Awareness is the Answer.
My Story
By, Jackie
“The pediatrician wasn’t aware of what POTS was …but … She didn’t need to be an expert. She just needed to be made aware. Awareness is so important in order to get proper care. And I’m so thankful my child won’t have to fight for decades to get help.”
My name is Jacqueline, I’m a 33 year old wife, stay at home mom, and I live with chronic illness.
Growing up I was a very active child. I spent any time I could in the pool, playing outside, or in gymnastics. Despite being a busy kid, I remember not feeling well a lot of the time. At the age of six I started to have very strange sensations in my body. My heart would race and I felt scared. I didn’t know how to describe what I was feeling. That’s when I was told I was having anxiety for the first time. It made sense for my people to think this, given my early symptoms. I was very confused because I didn’t feel worried about anything.
As I got older, and things progressed, I remember telling friends and family, while outside in the heat, that I felt like I was going to faint. They would respond with “Yeah it's so hot!” or “Same here”. When I would have aches and pains and tell my parents or doctor they would tell me I was having growing pains. “This is normal, you’re normal.” I would tell myself. When I would get dizzy playing I would remind myself that it was all normal and everyone felt like they were going to pass out outside. I had no idea that people thought I was being hyperbolic when I would tell them these things. Looking back, things became normal for me that never should have been considered normal.
When I was a teenager I started to feel much worse. I’ll list some of my symptoms here that many doctors over the years thought were due to anxiety:
vision blacking out, chronic joint and musculoskeletal pain, migraines, tremor, confusion and panic standing, trouble breathing, presyncope, dizziness, lightheadedness, irregular blood pressure, nausea, fatigue, confusion, sleeping issues, palpitations, tachycardia, blood pooling, blue and purple extremities, chest pain, heat intolerance, and visual disturbances.
I remember feeling so hopeless. I didn’t understand what was happening and I was feeling so sick. I thought everyone felt the way I did. I thought this was anxiety. I thought I just couldn’t function in life at the level everyone else could. “Why can’t I push through life the way others are able to?” My pediatrician put me on an antidepressant, thinking I had anxiety and depression. I felt relieved. I thought this would be the thing that would help me.
My symptoms overall didn’t get better but I would have little chunks of time where they would improve to where I still felt bad, but could do more. This was very confusing. But as time passed, my symptoms increased even more and those chunks of time became shorter and shorter. The medication wasn’t helping and I was getting worse. The doctors kept changing my medication with nothing helping my symptoms. These symptoms would persist and when they became particularly bad, I would be taken to the Emergency Room. The doctors would run tests that would come back normal and I was told that this was “just” anxiety. Sometimes my blood pressure would be high and I was instructed to drastically reduce my salt intake. I felt like something was really wrong but I was told that was part of anxiety disorders. After a few years of this, I gave up on the idea that something was physically wrong with me. I eventually believed that all of my symptoms were due to anxiety and depression.
My body felt stuck in a perpetual state of panic. I felt like I was being chased by a bear and I couldn’t understand how I could feel so anxious for no reason. I tried therapy, exercise, diet changes, supplements, self help books, meditation and 6 different antidepressants. Nothing could touch what my body was doing. I felt completely devastated and lost. Eventually my symptoms got so bad that I spent most of my time in my room alone. I just couldn’t function. I was so dizzy, exhausted, and lightheaded. All I could do was sit at home. I couldn’t tolerate much of anything.
After high school, I decided not pursue my goal of moving out and going to a university. Believing that I just couldn’t do life the way everyone else seemed to be able to. I was still concerned something was wrong, but I kept telling myself that was the anxiety talking.
After high school, I started taking classes at a community college. I was loving school but my body continued to get worse. I kept pushing myself, thinking that no matter what I was feeling, either everyone felt this bad going through life, or my anxiety was just so bad that it was causing these symptoms. I got a retail job to pay for school. But the more I did, the worse my symptoms got. Eventually, I had to drop out of school and quit my job. I think I knew deep down this wasn’t a mental health issue. I came off the medication that wasn’t helping.
I was feeling some improvements from stopping the medications that seemed to make my symptoms worse. The next semester I went back to school and shortly after that, I met and started dating my now husband. While I continued school, I got a nannying job. One day my body just said no, and I couldn’t get up off the couch to go to work. After having to quit another job, I finally accepted that this wasn’t anxiety or depression and that there was something very wrong but I didn’t know what.
As I took more time to rest, listen to my body, and take classes without working, I was feeling some improvements. As I pursued answers, I started to see a new family doctor who believed there was something going on with my body and that it wasn’t anxiety or depression. He knew something was wrong and was trying to help me. It was such a relief to be believed and taken seriously. Throughout my life I had rashes, other allergic symptoms, and stomach issues, so my doctor thought that my symptoms could be related to severe allergies with asthma. It made sense given my skin testing results and allergic/breathing symptoms. I felt like I was getting answers.
At 21, my husband Matt and I got married and moved to the Los Angeles area for his new job. I wanted to finish school, but I was so exhausted from pushing myself all those years, I just needed rest. This period of rest seemed to help. I still felt like I couldn’t do all the things I wanted to do, but I felt like I could live a more normal life.
My doctor referred me to an ENT in the area and I was also diagnosed with ophthalmic migraines. If I felt dizzy or lightheaded it was thought to be either from the allergy medication I was taking, due to the allergies themselves, or these migraines that predominantly affect vision and can cause dizziness. I also found out that my severe stomach pain went away from no longer eating gluten. I felt like I finally understood what was going on. I was functioning better than when I was younger. And my symptoms had improved from where they were. I tried to move on with life. I was happily married and excited about life and I wanted to be a mom.
My first two pregnancies ended in miscarriages. We were heartbroken and eventually got pregnant with our son. I had severe nausea but everything was going smoothly and my other symptoms improved while pregnant. Especially my allergic ones. At 38 weeks I was diagnosed with preeclampsia and was induced. I went from 1cm to 6cm in 40 minutes. My contractions were on top of each other and the doctor had to give me medication to stop them. They had no idea why this would happen. But my son was healthy.
My symptoms got somewhat worse again, not to the extent that they were when I was younger, but we had explanations for my health issues, so life went on. My son was a particularly difficult baby so any worsening of symptoms were blamed on the lack of sleep and being a new mom. Three years later we had our second son. This pregnancy was much worse. I didn’t have the same improvements while pregnant. I started to feel really sick again but it seemed to be part of pregnancy. At 40 weeks, my doctor recommended inducing labor to avoid preeclampsia. Everything was going well during the induction, it turned out I was already in labor when I came in.
At 8 centimeters dilated, with an epidural in place, 2 nurses rushed in the room and told me the baby was in distress. His heart rate was dipping into the teens and would even go down to nothing. My doctor rushed in and tried to find my son's heartbeat. She explained that I needed an emergency C-Section to save my son's life. I was rushed into the operating room but was not numb. I told them to just put me under anesthesia and get my son out. The doctor told me they had some time to get me numb and my son's heart rate was now coming up. She recommended against putting me under anesthesia due to the higher risks for the baby, as he was already in distress. The baby's heart rate dropped and disappeared again and they came over with anesthesia. I was so scared for my baby that I said I was numb when I wasn’t. When they performed the C-Section I felt everything. It was the most horrific moment of my life. But he was safe and healthy. The OB told me later she had no idea why I couldn’t get numb.
I was scared to have another baby, but we were reassured that these events weren’t going to happen again and that they were isolated incidents. Two years later we had our daughter. Her pregnancy was the hardest of all. I was extremely nauseated and throwing up constantly. All of my previous health symptoms became severe again. I was put on anti-nausea medication to function. This helped the nausea and vomiting, but I felt like it made my other symptoms worse. The nausea finally let up at around 7 months and I was able to stop the medication. At 36 weeks I started to have contractions every 10 minutes that lasted for 4 weeks until my daughter was born. The doctors told me I was having prodromal labor. The day I went into active labor with my daughter, I went to the hospital and I happened to run into my OB/GYN outside. She told me that she didn’t think they would admit me because she didn’t think I was in active labor, due to being able to talk through contractions. She said I wasn’t in enough pain. I was already at the hospital so I went to get checked to see. I was 6.5 cm dilated and fully effaced. I was admitted and was surprised because I thought my pain would be more intense.
35 minutes later when we got into the delivery room I was 10 cm dilated and ready to push. There was no time for an epidural and my daughter was born a few minutes later. The doctor and nurses had no idea why all my deliveries were so fast. My daughter was healthy and happy. We went home the next day. Unfortunately I developed Postpartum Preeclampsia and had to be readmitted. I was warned about this condition when we left the hospital with her the first time and was told to come back if I had a severe headache or the worst headache of my life. It took 3 days for me to go back to the hospital because I didn’t think I was in enough pain. After spending 5 more days in the hospital, my blood pressure was normal and I was released. A day after that, my blood pressure went back up and I was put on a beta blocker. The relief I felt on that medication was great. I felt so much better and stayed on it for a couple months and was taken off of it once my blood pressure stabilized.
All of my previous medical symptoms continued to progress. I kept pushing through for a couple years to get the basics done at home. I was exhausted. At the end of every day I felt so thankful I had made it through another day. I had no energy to do anything beyond that. I had these 3 beautiful children to take care of. I had everything I had ever wanted, but my body was a mess. My OB thought my symptoms could be related to the postpartum preeclampsia effects.
Eventually I couldn’t get out of bed. I was so confused and the symptoms weren’t making any sense with the diagnosis I had. I knew there had to be more to this. All of my symptoms became 10 times worse. I felt so terrible upright and the fatigue felt like I was weighed down with cement. I would have to prepare myself mentally for over an hour to just get up to use the restroom. I couldn’t care for my children, make it down stairs or feed myself. Thankfully my husband was able to work from home to care for me and our kids. I was referred to a neurologist who within two minutes of talking to me, told me that he thought there was nothing physically wrong with me and that this was a “behavioral health issue”. MRI scans came backnormal and so did blood work. “Maybe this is in my head” I thought. Finally we got some vitamin D results back that shocked the doctors. I had no vitamin D in my system for over 10 years. Apparently when I was told a decade prior that I was low, I wasn’t put on high enough supplements and was never told my levels.
My doctor, and other doctors he consulted, thought this was the root cause of my illnesses as well as Celiacs disease, and it made sense. There was hope. I started to improve, but I was still very weak and had the same symptoms to a lesser degree. But I was no longer bedridden. Two months after that, all of my symptoms came back and I was stuck in bed again. Expecting to see low levels of vitamin D, my doctors were surprised to see well over normal levels. This made no sense.
I saw my new primary doctor that was recently assigned to me after we moved. Bringing a list of over 30 symptoms-Most of which I had since I was a child and had progressed. He recommended I see a Rheumatologist. A few days before my Rheumatologist appointment, I was given an old apple watch. I noticed that my heart rate was 160 while standing. I didn’t think to mention this at my appointment but it helped me make sense of things later on.
After the long history and exam, the Rheumatologist said the words I never thought I would hear, “I know what’s wrong with you”. She diagnosed me with Hypermobile Ehlers Danlos Syndrome. If bittersweet could be explained in a moment, this was it. I had an answer. I wasn’t just weak or lazy. I wasn’t overreacting. I was sick. My relief shared the same space as my devastation. The fact that this is a genetic connective tissue disorder and each of my children have a 50% chance of inheritance was devastating. There is no cure or real treatments, but symptom management. The doctor couldn’t explain a lot of my other symptoms and she recommended I follow up with my primary care doctor, join an EDS support group, and learn as much as I could about my newfound condition.
That night I started researching. Very quickly I noticed an illness commonly associated with Ehlers Danlos Syndrome. It was called POTS: Postural Orthostatic Tachycardia Syndrome. I knew immediately that this was what I had and remembered the apple watch stats. I started to check my heart rate as I waited for my referral to the cardiologist to have some information for him ready. I noticed my heart would be 85 beats per minute while laying down and usually get up to 170 upon standing. I finally made the connection with the anxiety symptoms. I only felt them when I wasn’t lying down. I was put on a beta blocker and it immediately lowered my HR and took my anxiety symptoms down by 99%. I couldn’t believe it. The relief I felt from those symptoms were indescribable and it made so much sense now as to why I felt so much less anxious while on the beta blocker after having my daughter.
After being diagnosed, my POTS symptoms continued to become worse, except for the anxiety. I was also diagnosed with Mast Cell Activation Syndrome and was experiencing various levels of anaphylaxis daily. This explained why I felt better living outside of my childhood home where we had many pets (a huge trigger of mine).
Once I got my diagnoses, my entire life made sense: the heat intolerance, aches and pains, the worsening of symptoms while standing, and why I felt so terrible standing at work, why walking to class in the heat with heavy books took so much out of me. It made sense that diet changes where I was eating less salt in order to keep my blood pressure down, made me feel worse, the ebb and flow of symptoms exacerbated by pushing myself too hard, among other things. Why I felt better when I had less going on in my life because I was getting proper rest, why certain dietary choices made my POTS and MCAS worse, why my blood pressure was high in the first place, all the pregnancy complications and rapid labor, the inability to get numb during medical and dental procedures (which is common in EDS), the high pain tolerance due to years of being told my pain was normal and not knowing what it meant to be in pain. And why many of the antidepressants made my symptoms worse.
I wish I could say that my POTS is managed well or that I live a totally normal life now. But that isn’t the case. I struggle with a lot of the same symptoms and orthostatic intolerance. I use a wheelchair for outings longer than going to pick up a prescription or get IV fluids. We still don’t have all the answers when it comes to the best treatment options for me. But, I finally have a referral to a well known University hospital where I can be evaluated by a POTS expert. I still have days that I spend in bed, but the experience feels very different. I don’t lay here and wonder if I’m weak or wonder what’s wrong with me. I can rest knowing we have answers. I’ve had to learn to pace myself to try and better manage my condition.
I am still disabled but I have a name for it. I’m not weak, lazy, or incompetent. I’m chronically ill. I’m in such a better place now mentally just knowing these things. It’s been almost a year and a half since I was diagnosed with POTS but it’s changed my life for the better. I’m not as sick as I was at my worst but my POTS has become worse in general over the years. But knowing what is going on inside my body is huge for me mentally. I’ve found from countless experts that anxiety and depression do NOT cause POTS, but being a person with untreated medical conditions and going undiagnosed and misdiagnosed, can cause anxiety and depression. Mental illness is very real and deserves to be treated, but blaming every symptom on this, because you have a history of anxiety and depression, makes no sense.
When you feel like you are weak, not capable, and that everyone feels this terrible living life, you try to act as normal as possible. Before my diagnosis, I didn’t think it was acceptable to lay down if I felt like I needed to, to make an easier dinner for my kids, to cancel plans, to listen to my body. No one put this pressure on me. I pushed myself because I thought that’s what everyone did. I remember the first time I heard that the normal amount of pain on the 1-10 pain scale was 0. I couldn’t believe that people walk around and do life with no pain. After my diagnosis I was able to cope and grieve my medical problems. Grieve the symptoms I had for decades because they were validated. My depression is in remission and anxiety has been completely removed from my chart and was changed to “Anxiety caused by a medical condition”. I still have moments of feeling anxious but it’s usually because I’ve missed my salt tablets, fluids, or a dose of medication and my heart rate is too high. Seeing the difference in how I feel anxiety wise still shocks me. Even in the most stressful moments of my life I never feel the panic I felt before I was treated for POTS just standing in line at the store.
A few months ago one of my children was diagnosed with POTS. He was seen by his pediatrician, referred to a cardiologist, and diagnosed within a few weeks. All because the doctors knew what to look for, because they were knowledgeable that his mom has this same condition. The pediatrician wasn’t aware of what POTS was when she first saw him, but was able to quickly do some research before our appointment. She didn’t need to be an expert. She just needed to be made aware. Awareness is so important in order to get proper care. And I’m so thankful my child won’t have to fight for decades to get help.
As I write my story, I can’t help but wish that I would’ve trusted myself. Wish that I would have taken my symptoms so much more seriously. I wish I could go back and believe myself. Believe that I was as sick as I felt. Tell myself that I had to keep fighting for answers, advocate for myself, trust that I was sick and deserved answers and treatment. And know that even before a diagnosis, my illness was valid. I can’t change the past, but I can share my story in the hopes that it can help someone else.
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