The Reality of Going Undiagnosed & A Chance Encounter – Guest Post by Unwanted Life

Unwanted Life’s guest post is the 38th post in the segment on my blog, called “The Reality Of…” which gives others the ability to share their story and raise awareness of the disabilities, illnesses, impairments and invisible illnesses that they have.

Meet Unwanted Life!

Myself and my blog are known as Unwanted Life (Link below), and I’m a UK blogger who blogs about mental health, physical health, invisible disabilities, dyslexia, and related content.

Unwated Life's logo. A skull outlined in red. The word 'unwanted' is in red, the word 'life' is in black

My Story

I’ve been plagued with several mental and physical health problems, but it wasn’t until recently that I met a medical health professional who was willing to take them seriously (my neurologist). Before that, all my physical health complaints had largely been dismissed.

I first went to my GP in 2007 due to becoming so weak at work that I’d be unable to move for about 30 minutes. My GP suggested a couple of things, didn’t order any test or anything and then dismissed my health concerns. After a while, I eventually stopped trying to get answers and help with the health problem.

Then, in 2013 I started getting chest pains. The pains started on the right side of my chest as a stabbing pain. However, after a month, this changed to a feeling like someone with kicking the inside of my ribcage 24/7: some pretty intense heart palpitations.

So, I went back to my GP to sort out my chest pains and explained the losing muscle weakness I’d previously reported in 2007, which was still affecting me.

This all eventually led to me being diagnosed with Sinus Tachycardia and Supraventricular Tachycardia. Fortunately, my heart problems could be managed with my medication, unless I become too stressed. However, the muscle weakness problem didn’t go away with the medication, as my heart palpitations did.

At this point in the diagnostic process (which was dragging on for years), I tried to get back in shape by going to the gym. This, in part, was due to the advice I was given to try and strengthen my muscles and heart through exercise by one of the cardiologists I’d seen.

But It was a total nightmare. Every time I tried to work out, I would suddenly feel extremely dizzy, my balance would go, my eyes would feel different, and I’d start to get complete muscle weakness. Which would lead to me being unable to move and losing my bowel and bladder control.

When that happens, I have a few minutes to get to the gyms toilets to sit down as all my muscles would become so weak that I could no longer support my head, my bowels and bladder would open up, and I’d come close to blacking out. This would last, on average, 40 minutes. It was a more extreme version of what I reported to my GP back in 2007.

Because none of these symptoms went away with my beta-blockers that controlled my palpitations, I was referred to the neurologist department. It’s due to a fortunate encounter with one of the neurologists I saw there that I was referred to an autonomic disorders specialist, where I was quickly diagnosed with Autonomic Dysfunction and was referred to a series of other specialists and tests.

These tests showed that I had several other health problems, resulting in me being diagnosed with Persistent Postural-Perceptual Dizziness (PPPD) and Reactive Hypoglycemia, so far.

When I was told I had Reactive Hypoglycaemia, a lot of things suddenly clicked into place. For several years I had started to notice that I needed to eat every 4 hours otherwise I’d feel extremely unwell. Previously, I had been tested a few tests for Diabetes, but they all came back negative. Thus, I had started to wonder if I had Hypoglycaemia, but my GP had dismissed that too.

If it wasn’t for that chance encounter with that one neurologist (you often don’t see the same specialist at each appointment, even if it’s within the same specialist department) who then referred me to the autonomic disorder specialist, I might never have found out I had Reactive Hypoglycaemia or even PPPD.

As I mentioned before, I have mental health problems, two of which are anxiety disorders (Social Anxiety and Agoraphobia). These mental health disorders react badly with my PPPD and my Reactive Hypoglycaemia. They’re capable of interacting with each other and causing a negative feedback loop. Which isn’t ideal, because my anxiety disorders can cause psychotic episodes.

So, when I have one of those horrible episodes at the gym when I’m trying to work out, it was my PPPD that triggered the dizziness, balance, problems, muscle weakness, etc. (although at the time I had been blaming my heart problems). When my PPPD triggers these episodes, they then trigger my anxiety disorders which would then vamp up the intensity of the PPPD symptoms, which then, in turn, would further vamp up my anxiety disorders, causing the feedback loop that would almost cause me to blackout.

The same would happen if I’m having a bad hypo. Whereby I’d suddenly start to feel really weak, my mind would become foggy (which I can feel happening like a physical wave moving through my brain), I start to burn up, I become dizzy, my balance would go, I feel like I’m going to vomit, and I’d feel like I’m about to pass out any minute.

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This too would cause a negative feedback loop, causing my anxiety disorders to join in on the fun. This, again, makes these sensations worse, and the worse these sensations get, the worse my anxiety would then get.

In short, anytime my dizziness or balance problems get even a little too bad, or if I come down with a cold or the flu, out comes my anxiety disorders to make it all worse.

How It Affects Me

How does this affect my day to day quality of life? Well, my life is a 24/7 battle with always feeling dizzy, off-balance, and feelings of travel sickness when I walk or scroll through my phone. Where my mental health and physical health problems negatively interact with each other to further ruin my quality of life. As well as my medication has turned me from someone who struggled with insomnia, to someone who felt tired all the time and struggles to stay awake instead.

The most annoying this about my anxiety disorders is that I’d worked hard on self-therapy using a combination of graded exposure and metacognitive therapy to stop myself having constant psychotic episodes. Now, one of my biggest triggers is my physical health problems, which affect me 24/7.

Because of all this, I’ve changed. When my palpitations started, I had to quit my job (substance abuse recovery worker) because it was so debilitating. I haven’t returned to work yet because I still don’t know how to manage my PPPD and Reactive Hypoglycaemia so I can do my work without it affecting my client’s recovery.

I’ve also put on a lot of weight because I can’t even do basic exercise without feeling incredibly unwell and having to stop. It’s a struggle just to walk due to how difficult the dizziness and nausea makes me feel.

My Favourite Villain

Anyway, as requested for the spirit of the blog, UndercoverSuperhero, my favourite superhero or supervillain is…

Harley Quinn closely followed by the Joker. I don’t really have a specific superhero that I like, but I do have specific villains that I love.

Unwanted Life's logo with a darker background

Thanks Unwanted Life for sharing yoor story with my readers and me!

If you would like to stay up to date with Unwanted Life, then you can find them on Facebook, Pinterest, Instagram, Ko-Fi and their blog!

5 thoughts on “The Reality of Going Undiagnosed & A Chance Encounter – Guest Post by Unwanted Life

  1. A fantastic guest post, but I’m so sorry you’ve been through all of this. I’ve also experienced going undiagnosed for many years. It can have a drastic knock-on effect, significantly impacting life years later. Thank you for sharing this with us  ♥
    Caz xx

    Liked by 1 person

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