Seroquel for hallucinations?: Our Parkie's... - Cure Parkinson's

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Seroquel for hallucinations?

sonjadischer profile image
16 Replies

Our Parkie's Dr just prescribed Seroquel for morbid hallucination & anxiety. Does anyone have experience with it's effectiveness, or side effects. I know I can expect him to be more sleepy/ subdued. It is a smaller dose, from what I understand: 25mg @ bedtime. and prn dose of 12.5 with symptoms. Please advise.

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sonjadischer
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hopeful88 profile image
hopeful88

* I have updated this post to show that nuplazid is just as dangerous as other antipsychotics.

Seroquel, known by its generic name as quetiapine, is an antipsychotic and such drugs are known to NOT be particularly safe for the elderly. They're also known to be risky for people with Parkinson's.

A study using data from the US veteran's administration looked at elderly people with PD. The study found that those who were treated with Seroquel had a MORE than DOUBLED risk of death compared to elderly Parkinson's patients who were not taking the drug.

This is not surprising to me. If you try to block certain dopamine pathways in the brain (which is what Seroquel does) then bad things are much more likely to happen. A lot of other really important systems in the body depend on the pathways that Seroquel blocks, and that's why the increased risk of death is so high. Not to mention that in PD, most of the dopamine pathways in the brain are already under attack due to the disease, and taking the antipsychotic would only make this worse. All the other antipsychotics work this way too. A lot of medical professionals consider Seroquel to be a safer option DESPITE the more than doubled risk of death. The other antipsychotics have been shown to be even more dangerous than Seroquel. By the way, the study I am referring to is not the only one to find Seroquel to be somewhat dangerous. Another study looked at people with Parkinson's and found a similar conclusion, which was a fairly increased risk of death for those using the drug.

There is a much newer antipsychotic that has come out called Nuplazid (generic name Pimavanserin) that was shown be helpful in some cases when treating Parkinson's psychosis and hallucinations. Unfortunately we now know that it is potentially JUST AS DANGEROUS as the other antipsychotics. It more than doubles your risk of death for those taking it, according to research studies.

I realize that a fair number of people have nearly pulled their hair out trying to care for a loved one with Parkinson's psychosis or lewy body dementia. Sometimes you have to treat them if they're going to do harm to themselves or others. If I had such a loved one, I would try my best to explore other options besides Seroquel unless I absolutely had to. There are techniques you can use to calm and comfort someone who is suffering from delusions due to Parkinson's psychosis or lewy body dementia. And anxiety can be treated in much safer ways rather than by using an antipsychotic.

Here are links to the studies that I was referring to above:

ncbi.nlm.nih.gov/pubmed/269...

ncbi.nlm.nih.gov/pubmed/262...

ncbi.nlm.nih.gov/pubmed/261...

sonjadischer profile image
sonjadischer in reply tohopeful88

hopefull88 Thank you so much for your thorough explanation. I thought I remembered reading that seroquel works by blocking dopamine pathways. It seem really crazy to block them and then give dopamine tablets @ the same time! The idea seems to be that it's just OK to relieve anxiety by "drugging" the patient. I just have so much trouble with going through with is this, in spite of the Mayo Neurologist's advice. thanks again, also for the links which I will read.

dboobar profile image
dboobar in reply tohopeful88

Thanks for such a well written statement; you have a confident and calming way of explaining things. Are you PD patient?

rhyspeace12 profile image
rhyspeace12

My husband had terrible psychosis, he would wander 24 hours a day. He couldn't sleep and wouldn't eat.. He had horrible,morbid hallucinations. I thought he would have to go into a home. Both of our lives were hideous. He has been on 25 mg of Seraquel, taken at night for a couple of months, and he no longer has psychosis or hallucinations. He sleeps so much better . It started working quickly. First he was taking 25 mg. twice a day, then I cut it to 12.5 mg once a day, but he started being obsessive. The 25 mg.a day works well.

I wanted to start Nuplazid but it costs $2700 a month! My insurance might have gotten it down to $700 to $900 a month. His neurologist says now he could give my husband free samples for a month. You might ask for that. But, meanwhile, i would suggest trying Seraquel. If he is having side effects, I don't notice any.

grower profile image
grower

I think that Seraquel/quetiapine is what hastened my mother's death. She had Alzheimers and they put her on it for hallucinations/violence and when she got worse they gave her a medicine "holiday" and found she'd been left with the permanent side effect of tardive dyskenesia and had to walk on her toes constantly. Life went from bad to worse so as I say in her case I guess it had mixed blessings but would far rather have had a civilised euthenasia to help her ease the way. I wouldn't recommend the drug to anyone under the circumstances, strong stuff.

jeffreyn profile image
jeffreyn in reply togrower

Do you remember what dosage of Seroquel they put your mother on?

grower profile image
grower in reply tojeffreyn

No sorry, I don't, it was some years ago

Donzim profile image
Donzim

My husband’s hallucinations got worse on Seroquel. In desperation I researched hallucinations and found the work of dr. Abrahm Hoffner and following his protocol I put my husband on 1000mg of the B vitamin niacin (not niacinamide) three times daily. Within 24 hours the hallucination which had been daily for six months, stopped. This is the ultimate dose which I gave without titrating up because my husband had already used it in the past for his heart so I knew he would not have the annoying side effect of the ‘niacin flush’. This is just a passing and benign side effects resulting from expansion of the blood vessels and increased blood to the capillaries. Different people react differently...some get the tingling feeling and sunburned look for about 25 minutes, some don’t. It’s probably a good idea to start low and titration up to the dose required to stop the hallucinations but we found Abrahms recommendation perfect. If I forgot a dose or ran out, my husband always knew it even though he took so many supplements he wouldn’t have known by counting...he knew because he would say,’you must have forgotten my B this morning....I just saw the brown dog in the corner...’. That was always the start.

parkie13 profile image
parkie13 in reply toDonzim

Thank you, thank you for posting I hope it gets read. I have marked your post from before in case I ever need it. Thank you again.

Donzim profile image
Donzim in reply toparkie13

thanks....i must have posted this at least a dozen times. too bad this site doesn't separate the comments into subject matter....it would be a huge help.

Alex2004 profile image
Alex2004 in reply toDonzim

Many thanks for posting. My Mum has strong hallucinations and delusions but the consultant said there is nothing to tackle them. Are you still using your Niacin protocol and how is your husband now? With thanks.

Donzim profile image
Donzim in reply toAlex2004

My husband passed away two years ago this month from heart failure. I still like to share our successes.

Alex2004 profile image
Alex2004 in reply toDonzim

I am so sorry for your loss. It is so kind of you to share your experiences. Thanks again

parkie13 profile image
parkie13

My feeling is you can give anything to anybody. It's like shut up and take your pills. Especially if it's going to make my life easier in taking care of you. And I am not the one that has to take the pills.

rhyspeace12 profile image
rhyspeace12

There was one other good result of my husband taking Seraquel. He stopped falling down. During an episode when he was hallucinating, he was fighting off "intruders" and fell on a chair he had overturned and badly wounded his leg. He is still getting wound care for that 4 months later. He hasn't fallen at all in a long time now.

rhyspeace12 profile image
rhyspeace12

Hallucinations are actually caused by the Sinemet. A person with Parkinson's who has never been on synthetic dopamine, doesn't get hallucinations. The Seraquel got rid of his psychosis, and he needed less Sinemet. Now we are trying Mucuna to add to the Sinemet he takes, to perhaps need less and make it kick in faster. I bought a Mucuna powder on Amazon.

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