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My Life is Standing Still, Ironically...

Anne, age 56, France

I have always had POTS. I sang in the choir every morning in school and used to get more and more light-headed until I felt myself blacking out, and I would burst into tears and run out of the hall. The other children found this very funny. I have spent my life asking doctors to check my heart and blood pressure because I can’t stand in a fixed position, despite being very fit. Every time they would ask me to lie down, put on the cuff and pulse monitor and tell me I was in perfect health. Not one of them ever suggested I stand up.

I have climbed over some of Scotland’s biggest mountain ranges. When everyone else stops to stand and look at the view, I sit down. I can cycle and walk for miles, but I can’t ski because I get altitude sickness above 2000 meters. I have never been able to go to Glastonbury festival, though I have always wanted to. They say they now welcome POTS people, but as well as all the other obvious challenges like crowds and queues I dare not camp in the heat. I love theatre but I always sit on the end of a row and dash for the door before the applause is over. I also dive to get the last remaining seat on public transport. People probably think I am the rudest person alive.

After I moved from England to France, my symptoms got worse with menopause. I didn’t have the energy to clean my own kitchen without having to sit on the floor, gasping for breath. Sometimes I was bedridden, blinded by visual migraines, finding the toilet on my hands and knees to vomit, but I was assured that menopause affects some people that way. I am certain that if I had grown an extra head my doctor would have shrugged and said, Mais vous êtes en ménopause, Madame, c’est normale! I suspect that this is why older women are less often diagnosed, because every symptom is put into the dustbin diagnosis of menopause. I also think younger people get diagnosed more often because they have energetic and determined parents to advocate for them. Being gaslighted is hard enough when you aren’t brain-fogged and exhausted.

Things got worse still with COVID. The infection itself was a challenge, but it was the strict French lockdown that did the most damage. When things reopened I caught several infections one after the other and then I couldn’t make a cup of tea without sinking to my knees. I was researching rare heart conditions when I found POTS. My cardiologist rolled her eyes, but she checked me for symptoms and agreed it was a possibility. I had a tilt test at a local hospital. My pulse was 60 on the horizontal, and peaked at 93 upright. With hindsight I think it only got that high because I was bracing my arms and legs very hard to stop myself blacking out. Eventually I stopped that and let the faint happen. My heart rate measured 44 at that point.

In almost every article I have read the diagnostic criterion of +30/40 is quoted as a certainty, but there is no scientific justification for it that I can find. It is an invented certainty.

I was offered beta blockers but with a resting heart rate of 55 and no experience of palpitations I refused them. I asked if I could try midodrine or fludrocortisone but the cardiologist refused as he believed I had hyperadrenergic POTS. I told him I disagreed. (This is always a good idea.) The last thing he said to me before leaving the room was, women your age don’t get POTS. Yet, there I was.

Like many POTSies I self-medicate based on wild guesswork. I take a balanced electrolyte powder and all the B vitamins because I get through several litres of fluids a day so I lose nutrients like an over watered plant. I supplement vitamin D year round. I eat lots of salads and bone soups for my intestinal flora and vitamin C. I take granular lecithin and a natural anti-cholinesterase called monnieri bacopi to increase acetylcholine, as I suspect the receptors for this neurotransmitter are the ones being damaged by my rogue antibodies. This helps a lot with brain fog. I also use liquorice and horse chestnut extract to help constrict my arteries, and strong coffee for an extra boost. I take minimum supplements of oestrogen and progesterone as I feel better with the progesterone, and I know some oestrogen is necessary for acetylcholine production.

I’ve stopped trying to explain POTS to people. Reactions come into three categories. The first will accept whatever you tell them and adjust to your needs because they trust and respect you. The second type will get angry at your claim to have different needs to other people and will get angrier the more you try to explain. As a psychologist I would love to get to the bottom of this one, it is so fascinating. The third category don’t care either way because it isn’t their problem. But whatever their attitude, none of them wants to hear about rogue antibodies, muscarinic receptors and vasoconstriction. Their eyes glaze over. I can’t imagine why. Meanwhile, I still keep my golf clubs by the front door, gathering dust. It is an act of desperate hope.

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