Cassie’s story on living with POTS

I have had tachycardia and fainting issues since I was 15. After my bcg and hpv injections, I was struck down by flu, shingles, glandular fever and many bouts of tonsilitis, one after the other. At 15 year of age, I was diagnosed with vasovagal syncope and told I would grow out of it and to manage it on my own.

I always struggled with fainting and fatigue. I went to university and worked for as long as my body could cope. When I was 22, I fell ill with a severe chest infection and flu. I was diagnosed with post viral fatigue and depression. Because I couldn’t even sit upright in bed or stand upright without collapsing. I struggled to swallow my food, brush my hair, or function in any normal way. I was prescribed Fluoxteine. The doctors believed that I lhad become deconditioned and that I was very anxious and depressed. This is despite the fact I tried my very best to mobilise as best as I could.

I fainted and was having twitching fits and my parents were at their wits end with my doctors not helping me and saying I had to calm down. They sent me to hospital numerous times till they eventually kept me in. Every time I tried to sit upright my heartrate would reach 200 beats plus per minute. It was just automatic. My parents then decided that they weren’t going to accommodate the hospital in taking me home- until they figured out what was wrong. I couldn’t go home myself. It was just too dangerous, as I would faint all the time. I saw numerous specialists. I then was diagnosed by a neurologist as having fibromyalgia and occipital neuralgia and M.E. They sent me for a psychiatric assessment. the psychiatrist felt the hospital was wasting her time; she said my mental state was as expected for someone bedbound and that my problems were entirely physical. And she deemed that my issues were related to my heart and not depression or anxiety. My neurologist came to see me one morning and told me that there was a syncope doctor interested in my case. They believed I had POTS. I was referred to a doctor who not only knew about the condition but was actively fascinated by it. She took me under her wing, had me brought into her clinic the following day. She diagnosed me right away with an active stand and tilt table tests. The doctor gave me fludrocortisone which helped me initially. I managed to finally be able to sit upright and walk small distances once again. I had to come off it however, due to dangerous weight gain on it as my dose was increased.

When I was about 25, I started developing issues of allergies, hives and swelling. I was told I had allergies to cats and dust.

I tried to combat POTS with the recumbent exercise method -this worked reasonably for me until I was given the flu jab, as advised by doctors. This rendered me bedbound for 6 months . I had to rebuild all my strength and work from being bedbound to being able to walk small amounts again. I never had the energy to be thorough with exercise again. I do try at least mobilise slightly everyday now.

At age 30, I was diagnosed with Spontaneous Chronic Idiopathic Urticaria and Angieodema -I was told my mast cells were not doing their job correctly. My Mum has just developed this condition this year too, along with fainting- which is strange. Antihistamines did help a lot but I still get anaphylaxis and need to go to hospital despite antihistamines. I also have Ehlers Danlos Syndrome hypermobility type.

I am no longer bed bound- but I need to use a stick for balance and gait. And a wheelchair for any distances greater than about 200 metres.

I’m currently not on any meds for my pots. Except fluoxetine- was told that would help with serotonin levels and blood pressure.

I became very interested in your channel, because you were one of the very few knowledgeable doctors speaking in depth about POTS. It was refreshing.

I have a fear of medications due to adverse reactions (very prone to them and weight gain). Hearing that you’d some success treating pots patients was very encouraging to me. After this pregnancy, I intend on maybe taking up some medications for my condition. Because I don’t have much to lose and maybe it would calm the massive heartrate increase of 200 beats per minute standing or walking.

You give people hope! Thank you. I found your Sleeping With The Enemy series on Youtube really helpful. I do have dreadful quality of sleep. Pregnancy has afforded me to be a little more mobile than usual with my POTS. I feel less dizzy – which is strange because I was told that I would feel far worse! 🙂 I avoid my extremely heavy monthly periods, which I think may be part of my trouble. As I’ve always been anemic, with no real explanation.

Thank you for taking an interest!

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One Comment

  1. margaret joyce 25th August 2018 at 5:30 pm - Reply

    “After bcg and hpv injections”……most important aspect of your story!

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