Living with Hyperadrenergic POTS: A personal story by Susanne Rimm

“ I am always so dizzy!”

That was the beginning. My doctor shrugged his shoulders and said: “ We will keep an eye on that.” I knew something was off but really had nothing to report, I just knew I wasn’t right. I kept feeling like I was going to pass out. One day, I was home alone with my 4-year-old daughter, and I had to lie down on the floor knowing I was going to faint, heart racing, shaking. “ If Mommy goes to sleep on the floor dial 911,” I told my daughter and pointed to the numbers on the phone. But I recovered.  A week later it happened. I was already wearing a heart monitor because of my complaints about having weird heartbeats. I was at work, a nurse at a cardiac unit, walking down the hall, heart racing and pounding, feeling like my heart was going to explode. When my knees got weak, I leaned against the wall …. when I opened my eyes I was on the floor, panic and noises and activity around me. 168/110, heart rate 160 – that was what they said. Minutes later I was in the ER, admitted and scheduled for a stress test in the morning. The heart monitor showed Tachycardia 160’s for 3 hours prior to the faint.

I had never even heard of POTS or dysautonomia or anything like that, and neither had my doctor. He sent me to a cardiologist for a TTT ( Tilt Table Test).  I had never heard of that one either. I failed the test by promptly passing out. “ You have the common faint and most likely will continue to pass out “ was the expert opinion by the cardiologist. “ Take this pill – Metoprolol – and good luck”!  I went online and typed “tachycardia and hypertension” and kept on reading, realizing that I had POTS. I saw 5 cardiologists, and a neurologist who performed autonomic studies ( which I was told were unremarkable ) and I tried everything they told me to do – drink more, take salt tablets, wear compression stockings. But the fast HR, high BP, fatigue, palpitations, and the ice cold hands and feet continued.  I kept passing out several times a week. And then something changed: one day I woke up from a faint at work, surrounded by nurses and doctors, and was told: “You just had a seizure!!!”. That’s when I had enough. I did not want to have this anymore, I needed to go on with my life. Why couldn’t I just take a pill and get better?

A several day stay at an epilepsy monitoring unit finally showed it: when I fainted while hooked up to EEG and heart monitor, the EEG showed a change in brain waves - excessive vasoconstriction causing blood flow to the brain to stop. The monitor showed tachycardia, an unusual finding since they had expected a drop in HR or even for the heart to stop beating. The neurologist was stumped. So was I because this was not what I had read about POTS. So, I found myself an autonomic specialist and one year and another TTT later I sat in his office, unloading my story to an endlessly patient and understanding physician Dr. Blair Grubb. For 2 hours I spoke without hardly taking a breath while he listened. Then he told me what I thought was true all along – that I had POTS. And after drawing blood to check my neurotransmitters, the diagnosis was confirmed: hyperadrenergic POTS. Norepinephrine levels were elevated both lying down as well as being upright. “What now?” was my response. And from then on I saw him frequently, even passing out in his office. He implanted a loop recorder that monitored my heart rhythm for 3 years until the battery ran out.  All it ever showed was tachycardia and PVC’s (premature ventricular contractions - extra heartbeats that can cause a fluttering or a skipped beat in your chest). Every faint, every seizure – tachycardia. Harmless in the eye of cardiologists but life-altering to me. I tried many, many medications, different beta blockers, Midodrine, Mestinon, Norvasc, Clonidine, Lexapro and more … all with varying results. All along, despite still being ill, I knew that I was in good hands and that Dr. Grubb would never give up. Every time I saw him I was crushed, hopeless, and frustrated, but he always gave me hope, and if one thing did not work, he tried another.

The worst thing was not even the physical symptoms, it was the fact that my life had changed. I was no longer the multi-tasking, healthy, always-on-the-go and productive nurse/mother/wife/woman that I was used to being. I was reduced to a cripple, unable to work, to take care of my family, to function. I had lost my independence. I could not drive or work or shop or go out or eat out or see my daughter dance or get awards at school. My smiles were faked grimaces, my laughter was a sigh; my days were dark and my nights were long. I did not want to get out of bed, the only place where I could feel better and was not afraid of losing consciousness. This anxiety was my enemy, always being scared of what might happen if I get up, seizure or syncope? My body and spirit were covered in bruises. In the mornings, I would wake up from a restless sleep and think: “ Do I really have to do this all over again? Do I really have to leave this bed?” And I started to believe that it would be so much easier for everyone if I could just die. There was no use for me any longer, I was just a burden to society. But then I thought of my daughter, and I realized – this is depression!!!

I made an appointment with my doctor and told him how I felt. I talked to my best friend. I saw a neuropsychologist and found that these feelings were normal for someone living with chronic illness. But this was not me. I was strong, I was young, I was better than this. I started to eat better and to exercise ever-so-slowly. I began to join my husband on shopping trips in my wheelchair, and I played games with my family. I found joy in preparing meals and baking my own bread. I went to church as often as I safely could. I got my groove back. I was better than that. I did not have to be a victim of this illness. If I could not live WITH POTS, then I would live DESPITE POTS.

Today I am well. I am disabled and no longer work, and I still have POTS. But my life is good – just different from what it was 10 years ago. I realize that for many people, the depression becomes an additional struggle on top of the physical ones, but luckily my depression improved with the changes I made. The medications prescribed for my physical symptoms keep me upright and functioning. The most effective treatment for me is weekly IV fluids. It took me years to convince my doctor that I needed them on a long term basis. I had spent more observation stays in the hospital for IV fluids than I can recall.  Over the years I was in the ER or hospital every 6-8 weeks. I would literally crawl in, and the next day I left skipping and hopping. My doctors were against inserting a port and my receiving IV fluids on an ongoing basis. The reason being the risks associated with a port ( blood clots, infection ). I begged my PCP for several years, but he did not feel the benefit would outweigh the risk. Until last year, when some doctors refused to give me IV fluids because “ I could drink.” This led to several unnecessary seizures and me having to crawl again. So finally my PCP had had enough and agreed to the port and weekly home infusions – and my life changed to the better. I used to pass out frequently, the longest I went without a seizure or faint was only 11 weeks.  But recently, I had my first syncopal episode after 5 (!!!) months!!! And the best thing is not just the fact that the spells have stopped but that my quality of life has improved. I am no longer fatigued. I can be active. I can exercise. I sleep better. I am no longer afraid to leave the house for fear of passing out.

Today I shed tears of laughter, and the hope that I had almost lost once is my daily companion. We CAN live despite POTS and better days ARE coming. We just can’t give up.

Stay strong.

Editor’s note:  Depression can be a natural response to chronic illness.  For some people, like Susanne, making changes in your outlook and lifestyle can be enough to help you through that depression.  But that is not the case for many people who suffer from depression and there is no shame or blame for the patient or the family.  If you have depression or are caring for someone who does, please seek help from a professional. Long lasting feelings of despair, hopelessness or thoughts of hurting yourself need to be addressed immediately.  Contact the National Center for Suicide Prevention https://suicidepreventionlifeline.org/  Or call 1-800-273-8255  

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