confirmed: hyperadrenergic POTS. Norepinephrine levels were elevated both lying down as well as being upright. “What now?” was my response. And from then on I saw him frequently, even passing out in his office. He implanted a loop recorder that monitored my heart rhythm for 3 years until the battery ran out. All it ever showed was tachycardia and PVC’s (premature ventricular contractions - extra heartbeats that can cause a fluttering or a skipped beat in your chest). Every faint, every seizure – tachycardia. Harmless in the eye of cardiologists but life-altering to me. I tried many, many medications, different beta blockers, Midodrine, Mestinon, Norvasc, Clonidine, Lexapro and more … all with varying results. All along, despite still being ill, I knew that I was in good hands and that Dr. Grubb would never give up. Every time I saw him I was crushed, hopeless, and frustrated, but he always gave me hope, and if one thing did not work, he tried another.
The worst thing was not even the physical symptoms, it was the fact that my life had changed. I was no longer the multi-tasking, healthy, always-on-the-go and productive nurse/mother/wife/woman that I was used to being. I was reduced to a cripple, unable to work, to take care of my family, to function. I had lost my independence. I could not drive or work or shop or go out or eat out or see my daughter dance or get awards at school. My smiles were faked grimaces, my laughter was a sigh; my days were dark and my nights were long. I did not want to get out of bed, the only place where I could feel better and was not afraid of losing consciousness. This anxiety was my enemy, always being scared of what might happen if I get up, seizure or syncope? My body and spirit were covered in bruises. In the mornings, I would wake up from a restless sleep and think: “ Do I really have to do this all over again? Do I really have to leave this bed?” And I started to believe that it would be so much easier for everyone if I could just die. There was no use for me any longer, I was just a burden to society. But then I thought of my daughter, and I realized – this is depression!!!
I made an appointment with my doctor and told him how I felt. I talked to my best friend. I saw a neuropsychologist and found that these feelings were normal for someone living with chronic illness. But this was not me. I was strong, I was young, I was better than this. I started to eat better and to exercise ever-so-slowly. I began to join my husband on shopping trips in my wheelchair, and I played games with my family. I found joy in preparing meals and baking my own bread. I went to church as often as I safely could. I got my groove back. I was better than that. I did not have to be a victim of this illness. If I could not live WITH POTS, then I would live DESPITE POTS.
Today I am well. I am disabled and no longer work, and I still have POTS. But my life is good – just different from what it was 10 years ago. I realize that for many people, the depression becomes an additional struggle on top of the physical ones, but luckily my depression improved with the changes I made. The medications prescribed for my physical symptoms keep me upright and functioning. The most effective treatment for me is weekly IV fluids. It took me years to convince my doctor that I needed them on a long term basis. I had spent more observation stays in the hospital for IV fluids than I can recall. Over the years I was in the ER or hospital every 6-8 weeks. I would literally crawl in, and the next day I left skipping and hopping. My doctors were against inserting a port and my receiving IV fluids on an ongoing basis. The reason being the risks associated with a port ( blood clots, infection ). I begged my PCP for several years, but he did not feel the benefit would outweigh the risk. Until last year, when some doctors refused to give me IV fluids because “ I could drink.” This led to several unnecessary seizures and me having to crawl again. So finally my PCP had had enough and agreed to the port and weekly home infusions – and my life changed to the better. I used to pass out frequently, the longest I went without a seizure or faint was only 11 weeks. But recently, I had my first syncopal episode after 5 (!!!) months!!! And the best thing is not just the fact that the spells have stopped but that my quality of life has improved. I am no longer fatigued. I can be active. I can exercise. I sleep better. I am no longer afraid to leave the house for fear of passing out.
Today I shed tears of laughter, and the hope that I had almost lost once is my daily companion. We CAN live despite POTS and better days ARE coming. We just can’t give up.
Editor’s note: Depression can be a natural response to chronic illness. For some people, like Susanne, making changes in your outlook and lifestyle can be enough to help you through that depression. But that is not the case for many people who suffer from depression and there is no shame or blame for the patient or the family. If you have depression or are caring for someone who does, please seek help from a professional. Long lasting feelings of despair, hopelessness or thoughts of hurting yourself need to be addressed immediately. Contact the National Center for Suicide Prevention https://suicidepreventionlifeline.org/ Or call 1-800-273-8255
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Technology is bringing chronic pain and chronic illness patients together, allowing us to participate in life in ways that we normally would not be able to. I volunteer with a non-profit as the Co-Editor of a blog, so I get to see first hand how technology is bringing patients together all over the world. Technology is not only making things more convenient but also creating a sense of family and comradery. It is helping to combat the sense of loneliness and isolation we all have experienced. Resources are also something that are being made more available through the wonder of technology.
Applications for creating art
There are so many ways that technology can enrich the lives of people with disabilities. Currently, my new favorite toy is a painting application. Before I got sick, I loved to paint and make art. Today, I have to weigh the cost to my health inherent in the traditional process of painting. My health is usually the one to win that analysis. However, using the painting app there is no cleanup, and I can do it from my bed on my tablet. This is as close to painting as I can get, and if you have a stylus, it can make the art even more rich in detail. There are many different apps out there, some free and some a nominal cost, but for an artist who lost the ability to create, it is priceless.
Zoom, Skype, Facebook Messenger Video and similar programs and apps.
Many of us know the loneliness and isolation that comes with being chronically sick. I often wonder how people with these conditions connected in a consistent and fulfilling way before our techno boom. I would say 90% of my interactions are through the marvels of technology. I have attended chronic pain support group gatherings via zoom. Zoom is a video conference chat app so you can see the faces of the people you are meeting with. There are times when I cannot get out of the house for my mental health therapy. In those instances we utilize zoom. That practice alone saves my sanity regularly. I find comfort in seeing the face of the person I am conversing with. It feels more personal and more like I am making a connection than a phone call does.
Accessibility programs and speech to text
Whatever form your disability manifests, most operating systems have accessibility options. My personal favorite is Talk to Text dictation. This is an essential tool for days when symptoms create physical barriers to typing and writing. For me, there are days when my fingers don't work correctly. Having the option to speak my thoughts and have them dictated, allows me to communicate more often with the people I care about.
For people who are blind or vision impaired, another form of accessibility is found on most websites. Typed descriptions of images are included to allow access to those images via sound. For the deaf and hearing impaired, let’s not forget closed captioning, which is a feature on almost every new TV, computer and movies. Since 1990, when the Americans with Disabilities Act was signed, closed captioning has been required for instructional and educational videos. However, over the years it has become an accepted practice for many other types of media. More recently, programs have become available that can be operated by eye movements. These features are often utilized by ALS patients and people with paralysis. These types of programs allow patients who cannot communicate in any other way to interact. There are even art and music programs being introduced that are designed to operate with eye movements.
By definition, social media is designed to bring people together and to connect us. It is one of my favorite tools in my toolbox. On almost every platform you can find a support group or community for whatever your disability is. It has had an overwhelmingly positive impact on the disability community. I have heard many people say that when they found “their tribe” they no longer felt alone in their battle. It can connect you with people all over the world who share your conditions. Also, social media has done wonderful things for awareness causes. Many illnesses, like dysautonomia and EDS, were virtually unknown by the general population. I have been able to use social media to educate family and friends and to share my day to day struggles. It also fosters resource sharing. When new research or studies are released, the news quickly spreads across social media. Through "following" platforms like Facebook or Twitter belonging to groups like DINET or other dysautonomia organizations, patients have access to feeds of information that they wouldn't have had 15 years ago. This gives patients the ability to better advocate for themselves with their medical team and to explore the latest trends in treatments. Of course, it is vital that care is taken to confirm the identity of the groups you follow and to be sure that you check all the information you see with medical professionals.
Smartphone and tablet apps
These days there is an app for EVERYTHING! Including symptom trackers and health apps. One that I like is backpack health, you can put in all of your information, and they give you a personal URL that can be printed on a medical ID bracelet.
The Amazon Alexa is another device and app that is proving to be helpful for disabled people. Along with the Echo, you can call for help if you fall from any room within listening range of the device. You can activate the tablet or phone with Alexa’s name and give a command to call 911 or a family member for help. I have personally used it to call my husband after falling. There are also smart plugs that have apps to turn on and off electronics, saving you from the need to get up. There are also FitBit and apps like that that allow you to track health information. Being able to monitor heart rate and sleep cycles can be a useful tool in managing symptoms.
There is no way I could list all of the ways smartphone apps make my life easier. I can do most everything I need to do online now. Grocery Shopping, medication renewals and "to do" list applications, have all made my life easier and save me precious spoons that I need so I can be present with the ones I love. We are even able to read books through apps in bed or have them read to us. When I am having a tough day and cannot read my daily meditations, I have them read to me through the app. I am virtually unstoppable as long as I have my phone!
Virtual Walk and Races
I have taken part in a Virtual 5K races for an organization that I volunteer with, and I loved the accomplishment. Runners have been competing in virtual races for a long time, but it recently has been a part of awareness campaigns to bring attention to illnesses where people cannot attend in person. You track your steps or distance in your wheelchair and register them with the event site that is doing the walk. Doing it at your own pace is a way we can reach our goals without compromising our health. I wrote an article for the mighty on the impact of these virtual races. You can find it here: https://themighty.com/2017/11/virtual-races-awareness-walks-dysautonomia/
I polled the community before finishing this article, and I was amazed at how much we rely on technology to make our lives easier and more fulfilling. Mobility devices are also making huge strides in technology and are utilized very often. So often, in fact, it may end up being a separate topic for a future article. Adjusting to a less active life is one of the hardest transitions most people with chronic illness need to make. It was a hard transition for me. Looking at the way I used to do things and finding easier ways, was a turning point for me. We found many solutions in using technology, and it has helped me live my best life. I still have a few things on my wishlist; such as a laundry folding machine (yes they make those!), a vacuum robot and a robot version of Dr. House. I hope after reading this, you also add some tech to your life! If you have some ways that technology has made your life easier or more enjoyable, I would love to hear about it. Please share with the community in the comments.
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Traveling can be an undertaking for anyone, but it is particularly difficult for those of us who are balancing our precarious health and our everyday lives: you could be thinking, “How could I possibly think about travel in addition to everything else?” Travel IS possible with dysautonomia though it can be difficult. However, the rewards of traveling, whether they are exploring a new place or visiting loved ones, can be well worth the struggles.
Here are five tips for traveling with dysautonomia:
1. Build in margin. This was the best travel advice I ever received from a stranger on a plane. She told me the key to reducing stress in life was building margin into everything you do. Do you think you need two hours to get through the airport? Schedule two and a half. That margin allows for any unforeseen mishaps (which will certainly happen) and prevents you from rushing. For me, rushing is almost guaranteed to cause a flare, whether it be moving too quickly and getting my heart rate too high, or the stress of rushing causing me to forget something important.
2. Prepare, Prepare, Prepare. For anyone, forgetting something on a trip is annoying but, for us, it can mean the difference between being relatively healthy and really, really sick. Not to mention, we have that pesky little thing called brain fog that can make remembering things tricky.
Start packing early and always use some type of checklist that you refer to multiple times. If you travel frequently, keep a core list of items you need, organized by category (e.g.; medications, toiletries, core clothing, assistive devices, etc.), and you may even consider making supplemental lists for specific types of travel (e.g.; summer trip, winter travel, staying with friends/family, etc.). Also, NEVER cross anything off your list until it is permanently in your bag. This prevents major mishaps such as taking your medications out of your suitcase the night before and forgetting to put them back in your bag because they were already crossed off your list.
Next, *try* to pack minimally. This does not mean leaving your essential medical devices and medications at home—we know that it may be impossible to pack light with these items. This does mean, however, that if you are going to be lugging a lot of medical items around you may thank yourself if you leave that cute, but impractical outfit at home. Try to pack things that are multifunctional (e.g., comfortable shoes that can be dressed up or down) to limit the physical and mental stress of keeping track of (and carrying) so many things!
3. Know that air travel IS possible. I used to love the thrill of flying and the energy of the airport. I still do, as long as I am realistic about how I navigate these situations with dysautonomia.
Start preparing the week before you fly. Prioritize light, daily stretching to prevent muscle cramps. Drink even more water than usual two days before the flight. Make sure you have everything you need; for me, this includes high-quality compression socks, comfortable clothes, my medication (always, always in my carry-on!), a vomit bag, a neck pillow, two empty water bottles (refill stations are in most airports), salty snacks, a packet of electrolyte mix, and a tube of Icy Hot. Your list may be different, but put some thought into it ahead of time. Also, the flight will likely be uncomfortable, so balance that by treating yourself! Save a book you’ve been wanting to read/listen to for the flight. Download your favorite TV show to binge watch. Bring snacks you love.
Next, it never hurts to ask. Call ahead and arrange a wheelchair or trolley escort through the airport, if needed. If meals are being served on the plane, call the airline to be sure your dietary restrictions are on file; they will bring you meals to accommodate your restrictions, and you will get served first! If your suitcase is overweight, or you have extra bags, due to medical devices remind your gate agent that they cannot charge you baggage fees for these items. Request a hand security check if removing your medical devices is a hassle. Make your airline aware of your condition (even if it is invisible), and request to board with those who need additional assistance. Sometimes, upon request, the airline may even give you the bulk seat which has extra legroom, for no additional charge. It doesn’t always work, but it is worth a try! It is always helpful to have documentation of your condition with you, in case anyone questions you.
Lastly, try not to be embarrassed about asking for needed accommodations. Admittedly, I do sometimes get shy about asking for help, but I am always so grateful I chose not to stress my body more than it needed to be.
4. Plan for arrival fatigue. Travel is tough. You will be tired when you arrive at your destination. If you flew to your destination, have a plan in place to get to your accommodations painlessly—call ahead to arrange a pick-up car or shuttle, check to make sure Uber/Lyft regularly frequents that airport, or have a loved one pick you up. Save walking and exploring public transportation for later in your trip when you feel more rested.
Plan for a travel flare, but hope it never comes. Try to limit your activity on your first day of arrival. Also, be easy on yourself if you need to take one, two, even a few days of your trip to rest. I used to get angry with myself when I traveled to an amazing location and spent half the time in bed and, ultimately, pushed myself too hard. I’ve changed that mentality. If I need to rest for three days, so be it, even if it means that I only get one day of truly enjoying my trip. To me, one day of actual enjoyment is far better than five days of pushing myself to the point of distress.
Jetlag can be a whole different beast for those of us with dysautonomia when changing time zones. Do your best to follow the golden rule of jetlag – try not to sleep during the day. That being said, those who created the golden rule probably never felt the crippling fatigue of dysautonomia. If your body is forcing sleep upon you that you can no longer fight, do not stress. Sleep. You may take longer to adjust to the new time zone, but it is worth it to keep yourself as healthy as possible. You will probably wake up at strange hours of the night. Have a good book on the ready to distract yourself because stress will only keep you awake. You will adjust eventually.
5. Choose accommodations wisely. I am all for getting local experiences, but accommodations may not be the way to do that when you have dysautonomia. The benefits of a chain hotel include standardized rooms and knowing what to expect. They may have transportation to and from the airport, you can control the temperature of your room, you will know the quality of the beds and linens, you will have a private bathroom, and you can request an accessible room. Upon asking, you can usually get needed items like mini refrigerators, extra pillows, and microwaves. Staying in a local hotel or Airbnb is not impossible, but you should do your research ahead of time to make sure you will be comfortable.
It can be trickier to navigate staying with family, friends, or renting a house with a group of people. You will probably have less control over access to food, the comfort of your bed, noise, lighting, and temperature. You may also feel torn between engaging with your companions and retreating for much-needed rest. In these situations, do your best to educate your loved ones early and often about dysautonomia. You can even have an advocate help you do this if you are uncomfortable. That being said, many loved ones have the best intentions but still may not fully understand your needs so you may need to make extra preparations. If you are driving, bring your own bedding that you know is comfortable. I have come to love my sleeping headphones; a headband I can pull over my eyes with soft headphones built in to drown out noise. If food is a concern, offer to grocery shop for the hosts as a way of thanking them, which also ensures you have some foods that you can eat. Or, cook dinner one night – sharing a favorite recipe is a great bonding experience, AND you can cook something that works with your body. If you are renting a group house, offer to be the person that manages the booking situation to find a house that meets your needs. In doing so, you can be sure you won’t be stuck on a rickety pull-out couch or sharing a bathroom with eight people.
Most of all, be honest with your loved ones. Most people will appreciate your honesty, and will not view you as difficult or high-maintenance. I have found that when my needs aren’t considered in group travel situations, it is usually the result of a misunderstanding, which can be rectified over time with communication and education.
While each of these tips could be an article in their own (perhaps, they will be in the future!), we hope these brief tips provide you with some ideas—and confidence—in planning your next adventure.
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My intention with this article is to inspire you to be able to find ways to do things you once loved or enjoyed. My counselor recently told me that I need to make a list of new expectations for my new reality. That’s just it. All of us with chronic illness have a new reality that we certainly didn’t ask for.
My husband loves a challenge. When I really want to do something we brainstorm together and find workarounds. I loved when we would go to the Oregon coast and walk the beach looking for glass floats. If you aren’t familiar, local artists in Lincoln City make blown glass orbs in all different colors and designs, then the city has local volunteers hide them along the beach. Each one is engraved with a number and can be looked up to find which artist made it and on what day. They hide approximately 3,000 each year. We never found one and I was really bummed that we probably couldn’t go back and do it again. My husband reminded me that in fact, we could, we just needed to find a hotel with accessible beach access (not 65 stairs straight down) and we can rent a wheelchair with tracks, making the sand available to me again. Brilliant.
I’ve always liked traveling. Gone are the days of working all day, then leaving work in a rush to drive through the night to enjoy a quick weekend getaway, only to rush home in time for a quick nap before heading back to work. My body can’t even get through a workday anymore, much less cram in a quick getaway on the fly. It doesn’t mean that we can’t still do little trips to escape, but we have to make adjustments. We have to have an extra day after we arrive for me to spend all day resting in the hotel bed. Is it more expensive? Yes. Is it a bit more inconvenient? Yep. But we can make it work and still enjoy little trips as long as we plan ample rest before and especially after the journey there.
Driving really long distances straight through is out, but we can find a fun little town half-way and grab a hotel there to break the drive into two days, instead of one. Sometimes it’s fun to stay in a teeny tiny town on the way to the tourist destination anyway. The other option is that instead of driving nine hours in a day, as we used to, we could instead fly over to be much closer to our final destination. Then we would only need to rent a car and drive a couple of hours to get to our final stop. Again, just another option that can be considered, even though it’s not what we used to do.
My sister-in-law always wanted us to go to Scotland with her. Once this became my new reality I was bummed to realize I couldn’t make that flight over the ocean at such high altitudes. My husband found some different options to get there by boat though. Yes, it is more expensive than flying. Yes, it takes longer meaning my husband would need to use more vacation time. But I can’t tell you how nice it is just to know that it is possible, even though we certainly aren’t planning it anytime soon. Just knowing that it could be done and we don’t have to completely eliminate the possibility of ever doing it means so much to me.
Now, maybe you aren’t at a place yet to even consider travel. Here are some of my best workarounds for around the house and day-to-day life. In our bedroom we have a remote to turn on the fan and the overhead light, eliminating the need to get up and walk to the switch. If I want to be well enough to do a certain activity, I have to pre-plan my rest. I write my rest days on my calendar to make sure I don’t accidentally schedule an appointment. I load up on electrolytes and avoid foods that tend to make my belly angry for days before the event to make sure I’m at my healthiest. On a regular day, I still plan rest times between each activity, such as a shower, doing my hair, makeup, etc. Speaking of showering, I keep a wireless doorbell in my shower and only shower when someone else is home. I can hit my doorbell and get help right away if I feel faint or fall.
Another workaround is to take my pills when I wake up early to go to the bathroom, then when I get up for the day a few hours later my pills are already in effect. I take double water to my bedroom- one insulated and one not. I drink the non-insulated one first then the other is still cold when I get to that. Doing that cuts my trips to the kitchen in half. I keep a candle on my nightstand to help when odors upset me. I also have my pulse oximeter and blood pressure cuff on my nightstand so I can keep records for my doctors. It’s important to have entertainment items near all of my rest places- some examples are my cross stitch, a book, coloring book, Ipad, etc. That way I never feel trapped without something fun to steal my focus. On better days I pre-cook freezer meals to throw in the oven on bad days. I can’t lift up the dog water bowl multiple time a day to refill it, so I keep it in the floor in front of the sink and pull the sprayer out to fill the bowl throughout the day.
I know I’m not the only one who is frustrated by not being able to do things that I used to be able to do. We just need to spin the perspective a bit. It’s not so much that we can’t do things we used to do, it’s just that we maybe can’t do it in the same way we previously did. But there is almost always a workaround to be found.
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Meet the woman behind the Survey Sunday feature on DINET's Facebook page. Lauren also is one of the volunteers posting articles about living with dysautonomia and chronic illness. Meet one of DINET's most valued volunteers.
Lauren lives in Cleveland, OH with her wonderful parents and Goldendoodle, Riley. She loves cooking, baking, crafting and making metal jewelry in her spare time. When she was little, she was always having health issues that would come and go randomly and cause lots of fatigue. Her mom kept pushing for an answer after going to countless specialists. Finally, when she was 12, she had a tilt table test which diagnosed her with POTS. After having to leave public school and switch to online schooling due to her health, she was finally feeling well enough almost a decade later to attend a local community college. Lauren recently was able to achieve an Associate’s degree in graphic design. She is very excited that she can use her skills to help a great cause like DINET.
Editor's Note: Over the next few months, Lauren will be preparing a new video feature for DINET's Youtube channel. The feature will focus on a great variety of subjects. If you have a topic that you would love to hear more about or would like to see DINET cover, email: firstname.lastname@example.org
Above: Lauren and her Goldendoodle, Riley
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Finding balance, this is the most frequent topic I talk about with my cardiologist. My visits are not dominated by the medical check-up or speaking of drug and management adjustments. No. We get that out of the way fast and get to the heart of the matter—healing me. My sense of self got battered by dysautonomia as much as my body. Medicine, supplements, food, and water can only go so far in knocking back our symptoms; the rest is up to us.
Balance, this is a wonderful pun. Dysautonomia, for me, comes with a diagnosis of vertigo, and it comes with balance and gait problems. Along with physical issues, I need to find balance emotionally because I don’t know what I did to deserve dysautonomia, but I have it. I did nothing to cause it, none of us have, but here it is, and so we have to deal with it. I’m not the self-pity type, but some days I am like “Dang! This is just so wrong.” Do I want to be in that pit of forever thinking it’s not going to get better? No, I don’t.
I turned toward advocacy; I started writing on forums and joined DINET’s volunteer team. I read posts about how others were handling situations and I learned from them and felt encouraged. I became vocal about my symptoms and my right to describe them and be treated with dignity. I do not forget that we have a fiduciary relationship with our doctors. Would you tolerate going to the mattress shop and buying a king but they give you a twin to take home? No, you wouldn’t tolerate that. Your relationship with your doctor deserves the same satisfaction. So saying “Excuse me, Doctor, could you rephrase that because it sounds like you said…” should immediately get his or her attention that you have expectations of receiving quality treatment. They do get it, and you should only have to ask once. It’s up to each of us to speak up when we feel we are not being given the care we want and need.
Physical Therapy gets me out of the house twice a week. My health is way too complicated for a coach at the gym, and my immune system cannot handle so many public germs. My doctor at PT has combined many scripts into a routine for balance and gait, core and overall strength. I do feel great benefit from the biofeedback approach to PT that I engage in. I used to lose my balance walking up the wheelchair slope at intersections; a few times recently I’ve felt like I was going to fall over backward into the street, but I had the strength to restore my balance and walk up that tiny hill. I didn’t crack my head on the concrete or get run over by a truck. PT WIN. I get light-headed at the top of stairs, but now I have arms strong enough to grab the railing instead of tumbling down the steps like a ragdoll. We recover from vertigo and syncope faster than we recover from bruises and broken bones when we collapse on something very hard.
At home I have some balance boards for practice, I’ve got stretchy straps, some light hand-weights too, and every day my goal is to use some of it. I’m up to thirty reps of this and thirty reps of that. When I started, I would sweat at three, but it takes time to build up to double-digit numbers. You have to be patient with yourself.
I rescued two big puppies that grew into big dogs, so big I walk them one at a time. A couple of years back if one of them just gently tugged me I would trip and fall right over. Now, I can give them a yank if need be without a hazard to my health. I am doing much better because of the physical training from biofeedback. My doctors renew my scripts when I ask for them because they can see the improvement too. PT works.
In a few weeks, it will be the two-year anniversary of my diagnosis. My diagnosiversary. “CardioNeuro what? Vaso what? what-Syncope?” It was only a few minutes after I had finished a TTT. I did not faint like many of us do, but I had enough readings for the EP to ask me what makes me feel better. “I go lay down.” That was it. That was the magic answer. This was only the second time I had met the EP, but it was the first step in getting better. He started changing my medications right then and there. And over the last two years, he has slowly brought me to a safer place where the worst of my symptoms are mostly controlled. I do not often write about my EP, but he has the brains of a genius and the gentle soul of a teddy bear.
A few weeks after the TTT I had a follow-up with my cardiologist. I was already starting to learn from the internet, trying to first look at .org, .edu and .gov sites for valid information without hype or a sales pitch. Instead of being satisfied, I got curious about more than dysautonomia and its effects on our bodies. I got interested in how good doctors can have a positive impact on our health. We have not all had the same experiences with medical professionals, and in the process of seeking a diagnosis, we have met many doctors and nurses who were lacking knowledge of dysautonomia symptoms. It can lead to a frustrating relationship between doctor and patient. That frustration fueled my fire, and I talked about it with the cardiologist. He encouraged me to find answers. I read from NIH, National Institutes of Health, as much as posts and replies on forums, or the inspiring blogs and articles of online magazines. All provide a well-rounded view of what it is to be a dysautonomia patient. My doctor has never told me to study a particular topic or said: “Read these URLs only.” No. Instead, I follow my own path and learn as my interests take me. It has been an experience that I continue to enjoy and practice every day. He introduced me to self-learning as part of my healing; it has become a large part of my life two years post-diagnosis. I’ve been watching educational videos on YouTube, it’s not all fun and games there, but I watch more than medicine. Search, and you will find videos for anything you want to know on any topic. And learning something new or teaching yourself a new activity is an effective therapy for fighting brain fog and forgetfulness.
Learning to live with chronic illness can be all-consuming. But over time, you will find a balance between managing your health and enjoying your life.
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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 email@example.com
Question from member FIONA:
I have been recently diagnosed with Dysautonomia following many years of periodic symptoms. I don’t fit into any specific category at the moment although I also suffer from adrenaline surges which suggest an overactive SNS. My body literally crashed last September and I have been desperately trying to deal with my daily symptoms since then. My TTT showed unstable fluctuations in my BP although I didn’t pass out. I still await blood results for lying/standing norepinephrine levels.
I’m emailing your team as my most worrisome and debilitating symptoms are now from Orthostatic headaches. Once upright, I quickly feel discomfort/pressure/pain in the back of my neck and head. This intensifies and I then feel weak in my extremities, slightly nauseous and need to lie down immediately. If I don’t lie down fast enough, my SNS triggers adrenaline surges which spike my BP, raise my HR, flush my face and cause me to feel terror as if my head will explode. The intensity and duration of these surges is unpredictable and I always feel exhausted afterward.
I’m especially concerned as my ability to remain upright has slowly decreased over the past few weeks due to this headache issue. It’s now difficult to even walk a few steps without the head pressure feeling. In addition, I have suffered from painful shoulder muscles for many years. My other Dysautonomia symptoms wax and wane but this is quite unbearable. I also suffer from migraines and am perimenopausal.
Have you a likely explanation for why these headaches are occurring? Is my brain simply starved of oxygen? I’m guessing that my SNS is then acting in an overcompensatory manner? Have you any advice on coping mechanisms? I just don’t know what my new normal is or how to begin to work through this.
Any help/advice greatly appreciated.
Answer from Dr. Satish Raj:
I am sorry to hear you are unwell.
Headaches are commonly seen in patients with various autonomic disorders, and they can be difficult to manage. I do not think that these are due to the brain not getting enough oxygen. That can lead to loss of consciousness and not "pain".
I would suggest that it is important to make sure that your BP is adequately supported. If you are dropping your BP or perfusion, that could certainly account for the shoulder pain on standing and maybe head/neck pain.
Another consideration is that there are some patients that can develop spontaneous leaks of their cerebrospinal fluid. The headaches are like "spinal headaches" that people can experience sometimes after epidurals that go poorly. These can be hard to diagnose, but one can start by looking at an MRI of the brainstem and occasionally doing a myelogram (contrast into the spinal canal to look for leaks). The treatment often starts with attempts at a "blood patch" (blood injection into the spinal canal to try to clot and "patch" the hole). Unfortunately, they are often less effective in this condition with the spontaneous leaks than in patients where a needle caused the hole. Some patients also get better for several days and then get worse again. However, some do get better.
Dr. Satish Raj
Dr. Satish R. Raj MD, MSCI, FPCPC
Associate Professor of Cardiac Sciences
Libin Cardiovascular Institute of Alberta
University of Calgary | Vanderbilt University
Question from member Jan:
My cardiologist said I have dysautonomia. My BP is both very low with passing out or very high eg 220/125. In the last 12 months, my high BP has caused some heart damage, left ventricular thickening, left atrial enlargement, mitral valve regurgitation.
A geneticist last year said I meet all the criteria for EDS hypermobility Syndrome with the exception of high as well as low bp. I also have chronic secretory diarrhea which appears to have some autonomic component. This does not match the criteria for EDS. Had a normal nerve conduction test.
My problem is how to treat labile bp so that treatment doesn’t worsen passing out. My treatment at present is to take a small amount of short-acting bp reducing medicine if bp over 180 sustained for 1 hour, max 3in one day. However, on the occasion, I took two in one day I was on the floor and bp extremely low for hours.
Most information on dysautonomia is about dropping bp. Are you aware of my problem and any advice on management?
Answer from Dr. Nicholas Tullo:
The term “dysautonomia” includes many different disturbances of the part of the nervous system that controls heart rate and blood pressure. However, many factors affect blood pressure other than the autonomic nervous system. These factors include the total amount of blood and fluid in your circulatory system, the strength of your heart’s contraction, and the health of your venous system. The veins become an important issue because a significant portion of a person’s circulating blood volume can wind up pooled in the veins of the legs and even the lower abdominal cavity. The body’s ability to maintain a normal blood pressure depends heavily on how much blood is getting back to the heart since the heart has to be able to fill properly (“what goes in must come out”). When most of the blood is in the “wrong place” (stuck in the lower parts of the body) the blood pressure can drop dramatically. Chronic diarrhea represents an excessive amount of fluid loss that tips the scales towards being a little dehydrated, which just compounds the problem. Hypertension may be a manifestation of age (stiff blood vessels) and “essential hypertension,” which is probably a genetic abnormality in the hormonal control of blood vessel constriction.
Ultimately, maintaining an adequate fluid intake is key to avoiding hypotension. People with blood pressure instability should be taking in at least 2-3 liters of fluid per day (maybe more). Having EDS may affect the elasticity of the veins and exaggerate the pooling that goes on when a person stands up for more than a few minutes. External ways to reduce blood pooling includes thigh-high or waist-high compression hose or abdominal binders. They can make a big difference.
Hypertension needs to be treated with medications because of the potential organ damage that comes with excessively high blood pressures. Unfortunately, there is no one medication that solves the problem, and many patients with such an unstable blood pressure have to monitor it closely and make day-to-day adjustments in their meds (like you are doing). It is very important to avoid hypertension at night during sleep, since that induces an increase in urine production at night, leading to very wide blood pressure changes in the early morning hours. Sleeping with the head of your bed elevated 4-6 inches may help reduce nighttime urine production as well. Sometimes it’s a juggling act to have to take medications like fludrocortisone and midodrine to prevent hypotension, but taking hypertension meds… usually something long-acting in the morning and perhaps short-acting like nifedipine or nitrates to take later on if the blood pressure gets too high. You need to find a doctor nearby who is willing to work with you and help you devise a medication strategy that will help you keep your blood pressure in an acceptable range. Generally, daytime blood pressures in the 140-160 mmHg range may be reasonable in patients who are prone to severe orthostatic drops in order to avoid symptoms such as fainting.
Best of luck!
Nicholas G. Tullo, MD, FACC, FHRS
New Jersey Center for Fainting njfaint.com
Question from member Megan:
Hello there! I wanted to ask a question about Beta Blockers use and Dysautonomia. We have malfunctions of our Autonomic Nervous System and my understanding is that Beta Blockers may increase the amount of Beta-Adrenergic receptors. It seems as though this would then make it more difficult to ever withdraw the Beta Blockers because withdrawal would cause a massive adrenergic response until the receptors down-regulated.
It would make it difficult to know when Beta Blockers were no longer needed. The Nervous System is already not functioning properly and then it is stressed even more when the medication is withdrawn. What are your thoughts on that?
Answer from Dr. Svetlana Blitshteyn:
Beta-blockers may cause an indirect upregulation of the beta-adrenergic receptors in response to blocking of the beta receptors, but in our experience, beta blockers are excellent for many patients with POTS, chronic headache, anxiety, chest pain and intermittent tachycardia at rest. We have not observed patients having difficulty weaning off or stopping beta blockers when their symptoms no longer necessitate the use of beta blockers. Dysautonomia is not a static disorder; it can change in the type and severity of symptoms over a period of months to years. Many patients may use beta blockers for extended periods of time, then wean off or switch to other medications if the use of beta blockers is no longer needed or preferred. We have not observed major deterioration in symptoms when a decision to stop or wean off beta blockers is made appropriately by the specialist and the patient.
Svetlana Blitshteyn, MD
Director and Founder of Dysautonomia Clinic and Amherst Neurology
Clinical Assistant Professor of Neurology
University at Buffalo School of Medicine and Biomedical Sciences
Fax: 716-478-6917 http://www.dysautonomiaclinic.com
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