Looking back over everything, it all makes sense now. I have been stuck on this never ending roller-coaster for the past 6 years and I have been pushing hard to find a way off of it. I have been to 16 doctors this year alone and I have finally found the answer. I have postural orthostatic tachycardia syndrome (POTS), which means I won’t be able to get off this roller-coaster.
POTS is an autonomic nervous system dysfunction which means my body has trouble regulating the automatic things that a normal body does on its own. This includes functions from heart rate to blood pressure to body temperature. It is a specific form of dysautonomia and my body is constantly working to try and regulate itself.
I have struggled for over 6 years searching for answers about why I feel the way I do. I started getting migraines after I had my middle daughter, 6 years ago, and I couldn’t work out and do the things I really enjoyed doing, like volleyball. I slowly started my de-conditioning process and lost many things that I had loved for so many years.
Fast forward to three years later when I was pregnant with my third daughter. I blacked out in the kitchen while I was feeding my daughters and fell flat on my back but was able to quickly come to. This was the start of my issues with lightheadedness and pre-fainting episodes. I was told by doctors that my brain wasn’t getting enough oxygen. It was left at that and I didn’t push them for answers any more.
One year later I had three small kids at home and I contracted the Epstein-Barr virus, which totally knocked me out. I spent four months completely miserable and I could barely keep up with my family. I started having heart palpitations and shortness of breath. I started back up on the hamster wheel of doctors and no one could find a reason to why I felt so incredibly horrible. During these 4 months I could barely keep up with my three girls and husband. I felt like I was failing my family on so many levels.
One long year later, I was in the airport with my parents. My heart was beating out of my chest as we were walking through the airport and I could not catch my breath. I was trying so hard to keep up with my parents (who are over 60) and fell way behind. I couldn’t keep up as we headed for the gate. I knew then something wasn’t right. Healthy shouldn’t feel like this.
I started up again on the hamster wheel of doctoring, seeing over 16 doctors and specialists in one year’s time. Around this time I developed pulsatile tinnitus in my left year. I hear a fetal doppler in my left ear 24/7. I deal with gripping chest pain across my left chest cavity and I have brain fog. I always told my husband I feel like I am having low blood sugar, but that has never proved to be the case. My hands start to tremor and my brain goes completely blank. My world suddenly stops and I can see everything go past me but I can’t put anything together to make sense when this happens. I was having pre-syncope (pre-fainting) episodes daily. Any time I bend over or stand up from a sitting position, my eye sight starts to go black and I can feel myself losing it. Then, right before its too late, everything comes back into focus. I deal with headaches coming and going between my good and bad days. As this is part of a roller coaster, some days are worse with my symptoms than others.
I sat in my doctor’s office and told my doctor I needed help. I couldn’t keep going on like this. I could not keep up with my family. I felt like I was continually falling short. I shared with him I had been told by so many doctors I was just sensitive. He said, “Do you think they are trying to tell you that are anxious?” I knew that wasn’t the answer. This year alone I have been told “I’m like a fainting goat, I’m just too sensitive, I’m dealing with anxiety, I can just feel my heart because I’m slender.” The worst was when an ER doctor told me that it was psychological and I have made it all up in my head. This was my lowest point in my journey to discovering “the why.” I had never felt more defeated than in that moment.
Because of my headaches and migraines, my doctor ordered an MRI of my brain. They discovered I had three brain lesions. I was told it could possibly be MS, and was left to sit on that for over a month until I finally was able to see a neurologist. That is way too long for a person to be left to their thoughts with no answers. I battled with my thoughts and continued to experience my symptoms during those days as I was fighting my fatigue.
After 7 months of searching locally, I ended up spending 5 days in and out of the ER after waking up in the middle of the night with loss of mobility in my legs. I was left temporarily paralyzed from the waist down after I was weaned off a medicine one of the neurologists had put me on for my “migraines.” It was at this point that I was finally able to receive the referral my insurance needed to go to Mayo Clinic. Those days in and out of the ER were my lowest of lowest days.
I spent three days at the Autonomic Clinic at Mayo. I underwent many tests from a thermal regulatory sweat test to a tilt table test and came out knowing the why! I have never felt more relief than when my symptoms finally received a diagnosis! I felt validated in that moment. I’m not just sensitive or anxious. I’m not making it up in my head. There is a medical reason as to why I feel the way I do. I left knowing that I have hyperadrenergic POTS with chronic deconditioning and chronic anhidrosis. I found out 89% of my body doesn’t sweat due to autonomic neuropathy. I left knowing I had a chronic illness, but I felt more at peace than I had in a long time.
It took awhile for the news to fully set in. I have gone through the stages of grief not wanting to fully believe it. I still struggle with that internal voice of denial. This is what all people feel like right? But when my IBS flares, or I’m about to faint, my chest pains set in, or I’m so exhausted I just can’t move, or my brain is so fuzzy I can’t think straight, I stop and remember it’s POTS I’m dealing with, and POTS has a mind of its own.
One of the most frequent questions I get is, “Do you feel so much better knowing now that you have POTS?” And the answer is a resounding yes. I may not have a cure for this syndrome, but I have the power now to give myself grace when I can’t do the things I think I should be able to do. I have learned that I need to be patient with myself, just as I would be for a friend. I have learned to talk myself down when I feel frightened by my pounding, racing heart, which leaves me short of breath. I have learned that I can’t push through my cognitive impairment and that I need to stop and let my body rest. I am learning to find a new normal even after all these years.
I am thankful for my family and friends that stood by me through this exhausting journey and encouraged me to keep going. I am thankful for those that helped me find my voice when I thought I couldn’t. I am thankful that I am surrounded by those that believed me even when I started to not believe myself. I am thankful that things make sense now even though the thing that makes sense is a chronic illness.
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Want to learn more about dysautonomia? Check out our friends at the Dysautonomia Advocacy Foundation!