Our forum has been discussing this lately and I must say that I dismissed it initially before at long last going on to read his research/analysis with more attention.
I was intrigued because I have documented evidence of an unusual response that I had when I was temporarily put on Seroquel / Quetiapine to deal with my psychiatric symptoms. I was absolutely on cloud 9 the morning after the pill and a great night's sleep and did not need medication until the afternoon. Consistently! I had no trace of Parkinson's for the duration.
I reported to my doctors who dismissed it and refused to entertain the thought that this medication was actually helpful in controlling my symptoms. In addition, one doctor, laughed and said that it was a dopamine antagonist that blocks dopamine receptors. So, how could I claim that I was getting a symptoms benefit. He chalked it up to my own dopamine production getting better due to a great night sleep. The thing was that I could not dispute him. I used to sleep like a lot. But I still woke up drowsy, yet I felt like I was just normal.
Now, we have come across this new postulation/theory that the way to treat our condition is to reduce the production of dopamine! I don't know how the blocking of dopamine receptors could interfere with or reduce the excess dopamine inside the cells. All I know is that Quetiapine worked very well. However, the side effects are tough to handle. It causes intense drowsiness and weight gain and not really good for diabetes 😢
I have half a mind ( pun not intended) to go ask my doctors to prescribe it again off-label, based on Dr. Sackner-Bernstein's research. 🤓
Thoughts? Anyone have a similar experience with Quetiapine?
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One dose per day at 25mg at night for about two years and I saw results on the first day. This was early on during my diagnosis of Parkinson's - the initial years.
Well you know that is really kind of interesting. Quetiapine is the least dopamine blocking of the dopamine blockers, i, is an "atypical" antipsychotic, and all antipsychotics made, the main feature is that they block dopamine. They vary in which mix of receptors and how much of each receptor they block, thus vary depending on the particular area of the brain involved because different areas of the brain involve different proportions of the various dopamine receptors...but Seroquel is the least dopamine blocking of the bunch and after a certain dose it doesn't affect any more than that lower doses, about 40-50 percent of the receptors dopamine action capability. And it IS used as a sleep aid by psychiatrists and neurologists.
However, it's usually completely contraindicated for someone with depression, whose problem to start with is insufficient dopamine... For those patients, it's a fast track to serious suicidal urges and it shuts you down like, well, just like the people who started out in that movie Awakenings, and for pretty much the same reason, lack of dopamine.
It was suggested for me for my insomnia but I knew a little something about the mechanism so I was very resistant to trying it, but I let them give me one pill 25 mg and what I did was I just bit off a tiny part of the round, which I'm sure you know is difficult to do because a 25 mg pill is already about as small as a half a BB, its really hard to bite off just a little without fracturing the whole pill into tiny little pieces. I probably got 5-7 mg. into me. Well it's a good thing I was so recalcitrant, that little fourth of a dose knocked me out for 18 hours and I was groggy and completely non-functional the rest of the day as well. But then, I had reason to be suspicious, I've had treatment resistant depression for many years so you would expect that effect on me with Seroquel (not that the doctor minded running the risk, plus not even mentioning it to me, not even bothering to bring up there was a risk, as*hole), and that's what I got... So after that anytime a psychiatrist or neurologist suggests Seroquel to me for sleep, well they are specialist experts in this and so they are supposed to be aware of these things and should know better...so to help them get back into thinking of the total patient picture on risks as well as benefits, I asked them (actually happened on TWO occasions if you can believe it) if they had their professional liability premiums paid up... Yes I know how would anybody dare to talk to a doctor that way... but I grew up with them and then worked with them for most of my adult life... Anyway those two times, they certainly starting paying closer attention after hearing that. (Such moments are very rare and are to be savored, somebody else was talking about smug, patronizing neurologists just earlier in this string... I guess the only way to think of it is that Mac Davis country song that goes "Lord it's hard to be humble."
But then look how well it worked for you and for 25 mg a night for 2 solid years. And Parkinson's being a dopamine shortage, so that really is a little counterintuitive... kind of reflects a little bit on that doctor who says at some point there may be a dopamine excess inside the dopamine producing cell... Is that Dr. Sackner? Really makes you think.
👍 With this information, your doctors should stop laughing pdpatient. Who doesn't know that sympathetic look, which makes you think twice about sharing possible PD effects with them next time. At the very least, an apology is in order because these studies and conclusions paint a completely different picture:
New research has found that the anti-psychotic drug quetiapine can bind to normal GCase protein and increase its activity. Exactly how it is increasing the activity still needs to be determined, but quetiapine was able to rescue cell culture models of Parkinson’s.
Quetiapine treatment also increase levels of GCase activity in the brains of mice, and reduce levels of alpha synuclein accumulation in a Parkinson’s mouse model.
The researchers concluded their study by suggesting that their “findings highlight the potential value of quetiapine as a therapeutic approach for different forms of PD, including familial and sporadic PD. Future clinical studies will be required to fully evaluate quetiapine’s potential for the treatment of PD and to define appropriate doses for long-term therapy”.
"New research has found that the anti-psychotic drug quetiapine can bind to normal GCase protein and increase its activity." What research? Citations please if you can point to some.
Very interesting! I tried to promote Sackner-Bernstein's theory on here and elsewhere when I first read it and then wrote to him about his funding problems. I suggested then he'd run into a brick wall due to his background in Cardiology. How could a Cardiologist know anything about our field of expertise!
But as any problem solver worth his/her salt knows, sometimes turning a problem on it's head is a very valid technique and the sure fire way of testing a theory is to test it!!!!!!
Could it be the solution is staring the medical profession in the face but they won't (not can't) see it?
Unfortunately, I don't know what will happen next. Anytime we report any response or reaction to the medications or any kind of strange observation, we end up being ignored. Time is the only hope.
Yes, sadly that does appear to be the way! I can't help but wonder if the money men have a big say in what happens next. Lots of money to be made managing various conditions rather than curing them!!
my hubby took quetiapine for a short while but it made him so manic and crazy in the night he stopped it again. He didn’t even know where he was or what he was supposed to be doing and was trying to escape and kill himself all the time. Nasty.
Incidentally the same reaction he had to too much madopar when he was on the HBS madopar. As you say, probably too much dopamine.
Now that is more in line with the reaction to quetiapine I know about, I mean for people who have something known to not mix well with a dopamine blocker. One time somebody tried Lexapro on me, and put me in the emergency room for a day acting like your husband... not an anti psychotic, but an antidepressant along the lines of stimulation, serotonin reuptake inhibitor but not that well understood at the time. I did not yet know I had Parkinson's at that time, this was in connection with severe treatment resistant depression. In my case it's too little dopamine. Maybe there is some kind of a regulation or interaction problem at that.
I have taken Quetiapine for almost five months now, primarily to aid in sleeping. Although it has helped me sleep, I see no improvement in my PD symptoms. Maybe I should try taking it not just at bedtime but in the morning too & see if it makes any difference for me.
I tried to take it during the day as well and it made me drowsier and I didn't see additional benefit. How much dosage are you taking? I was on the minimum dose.
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