Living with tardive dyskinesia from quetiapine - RN life

Hey everyone, I'm an inpatient acute mental health nurse-been doing it for the last 15 years! And fun fact: I also have Bipolar disorder and am on lithium-it's super wll controlled, no worries there. But man, the side effects of quetiapne were just unbearable. Tried aripiprazole and reducing my quetiapine dose? Complete disaster-I ended up with some serious cognitive issues and all these tic symptoms like tongue movements adn facial tics.

A while back, about 10-12 years ago, I had akathisia from another med; it was super scary. Luckily, a low dose of clonazepam (0.25 mg) before bedtime helped with the panic attacks, and metoprolol kept my heart rate down since I couldn't take propanolol due to asthma. For dystonia, I used benztropine regularly every nght because one bad episode led to a hospital admission when I nearly lost conrtol of my limbs.

The thing is, the probability of tardive dyskinesia (TD) from quetiapine is low-only 0.2%, second only to clozapine at 0.1%. So, I joined ths support group in the USA where a few others are dealing with similar issues. They have access to Ingrezza and Austedo there but those aren't available here in NZ unless you can import them yourself. Major pain.

When admitted last year (2023), things were awful on that smoke-filled ward-I nearly went off on a nurse when they tried to move me to an area I knew people smokde in! The manager would try to escort smokers out every day but it wasn't much help with the passive smoke problem. Bad for everyone.

They stopped my benztropine too because it can worsen TD symptoms, and even at such a low dose of clonazepam, I had some bad reactions. It was rough, got down to 52 kg, and felt awful about myself. Needed medical retirement in the offing.

We tried high-dose pyridoxine, which worked slowly but when mixed with food supplements, it caused trouble swallowing and made me fall over a lot. Stopped that, TD came back quick as lightning. Then I switched to p5p (pyridoxal 5-phosphate) which was muuch better-covered up the symptoms fats! Also tried Vitamin E but noted mood swings. Sertraline helped with that for about fuor days before things got worse again. Turns out, vitamin E's tocopherols can cause those mood changes, while tocotrienols have neuro-protective effects-just more expensive though.

My mood stabilized pretyt quickly after that and I was back at my lowest effective dose. Still have some murmurs of symptoms when dealing with physical stfuf like moving hay or horse feed around-that horsey lifestyle is tough on the body!

I'm currently in a bit of an isolated spot, managing 18 acres here in Kumeu with just me and my horses-hard to balance work too. When talking vitamins with GPs though? Ugh, they don't get it that I'm using them as meds not for deficiencies.

If anyone out there is dealing with similar stuff-I'm your girl! Keep going darlings.