Seroquel

kasharb

Anyone have experience with how long Seroquel will help with hallucinations and delusions? DH has been on it now for about 2 months and it has worked great with hallucinations but he is beginning to have them again. I’m almost at max dosage for him (can still add half a pill or 25mgs). I really don’t like how it makes him sleep so much of the day so hesitating adding this last dosage.

W tried Abilify first which really did not help PLUS gave him terrific headaches so I’m just very cautious with these meds. None of the hallucinations are aggressive or violent - is it best to Just live with them?

Living with this disease is just so hard - facing 2024 has me scared to death right now - anyone else feeling that?

wizmo

DW takes seroquel for agitation, went through regular increases 12.5 / 25 / 50 / 100 in evening then +25 morning then +25 noon. Initially got worse before it got better a few days after each increase but less effective after 6-8 weeks triggering another adjustment. I was told 300 would be limit for her (age 59), most likely going to different medication before we get there. Somewhere in the middle about 2 months ago we also tried adding MMJ low dose (1mg) THC higher dose (20mg) CBD as we are in a state that makes it an option. It also helped a little but I think the seroquel has been the major contributor to less agitation, while it lasts. Everyone is different, there can be a lot of trial and error to find the right medication. Keep updating your prescriber often so they know what is working or not.

M1

There's tremendous flexibility in dosing, in schizophrenia up to 800 mg per day is used, so I wouldn't take any of this as written in stone. Hopefully you can get good advice about how to titrate....

Joe C.

My DW started at 25 mg per day (12.5 morning & 12.5 evening) over time (about 2 years) the dosage was gradually increased to 100 mg per day (25 mg at 7AM, 11AM, 3PM & 7PM) which kept her delusions in check. When I placed her in Memory Care the neurologist suggested to try backing off the dosage once she became acclimated to her new environment. She is now taking 50 mg morning and evening and she is doing fine.

Pat6177

Kasharb, my situation is different than yours. But I figured I would provide my 2 cents. You say “None of the hallucinations are aggressive or violent - is it best to Just live with them?”. My DH just started with delusions a couple of months ago. They started at the same time he didn’t know me for the first time. After the first week or so, he realized he was having delusions and he told me they were not scary or alarming. They seemed to go away for a couple of weeks but then came back. They are not causing anxiety or agitation and there’s no violence or aggression. He just gets frustrated when I don’t know what he’s talking about. He asks me every night if everyone has left and if I am going to stay. He is not on any meds for the delusions. He may need meds further down the road but not now. So I guess you need to determine what the goal is. Being calm while living with delusions? Or being free of delusions? Assuming he’s safe either way.

As for 2024, I try to be prepared but not feel like every awful thing is coming my way. Hope for the best, plan for the worst.

DCCEPEK

The surquill and haldon has been our best mixture for delirium, hallucinateion anxiety

jfkoc

Please go to drugs.com and look at the major interaction between these two drugs...both of these are antipsychotics. You will want to be aware of possible side effects.

CindyBum

>Living with this disease is just so hard - facing 2024 has me scared to death right now - anyone else feeling that?

Scared to death? Yes. Mostly about seeing more of the fear and confusion in my DW's eyes, but also angry as all hell about how mean and unfair this whole thing is for her. She offered nothing but care and love to others her whole life and this is the pay off she gets. Grrrrrr

avieDa921)

My DH started on Seroquel last night 25mg one before bedtime. He has had this horrible disease 6 years now and after maybe a couple of years in he started having hallucinations, not bad. At the end of this past November he was starting not to recognize me, mostly starting late afternoon and going on until bedtime, every night now. Either it's his & his mother's house or his & his wife's house. It's been quite challenging to talk him in to let me spend the night and telling him my girlfriend will pick me up tomorrow morning. I also give him 10mg melatonin early evening. Today I started him on Ashwagandha 125 mg., starting slow to see how he reacts to it. My son swears that it has helped him with anxiety, but he takes one 600mg. capsule. It doesn't hurt to try something natural even though my doctor says it's a waste of money.

M1

Avie, beware starting too many things simultaneously, if he has an adverse reaction you may not be able to tell what is responsible. Give the Seroquel time to work. "Natural" is not equivalent to safe.

avieDa921)

https://alzconnected.org/discussion/comment/192934#Comment_192934

Yes you’re right! I sent an email to his neurologist to get his opinion.

mickenny

https://alzconnected.org/discussion/comment/192418#Comment_192418

My DW started with auditory hallucination first. Nothing violence or scary and just seems like she is talking to someone else. We started with 25mg Seroquel and it makes her sleep most of the time. So I stopped to not give it to her everyday as our doctor suggested. Unfortunately in two to three weeks, the hallucination got worse and it has became violent or scary for her 90% of her time. It makes her more combative. We increased the dosage to 50mg now everyday but she is fighting to take this medication now. It is so hard to see her being so angry or scared. I am not sure if this med or increase dosage will help.

GothicGremlin

I'll just add my quick two cents.

My sister, who's very late stage 6/early stage 7 started having hallucinations. She was never violent, but she was often terrified, and so would scream and scream. Not little screams, but blood curdling screams. She's been on seroquel for about a month and half now and the screaming is gone, and the hallucinations are greatly diminished.

I hate that she's sleepy all the time, but at least when she's awake, she's back to her cheery, if loopy and word-salad-y, self. She doesn't tend to look stressed or agitated for the most part (like she used to often look). She's still on a low dose, so I have a ways to go before she maxes out.

I just roll with the delusions, which vary. Right now she thinks our mom is still alive (I guess that's a delusion?) and they've had conversations. I always respond with "that's great! I haven't seen her in awhile, tell her I said hi." For awhile she thought our dad was bringing her chocolate (he passed away almost ten years ago), but that's subsided now. I got right on the hallucinations though, I do not want to see her screaming and being terrified.

@kasharb Scared to death? I can't say that I'm scared to death, but I am very, very apprehensive.

JifKY

Hi all. Trying to get some opinions of it is even worth it to start LO on hallucination medications as my LO is now in the middle stages and getting worse. I read that these meds really do not help since their brain is broken. Is it worth trying?

M1

Absolutely worth trying. Doesn't alter the disease progression but can improve quality of life by controlling delusions, hallucinations, and aggressive behavior, also improves sleep.

ButterflyWings

https://alzconnected.org/discussion/comment/196939#Comment_196939

What M1 just said. Yes it is worth trying and I think you may be mixing up two different kinds of meds here. Many people say they are not sure the "dementia" meds work, that is Memantine (I think?), and Donepezil which may or may not help delay or mask progression symptoms. We could not take these due to severe and immediate weight loss as they caused DH to lose his appetite completely.

But, their broken and dying brains can cause hallucinations (seeing, hearing, smelling, feeling things that are not really there) and/or delusions (false beliefs or "memories"). And that can trigger extreme fear, confusion, distress, anxiety, anger, and dangerous ideation that can lead to their escaping/wandering/elopement, weaponing up to fight back, harming someone they don't recognize, etc. etc. (Ask me how I know this😥) .

Quetiapine (Seroquel) was our magic pill and ABSOLUTELY worth it. Definitely helped. In fact it was key to keeping him safe especially when in those "middle stages and getting worse", as you describe your LO. Please see the excellent feedback on this thread about how you have to finesse it with Dr's guidance to get the right dosage which changes over time. We have found the sweet spot dosing 3x per day, and it has made it possible for him to be calm, alert, and at home into late stages after a h3ll-on-wheels mid-stages that I would not wish on anyone. Morning, pre-sundowning, and bedtime are our dosage times. Total is now 300 mg daily for years.

His Dr. explained the potential risks (pharma warnings of what "might" happen in a few cases) in comparison to what actually WAS happening at home. Our dementia reality was super scary and not sustainable. As hard as it was on me, it clearly was as hard, or harder on him - and I had the advantage of understanding why he was struggling whereas he could not comprehend it (anosognosia) nor fix anything by himself.

You are in charge now (as DH's neuro told me on diagnosis). We had nothing to lose and for the last few years, we both feel much, MUCH better with this med on board. FWIW, DH is still physically well with no heart problems or anything that he didn't have before taking this antipsychotic long term, at fairly high levels.

CStrope

DH talks to imaginary people all day. He will line up pillows on the couch and have long conversations with them (I think he's back in the classroom teaching), and he'll open up the patio door and have a little chat with the people he says are on our deck. When this all first started, we put him on Seroquel twice a day, but it seemed to make him very confused during the night. He was wandering around the house using all sorts of non-toilet locations to relieve himself. After speaking with his dr., we decided that as long as his "friends" didn't make him agitated or upset, there was really no harm in his little talks. So he is no longer taking any type of anti-psychotic on a regular basis. On those days where he is overly anxious, DH gets a Lorazepam at lunch, and it seems to take the edge off. I prefer that over trying to control the hallucinations.

Cissybelle

I'm still so new to this journey with my DH and truthfully I'm not very good at it. My husband has had what I know now is hallucinations for years now, before he was diagnosed a couple of years ago. I really didn't think much about it then. The people and animals he saw were friendly but now he threatens them, tells them to get out. He even got up one night, grabbed a flashlight and his knife and went to every room and looked under the bed for the man in our house. He was prescribed seroquel but I haven't started him on it, yet. Sorry, this is so long but my friends either don't believe me or don't want to hear it. It's a lonely and sad time for both of us. He gets SO obsessed with things, can't find words to explain what he's trying to say and then gets frustrated. Actually, he's healthy other than having AFib. I don't know what stage he's in or what to expect. I just know I'm tired but I also know it's not about me. I'm afraid of his driving which he doesn't do much anymore. I'm afraid when he drives our pontoon boat and other people are, too. All the responsibilities are overwhelming. He's 75 and I'm 66 and retired 3 years ago. Sometimes, I wish he was never told he has dementia because in some ways it made it worse knowing, if that makes sense. Thanks for listening and good luck to all of you caring for or living with this horrible disease.

M1

Welcome to the forum. Trust the Seroquel to work, but you MUST take away the car and boat. Other people's lives are at stake.

ButterflyWings

https://alzconnected.org/discussion/comment/214789#Comment_214789

M1 beat me to it. Driving and boating don't mix with dementia - especially at the stage your DH clearly is. Just disappear the keys and pretend you have no idea what happened. Rinse and repeat. That's what I did. (Short version to a long fiasco, but that's the bottom line). Trying to gain agreement from your LO, is not going to happen. Or if he does agree, he will not be able to keep that promise.

Also, knives and hallucinating PWDs do not mix. Please start the Seroquel (and disappear any knives, guns, big tools, scissors or anything else that could be weaponized). This is one thing I know from experience. If you do not take charge (even without announcing it) dementia will, and you will not like where it leads you both.

Welcome, buckle up, and don't wait a moment longer please. This disease is a monster and your LO can't be in charge any more.