My tongue (& how I relate to Deirdre)
Deirdre’s tongue
So, Deirdre* was a lady on social media who felt a need to announce that she’d experienced her first nocturnal, tonic-clonic, epileptic seizure. I instantly felt for her. However, after reading the second sentence of her post I simultaneously rolled my eyes and just wanted to hug her and take her out for a coffee/chat! Deirdre had woken up to a nipped tongue and self-diagnosed a nocturnal seizure. What the…? I can comprehend why she self-diagnosed, but doing so isn’t useful. It’s potentially dangerous. She should have spoken to her doctor.
Don’t self-diagnose.
My tongue (& how I relate to Deirdre)
I started waking up with a bitten tongue a few years ago. Now, I also have epilepsy, so understandably thought - “Oh no, may I have now developed nocturnal seizures?”.
Notice how I am asking a question rather than self-diagnosing?
Anyway, I’m not a doctor of any kind, and I knew that a nipped tongue could be down to more than one thing. So, I just chilled out but shared the tongue-situation over a call with my epilepsy nurse (who I love!), who then was concerned enough to make me an early appointment with my neurologist. Long story short: I had an ambulatory EEG which showed no abnormal neural activity during the night. My tongue biting was down to me grinding my teeth due to stress/bad dreams/whatever!
I needed to try and chill and wear a sexy** mouth-guard.
I’m glad that I didn’t diagnose myself as having a new type of seizure. I would have worried unnecessarily (which could have caused me to have a real seizure), worried my friends, and not gotten a mouth-guard to protect my teeth!
I of course shared my story with Deirdre, recommended that she inform her epilepsy nurse or neurologist of her tongue-nipping (have I made up a new term? 😄) ASAP, and ask them what to do. Deirdre told me she was relieved to hear my story and recommendation. Hopefully, she received any help that she may have needed.
Key points:
If you do have or suspect any changes in your seizure occurrences or severity, it’s crucial to connect with and contact your epilepsy nurse/neurologist as soon as possible;
Know that one symptom often has several potential causes;
See a GP, who can then refer you to a specialist if necessary, or;
Talk to your specialist directly if you already have one (often the case when you have a condition like epilepsy, MS, etc.)
Managing my own potential silliness
I’d had suspicions that I may have had hypermobility for years. It’s an incredibly common condition where you are a tad bendier than most people (some people call it being double-jointed). It’s funny when people freak out seeing my elbows invert or my neck bending too far! Anyway, I digress…
So, my joints had started clicking and my back had started hurting, so after a few blood tests (as symptoms could have been down to a few things), my GP arranged me an appointment with a rheumatologist. The rheumatologist did, after getting me to do a few freaky movements, diagnose me with my original suspicion of hypermobility.
I hadn’t looked into it much prior diagnosis, because there’s so much rubbish online, as we know, but afterward I started reading papers about the condition and its link/confusion with Ehlers Danlos Syndrome. EDS is pretty rare but has distinct similarities to/links with hypermobility.
Hypermobility is a bit like grade 1 (music) and EDS is a bit like grade 8!
I was talking to a friend of mine, a rare disease QUEEN, about this and she said (paraphrasing):
Dude. Hypermobility and EDS, yes, they are linked, but people are not to be drama queens/kings and assume that ‘argh, I have EDS, the worst of the worst’.
Let’s avoid self-diagnosis. It’s more than a tad silly.
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Torie Robinson
Keynote Speaker, Podcaster, Epilepsy Sparks CEO, Editor, Writer, et al.
*Deirdre is a pseudonym.
**Sarcasm…