• Diagnosing and Managing Dysautonomia With Blood Pressure Monitoring

     This post on blood pressure monitoring is sponsored by Aeroflow Healthcare in collaboration with the Chronic Illness Bloggers network. All opinions remain my own and were not influenced by the sponsor. Strapped to a table, the nurses assistant pressed a button to initiate the incline. She noted my legs, tinged pink from blood pooling as I stood upright in mid-air. It contrasted with the blue hues of my feet. My head was spinning. I tried to initiate conversation in attempts to obscure the dreadfulness I was feeling during my Tilt Table Test. They said I had Dysautonomia. What is Dysautonomia? Dysautonomia is an umbrella term for a group of conditions that describes the malfunctioning of the autonomic nervous system. The autonomic nervous system controls the bodily processes that occur “automatically” or without conscious awareness they are happening. Postural Orthostatic Tachycardia Syndrome (POTS) The most common form of Dysautonomia is POTS, which is characterized by orthostatic intolerance. Upon standing, the blood vessels fail to pump blood back up to the brain. The lack of blood typically induces a drop in blood pressure of that least 20/10 mmHg within 3 minutes of standing. Afterward, the heart rate increases to compensate. That is why many POTS…

  • STOP POTS: Summer Tips For Postural Orthostatic Tachycardia Syndrome

    With the warmer season quickly approaching, I am prepared for the South Carolina heat to induce a flare, or two, or maybe three. Heat has a way of dilating the blood vessels that make it increasingly more challenging to manage the condition, Dysautonomia, especially the cardiac symptoms attributed to POTS. If you have recently been diagnosed with POTS, your head is probably spinning—quite literally! The term Postural Orthostatic Tachycardia Syndrome (POTS) is quite the mouthful. The impending summer got me thinking about what I wish I had known upon my initial diagnosis of Dysautonomia/POTS. Pace Yourself, Plan, and Learn Your Limits From one POTSie to another, it is imperative with this condition to not overdo yourself and to conserve energy. Unnecessary setbacks are not worth it! Avoid Stress With all forms of Dysautonomia, the autonomic nervous system that controls the body’s fight or flight response is on the fritz. Stress is a significant trigger of such a response. Mobility Aids Are Helpful Wheelchairs, walkers, and mobility scooters reduce fatigue and prevent injury that can occur from fainting. Resorting to a wheelchair does not have to be all of the time. Relying on mobility aids 100% of the time strictly for the…

  • Fibromyalgia, Irritable Bowel Syndrome, and Chronic Fatigue Are Not Real?

    Do you have a chronic illness?  Did it take years to receive a diagnosis? Did it take even longer to receive the correct diagnosis?  If you answered “yes” to the first question, surely the same response applies to the questions proceeding it. Again, if you said “yes” to any of the above, it is likely you saw a medical professional. You probably underwent various inconclusive tests, results tossed aside in an apathetic manner. If you are lucky, the doctor may care enough to nonchalantly pawn symptoms off with a vague term, such as Fibromyalgia (Fibro),  Irritable Bowel Syndrome (IBS), or Chronic Fatigue Syndrome (CFS) without further studies. These terms conceal copious controversy.   What is Fibromyalgia? “Fibromyalgia is a syndrome and common disorder characterized by widespread pain, diffuse tenderness, and a number of other symptoms. Although Fibromyalgia is often considered an arthritis-related condition, it is not arthritis because it does not cause inflammation or damage to the joints, muscles, and other tissues. The causes of Fibromyalgia are unknown.” [ x ] In summary, Fibromyalgia causes widespread, chronic pain. The cause is UNKNOWN.   What is Chronic Fatigue Syndrome? “Chronic Fatigue Syndrome is a condition where you have long term, disabling tiredness (fatigue) and…

  • This Is What Ehlers Danlos Syndrome Is Like

    May is Ehlers Danlos awareness month. In honor of awareness month, I created a video [shown at end of post] depicting a day in the life of someone with Ehlers Danlos Syndrome and its comorbid conditions. The extent of symptoms varies patient by patient. This is how I used to present prior to my secondary Mast Cell Disease becoming severe. I tried to add a humorous twist to the video. Enjoy! You awake in the morning, rubbing the sleep out of your eyes. Last night was spent tossing and turning, so you are not well rested. You wonder why you expected to feel otherwise when you have Ehlers Danlos Syndrome. In attempts to make it out of bed, you roll over, but your actions are interrupted when your hip cries a startling “pop.” It is another dislocation. A searing pain courses through your skeleton, while you contort your body to adjust the joint back into position. Since the joint is back in place, the injury requires bracing. You eye the brace from the corner of the room. You are dreading the arduous journey, as you have not yet managed to make it out of bed. Hobbling, you grab the brace and…

  • Intravenous Hydration For POTS/Dysautonomia

    Dysautonomia is a term defining conditions impacting the autonomic nervous system. The autonomic nervous system controls every bodily function occurring “automatically.” A subset of Dysautonomia is Postural Orthostatic Tachycardia Syndrome (POTS), effecting a body’s ability to regulate upon postural positional changes. Because of POTS, blood is unable to reach the brain when transitioning from laying to sitting or sitting to standing. POTS primarily manifests with a multitude of cardiac symptoms: Tachycardia Bradycardia High Blood Pressure Low Blood Pressure Presyncope (Blackouts) Syncope (Fainting) Dizziness Fatigue Blood Pooling Lightheadedness Headaches Shortness of Breath The majority of POTS patients suffer from a high heart rate and low blood pressure. Since it is a dysfunction of the autonomic nervous system, symptoms can range from one extreme to another, similar to constantly flipping a hypothetical on/off switch in the body. Sodium and fluid regulate the unstable pulse and blood pressure. To combat the debilitating symptoms, it is recommended that a POTS patient consumes 3 to 10 grams of salt and over 2 liters of fluid daily. [ x ] [ x ] That intake is difficult. In severe cases, the amounts needed to control symptoms are impossible without the support of IV saline therapy through a central line, which…

  • Love Is What Warms Our Hearts

    A couple of weeks ago I was looking through old photo albums. I happened across an old Valentine’s letter my biological father wrote to my mother prior to his death. Part of it read, “who needs diamonds and flowers when love is what warms our hearts…and what makes us happy when times are hard.” It really got me pondering the concept of death, as well as what we leave behind on earth afterwards. Through our struggles, we acquire a unique meaning of life. We leave behind an impression of that meaning long after we are gone. The words we write are a manner in which this is done. Brief sentences written in cards or lengthy social media posts seem trivial in the moment. However, they  are an accumulation of lessons learned. Even if unperceived at the time, they are our voice, how we want to be remembered. They communicate a lasting significance and have the ability to influence people you never physically encountered. I never knew my dad, but his words still made an impact. I am thankful for my dad and the words he left. As horrible (and nightmarish) as illness is, I am also grateful it has given…

  • Symptoms That Led To A Mast Cell Activation Diagnosis

    In a previous post titled, How I received My Mast Cell Activation Diagnosis, I mentioned I would discuss the symptoms that prompted the testing! Ironically, evidence of a Mast Cell Disease was found rather early on in my illness. However, it was dismissed because I did not present with obviously allergic symptoms. A common myth is that a patient MUST present with allergy symptoms or anaphylaxis in order to have a Mast Cell Disease, which is entirely wrong. Certain symptoms of my illness were present at birth. Most did not begin impacting my life around the age of 11-12 though. For years, my symptoms seemed strictly autonomic and gastrointestinal-related. I did not receive my first EpiPen until I was 17. Every patient can present differently. Some progress. Some never do. The following symptoms are what I experienced prior to progressing to my current severity, before anaphylaxis and more severe organ involvement. They are what lead to my eventual Mast Cell Activation Syndrome diagnosis. Gastrointestinal Nausea Reflux Heartburn Diarrhea alternating with constipation Abdominal Pain (ache, burning, razor blade sensation in intestines) Unexplained Weight Loss These symptoms, especially the reflux, were the main reason I sought medical treatment. They increasingly got worse over the…

  • 31 POTS-itives of Dysautonomia

    Since October is Dysautonomia awareness month, there are loads of posts circulating on the subject. Generally, awareness posts feature scientific explanations, statistics, useful tips, or the negative truths that emerge from living with this condition (…and trust me, there are tons). Years prior, I did the same. For this occasion though, I will deviate from the usual.It is easy to fall victim to Dysautonomia’s vices of doom and gloom, but there are positives from the condition. A friend and I (shout out to Aleigh) compiled a list including 31 positives stemming from the condition. It contains one positive for each day in the month of October. Hopefully, it provides a few laughs! Dysautonomia is a medical condition resulting in the impairment of the autonomic nervous system. The autonomic nervous system controls bodily functions meant to occur “automatically.” There are multiple types of Dysautonomia, the most common called Postural Orthostatic Tachycardia Syndrome (POTS). In simpler terms, the body of a Dysautonomia patient is whacked! You can access additional information through Dysautonomia International and in my previous posts titled STOP POTS and Rarely Diagnosed: Dysautonomia on Rare Disease Day 2016. 31 Positives of Dysautonomia 1.) Forming lifelong bonds with others sharing the condition. 2.) Learning assertiveness. It is…

  • Professional Grandma: Osteoporosis + Health Update

    Well, I might as well sign up for Life Alert and trade my iPhone in for a Jitterbug. I always knew my hobbies (aka knitting) are similar to a Grandma. Apparently, my body is now following suit! Earlier this week I had a bone scan. Between mast cells infiltrating GI tract impacting absorption, mast cells in bone marrow, steroid use in the last year, and Ehlers Danlos Syndrome, I have numerous factors leaving me prone to bone complications. The scan revealed that my bones have sustained damage from my disease. And yesterday I was made aware that I am not yet 20 years old and have an osteoporosis diagnosis. My weight remains critical at 81 lbs. I run a full can of Neocate and/or Elecare Jr formula via J tube daily. It is baffling watching the numbers on the scale decrease, despite no increase in nutritional intake. Intermittent pancreatitis and erratic blood glucose levels are an issue also. The glucose regulation was an ongoing symptom years ago. However, it resolved itself during my 10-month remission-ish period, only returning if I ingested a trigger/food I am reactive to. When this was previously investigated, my labs appeared like I am a Type…

  • Rarely Diagnosed: Dysautonomia on Rare Disease Day 2016

    For Rare Disease Day, I had received the opportunity to guest post on the blog, mamasick, about my experiences with Dysautonomia at a young age. More specifically, the interview touches on its impacts on schooling and social life. Below is the full version of the post. Did you know that 30 million people in the United States are enduring life with a rare disease? Or did you know that 95% of rare diseases lack a single FDA approved treatment? February 29th is known as Rare Disease Day – a day to raise awareness of the complex illnesses that receive nothing but a blank stare when mentioned to the general population. Quite the list of diagnoses has been claimed over the years. Some of them are rare. Others are just rarely diagnosed. That is why it has taken nearly 7 years to obtain accurate diagnoses that explain my myriad of health problems. Let’s face it, there is nothing glamorous watching the world go black upon standing, frantically panting with a pulse near 200 while losing consciousness from a body failing to regulate blood pressure. That is a significant part of Dysautonomia, or Postural Orthostatic Tachycardia Syndrome (POTS). Dysautonomia is the term of an illness that describes the “malfunction of the autonomic nervous system.” The autonomic nervous system…