[Tart Cherry Jam]

I have posted before about my propensity to EPS, most recently on Latuda, and my psychiatrist has been researching ways to help with this.

What he discovered is that there are studies that demonstrate that vitamin B6 is as effective as propranolol in ameliorating EPS.

I cannot take propranolol or other beta blockers because I already have a tendency to low blood pressure. Just two days ago I had 98/74 and I cannot risk going below that.

There are apparently three versions of B6 and unfortunately in the articles about the studies the authors do not say which variety was used.

There is also toxicity at high doses so one has to be careful.

I will research this issue and start a trial of B6. Wanted to share this with others who might suffer from EPS and be taking anticholinergics for that.

[BeyondtheRainbow]

Thank you! While I don't think this is EPS I am having pretty significant hand tremors that my pdoc thinks are related to my clozapine. We're adjusting the dose and doing labs but I will ask her about this as it's a pretty harmless thing to try. I'd much rather try that than cogentin. I also can't take propanolol because of a low BP.

[Tart Cherry Jam]

Originally Posted by BeyondtheRainbow

Thank you! While I don't think this is EPS I am having pretty significant hand tremors that my pdoc thinks are related to my clozapine. We're adjusting the dose and doing labs but I will ask her about this as it's a pretty harmless thing to try. I'd much rather try that than cogentin. I also can't take propanolol because of a low BP.

Yes, I know about your low blood pressure.

Cogentin and other anticholinergics might be implicated in Alzheimer's disease if taken long term, my psychiatrist says. And I do not need that. I already have Alzheimer's in family history and a genetic mutation of Alzheimer's. I am trying to avoid increasing the risk. Vitamin B6 sounds innocent in comparison.

He sent me info about toxicity. It has been noticed only at levels above 1 g and only when supplementation was with pyridoxine, one of the 3 forms of Vitamin B6. And in studies of the anti-EPS effects, dosages around 300-600 mg were used. So I think we are in the clear.

I also had significant hand tremor in the past (at least as bad as what my late grandma had after the stroke in her seventies), but mine was due to Depakote. It fully resolved after I stopped Depakote.

[Tart Cherry Jam]

This is what my psychiatrist wrote:

I think it makes sense to take this with a general B complex supplement. I found some material that B-1, B-6 and B-12 work synergistically in benefitting nerve cells.

[rwwff]

Originally Posted by Tart Cherry Jam

Cogentin and other anticholinergics might be implicated in Alzheimer's disease if taken long term, my psychiatrist says.

I was taking Cogentin for quite a while, but it really started to beat up on my memory and cognitive function. Had to stop. Effect seems to be going away with time, been about three months now, I think, without and folks around me can tell my memory and sharpness have improved.

Leaves me with the stupid tremors though. Adding a B complex to the mix shouldn't hurt anything. Worth a trial.

[Tart Cherry Jam]

Originally Posted by rwwff

I was taking Cogentin for quite a while, but it really started to beat up on my memory and cognitive function. Had to stop. Effect seems to be going away with time, been about three months now, I think, without and folks around me can tell my memory and sharpness have improved.

Leaves me with the stupid tremors though. Adding a B complex to the mix shouldn't hurt anything. Worth a trial.

I am so glad your memory side effects seem to be reversible. Yes, let us try a B complex.

[rwwff]

Well, been a few days and it seems to be having an effect; its not cogentin level stillness, but its not harming anything as far as I can tell.

[Tart Cherry Jam]

I have had bloodwork done and based on it, I ordered the B complex today and B6. Between the two, I will be taking 350 mg of B6.

My B12 level is 288, which is borderline low. The normal range is 200-1100. I do not understand why it is so low given that I eat plentiful animal foods.

My folate is 7.4 which is also borderline low. The normal range is 3.4 to 40. Again, unclear why as I eat a good diet. I would like to increase my level.

Apparently, both folate and B12 are implicated in cognition. I do not want to mess with that for sure.

There might be some malabsorption going on due to some meds. I don't know. I am just going to start taking B vitamins and retest in a few weeks. I have been told by an advisor at the supplement company, who has a PhD, that B vitamins levels respond to supplementation very fast.

[Soupe du jour]

Are you referring to just akathisia, or have you also experienced a dystonia or tardive dyskinesia (TD)? For akathisia, there are other options than just beta blockers. Cogentin and I think one or two others, are examples. I was once on Cogentin, but it gave me such severe constipation that I had to stop. Plus dry mouth.

I have no problem taking beta blockers, but they simply weren't effective at calming my akathisia. They did help my medication induced hand tremors, but they are a different animal. Benzos also helped calm past akathisia, but nearly well enough. Plus, I don't think benzos are a good strategy.

For tardive dyskinesia, I recently saw some TV advertisements for new medications. Ingrezza was the most advertised. I've never had TD, but did briefly have a minor dystonia. My psychiatrist simply took me off the medication that caused it. It was a 1st generation antipsychotic.

Have you ever tried Seroquel (quetiapine) or Seroquel XR? I ask because it's known to be less likely to cause akathisia (and other EPS) or hyperprolactinemia than other antipsychotics. This is absolutely the case for me. Most all other APs I tried (a lot) caused one of these.

[Tart Cherry Jam]

I use 50 mg of Seroquel for sleep with great results.

high doses of Seroquel gave me absolutely horrible akathisia in the past. It was torture-like. I know I was unusual in my reaction. I later retried Seroquel with Gabapentin which calmed down akathisia, but Seroquel was not effective as a mood stabilizer for me.

What I am referring to now as EPS is this weird sensation of my limbs becoming stiff and the subjective feeling that my body is about to go into a spasm. I also feel that I am not in control of my body. I wonder if this qualifies as dystonia.

I do not have TD but I have had instances of transient dyskinesia from combining APs with marijuana. I no longer use marijuana.

[Soupe du jour]

Originally Posted by Tart Cherry Jam

I use 50 mg of Seroquel for sleep with great results.

high doses of Seroquel gave me absolutely horrible akathisia in the past. It was torture-like. I know I was unusual in my reaction. I later retried Seroquel with Gabapentin which calmed down akathisia, but Seroquel was not effective as a mood stabilizer for me.

What I am referring to now as EPS is this weird sensation of my limbs becoming stiff and the subjective feeling that my body is about to go into a spasm. I also feel that I am not in control of my body. I wonder if this qualifies as dystonia.

I do not have TD but I have had instances of transient dyskinesia from combining APs with marijuana. I no longer use marijuana.

I would think/hope that your psychiatrist could determine which EPS it is. I would imagine that answer would help in determining the best treatment. I know there are a wide variety of medications used for such conditions. Perhaps something not yet tried would help more.

I've had akathisia from a few antipsychotics, with Geodon causing the most torturous case. When I had the dystonia crop up, mine showed as involuntary lip puckering, but I think dystonias show up in various ways/places. My doctor stopped that antipsychotic and the dystonia stopped.

[Tart Cherry Jam]

Originally Posted by Soupe du jour

I would think/hope that your psychiatrist could determine which EPS it is. I would imagine that answer would help in determining the best treatment. I know there are a wide variety of medications used for such conditions. Perhaps something not yet tried would help more.

I've had akathisia from a few antipsychotics, with Geodon causing the most torturous case. When I had the dystonia crop up, mine showed as involuntary lip puckering, but I think dystonias show up in various ways/places. My doctor stopped that antipsychotic and the dystonia stopped.

From combining Geodon, Zyprexa and THC once, in a desperate attempt to bring on sleep, during a crisis following my last suicide attempt in 2017, I had involuntary sticking out of my tongue. That scared me. I thought it was TD. It wasn't, thanks god.

With the current reaction, my psychiatrist is at a loss. He cannot determine what it is. It is so weird. But he thinks it is EPS and advised to start with B6.

He does not want to give me Cogentin because he thinks that that might increase my chances of dementia. I already have a genetic predisposition to dementia.

[rwwff]

Just to chime in a bit late, but I stopped Cogentin for exactly that reason. It started to really beat up on my memory and cognitive ability. I was already in a bit of a whole because my kidney damage had caused me to score a "Mild Cognitive Impairment" diagnosis with the neurologist. Cogentin was not playing nicely with me given the circumstance.

B6 seems to be helping still, not complete relief, but it seems to be keeping the worst of it at bay. Maybe playing with my AP/AD combo would be better, but they work so well without being overpowering, I'd hate to have to start all over.

[Tart Cherry Jam]

I have received my shipment and am starting B6 and B complex tonight. I hope it goes well. I have also learned that the newest AP kid on the block, Caplyta, has an unusually low tendency to cause EPS. So that might be an option in the future.

[Tart Cherry Jam]

I have been taking B6 and B complex since last Monday. So far, knock on wood, I have not had an instance of EPS, but of course it is too early to tell.

[Exoskeleton]

That's interesting. I take Vitamin B6, but not for EPS, even though I have some EPS (RLS and Akathisia). I take B6 as part of a preventative plan for calcium oxalate kidney stones, which I've had twice over the last 3 years. It certainly isn't helping my EPS, but I only take about 200 mg of B6 per day, which seems like a very low dose. Knock on wood it's helping to keep the kidney stones at bay so far (together with some other changes I've had to make to my diet etc etc).

What is the dose of B6 for EPS? I am certain my EPS comes from years (decades) of SSRI and/or SNRI use, specifically Sertraline, which has a strong correlation with TD and other EPS conditions. I've recently started Lithium which has exacerbated my RLS.

Anyhow, I'm so glad the B6 is helping your EPS!

[Tart Cherry Jam]

For EPS, the dose is 300-600 mg. I am taking 350 mg. But do not take more than 600 mg as it gets toxic at high doses. I am very sorry to hear you have EPS through decades of AD use...