I was put on quetiapine in A&E when experiencing overwhelming suicidal thoughts post break up. I have BPD. I thought nothing of it, they checked my heart with an ECG and gave me the all clear to take it.
Over time, me and doctors slowly increased my dose whenever things got worse. I did not realise I was having worsening heart issues. I was told it was just anxiety. I wish I'd paid attention to my body.
I took quetiapine before bed, if I didn't eat a full meal with it I would wake up an hour later super hungry, as I would go to grab something to ease it I would almost pass out. I didn't think it was anything serious. Until after a dose increase I felt unwell, I checked my heart rate and it was 150. It wouldn't go down. Eventually I went to A&E where it was 167 after 2 hours. One of the doctors looked at quetiapine and said it was probably that.
I asked the doctor that discharged me if quetiapine might be to blame, he said no. I ignored him and began slowly lowering my dose. As I researched online it had a history of causing heart problems. So I trusted my gut.
I begged doctors for a psychiatric review to change medication. I was refused as it's "impossible" so I continued to slowly lower it.
One night I wore my fitbit and had this episode of hungry and dizzyness. I looked at my fitbit, my heart rate was again, 150. I ate and it went down. I realised all these years what I was feeling was high heart palpitations and I had no idea. I then contacted my doctor again and explained this. They IMMEDIATELY reffered me to the mental health team was it was "alarming" I now am seeing a psychiatrist next week to review. Its taken 6 months of asking many professionals if the quetiapine could be to blame. Heart specialists wouldn't answer, GPs wouldn't, A&E doctors wouldn't.
I had one more episode in the 6 months which I ended up in hospital again. But I have slowly and safely been reducing my medication and finally at half the dose I was on 6 months ago, my heart issues are slowly resolving. My resting heart rate is much lower. My heart rate doesn't shoot up whenever I move. And so far I've not had it shoot up in my sleep. I also don't feel my heart beat when laying down as much.
So please if you feel something is wrong, don't let doctors push you off as just "anxious" be aware but not paranoid of your possible side effects. Every medication is different for everyone. This is a rare side effect but it's a real one.
The point of this post is just don't be afraid to fight for support from professionals. Educate yourself, write things down and figure things out and take the rational notes to a professional and make them aware.
