Tardive dyskinesia. Been on the causa... - Mental Health Sup...

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Tardive dyskinesia. Been on the causative med quetiapine 400 mg for 20 years.Unable to get off it. Been creative. I am a registered nurse.

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I am an inpatient acute mental health nurse actually - for the last 15 years. I also have Bipolar disorder on lithium. Very well controlled. But side effects of quetiapine were becoming impossible to live with. I tried aripiprazole and a reduction in quetiapine to a disastrous effect. I appeared severely cognitively impaired with slowing and all the classic TD symptoms of tongue movements facial tics.

Approx 10-12 yrs previously I had dealt with akathisia (associated with panic, treated with low dose clonazepam (0.25 mg an hour or so prior to quetiapine) and metoprolol (23.75 mg mane as I could not take propanolol due to asthma)) and dystonia with regular benztropine each night not just prn as I might lose control of my limbs and suffer a very traumatic painful event. One did lead to a medical admission and regular benztropine.

Probability of TD on quetiapine is very low 0.2 second only to clozapine 0.1. I joined a support group in USA where there are a few with this experience. In USA they can have Ingrezza and Austedo. Neither of which are available in NZ have to import them. Ouch. Tetrabenazine is in NZ and its profile for success and sideeffects less good and unfortunate.

In hospital the pharmacist and psychiatrist collaborated and stopped my asthma med that I took so I could breathe on the ciggie smoking ward workplace. They stopped it as it has terrible side effects possible interactions with TD. A laugh - not really funny - on my admission to an acute ward it was smoky too I got very upset I nearly assaulted a charge nurse when she wanted to move me to an area I had seen people smoking in. The manager did try most days to escort smokers out. What is wrong with a DVS type system or alarms in rooms/toilets. Passive smoke. Bad for nonsmoking or respiratory ill clients and staff. This was last year 2023.

They stopped benztropine as it can make TD worse. Determined I was not tolerant of my low dose clonazepam. Things slowly improved but I was 52 kg distressed by my appearance I wanted to die. Medical retirement in the offing.

We tried high dose (150 mg) pyridoxine which did gradually work but I got a bad response when trying food supplements with it (liquid diet trouble swallowing) in it I started falling about unable to cope on uneven ground sensation in my feet impaired. Stopped it TD back in three days. So I tried its metabolite p5p. Much more successful. Covered symptoms quickly. Whoopee. TD doesnt get healed just disguised. I also tried Vit E. I noted labile mood. I tried sertraline after crying 4 days. Three small doses and I was Tic ing away. Read up on Vit e it is actually 8 compounds Tocopherols (4 of them) most used can be associated with labile mood. It is the tocotrienols which potentially have neuro protective effects and less of issues of tocopherols. They expensive though. Wow my mood steadied just like that over two weeks. I temporarily increased the p5p and things settled down again and I cautiously went back to my lowest effective dose. I notice a few murmurs of symptoms under physical strain (I am so unlucky two ankle fusions lots of pain in my preferred horsey lifestyle). When I do things like lifting hay moving feed moving manure to my garden lifting the trailers etc.

The suicidality is in abeyance but I have to restart my drivers licence so I am a bit isolated with my horses on 18 acres in Kumeu. Makes it hard to work. Annoying when discussing use of vitamins with GPs medical professionals. I am not taking them because I am deficient. Using them as a drug. Be very careful with medical supervision and systematic if you try these yourself. Nassty effects may come out of the woodwork. I have never seen someone so affected as I have been by antipsychotics with TD and dystonias in my 15 years on a large inpatient acute mental health unit.

Kia Kaha darlings if this is you.

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