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Found 14 results

  1. by Chelsea Goldstein, Dysautonomia Information Network Learning of your new diagnosis can be overwhelming under any circumstances. Learning of your new diagnosis that no one has heard of, let alone understands, can trigger complex feelings and reactions. If you are reading this article, you have likely been diagnosed with dysautonomia recently or many years ago, or know someone who has. Prior to your diagnosis, you may have spent years searching for explanations for your symptoms. And during that search, you could have been told those symptoms are "all in your head" or "you're too y
  2. By: Chelsea Goldstein, Dysautonomia Information Network Perhaps, you've worked with your boss to make accommodations for your health at your job. You've been open with coworkers about your dysautonomia, and you've developed a handbook of pretty clever tricks to get through your workdays. Maybe you've even changed jobs in an effort to find a career that doesn't make you sick. Even still, you've used up all of your PTO, you can barely function when you get home from work, and weekends are consumed by trying to "heal" as much as possible so you can do it all over again next week. If thi
  3. by Chelsea Goldstein, Dysautonomia Information Network Mental health conditions, like depression, are often difficult to talk about because of their stigma. If you live with dysautonomia and depression you may be even more hesitant to talk about your mental health needs out of fear that your dysautonomia will be dismissed as "all in your head." Unfortunately, this can lead to improper treatment of dysautonomia, depression, or both. However, we rarely discuss how it is normal to live with BOTH depression and dysautonomia. In fact, research demonstrates that about 25 to 33% of people
  4. By: Chelsea Goldstein, Dysautonomia Information Network Homeschool, distance learning, remote education, e-learning, and tele-education are but a few terms to describe the various structures of schooling that can be done from home (either full-time or part-time) with the assistance of technology. To minimize confusion, we will refer to all of these terms as distance learning for the rest of this article. If you or your child lives with dysautonomia, you may have been engaged in distance learning for some time. You may also have a story of your tireless battle with a school system to
  5. By: Chelsea Goldstein, Dysautonomia Information Network If you are working and managing your chronic illness stop now. Take a deep breath, remind yourself that you are a rock star, and give yourself a high-five. It is difficult for anyone to have a career and manage the responsibilities of life such as family, household tasks, and self care. Throw chronic illness into that mix, and anyone who can balance their health and a career is a superhero. Or magician. Maybe a bit of both. If you aren't working, but are managing your chronic illness, remember that taking care of your health is
  6. by Chelsea Goldstein, Dysautonomia Information Network Your research on assistance animals may have you feeling confident that a service dog could help you live more independently and sustainably. If this is you, rock on and read on. If you are still unsure of whether a service animal is the right fit for you, consider reading It's Doggone Confusing: Understanding Service Animals and Emotional Support Animals (ESAs) before continuing this article to better understand if a service dog is your best option (but still, rock on). Remember that a service animal is trained to help an individual
  7. by Chelsea Goldstein, Dysautonomia Information Network Pet ownership is known to have positive impacts on depression, anxiety, blood pressure, and heart rate, to name just a few benefits. The advantages of having a furry (or scaly, or feathery) family member are no secret - 68% of US households have at least one (1). The values of pet ownership have been such a hot topic lately, that they have led to some confusion around the differences between pets, emotional support animals (ESAs), and service animals. The misuse and abuse of terms like ESA and service animal have created particul
  8. by Chelsea Goldstein, Dysautonomia Information Network You can't imagine your life without your furry best friend. The two of you have an inseparable bond that brings you comfort, joy, and companionship. Perhaps, your dog has even picked up on your needs over the years and lends a helping paw when you need it (e.g., your dog senses when you are lightheaded and braces their body against yours to provide some stabilization). This companionship has had you considering the benefits of a service dog for some time, but you have always been concerned about costs or adding another canine to your
  9. by Chelsea Goldstein, Dysautonomia Information Network If you've had to adjust to life with chronic illness, you've probably experienced stressors that people without health concerns don't even think about. Day-to-day tasks can seem insurmountable when you tackle them with pain, extreme fatigue, brain fog, and even syncope. Medical appointments can be stressful, especially if doctors don't have strong understandings of your condition(s). It can be exhausting to feel like you have to explain your condition(s) to everyone around you. Even then, they still may not understand (1). This
  10. by Chelsea Goldstein, Dysautonomia Information Network Anxiety, similar to dysautonomia, is clouded by stigma and misunderstanding. You may have encountered the female hysteria stereotype at some point, and you may have even experienced judgement due to this label or others like it. Unfortunately, many people with misunderstood health conditions, such as dysautonomia, are hesitant to openly discuss anxiety because our symptoms are so often dismissed as "all in our head" and we are told we can solve them if we "just relax". Even more, many medical professionals don't understand how t
  11. DINET collects relevant research related to dysautonomia disorders and related conditions & illnesses. This is in no way meant to be a complete list of all research currently underway or the results of research currently made public. But it is a summary of key research studies that we hope are relevant and potentially important to our members' ongoing treatment and prognosis. Please check back as this page is regularly updated. Updated Info: Dr. Raj and associate, Dr. Miller's updated article about the pharmacotherapy for POTS. Pub. May 2018 in Science Direct, Autonomic Neurosci
  12. Dysautonomia commonly develops as a complication of a primary illness or is seen in patients with multiple disorders. These scenarios add a layer of complexity to a patient’s diagnostic journey, as well as their treatment plan. When one of those illnesses is an eating disorder, the complexities can be significantly magnified. Eating disorders, which include bulimia nervosa and anorexia nervosa, are defined in the Diagnostic and Statistical Manual of Mental Disorders (DSM) as follows: "Feeding and eating disorders are characterized by a persistent disturbance of eating or eating-relate
  13. I thought I was there, that I had reached the calm point where knowledge and experience were making it easier to handle the endless symptoms that go on 24/7/365. Life goes on, and I had to learn to manage it; water, electrolytes, healthy food, exercise, medicine, self-education, and introspection all combined to help get me to where I am physically and emotionally stronger though attacks. My EP, with a wink in his eye, calls them my neuro-cardio-vaso-vagaly-things. We both then smile because I don’t collapse so much anymore. I began telling myself that I was content. That an ideology of ‘
  14. Born in the 1860's and married at 16, my great grandmother had a challenging rural life mothering a dozen children. Yet by all accounts, despite many hardships and heartbreaks, she laughed a great deal and lived contentedly into her 90's. What was her secret to happiness? She had a motto that she kept written down and neatly folded inside a mahogany desk drawer. How do I know about her writing down that motto? Teenage me found it many years after her death as I searched for a pen. The folded note lay long forgotten inside the drawer of a desk she had left to one of her daughters. Upon he
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