Living with POTs Syndrome and Autonomic Nervous System Disorders …. Suffering from Chronic Illness

 

Have you ever had suicidal thoughts? I have… multiple times. Many people can not understand what it is like to deal with medical issues that are hidden from sight. Anxiety, depression and other issues.. they are have this stigma… like oh well, suck it up. I can assure you, that is from lack of understanding and from being unable to comprehend what it is like to live with an illness daily.

I suffer from a chronic illness call Postural Orthostatic Tachycardia Syndrome (POTs) and Dysautonomia (Autonomic Nervous System  ANS Disorders). My entire life I have suffered from plenty of the symptoms caused by my syndrome and disorder (four years of severe suffering) before I was finally diagnosed correctly.  I went from doctor to doctor and was treated for symptoms, but not my illnesses and over time they only got worse.  When I was 24 and 25 years old, I had reached a point where standing made me faint, smells made nauseated, I was dizzy all the time, suffered horrible migraines,  had motion sickness, depression and anxiety. I was restless all the time and yet, completely exhausted and seldom ever slept.  Yep… all of those symptoms made it easy to misdiagnosis over and over again.  

In 2009 after my son had died, my depression and anxiety reached a new kind of bad.  I learned after he passed away, that I had a blood disorder. From 2009 to 2014 my symptoms grew at the quickest pace and I felt like I was going crazy. I worked in the medical profession and if it weren’t for my personal relationships with some of the providers I had to see, they would have thought I was mentally unhealthy or seeking drugs. The fact was, nobody I seen had a clue what was going on with me or how to treat me; so that treated the symptoms I had the best way they knew how.

In 2012 and 2013 I was at my peak of suffering. I could not be at home alone with my daughter because I felt like I couldn’t take care of her and myself. I remember giving her bath, she was only a little over a year old, I fainted and fell into the bathtub and almost drowned myself. I couldn’t drive without motion sickness, nausea and dizziness; that caused me to have severe anxiety. I couldn’t work because I was fainting all the time and every smell I encountered was magnified. I felt like a hound dog; with a nose that could smell even the slightest scents and oh my goodness; every smell made me sick to my stomach! I would come home from work on the days I managed to work through the entire day and lock myself in the bathroom. I would sit in a cool shower, in the dark and cry.  My migraines at the end of the day were so bad, that I couldn’t handle the slightest amount of light. I can remember thinking to myself, why in the world am I going through all of this. I thought the world would be better off without me. I felt like a burden to my husband, like a horrible mother and in so many ways, I felt alone.  Yes.. at the time suicidal thoughts were also, something I had to fight.

I was fighting other medical problems and cancer; chemo seemed to make everything worse. I was in and out of the hospital; my blood pressure was at unstable low rates and I needed blood transfusions.  In 2012, a cardiologist that I had not seen before came into my room and told me; I have been reviewing your medical records and I think you may have a rare syndrome called POTs. He also, told me he had no idea how to treat it  correctly and that at my age; for it to be this bad, was very uncommon. He started me on a few medications and told me to come into his office soon. Finally, the correct diagnoses, but a provider who didn’t know how to treat the severity of what I had. I seen him a few times, but my condition did not improve.

With a lot of help from my Primary Care Physician, she was able to find me a provider who specialized in POTs in another state and was able to get me in with him for an appointment. For the first time in my life, I had answers and explanations. He done a number of test on me in his office including blood tests, stress tests, EKG, Tilt Table and more. The most amazing part was before I left his office; he reviewed with me all of the results of each test. He explained things from my past medical records, where mistakes had taken place, what caused things to get worse, what made them better, and put me on a medical plan.

Dr. Watkins saved my life. He made things tolerable for me. He explained what my triggers were and how to avoid them. He also told me that between the POTs and blood disorder I also, suffered from an Autonomic Nervous System Disorders. That basically, my brain did not communicate with body correctly, that I have enough adrenaline to run a small army and I had the worst case he had ever seen in an adult. That children often suffered from this more and would out grow it. I would never grow out of it because of my blood disorder. That I also, should have suffered from these things as a child. I did struggle with a lot of the symptoms, but as a child I didn’t have any fainting issues. They stayed hidden until my 20’s.   He taught me a lot, gave me a lot of great information and until this day, I still continue to see him.  I have learned to keep most of my syndromes under control. Dehydration is never a good thing for me, during the summer time I increase salt intake, I avoid extreme heat or cold weather as much as possible. 

With the help of a lot of medication, avoiding triggers and self-awareness; I have come a long way. Most of the time anxiety and restlessness are my biggest struggles, but I manage. I consider myself quite lucky to have gotten to a point in my life where it seems somewhat normal. Well what is normal to me anyway.  I remind everyone struggling with any kind of illness or issue to remember this… Out of the bad always comes something good.

On June 17, 2016, A nurse asked me while getting my blood transfusion, if I ever get tired of having them? I smiled at her and said not anymore. She looked at me with questionable expressions on her face. I told her, At one time yes I did, but I have so much to be thankful for. I explained to her; life isn’t always about being happy and getting what you want. It’s about understanding the importance of being grateful for the situation. It’s not ideal, but it allows me to function correctly, to be a mother to my children, to work and prevents me from fainting frequently. I may not like having it, but I’m thankful for it. Even though there is struggle and pains, there is always something to be grateful for and to appreciate.  Sometimes we focus so much on the bad and negative…. That we never realize how blessed we really are. She smiled and then hugged me. She told me that was exactly what she needed to hear today because she doesn’t appreciate how the bad effects the good. That she never thought about that before. 

Seldom does anyone ever consider those things. So, with each struggle of my illness I look for a positive. I recommend you trying it too.

 

 

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