Navigating Life with POTS: My Dystautonomia Experience

Living with POTS (Dysautonomia) is new for me. Living with Migraine is something I’ve 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’s been on my mind. Living with a chronic illness is complex because so much of it crosses over.

My Migraine Life started way back when I was 5 years old. Over the last decade, I have dedicated my life to being a migraine advocate and educating myself about my disease. 

The pieces just weren’t coming together. For some reason, I felt like my migraine treatment was effective yet I was still in a chronic state of riding these intense symptoms that I couldn’t shake and came in flairs.

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.

Key Features of POTS

Postural Orthostatic Tachycardia Syndrome (POTS) 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, and its primary characteristic is an abnormal increase in heart rate when transitioning from lying down to standing.

Symptoms of POTS/Dysautonomia may Include:

My Diagnosis of POTS

My diagnosis of POTS (postural orthostatic tachycardia syndrome /dysautonomia) was a long time coming. Chronic migraine allowed me to ignore other symptoms because my migraine symptoms are so diverse and range in intensity. 

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’t something I thought to discuss with my headache specialist. It didn’t seem migraine-related and didn’t 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.

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’t consider blood pressure or heart rate to be something to discuss with my doctor. 

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, when I went from lying to standing, my symptoms spiked.

How Do I Know If I Have POTS?

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’s comorbidity, like fibromyalgia or other conditions that often occur. It was something I never investigated.

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’t sure how to feel. I have had many years of trying to figure out what else is going on besides migraine. Like migraine isn’t enough.

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 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’s not that. But I escaped a painful test to discover this so that was a relief.

Fast forward to 2023 and I’m 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.

What Happens During a Tilt Table Test?

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’s what to expect during the experience:

• Preparation:
  • I was asked to lie down on a special table with straps to secure me.
  • Electrodes and sensors were attached to my chest to monitor my heart rate, and a cuff was used to measure blood pressure.
• Baseline Monitoring (Laying Flat):
  • The test began with me lying flat. This allows medical staff to establish baseline heart rate and blood pressure readings.
  • This phase lasted several minutes as they ensured stability.
• Tilt Phase:
  • The table is tilted upright, typically to a 60–70° angle.
  • During this phase, my body was positioned to mimic standing without muscle engagement, which can stress the autonomic nervous system.
  • I experienced:
    • Dizziness
    • Sweating (e.g., beads forming on your forehead)
    • Increased heart rate
  • These symptoms, along with monitored data, helped clinicians identify issues.
• Breathing Exercises:
  • I was instructed to perform breathing techniques, such as:
    • Balloon blowing: Inflate a balloon or simulate blowing for 20 seconds to assess autonomic responses.
    • Blow out and hold: Exhale and maintain the hold while following prompts from the medical team.
• Response Observation:
  • The medical team closely observed my body’s reactions to the tilt position, noting any changes or symptoms.
  • If symptoms become severe (e.g., fainting), the table will quickly return to a horizontal position.
• Post-Test Monitoring:
  • After the tilt phase, I was returned to a lying flat position for recovery.
  • The medical team continues monitoring your vitals until they normalize.

How I felt during the Tilt Table test

• Physical Sensations: I felt discomfort from prolonged standing-like positioning, dizziness, and sweating. These responses are part of the test and were monitored closely so I felt safe.
• Mental and Emotional: The test can feel unusual or stressful due to the controlled symptoms, but medical staff is present to ensure safety. It was, by far, not the worst test I’ve done. But it wasn’t a walk in the park.

What I Did After My POTS Diagnosis?

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’d have to wait months to get an appointment, and I cried more. I immediately found a specialist and got on a waiting list…an 8-month-long waiting list.

Next, I told my husband, and the anger set in that this was my reality. Once that was over, I disclosed my diagnosis of POTS to my migraine community and friends. 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.

POTS/Dysautonomia Treatments

Talking about migraine comes easily for me, but labeling myself with POTS felt scary and new. 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.

Build a Care Team

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.

Monitor Symptoms

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.

Join Support Networks

I love to connect with others who understand what I’m going through. I do this with my migraine disease and continue to do it with POTS. Stand Up To POTS is my favorite. There are many support groups, social media health leaders, and advocacy groups to learn from.

Please be sure to follow My Migraine Life on social

Lifestyle Changes with Dysautonomia

Increasing Water Intake

I thought I drank a lot to avoid migraine and dehydration headaches, 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’t. I feel like I carry water bottles with me everywhere, but I need them.

Increasing Salt Intake

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’s not. While some people may love salt, I’ve never been huge on it but now put salt on everything. I really love Himalayan salt for other reasons but now have implemented it into my diet too.

Exercise

Looking back, exercise intolerance was a POTS symptom that I didn’t 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 for me.

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.

Compression

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’m not someone who loves to wear tight clothes but I love the tight squeeze and how it makes me feel so I’ve made some swaps in my wardrobe. Please check with your doctor before wearing compression clothing as it may not be right for you.

Sleep

When sleeping, I elevate the head of my bed to reduce blood pooling overnight. Apparently, it is a way to “trick” our bodies into thinking it’s not fully horizontal. I use a wedge pillow and would love an adjustable bed (if they weren’t so pricey!)

Reducing Large Meals

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’m understanding that large carby meals trigger POTS.  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.

Avoiding Alcohol

Because of migraine, I don’t drink alcohol all that often. So this is an easy one for me.

Conclusion

Yes, it took me years to get a diagnosis of POTS.

Yes, it took me 8 months to see a specialist. I have been seeing a functional medicine doctor since then.

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’t know what to do. But I continued to speak with my doctor and put the pieces of the puzzle together. Although I haven’t 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.

 

Thanks for being a part of my journey!