‘I built a functioning life on dexamphetamine. Then my heart said: not anymore.’
This is one of those stories I wish I didn’t have to write.
But if you’re a neurodivergent woman navigating burnout, chronic illness, or the sudden loss of the one thing that helped you keep it all together, then this one’s for you.
ADHD Medication Helped Me Survive. Then It Nearly Killed Me.
If you’ve followed me for a while, you know my diagnosis timeline reads like a medical bingo card: ADHD → Autism → Hypermobility → Lipedema → RYR2 gene mutation.
And it’s that last one—the rare heart gene—that changed everything.
In July, after my second lipedema surgery, I had an SVT episode (that’s supraventricular tachycardia, a dangerously fast heart rhythm). No warning. No symptoms. One second I’m waking up from anaesthesia, the next I’m being shaken by doctors and told my heart rate had hit 150+ bpm.
After follow-up genetic testing, I was diagnosed with RYR2, a rare mutation that affects calcium handling in the heart and can cause life-threatening arrhythmias—even in people without symptoms .
Why This Matters for ADHDers
The problem? Stimulants like dexamphetamine, which many of us rely on, can exacerbate heart rhythm issues.
For me, that meant I had to stop—cold. No transition plan. No alternative meds. Just… stop.
And that’s where the grief began.
Executive Dysfunction With No Lifeline
Here’s what life is like without the medication that held my brain together:
- Sending an email feels like walking through mud.
- I stare at my laptop for 40 minutes and still can’t start the thing.
- I forget to eat. Forget to call back. Forget why I opened the fridge.
- I’m slower, foggier, more emotional, and constantly overwhelmed.
And the worst part? I keep comparing myself to the medicated version of me. The high-functioning, organised, focused version I fought hard to build.
But she’s gone for now. And I have to figure out how to live here.
This Isn’t Just About Me
This is about every ADHD woman:
- Who’s gone off meds due to heart issues, shortages, or cost
- Who’s been dismissed by GPs
- Who’s struggling silently while parenting, working, and masking the mess
We’re not broken.
We’re just unsupported by a medical system that wasn’t designed for us.
‘Tasks feel bigger. Conversations feel harder. Parenting feels heavier.’
Sound familiar?
How You Can Cope
If you’ve lost access to meds or can’t tolerate them anymore, here are some strategies that might help:
- Low-stimulation mornings (no phone for the first 30 min)
- Visual task boards (keep reminders in sight)
- Cognitive offloading tools like Google Calendar + alarms + auto-scripts
- Protein-rich meals every 4 hours to stabilise energy
- Permission to stop striving — you’re allowed to rest, cry, rage
But let’s be clear: these are workarounds, not solutions. You’re still doing this with one hand tied behind your back.
We Need To Talk About Medical Grief
No one warns you how devastating it is to lose the tool that let you function. The grief is real. And it doesn’t mean you’re not resilient. It means you’re human.
I’ve cried in hospital bathrooms. Snapped at my kids. Forgotten words mid-sentence.
And still—I show up.
So do you.
Connect & Share
Resources & References
Lipedema surgery information
- Check your symptoms – Lipedema Foundation — Clear, accessible checklist to help identify potential signs of lipedema and start informed conversations with health providers.
SVT (Supraventricular Tachycardia)
- Heart Foundation – Heart Arrhythmia & SVT — Evidence-based info on symptoms, diagnosis, and treatment for heart rhythm conditions including SVT.
Ehlers-Danlos Syndrome (EDS)
- Ehlers-Danlos Society Australia — Advocacy, support, and medical resources for people with EDS.
- Episode 41: ADHD + EDS and POTS – Spotify | Apple Podcast
- How these conditions overlap, with expert and lived-experience insight.
- Episode 62: Burnout, Pain & Weird Symptoms? The ADHD Link No One Told Us About – Spotify | Apple Podcast
- The hidden ADHD links to chronic pain, fatigue, and “mystery” symptoms.
RYR2 rare heart gene
- MedlinePlus – RYR2 Gene Information — Plain-language explanation of this rare genetic variant linked to heart rhythm issues.
