Doc put him on Seroquel for aggressive behavior

Miss Ripper

My DH had a second day of aggression (two weeks apart) where he defies everything we try to get him to do or not do. He constantly wants to go home to Fowler, KS where he was born and raised on a big wheat farm, but nobody is there anymore. In defiance, he jumped into our pickup truck and left on Sunday. My son and I followed him in the car while I got the family doctor on the phone. Luckily, we found him parked at the ice rink park and he didn't decide to drive the dangerous ledges up on the mountain where the highway goes south. He was frantic, thinking some part of a rifle he had with him had fallen out into the deep snow. Of course, he had no guns with him and we later discovered it was his phone he'd lost. Found it in the truck the next day. He'd folded it up into the center console arm.

My point is, the family doc was not on call, but took my call anyway. He has him on 100 mg. of Seroquel at night and 50 mg. during the day. We give it to him around 1:30 in the afternoon when his sundowning seems to be kicking in. Isn/t that early?

We see Doc on Thursday to have sutures (minor surgery) removed from the DH's hand and he said he's ask Hospice how they handle situations like this. He also said I may have to put him somewhere if this continues. So far, he's been fine and doesn't remember any of what he did, of course.

Do you find that Seroquel helps a lot with aggressive behavior and defiance? If so, what dosage are you using? Doc says this is a low dose and we can go much higher. As an aside, both times he has been like this was the day after I gave him a testosterone shot. He has very low testosterone levels, even for a man his age, which is 82. Is that a factor? He's on a super low dose, but I am going to skip it this week. Doc says he'd like to discontinue it, if it doesn't cause addiitonal memory problems, which it did before.

IWBH1990

Miss Ripper, 

     My DW has EOAD diagnosed 3 years ago. Up until this past summer she was caring and sweet as usual. Mid-summer she started to get aggressive. It seemed to ramp up little by little, but the little turned into her throwing lamps, knocking down pictures, overturning chairs, scratching, hitting, and kicking me. So violent for her as she would of never dreamed of striking me or throwing things in the 40+ years of marriage. One of the best things I did was open a spreadsheet and start a log measuring a few things, with her anger outburst being one of them. I measured on a scale of 1-10. After 8 tens in a 15 day period in October I reached out to the Dr.  She was put on Seroquel with the dosage of 12.5mg in the morning and 25mg at night (she weighs 110lbs so that may explain the dosage).  In the last 60 days she has had only 2 outburst  that would come close to a 10.  I did notice that at about 2pm-3pm she would often start getting on edge and feisty so I have started giving her 12.5 at 2pm-3pm, and 12.5 at bedtime. It is still the same overall daily dosage, but in our lives so far Seroquel has made a world of difference.

Dave

Joe C.

DW has been on seroquil for about 10 months now to deal with delusions/fears. For the first 9 months she took 12.5mg in AM, 12.5  at Noon and 25 mg at bedtime. About a month a ago I added an additional 12.5 mg at 3 PM due to agitation around sundowning. Although aggression was not her issue, the seroquil has done wonders to reduce her fears.

harshedbuzz

I would encourage you to seek out a geriatric psychiatrist to manage his psychoactive medications and as a second opinion on the continuation of the treatment of his low testosterone. FWIW, most PWD I know who have been started on Seroquel start with 25mg as a dose once or twice daily and titrate up from there. 100mg/50mg isn't necessarily inappropriate, but he might be OK on a bit less.

You may be on to something with the testosterone. My dad was challenging even before dementia. He had a recurrence of prostate cancer which was addressed with androgen deprivation therapy which reduced his testosterone to nearly nothing until it was time for his twice yearly injection. Lack of testosterone did make him somewhat less combative. He did seem to ramp up a bit in the 2-4 weeks before his shot was scheduled. Dad was also one Seroquel which made it possible for him to be home until about 2 months before he died. 

Sundowning is sometimes tied to a change in the quality of light to which a person is exposed; in the northern part of the U.S. this time of year, that could be an issue.

jfkoc

My husband took Seroquel but way less than has been prescribed for your husband and he started with a super low dose and titrated up. 

I am surprised that the same Dr who is treating your husband with testosterone is treating his dementia and further suggested you consult with Hospice. Hospice has little to no medical training for the treatment of any form of dementia.

Your husband needs to be treated by a neurologist and one that routinely diagnoses and treats dementias such as Alzheimer's, Vascular and Lewy Body. That Dr in turn will likely leave the prescribing of drugs. 

It would be really good if you could get a correct diagnosis....what exactly is causing your husbands memory. 

Miss Ripper

Hi lWBH1990 - That's encouraging to hear. This is our first day on the new dosage (higher) and the only problem, so far, is that he's saying he's leaving. That's a regular thing with him. He knows his address and this is it, but it doesn't look like home to him. I hope the Seroquel calms that down a bit. Thanks for sharing with me.

Miss Ripper

Joe C - That is also good to hear. Sundowning didn't start until 3:30 today, but he's in his "I'm leaving" mode right now, which is part of that. This is his first day on the higher dose of Sereoquel.

Miss Ripper

harshedbuzz - My DH did start out on a lower dose of Seroquel, but as soon as he adjusted to it, things got out of hand. Therefore, the doc upped the dosage and this is the first day on the higher dose. Well, last night at bedtime was the first dose. I don't think we gave him enough at 1:30, deciding a lower dose would probably work. He isn't aggressive, but says he is leaving, which is his most frequent thing to say. He wants to go to his childhood farm home in western Kansas, but nobody is there anymore.

I'll talk to the family doc about the testosterone because his neurologist doesn't do hormones and he's the only one available in the area we live in.

Miss Ripper

jfkoc - My husband is and has been treated by a competent neurologist from the start, which will soon be four years ago. He started out with MCI and now is either in Vascular Dementia or Alzheimer's. He and our family doctor work closely together on medicines and diagnoses. We live in the Colorado mountains on the western slope, so we work with what is available. I have great confidence in our neurologist, whom we've know for 20+ years. He's one of the top neurologists on the western slope.

My husband started Seroquel with a lower dose and it didn't work long, though it did at first. That's why the dosage has been increased.

Ernie123

Sorry to read about your struggles, I know how stressful it is and how helpless you can feel in the moment. My suggestion would be to get a referral to a geriatric psychiatrist who has experience with dementia. Every patient responds in a different way to medications and getting the right drug or drugs and correct dosage levels sometimes requires a specialist. Two years ago my DW was at one point very delusional and sometimes violent, hitting me and throwing things at me to force me from our house because in the moment she did not recognize me. She is now living in a memory care facility and much more content, primarily due to the medications our geriatric psychiatrist prescribed. Initially Risperidone helped but eventually, even with increased dosage, she became very paranoid and would hide in her closet fearfully. A switch to Olanzapine and Escitalopram brought immediate relief and comfort. She is now quite content, relaxed, and I visit daily to help with her shower and clothes. Living in a quiet facility with constant social interaction seems to help her immensely. While her memory and executive functions have continued to decline, she is much better emotionally now than a year ago due to the meds and facility environment. I hope sharing my experience is helpful in some small way.

Miss Ripper

Ernie123 - Thank you for sharing your experience with your DW. I'm glad she is doing better in the memory care environment. One of the problems with finding someone like a geriatric psychiatrist is because we live rurally, high in the Colorado mountains on the western slope. Things are not as available here as there would be in a more metropolitan setting. With the higher dosage on the Seroquel, he is doing well - less aggressive and we had to put him to bed a little before 9:00 last night. The problem with that is he was up at 5:00 AM, which means that I was, too. Your note certainly did help and I thank you for sharing it with me.

Jo C.

Ms. R., oh yes; testosterone can indeed cause aggression and anger and other behavioral negatives.  It sounds as though it is time to discuss this with the physician to see if you can release him from that drug which appears to have affected your husband in such a negative manner.  It may posssibly also be interfering with the Seroquel's action, but please consult your Neurologist regarding this as we here are not physicians.

If the testoserone induced behavior is driving you to distraction; imagine what it is like to live inside your husband's head having all those behaviors surface and FEELING all of it.  That is not a good in regard to quality of life.  If the drug is causative for all or the majority of this behavior and feelings, then the remedy if approved by the MD, is simple.  He must rely upon you to do this for him as he cannot do this for himself.  As it is, by your description, it does not sound as though this drug is helping him any longer.

As for Hospice, they are definitiely not experts regarding dementia.  Your by far best bet for managing this is to have your Neurologist address all meds for dementia and let the primary care MD manage only physical needs outside dementia.  Neuro is best to manage drugs affecting dementia.  Our primary care MDs are wonderful at so much but they are not on the cutting edge of dementia dynamics.

For my LO, that is what we chose to do. The Neurologist managed all treatment for dementia and the primary care MD took care of physical needs other than dementia.

Best of luck, let us know how things go.

J.

jfkoc

Thank you for the additional information. I did think that your husband was only seeing one Dr. and I did think the dose you spoke of was an initial one.

There is another caregiver who posts who lives in or near Grand Junction. She posts  under the name of Joan on Lorita's thread. 

I am glad the meds are helping. Please keep us updated.

Miss Ripper

Dear jfkoc - No, my DH is being treated by both the family physician (10 miles from us) and the neurologist (40 miles away). Thank you for giving me the name for the posting lady who lives in or near Grand Junction. That's 100 miles from us, but the son who lives with us now normally lives there, too.

maelz

Miss Ripper

My husband at the present is taking 25mg of seroquel at night for aggressive behavior. He was on this dosage at midday and bed time, which made him sleep all the time. I ask the doctor what else could we do and we cut the day time in half and  at night. ,this really help with his behavior and he was more awake. Whenever his behavior would get aggressive I would give him a full tablet at night. We never increased over 25 mg. I do hope the doctor think about the shots which can cause hallucinations and aggressive behavior. Its hard enough with every day behavior without added symptom of other medications. .I can related because each day we never know who is with us. Wishing you a good night and peaceful sleep.

maelz

aod326

I found the rage stage so hard. We didn't know that what DH had was dementia when the aggression started. (His neuro issues started with seizures in 2015, he was only diagnosed with dementia in Jan 2020.)

He started on 12.5mg during a Feb hospital stay. By June he was at 200mg, all at night. By August he was at 300mg, but that was too high - he seemed over-medicated at that point - so went to 200mg at nights 50mg morning.  The rage stopped at that dosage. Unfortunately DH's EO dementia is progressing quickly, and the rage stage is over. He has been non-verbal since November, and not able to walk since December, so we're gradually titrating down. He's currently at 100mg.

Hang in there. It's a horrible thing to go through.

JJAz

Miss Ripper wrote:

. . . My point is, the family doc was not on call, but took my call anyway. He has him on 100 mg. of Seroquel at night and 50 mg. during the day. We give it to him around 1:30 in the afternoon when his sundowning seems to be kicking in. Isn/t that early?  We see Doc on Thursday to have sutures (minor surgery) removed from the DH's hand and he said he's ask Hospice how they handle situations like this. He also said I may have to put him somewhere if this continues.

AS SOON AS YOU CAN, ask your PCP for a referral to a Geriatric Psychiatrist or a Neuropsychiatrist (or research on your own).  Part of their skills involve managing medications for dementia patients with behavioral issues.  So much more can be done at home before he needs to go to a facility if you have a physician who is skilled in neuropsych medication management.

janeymack

To the posters suggesting a geriatric psychiatrist, please know that some of us live in rural areas where there is no such thing. About six months ago, based on suggestions from this board, I asked my H's GP for a referral to a geri-psych. We have been going to this GP practice for about 20 years. The GP referred me to H's CURRENT neurologist! When the receptionist handed me the card with the name, I laughed and told her that Dr. Black was H's current neurologist and is the one who diagnosed him with EOAD in 2013! I also explained that I had asked for the name of a geri-psych. The new, young GP just had his first exam with my husband, but had apparently not reviewed his chart. 

Apparently, we don't have any geri-psych specialists in our area.

Miss Ripper

janneymack - Thank you for pointing out the fact that those of us who live rurally do not have a geriatric psychiatrist available to us. My husband sees both our family doctor and a neurologist and that's as far as we can go. I am in close tough with the family doctor and he and the neurologist stay in close touch regarding my DH. That's one of the advantages of living in the Colorado mountains.

Miss Ripper

JJaz - Unfortunately, I live where a geriatric psychiatrist is not available, nor is a neruo-psychiatrist. However, our neurologist treats dementia all of the time and is well versed on what meds to give and how to dose it. We discovered that 50 mg. of Seroquel is too much for my DH during the day, so he's still taking 25 mg. around 1:30 PM. He takes the 100 mg. at bedtime, but it no longer is causing him to sleep well. We see the neurologist soon and I'll discuss it with him at that time.

Miss Ripper

maelz wrote:

. I do hope the doctor think about the shots which can cause hallucinations and aggressive behavior. Its hard enough with every day behavior without added symptom of other medications. .I can related because each day we never know who is with us. Wishing you a good night and peaceful sleep.

maelz - I did not give my DH the testosterone shot this week and his dementia has worsened, just as it did the last time I tried to take him off it. It's very difficult to determine exactly what works and what doesn't in my case. The Seroquel no longer keeps him asleep all night and he's often up and out of bed three times, which means I will be, too. Last night I gave him 3 mg. of melatonin, which he's been taking to sleep for almost four years now, but he's very confused today. I don't know if it's the melatonin with the Seroquel or the lack of testosterone. I've never known testosterone to cause my DH to hallucinate, but it can make him a little more aggressive. He isn't violent or physical, just develops a snotty attitude. 

janeymack

Miss R - Please talk to your docs about the melatonin. I've been taking 10 mg every night (some only need 3mg, some 5mg), for years, about an hour before I want to be asleep, and it works wonders. I also combine that with what I call yoga breathing to relax my mind and body as I lay my head on the pillow. Before that, I suffered from awful insomnia from anxiety with racing thoughts running through the day's conversations, to do lists, etc. Now, I sleep.

Melatonin is not habit-forming, and if your husband tolerates it well, it can deliver the blessing of easing him into a restful sleep. It only stays in your body for about 4 hours. At first, he may feel off the next morning, but it is likely just the after-effects of finally sleeping deeply, not the melatonin, itself.

When someone first begins taking it, they may have vivid dreams or nightmares, but my doc told me it was due to finally getting enough REM sleep that I was able to have deep enough sleep to dream again! She advised me to stick with it, and after two weeks of crazy dreams, I was able to be guaranteed a solid night's sleep every night! 

jfkoc

Check out Valerian Root. My Dr told me about it and it helped.