My Health Journey: Finally Diagnosed With POTS & Dysautonomia
( If you are struggling with symptoms that no one can explain….You COULD have POTS, or some other form of dysautonomia. The intention of this blog post is to help anyone who thinks they could be struggling with POTS, or knows someone who could be. I wanted to share my story for anyone to relate to in their journey to find answers. This is why I have talked about as many symptoms as I could remember, as well as made a list of symptoms below for quick reference )
What was happening to me?! I was 30 years old and my body seemed to be falling apart from every angle. I could barely keep up with the new symptoms, new supplements, and new information from varying sources.
I was having panic attacks all of the sudden. BAD ones, even though I had never been an anxiety sufferer in my life. The attacks would come on at random, and even wake me up in the middle of the night. Almost sending me to the ER multiple times.
I struggled to breath almost 24/7, with or without a panic attack. I felt like I had to burp constantly, but couldn’t, like air was getting stuck. It made me feel as though I was slowly suffocating, that I couldn’t take a full, deep breath for relief. And I didn’t want to get up or do much because of it.
Bruises would appear all over my legs for no reason at all, and take a long time to heal.
When I would wake up in the morning to let the dog out, I couldn’t stand up straight because I felt like I couldn’t breath fully. My heart raced and pounded in my chest.
When I tried to fall asleep at night, I struggled. All I was aware of was my heart pounding against my ribcage. I could hear it in my ears. Feel every beat. I had to force myself to try and ignore it enough to relax and drift into sleep, hoping not to be awakened by another panic attack.
Sometimes my heart even skipped a beat, feeling as though it had dropped into my stomach and then rattled around in my rib cage like a caged-bird….. Sending me into a two-hour freak out mode.
When I tried to workout at the gym like normal, I would have to stop in the middle of my workout and leave. Physical exercise would give me anxiety, and cause me to feel weak, shaky, and panicky.
I had sharp nerve pains all over my body, random and sudden. Thankfully they didn’t last more than a few minutes at a time.
I struggled to drive, because the constant movement of the road and my surroundings bothered my eyes in a way I had never felt before.
I had severe brain fog, and struggled tremendously to focus on tasks that I would normally handle easily. Like paperwork, paying bills, tax receipts, etc. After forcing myself through it for 30 minutes I would start crying and have to take a break.
I had chronic pain in my neck and shoulders that hindered physical activities, and caused sleep issues.
I started to get scared….. REALLY scared, that something was seriously wrong with me.
I mentioned things to my multiple holistic chiropractors and physicians. “Do this. Try that. Get this lab checked,” they said. I had multiple EKG’s and got an echocardiogram done. When my results came back mostly normal with no red flags…. I was immediately taken less seriously.
The fear and stress of it all weighed on me daily, not to mention the physical symptoms that hindered my capacity for normal life. I was soon disregarded as an “anxious” patient, and my symptoms unvalidated as a result.
I wish I could say that it was only the doctors who did this, but no. Many people that I was close to started to nit-pick my life. My stresses, my diet, MY CHOICES. I could feel their unspoken or insinuated judgments belittling me, my life, and my struggles.
I started to feel ashamed, embarrassed, and condemned. I was torn between telling the people around me how awful I felt and how much I had been struggling, to pretending I was fine so I could escape the list of unhelpful responses I received.
But still, I KNEW something was going on with me. I was not accepting their opinions or diagnoses. I had lived my life for 30 years, I knew what feeling normal felt like, and what NOT feeling normal felt like.
So I prayed to God, I asked for help, guidance, and answers. My husband found a place that combined two approaches together: Holistic health, diet, and supplementation as well as medical intervention and medications when necessary. We both had a good feeling about them and decided to give it a try.
They immediately had me do MANY different things. A 90-day elimination diet, hormone replacement therapy, stomach acid replacement, and many different supplements. Some of them were: iron, vitamin C, probiotics and probiotics, ashwagandha, kava, and more.
I saw immediate improvement in my stomach & breathing issues. And by the end of the 90-day elimination diet, I was almost back to normal. No more panic attacks. Symptoms either gone, or drastically reduced to manageable. I started going back to the gym to workout soon after.
1 Year Later
A year later, (around 8 months after feeling better), I got pregnant!
I had the typical 1st trimester symptoms of nausea and throwing up. But it was also accompanied with a lot of fatigue and weakness.
As I crested the 2nd trimester and onward, I kept waiting for the “feeling better” part everyone talked about. Instead, I felt WORSE. And things got worse and worse as the pregnancy progressed.
I tried talking to my OB’s about it all. I told them I would have things I called “episodes”. They would come over me suddenly. I would be so tired that I felt drugged and could barely hold my head up, while at the same time I felt like I was having an anxiety attack and struggled to stay still and rest. I would be hot and cold at the same time. SO hot that I needed the fan on full blast, even though I was covered in goosebumps and trembling uncontrollably all over.
It felt like my body was shutting down.
I tried telling them that it felt like my blood sugar was crashing all the time, even though my readings were coming back normal. I had no appetite because of the pregnancy, but had to shove food down my throat all day long.
I would eat a good meal… fat, protein, and carbs. Expecting to feel great for 2-3 hours before I needed to think about food again. Instead I would finish eating and feel worse 20 minutes later. Shaking, anxiety, weakness, faint…. Like my blood sugar was crashing… 20 MINUTES AFTER EATING!
“You’re pregnant”, they would say…. “It’s all normal….You’re obviously not eating well enough. And you should consider talking to one of our psychiatrists because of the anxiety.”
…….I was dismissed…..It was blamed on ME…. and I was labeled, once again, as someone who had anxiety problems that explained all of my unexplainable symptoms.
I was beyond frustrated…..hopeless….scared, and misunderstood.
Once again, I KNEW this was not normal. I KNEW that people did not feel this way during pregnancy.
My mother would come over at times and watch the amount of food I was eating, and the frequency at which I was eating and was shocked! I was eating way more than any other sick pregnant person I had ever met. Yet, I was still being blamed for not eating enough, and not eating enough protein.
I suffered through the rest of my pregnancy, being judged by everyone for “hiding in my house” and “sitting around not doing normal things”. Being so greatly misjudged and misunderstood. I felt all alone and afraid, anxiously awaiting the arrival of my baby…. Mourning the loss of my final days of freedom….. Wondering all the time if I would feel good enough to be able to handle all the ways my life was about to change.
I had my baby 3 weeks early, and had an unplanned c-section.
And then my new life began.
In the back of my mind I thought, “Well if everyone was right and it was “all in my head” or “just because I was pregnant”, then I should start feeling better immediately postpartum!”
Time passed. I slooooowly improved a little over the course of 4 months. Still being bound by heat conditions and chained to my refrigerator.
At the 4 month mark, things got drastically worse. Worse than they had even been during pregnancy.
MY SYMPTOMS INCLUDED:
-Almost all of my previous symptoms returned as mentioned above, plus new ones:
-My heart rate would increase 40-45 bpm upon standing . (This is 1 main sign of POTS. You can have this done at the doctor’s office. But, you can also find this out by doing a poor man’s tilt table test AT HOME, right now. Here’s a link that describes the process: LINK)
-I could barely leave my house because my body was so intolerant to heat. My house was at a constant 68 degrees, which was a huge change from my normal 74-75.
-I had to eat constantly to avoid anxiety attacks and “episodes”. And whether I ate or not I felt like my blood sugar was crashing all the time.
-I could not stand up for long, or stand still, or I felt like I was going to pass out as I struggled to breath and take full breaths. Tasks like doing the dishes, taking a shower, or even holding my newborn were intensely laborious.
-I was SO DIZZY. Sometimes it was a vertigo kind of dizzy, while other times it was a lightheaded dizziness.
-I struggled with some sort of digestion or stomach acid issue that I have yet to fully figure out. But I would need to burp constantly, but my burps would get stuck and make me so uncomfortable. It would make it very hard for me to breathe, I felt claustrophobic, and it caused heart palpitations.
-My feet and legs would get very red and hot sometimes if I had been standing or walking for a bit.
-Blood would randomly pull in my hands sometimes, causing my veins to swell to the point of aching.
-I was sensitive to loud noises and bright lights.
-My blood pressure was a lower than normal for me
-My ears rang often
-My toes often had a blue or purple hue to them
And still…..no one could tell me what was wrong with me.
Finally Hearing About This “Thing” Called POTS
“Don’t google your symptoms,” they say.
Well I’m not ashamed to admit that I DID!
I was at my wits end.
I started typing in some of my very random, (but very specific), symptoms one at a time and reading those Q&A forums where normal people are discussing things. I wasn’t looking for a doctor’s opinion, they had failed me.
I wanted to hear other people’s first-hand experiences that I could relate to. (Which is my driving force behind writing this article).
I accepted that I had to be my own doctor at this point.
I had recently started following a girl on Instagram. Her account name is ChronicallyHealed. She talks about her symptoms and her 10 year journey to finding out that she had multiple things going on, one of them being POTS.
SO…..when I came across other people talking about POTS, it wasn’t the first time I had heard about it. And I decided to look that up as well. I looked up the medical definition and details about it. And then, once again, I looked up what normal people were saying about it.
BAM! I was 90% convinced that this was the invisible illness I had been suffering from since pregnancy, and ALSO a year before pregnancy.
I told a few people close to me, and made an appointment with a cardiologist.
My mom did a little research on it and found a POTS Treatment Center online that is located in Texas.
(After some phone calls, contemplation, prayer, AND AN OFFICIAL POTS DIAGNOSIS FROM THE CARDIOLOGIST…. I decided to go through the 2-month POTS treatment program virtually.
It has been a life changer for me! I want to discuss more about the center, their process, and what they had me do in another blog post. But, for now, here is a link to their website if you’re interested in more information.POTS Care)
I want to add something else that I feel is important:
The cardiologist ran some other tests to make sure nothing else was going on, but he was almost immediately convinced that I was dealing with POTS.
BUUUUT……. He was not familiar with any of my other symptoms except heart rate, blood pressure, and dizziness. He didn’t understand the dramatic way it was affecting my life. And he told me very little to actually DO about it, (basically saying I would just have to live with it). Plus, he told me to take a few meds that I later found out from the POTS center…. were actually making things worse, not helping.
MY POINT: while cardiologists can give you a diagnosis and a starting point, I highly recommend talking to another physician or center that treats POTS specifically. This is what will actually get you on the road to improving your quality of life.
I have been through a lot and learned a lot since getting this diagnosis, all of which I want to share in other posts.
But for now, I want to say that my quality of life has improved drastically. I just recently started vacuuming and mopping my own floors again! After 2 and a half years….
Many of my symptoms have completely gone away, while others have been improved by 75% or more!
If you are struggling with symptoms that no one can explain….
If you had multiple of the symptoms I described….
If your quality of life has been in a steady decline…..
You COULD have POTS.
There are also studies that have revealed a large increase in the number of POTS diagnoses since COVID.
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Until next time, take each day one day at a time.
Her Life In Season