Living with POTS (Dysautonomia) is new for me. Living with Migraine is something I\u2019ve been living with forever. The thought that I live with something other than migraine has been a topic of discovery for many years. I know comorbidities are common with migraine so it\u2019s been on my mind. Living with a chronic illness is complex because so much of it crosses over.<\/span><\/p>\n My Migraine Life<\/a> started way back when I was 5 years old. Over the last decade, I have dedicated my life to being a migraine advocate<\/a> and educating myself about my disease.\u00a0<\/span><\/p>\n The pieces just weren\u2019t coming together. For some reason, I felt like my migraine treatment<\/a> was effective yet I was still in a chronic state of riding these intense symptoms that I couldn\u2019t shake and came in flairs.<\/span><\/p>\n This post is for informational purposes only, and should not be taken as medical advice in any way. Please speak with your doctor if you suspect you have dysautonomia and for treatment options. I am sharing my journey and everyone is different.<\/span><\/i><\/p>\n Postural Orthostatic Tachycardia Syndrome (POTS)<\/strong> is a condition that affects the autonomic nervous system, which controls involuntary functions like heart rate, blood pressure, and digestion. POTS is a form of dysautonomia<\/strong>, and its primary characteristic is an abnormal increase in heart rate when transitioning from lying down to standing.<\/p>\n Symptoms of POTS\/Dysautonomia may Include:<\/strong><\/p>\n Dysautonomia Triggers:<\/strong><\/p>\n The exact cause isn\u2019t fully understood, but potential contributors include:<\/p>\n Who Does It Affect?<\/strong><\/p>\n There\u2019s currently no cure for POTS, but many treatments and lifestyle changes can significantly improve quality of life.<\/p>\n<\/div>\n My diagnosis of <\/span>POTS<\/span> (postural orthostatic tachycardia syndrome<\/a> \/dysautonomia) was a long time coming. Chronic migraine allowed me to ignore other symptoms because my migraine symptoms<\/a> are so diverse and range in intensity.\u00a0<\/span><\/p>\n One symptom I ignored was a burning in my leg which turned out to be blood pooling or neuropathic pain. I had this burning in my leg that I felt at night that went on for months, maybe even longer. It wasn\u2019t something I thought to discuss with my headache specialist. It didn\u2019t seem migraine-related and didn\u2019t weigh heavy on my mind but it was something I mentioned to my husband often questioning what it could be. Looking back, this was a symptom of Neuropathic POTS and was a puzzle piece I put together in hindsight.<\/span><\/p>\n A symptom I was talking about but possibly incorrectly was my anxiety. I was passing off my racing heart, clenching chest, and breathlessness on anxiety. My anxiety (or what I felt was anxiety) has been increasing in the last few years. Between living with chronic migraine and the stresses of life, my anxiety was through the roof and I didn\u2019t consider blood pressure or heart rate to be something to discuss with my doctor.\u00a0<\/span><\/p>\n It was when I mentioned my head pain spiking when I was lying on the couch and walking upstairs to go to bed that my doctor mentioned POTS. Additionally, I was waking up with a migraine attack (or many symptoms of it) every morning. Even with a sleep schedule,<\/a> when I went from lying to standing, my symptoms spiked.<\/span><\/p>\n I had heard of POTS or dysautonomia at this point but was curious to have something to investigate further. I follow other migraine advocates who also speak about POTS and it\u2019s comorbidity, like fibromyalgia or other conditions that often occur. It was something I never investigated.<\/span><\/p>\n My headache specialist ordered a tilt test for me and a few weeks later I was standing there waiting to trigger my symptoms. I wasn\u2019t sure how to feel. I have had many years of trying to figure out what else is going on besides migraine. Like migraine isn\u2019t enough.<\/span><\/p>\n I spent one summer between school and college and they were insistent that I had anemia because no one could figure out my dizziness. In 2018, I went to the Miles for Migraine Cincinnati<\/a> race and met an amazing doctor who specializes in high\/low-pressure headaches. When my doctor suggested it, I drove 4 hours to see this doctor to hear that I have both high and low-pressure headaches and it\u2019s not that. But I escaped a painful test to discover this so that was a relief.<\/span><\/p>\n Fast forward to 2023 and I\u2019m still complaining of a spike of symptoms from lying to standing and vice versa. The postural discussions are what led my doctor to think about dysautonomia, specifically POTS.<\/span><\/p>\n A tilt table test is often used to diagnose conditions that affect blood pressure and heart rate regulation, such as syncope (fainting), postural orthostatic tachycardia syndrome (POTS), or autonomic dysfunction. Here\u2019s what to expect during the experience:<\/p>\n The tilt table test showed that my heart rate increased to the point that would usually suggest a dysautonomia POTS diagnosis. Seeing that diagnosis in my chart made my heart sink. Being handed a second chronic illness diagnosis was a shock. I felt sad and cried. Then, I called my doctor for an appointment and was told I\u2019d have to wait months to get an appointment, and I cried more. I immediately found a specialist and got on a waiting list\u2026an 8-month-long waiting list.<\/span><\/p>\n Next, I told my husband, and the anger set in that this was my reality. Once that was over, I disclosed my diagnosis<\/a> of POTS to my migraine community and friends. <\/span>Disclosure was something very new to me and quite frankly, so was a diagnosis. Being I have lived with migraine my entire life, I can remember a diagnosis but it was never a surprise that I was living with migraine and a lifetime of disclosure.<\/span><\/p>\n Talking about migraine comes easily for me, but labeling myself with POTS felt scary and new. <\/span>The reaction I received was warm and opened the doors to my discovery of POTS\/ Dysautonomia. I started following blogs and organizations that are patient-led and learned so much. I undertook diet and lifestyle changes, eventually speaking with my doctor about medications. All advice should be run by a doctor and any advice or treatments I have done are my own experiences.<\/span><\/p>\n Once I was diagnosed, I told my primary care physician who ordered me additional tests from my typical bloodwork to answer some more questions. I spoke with my headache specialist and called a POTS specialist who is a cardiologist. Adding a physical therapist may be another person I add if needed. I already had a team of trainers who I worked out with and altered those exercises.<\/p>\n I keep a journal to track symptoms, triggers, and what helps. I often use my watch to monitor my heart rate or another device for blood pressure. Just like with migraine, monitoring and being aware of how my body is reacting helps the success of my treatment. And just like with chronic migraine, I try not to obsess about it. I have always found migraine diaries to be a bit defeating, seeing myself so sick. But with a new diagnosis, learning from journaling was a good way to start.<\/p>\n I love to connect with others who understand what I\u2019m going through. I do this with my migraine disease and continue to do it with POTS. Stand Up To POTS<\/a> is my favorite. There are many support groups, social media health leaders, and advocacy groups to learn from.<\/p>\n Please be sure to follow My Migraine Life on social<\/p>\n I thought I drank a lot to avoid migraine and dehydration headaches,<\/a> but Dysautonomia is more. The most common treatment for POTS includes 2-3 liters per day. This seems impossible to do every day, but I try! I notice increased dizziness if I don\u2019t. I feel like I carry water bottles with me everywhere, but I need them.<\/p>\n Because of my form of POTS, I was advised to increase my salt. This was and remains to be something hard for me. Typically we are taught that salt is bad, and it\u2019s not. While some people may love salt, I\u2019ve never been huge on it but now put salt on everything. I really love Himalayan salt f<\/a>or other reasons but now have implemented it into my diet too.<\/p>\n Looking back, exercise intolerance was a POTS symptom that I didn\u2019t understand. Even living with chronic migraine, I have always kept my body active. Yes, there are days that I lay in my cold dark room, but most days, I try to have some type of movement in my schedule. But prior to my diagnosis, I was having a major issue with gyms and how triggering they are<\/a> for me.<\/p>\n POTS became an obstacle for me when it came to exercising and understanding this allowed me to make accommodations. I got a pedal exerciser to use at my desk. This keeps my legs active while not needing to stand. On the days I head to the gym, I ensure I am hydrated, wear compressions, and have a protein breakfast.<\/p>\n Compression socks were prescribed to me but are really uncomfortable. However, I have found that compression socks, leggings, and tops really help my symptoms. I\u2019m not someone who loves to wear tight clothes but I love the tight squeeze and how it makes me feel so I\u2019ve made some swaps in my wardrobe. Please check with your doctor before wearing compression clothing as it may not be right for you.<\/p>\n When sleeping, I elevate the head of my bed to reduce blood pooling overnight. Apparently, it is a way to \u201ctrick\u201d our bodies into thinking it\u2019s not fully horizontal. I use a wedge pillow and would love an adjustable bed (if they weren\u2019t so pricey!)<\/p>\n Reducing large meals was an eye-opening suggestion for me. For years, after a big meal, I have felt miserable. I attributed this to my migraine food triggers and intolerances attacking my body. But now I\u2019m understanding that large carby meals trigger POTS.\u00a0 I have learned that when I eat a meal, blood is diverted to the digestive tract and away from maintaining blood pressure and heart rate This has resulted in me eating smaller meals and less carbs.<\/p>\n Because of migraine, I don\u2019t drink alcohol<\/a> all that often. So this is an easy one for me.<\/p>\n Yes, it took me years to get a diagnosis of POTS.<\/p>\n Yes, it took me 8 months to see a specialist. I have been seeing a functional medicine doctor<\/a> since then.<\/p>\n But most of all, yes, it was worth looking into and not giving up. When my gut told me that I was fighting more than migraine I didn\u2019t know what to do. But I continued to speak with my doctor and put the pieces of the puzzle together. Although I haven\u2019t found a cure for migraine or POTS, the best I can do is understand it. Understanding my diagnosis and how my body works has been and will continue to be a journey.<\/p>\n \u00a0<\/p>\n Thanks for being a part of my journey!<\/p>\n<\/p><\/div>\nKey Features of POTS<\/h2>\n
![\"What](\"https:\/\/www.mymigrainelife.net\/wp-content\/uploads\/2025\/01\/What-is-POTS-300x300.png\"\/)
![\"What](\"https:\/\/www.mymigrainelife.net\/wp-content\/uploads\/2025\/01\/What-is-POTS-300x300.png\")
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![\"symptoms](\"https:\/\/www.mymigrainelife.net\/wp-content\/uploads\/2025\/01\/symptoms-300x300.png\"\/)
![\"symptoms](\"https:\/\/www.mymigrainelife.net\/wp-content\/uploads\/2025\/01\/symptoms-300x300.png\")
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What Causes POTS?<\/h2>\n
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Is There a Cure for POTS?<\/h3>\n
My Diagnosis of POTS<\/h2>\n
![\"Diagnosis](\"https:\/\/www.mymigrainelife.net\/wp-content\/uploads\/2025\/01\/Diagnosis-300x300.png\"\/)
![\"Diagnosis](\"https:\/\/www.mymigrainelife.net\/wp-content\/uploads\/2025\/01\/Diagnosis-300x300.png\")
<\/p>\nHow Do I Know If I Have POTS?<\/h2>\n
What Happens During a Tilt Table Test?<\/h2>\n
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How I felt during the Tilt Table test<\/h3>\n
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What I Did After My POTS Diagnosis?<\/h2>\n
POTS\/Dysautonomia Treatments<\/h2>\n
Build a Care Team<\/h3>\n
Monitor Symptoms<\/h3>\n
Join Support Networks<\/h3>\n
Lifestyle Changes with Dysautonomia<\/h2>\n
![\"Living](\"https:\/\/www.mymigrainelife.net\/wp-content\/uploads\/2025\/01\/Living-with-POTS-1-300x300.png\"\/)
![\"Living](\"https:\/\/www.mymigrainelife.net\/wp-content\/uploads\/2025\/01\/Living-with-POTS-1-300x300.png\")
<\/p>\nIncreasing Water Intake<\/h3>\n
Increasing Salt Intake<\/h3>\n
Exercise<\/h3>\n
Compression<\/h3>\n
Sleep<\/h3>\n
Reducing Large Meals<\/h3>\n
Avoiding Alcohol<\/h3>\n
Conclusion<\/h2>\n