My entire life I lived with symptoms, symptoms that seemingly didn’t fit together. All the doctors looked only at what they were trained for, sticking with what they knew best. But when more than a decade goes by and you are still struggling to live a normal life isn’t it time to wake up and realize that there might be a bigger picture.
After completing high school and entering into the world of college everything seemed to be going pretty steady. My symptoms were manageable enough to attend class, but after my classes ended I would travel home weary and tired. The brain fog consumed my thoughts. I slept when I could and never went out at night. My life consisted of going to and from the university just for educational purposes, the social life was still at a standstill.
Having been diagnosed with POTS my life consisted of maintaining the symptoms and hoping flare ups would be left at bay. My life was also very limited after seeing the cranial osteopath, I was told what I can and cannot do. The list of activities I couldn’t do grew practically every trip. It was hard to have fun when you knew that anything out of the ordinary could mess you up. Even sitting in a different chair could jam my tailbone, or lying on a pillow too high which would push my skull forward. I had to calculate my life down to a tee. Anything else would result in a flare up which would cause me to miss class, and even the disabilities office refused to work with me on my absences. I had to push myself through or face the thought of being forced on medical leave from the university and be pressed further behind on my degree progress.
Year after year went by and I could control most of my flare ups, I was far from perfect but it was still better than being bedridden. I was succeeding in school maintaining a high GPA even with my numerous absences and brain not being there half the time. In my junior year my cardiologist called me and told me he could no longer see me because his practice was refusing to see POTS patients. This happened once before when I was a minor still and the practice said no minors. He referred me to another doctor in the practice who would solely fill my prescriptions. When I finally had an appointment I was told he would only fill some of what I needed. The main problem was the sleep medication I was on, which he refused to refill. My entire life I have had sleep issues and after seeing the old cardiologist for a while he put me on Trazadone and after the Trazadone didn’t work he prescribed Ambien. The thing with Ambien is that doctors really don’t want you taking it every day for long periods of time. By this point I had been on the Ambien almost 3 years, prescribed to take up to 20mg a night every night. The next doctor refused to fill it, and I was left with my lingering supply to hopefully make it to the next doctor. Ambien has a nasty withdrawal and to flat out not prescribe it to someone who has been on it for years is wrong, especially when you know it does have a withdrawal process. And the real kicker was that not sleeping was a huge trigger for my flare ups.
I decided it was time to leave that practice all together since the doctor that would see me was not filling half of my medications and not caring about weaning me off of anything. Luckily I was able to make an appointment at a top heart center in the area and see a doctor who specifically treated POTS patients. The appointment was months away but I could wait, my hope was that she would recommend something else to help me feel like a human again. My life was so controlled by my diagnosis and I couldn’t break free no matter what I tried. I was starting to think I was a lost cause.
When the day of the appointment rolled around my mother came with because this was an incredibly important event to attend. The massive heart center must have spanned over 3 football fields with an extremely modern design. I was hopeful just walking through the door. I needed desperately a fresh take on my POTS diagnosis. When we were ushered into the backroom the doctor enters wearing the typical white doctors garb. She was beyond intense for having the thinnest frailest body imaginable. She talked fast and at some points I couldn’t even understand her. She asked me to tell my story, which I did.
“You don’t have POTS”
Excuse me? Wait what? What did she just say? I looked at my mother, as she looked back at me almost in a rage. What do you mean I don’t have POTS? She asked me to take away the POTS diagnosis and describe my symptoms.
“Because of my POTS…” She stops me and says no, take out POTS, and just describe the symptoms.
“I can’t exercise without my POTS symptoms…”
“Without the POTS…” she exclaimed.
I continue. Explaining my situation was very difficult without adding in the POTS symptoms. I was associating everything with that word. My brain fog, the blood pressure changes, the intolerance to hot and cold, the inability to exercise, the aches and pains I have all over, the chronic fatigue, all of my stomach problems, the cold sweats I would get, even my sleep issues. Everything I could think of I associated with the POTS diagnosis. Well after all I’ve been told this over and over again for years by my former doctor. Everything I had was POTS. All the symptoms were POTS. I couldn’t do this because of POTS. I couldn’t do that because of POTS. It was hard explaining it any other way.
But it was a misdiagnosis. Everything I was told was not true. After living with this diagnosis for 6 years I was told I do not have POTS. I was skeptical. So was my mother. In fact she started back talking the doctor who immediately talked over her. My mother is no wimpy woman and would never let me be pushed around by a doctor. She voiced her opinion while I sit there stunned, now rethinking practically my entire life.
The doctor told us that POTS is a regularly misdiagnosed syndrome since there is no official test to prove you have it. It is simply diagnosed by looking at your symptoms and labeling you with something so they can begin treatment. She also added that most people who truly have POTS are elderly people who can’t get up since they immediately pass out. Things like this did anger me since I knew it wasn’t true. I know in my case it might not have been POTS but by doing research it is most common in adolescents. Not once had I heard it be diagnosed to elderly patients only. She also questioned if my stomach problems actually existed which also frustrated me till no end. This woman sat there and decided to pick me apart piece by piece and tell me it was all a lie. I was questioning POTS but I was not questioning my stomach issues or migraines. Let’s just say this woman was a straight up bitch in white that had no problem exploding your brain with completely new information then stomping on you by insulting the support at home. To end the appointment she told my mother to be more accepting of this news and for me to keep a journal every day, then I would see her in 6 months. To see the look on my mother’s face must have been priceless. But I signaled my mother to not say anything so we could get out of there and have a real discussion with just the two of us.
As we were walking out the door she also added that she would refer me to a rheumatologist because she thinks I might have nerve damage that might be causing some of the symptoms. We finish up the scheduling and head back to the car where I immediately start having a meltdown.
And there I was, back in the dark yet again.