Invisible Illness Awareness Week 2015

Dysautonomia and POTS – Invisible Illness Awareness Week

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Dysautonomia refers to a number of conditions that describe the breakdown or failure of the autonomic nervous system (ANS). The ANS regulates unconscious or involuntary body functions, including the cardiovascular system, metabolic system and more. To diagnose Dysautonomia, a tilt-table test is used to evaluate how the patient regulates blood pressure regarding stressful events.

Some of the most common Dysautonomia symptoms include blood pressure changes, fast heart rates, anxiety, dizziness, lightheadedness, stomach pain, mood swings, migraines and insomnia. For some people with Dysautonomia, getting out of bed can even be a struggle. For others, travel may be limited or nonexistent. These symptoms can be mild or severe and may even seem “invisible” to someone who doesn’t know what to look for. Patients with Dysautonomia may have symptoms that come and go, some caused or enhanced by stress.

Over a million Americans suffer from a primary autonomic system disorder. One of the most common conditions is Postural Orthostatic Tachycardia Syndrome (POTS). Others include Neurocardiogenic Syncope (NCS), Orthostatic Intolerance (OI), Vasovagal Syncope, Neurally Mediated Hypotension (NMH), Multiple Systems Atrophy (MSA), Post-Viral Dysautonomia, Pure Autonomic Failure (PAF), Familial Dysautonomia (FD), Non-Familial Dysautonomia and Generalized Dysautonomia.

With so many people affected by this condition, you would think that there would be tons of information on it. However, there is not. After researching POTS and Dysautonomia resources, some of the most helpful information was found on personal blogs. The biggest thing to take away here is that your voice matters. With limited information and scientific research, personal experiences and advice are sometimes the best things to rely on. That is why Invisible Illness Awareness Week is so important. It builds and strengthens a community of people who are fighting to be heard.

As of now, there is no cure for Dysautonomia. To relieve symptoms, many patients turn to physical therapy, drinking lots of fluids, increasing sodium intake as well as limiting the amount of caffeine and sugary drinks that consumed. You can check with your doctor about getting medication to relieve more severe symptoms and determine what the best option would be for you. There is also a new treatment called TVAM, or Transvascular Autonomic Modulation, to improve the autonomic function in patients.

Wearing compression socks can also help alleviate symptoms to improve circulation in the body which helps to decrease lightheadedness, dizziness and normalize the heart rate and blood pressure. Compression socks also help to reduce the amount of pooling blood, swelling and fatigue and to prevent blood clots and varicose veins. Compression socks are also recommended for exercise and traveling, especially if you’re flying. If you have Dysautonomia and have a hard time traveling, wearing compression socks could be your secret weapon to getting back on the road or in the gym. Compression garments are available in knee high, thigh high and waist high options in a variety of compression levels, colors and sizes.

The most important thing to remember is that you are not alone. There are tons of people who are suffering from an invisible illness too. With the help of bloggers, support groups and organizations, together we can bring awareness to these conditions. Share your story and join the #invisiblefight today.

Invisible Illness Awareness Week is extremely important to share the unheard voices of so many people who are suffering. Many people struggle with undiagnosed or rare conditions that many medical practitioners are unaware of. The good news is, you can help make a difference. Starting September 28 – October 4th, share your stories or those of loved ones to promote awareness about rare conditions. You can also spread the word by participating on social media by including #InvisibleIllness in your posts. What do you fight for?

Additional Resources:

Invisible Illness Awareness Week

October is Dysautonomia Awareness Month

Lauren Stiles – Dysautonomia 101

Best POTS and Dysautonomia Blogs

Compression Socks

Dysautonomia Symptoms

Lifestyle Adaptions for POTS