Has anyone just stopped with the meds ?

Just Bill

When my wife was diagnosed she was prescribed Aricept. She was obsessed with dying and depressed, psychotic, and delusional. She was prescribed an anti depressant. It worked for a while and it's as if her brain outsmarts the med and continues on its path. She started really hallucinating and waking up in the middle of the night in a psychotic state. So she was prescribed ambien. That works well, she still gets up early but not as bad. Her hallucinations delusions and psychotic behavior escalated again and here we are 6 days into seroquel. She is on a another level of hallucinations delusions easily agitated and back to being very pissed. She is getting worse and not better. I don't know if she has an expedited version of dementia or is it her meds goofing up her chemistry. Her brain acts like a virus and overcomes any attempt at the meds doing their job. I wonder what would happen if I discontinued all meds ? Safely of course weaning her off everything. I cannot imagine what would be worse than where she is. Maybe a med free brain would be healthier. I am lost.

MaryG123

Hi Just Bill,

I’m a retired veterinarian, so am not speaking as a human medical professional here.  I have also been managing my husbands psych meds for him for 25 yrs. but I have no experience with any of the meds your wife takes.  However, my gut tells me your concerns are valid, and that you need to bring this up with whichever docs are coordinating her care.  Your pharmacist is also a great resource.  For example, my DH took a mood stabilizer and two antidepressants for more than twenty years, and they worked very well.  Over the past six months he started having side effects, so we suggested, and the docs agreed, weaning off one antidepressant and two months later reducing the dose of the mood stabilizer.  He is feeling much better and his psych symptoms are still controlled.  Both meds were reduced very very gradually, over weeks.  Please don’t take her cold turkey off anything that affects the nervous system though.

JJAz

If your spouse is having true hallucinations (not just delusions) there's a significant chance that she may have Lewy Body Dementia.  Acting out during sleep is another significant symptom (REM behavior sleep disorder).  Check out the Lewy Body Dementia Association link below (scan down on their page) to see the diagnosing criteria.  If so, the Ambien could be a dangerous medication.

https://www.lbda.org/wp-content/uploads/2017/09/2017_diagnostic_checklist_-_updated_criteria_v2_1.pdf

Ernie123

In my DW’s case a number of years ago when she started having delusions and paranoia, sometimes leading to extreme agitation and violence, she was assessed by a geriatric psychiatrist who tried different medications and dosage levels over a few months to eventually find the right prescription to calm her down. 

He stressed with me the point that everyone reacts differently to these antipsychotic meds and it is important to monitor the situation and adjust meds and dosage accordingly. For example she initially took Risperidone to settle her agitation and anger but as her condition progressed he switched her to Olanzapine which worked much better. Recently her dosage had to be adjusted and she is now again much calmer and happier without any bouts of paranoia and upset.

My advice is to get an assessment by a geriatrician with experience and be prepared to experiment a bit to find the right medications and dosage. Be ready to adjust as time passes. If you read here that such and such medication worked well for someone, it may not work at all with your wife. Don’t be discouraged, be open to trials, and certainly never stop a medication without first having a discussion with an experienced physician or pharmacist.

M1

Bill, it may be time to think about psychiatric hospitalization to get her stabilized.  Much easier to do in a controlled environment than at home.  Please think about it.

nancyj194

Hi Just Bill,

I would like to comment concerning your statement.

My DH was diagnosed with Alzheimer's in 2017. He retired from his engineering job in 1999 at 60, because he could no longer work on the computer.  He had been an excellent engineer training many and helping others.  Yes, I believe the Alzheimer's started that long ago. 

When he was diagnosed in 2017, his neurologist at University wanted to put him on an Alzheimer's medication but DH refused.  I had been in an Alzheimer's support group prior to that and had listened to many talking about the different medications their loved ones had been put on.  Some found they worked very well, some found they had too serious side effects and had taken them off, etc.  I decided not to push those drugs on my husband, as he was already taking high blood pressure, cholesterol, prostate, kidney stone, baby aspirin, Barrett;s esophagus, and a sleeping pill.  There maybe one more I cannot think of.  

So far he has no hallucinations, delusions or psychotic behavior.  He has had numerous TIAs, but those stopped three years ago with no change in his medications.  

Years ago, our primary care doctor put him on an antidepressant and he did become psychotic/paranoid on the first dose, and never took another pill again. 

His behavior right now is quite laid back, more so than he ever was during our soon 57 year marriage.  

He is unable to do most everything he did before, so I have taken over those jobs.  

He stopped driving the car in 2013 after a serious car accident. I hire the lawn mowed, but do all of the weeding, fertilizing, etc. Our son has removed most of the power tools to his home. DH can dress himself in sweats and a golf shirt. He does not wear underwear. I have to help him dress in slacks with a belt and zipper and button his shirts. 

He wears slide on slippers everywhere but when we go into a store, then I ask that he wear tennis shoes. So far he can tie the laces. 

So in response to your comment, I would talk to your doctor about your concerns, but you are the one living with your wife and know what is best for  both of you.  

Ed1937

Bill, my wife and I felt the same way about medications. When she was first diagnosed, she refused "memory pills". She refused them several times after that when suggested by different doctors. She never took them, but she never had hallucinations, and if she did, I would have her put on meds for that. The only delusions she had was that I had a girlfriend, and I think that was more of a question in her mind than a rigid belief. No meds for that. We both believed it was better to keep meds to a minimum.

But I fully agree with M1 about getting her meds adjusted in a controlled environment. Adjustment is not always easy to do.