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Originally posted by: meeko11
Larry-time release meds shouldn't be cut. Your wife may be getting too much at one time.
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Originally posted by: LarryD
Everyone has told me not to cut them but she can't, or won't swallow a pill without chewing them up. I have cut the 200mg time release into thirds and hide them in bites of food. Most of them get swallowed without chewing them up. I have been doing this for almost two years now with no outward signs or effect. She sleeps through the night. (12+ hrs) But how can one tell what is happening inside the body. We have not been able to go to or be seen by our doctor for two years and I have just tried this and that to find something that works. I chose not to take her to a psych ward for fear she would not come back recognizable.
I can stand the wailing and it doesn't seem to bother her. She doesn't seem to be overly agitated. Just suddenly makes these loud wailing sounds and then looks at me like; "What?" No apparent pain or crying, just wailing is the best I can describe it.
Still, I would like to decrease the seroquel dosage over time because of the black box warnings.
When I have asked the doctor in the past, he says, "Try it and see what happens". After all, I am the one who has to live with the results.
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Joined: 1/14/2015
Posts: 40463
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Originally posted by: LarryD
A couple of years ago, my wife started having night terrors with screaming and vision etc and after trying several drugs, we ended up on seroquel and it allowed her to sleep through the night. I was giving her 200mg time release at supper and another 50mg at bedtime. I have continued this with one change, I cut the time release to 2/3 or 133mg at supper about three months ago with no adverse effects. I recently cut out the 50mg at bedtime. The only difference I see lately is during the afternoon she squeals and wails most of the time. She doesn't seem to know she is doing it.
My question is; is the wailing and screaming part of the disease or is it caused at least in part by the reduction in seroquel dosage? The doctors and pharmacists don't have a clue.
This forum is my main source of information. I can control the noise by giving her 1/2mg or 1 mg of lorazepam but then she just sits slumped over in a daze.
Help.....
LarryD
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Originally posted by: meeko11
quote: After all, I am the one who has to live with the results.
Larry-you're doing all that you can. Give yourself a pat on the back.
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Originally posted by: LarryD
Finally, this morning, after 14 hours in the vinegar, there were just some small lumps left that dissolved when I stirred the mix.
What doe this mean? Probably very little but apparently the time release pills do not rely on just the coating but on the formulation of each pill. This works for me so I will continue as before.
I have said it before. No one has all the answers for us. Each of us have to engage in some trial and error to see what works for us and our loved ones.
Good luck to all..........
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Originally posted by: Cathy J. M.
Maybe try cutting a 0.5 mg lorazepam in half, see if that calms her without oversedation?
I've cut these tiny 0.5 mg pills even in fourths.
Another, easier to cut option is clonazepam, which stays in the bloodstream longer. (The half life is longer.) Our brain specialist recommended this since my partner seems to do much better on a tiny dose of a benzo drug -- the steadier serum level helps prevent a kind of kickback that can happen otherwise when lorazepam wears off.
There are tiny sublingual tablets of clonazepam but they're very expensive, so I cut 0.5 mg tablets into halves (for bedtime) and fourths (for morning pills). Some pharmacists and doctors have told me there's no way I can cut them accurately enough to make this work, but I've done it for over a year and it's been fine.
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Originally posted by: JAB
Larry, Seroquel comes in regular tablets -- as 25 mg (round, peach), 50 mg (round, white), 100 mg (round, yellow), 200 mg (round, white), 300 mg (capsule-shaped, white), and 400 mg (capsule-shaped, yellow) tablets -- as well as in the XR (extended release) film-coated caplets in 50 mg (peach), 150 mg (white), 200 mg (yellow), 300 mg (pale yellow), and 400 mg (white). There's no need to monkey around with cutting up the higher dose XR caplets.
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Originally posted by: LarryD
I appreciate the advice I have been given by all of you. Everyone on this forum is so helpful and caring..
JAB, I might be able to convince the hospice service to provide four times as many 50mg time release tablets to replace the 200mg and try to sneak then into her food without her chewing them up, but:::
I did an experiment this afternoon with the pills I have. I don't recommend this to anyone else but I poured about an inch of white vinegar into a dish and put a 50mg regular seroquel pill in and a 200 mg time release seroquel tablet cut into thirds in as well.
The regular 50mg tablet dissolved completely within 15 seconds. The time release pieces began to lose their yellow coating after one hour and it has now been three hours and the pills are still nearly whole except for some dissolved material clouding off when I stir the mix.
I know stomach acid is stronger than vinegar but it looks like as long as she doesn't chew up the pieces, they still do their job of slowly dissolving over several hours.
At any rate, my memory of how hard it was on her and me before the seroquel; I hate to risk a recurrence. I am slowly reducing the night time meds in hopes that she is past needing them. I wish the medical community really knew more about this disease and how different people respond to what kind of drugs.
This forum is still the best source of information on this disease in my opinion and I am trying to add to that with my experiences.
LarryD
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Originally posted by: JAB
Larry, you're a sweetheart.
Back to the original question ... .
The timing of the wailing says maybe there is a trigger of some sort. Perhaps a side effect of a med given in the morning? Not necessarily a direct side effect (i.e., the drug makes one wail) but maybe something like tinnitus, and your wife reacts that way to blot out the sound.
Alternatively, maybe there's a medicine that's beginning to wear off, e.g., a pain med. Wailing would be considered a form of agitation, and the number one cause of agitation in dementia patients is undiagnosed and/or undertreated pain.
Or maybe she's getting uncomfortable by being in one position too long. Or the sun is getting in her eyes.
Or maybe she's just bored. Have you tried something like giving her a doll or stuffed animal, one of those "busy aprons", etc?
I have unearthed from my voluminous files a literature search on "screaming in elderly persons with dementia." "Screaming" is defined as "a persistent noisemaking behavior", or a "vocally disruptive behavior." The authors note that screaming is not unique to any given type of dementia, and can develop in ~15-30% of dementia patients.
One of the studies they identified found screaming to be "significantly associated with depressive affect, cognitive and functional impairments, number of falls, sleep problems and various disruptive behaviours ... pain and a poor social network." Screaming occurred mostly in the evening. Music decreased the frequency of screaming.
Another study concluded that NH residents who screamed had less time dedicated to their care and were more ADL-dependent; were more disoriented in space, manifested more anxiety, maintained better speaking abilities, and had more hallucinations. These researchers formulated the hypothesis that brain lesions and lack of stimulation could be factors contributing to screaming. Social isolation and ADL dependence were believed to contribute to under-stimulation.
Yet another study found that "screamers" were more impaired and had more sleep problems, took more neuroleptics (antipsychotics) and received less acetaminophen (a pain med). They concluded screaming was an attempt to communicate the patient's needs.
OK, interventions. Four types of intervention have been evaluated in studies found by the literature search: biomedical treatments, behavioral approaches, modification of the environment, and concomitant use of multiple interventions.
Biomedical interventions have often targeted depression or pain. "Antidepressants have sometimes shown positive results in this regard, especially selective serotonin reuptake inhibitors (SSRI) taken alone or with tryptophan."
Trazodone, sometimes requiring supplementation with tryptophan, has been reported to be effective in several case studies. Paroxetine and citalopram decreased frequency of screaming but didn't stop it.
Relieving pain and discomfort has been helpful. "Many sources of discomfort should be assessed, including joint pains and urinary infections."
Behavioral approaches involve rewarding good behavior (being quiet) and withdrawing the reward when the patient screamed. Rewards could be social interaction, food, music, back rubs, etc. Results were fairly inconclusive (possibly because the interventions were applied inconsistently).
Modifying the environment: There is some evidence that playing the patient's favorite music may help. Ditto for "social interaction by caregivers to offer sensory stimulation".
A lot of this sounds like the "person-centered care" that can be effective at helping minimize agitation behaviors such as sundowning.
http://www.alzcompend.info/?p=268
The same authors of this lit review published again quite recently. The paper is not readily available over the web -- I'll see if the corresponding author will send me a copy.
http://www.ncbi.nlm.nih.gov/pubmed/20122301
There's also a thesis which says:
"Screaming may indicate anxiety, which may be tied to both
understimulation and to a chaotic, frightening, or over-stimulating situation or
environment (e.g., a nursing home at mealtime or a bath given by an unrecognized staff
member), in addition to fear (perhaps at being undressed by an aide at bath time) or
simply the need to urinate (Barton et al., 2005; Bourbonnais & Ducharme, 2005; Smith &
Buckwalter). Cohen-Mansfield and colleagues (1990) have demonstrated that screaming
by nursing home residents is associated with cognitive impairment, severe impairments in
performance of basic activities of daily living, inadequate social networks, and depressed
affect (Cohen-Mansfield et al., 1990). They also found that residents tended to scream
more frequently when left alone in their rooms in the evening, which they interpreted as
response to social isolation. Other researchers have linked screaming and other such
vocalizations among nursing home residents to boredom (Barton et al., 2005; Hallberg &
Norberg, 1990) and to anxiety, particularly with respect to fear of abandonment."
And it has a chapter on interventions:
http://digitallibrary.usc.edu/...m/etd-Jones-2983.pdf
If you haven't been following that thread on Prazosin, you might want to take a look at that:
http://alzheimers.infopop.cc/e...=309307664#309307664
Prazosin has a good safety profile, is inexpensive, the underlying science appears sound, and it's in clinical trials for Alzheimer's patients.
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Originally posted by: LarryD
The only reason I did my experiment was to determine whether I was in fact dumping the entire dosage into her by cutting the tablets. The test showed that the entire tablet is formulated to dispense the drug over time even when the coating was gone. As compared the the non-time release pill.
I started out by saying I don't recommend or endorse doing what I have done. When the problem of sleep first occurred three years or so ago, the 200mg time release tablet was the answer and at that time she could and did swallow albeit with some difficulty as time passed. As the disease progressed she became unable to swallow such a large tablet. I probably should have changed over to several smaller, lower dosage pills but I didn't and the cut pills were the immediate solution which did not seem to bother her. It was a short time before she didn't swallow anything without chewing it up. Hopefully I did not do damage to her innards and I realize that is a possibility but what's done is done.
I suspect that she can sleep now at night without seroquel so I am weaning her little by little from all of it. I have now stopped the 50mg bedtime pill and have noticed no change in her sleep habits. She goes right to sleep now and sleeps quietly for 12 to 14 hours until the aide gets here to help me get her up.
JAB, I appreciate your corrective posts so that others will take a more appropriate path especially when it involves the black box drugs.
I probably should have kept quiet to begin with and then this wouldn't have become an issue.
I think her wailing in the afternoon is just another phase of the disease. I know she gets bored and fusses when she is frustrated or wants some attention. I don't think she is aware she is doing it most of the time.
Thanks again.
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Originally posted by: JAB
quote: I cut the time release to 2/3 or 133mg
The XR formulation is available in 150mg, so there is no need to cut a higher-dose XR caplet.
Not only does vinegar not mimic stomach acid (and all the digestive enzymes in saliva and bile), but sitting in a glass doesn't mimic the active pumping/mixing mechanism of the stomach, either.
The entire point of an XR formulation is to create a steady concentration of the drug in the blood serum over time. By cutting the caplet, you create a raw edge that releases a bolus of drug. You end up with higher concentrations than expected at first, and lower concentrations later on. Ergo, you don't really know what dosage she's getting.
Note, please, that the maximum blood levels that are produced by, say, 150mg XR caplets and 150mg tablets are not the same. I haven't looked at the pharmacokinetics for Seroquel, but I know for a drug that I take, I'd need 600mg XR to get the same blood levels I get with 400 regular tablets.
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Originally posted by: LarryD
I will read anything you have that refers to this issue. Do you have my E-mail address? I have pretty much become used to her noise but if there is a cause I can address I will do it. I know that it is triggered by loud noises or arguing on TV. She is more aware of sound rather than visual stimulation. She gets upset if we talk about her although this is less of a problem than it used to be. If I get too intimate by hugging her or stroking her hair or face, she sometimes gets upset. I call it wailing but it is a lot like screaming. It rises in volume the longer the irritation continues. 5 seconds later, she doesn't remember she did it and even when she is doing it it's like a spontaneous reaction that is not done on purpose.
More and more, I am amazed at everything the brain controls.
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Originally posted by: JAB
quote: The same authors of this lit review published again quite recently. The paper is not readily available over the web -- I'll see if the corresponding author will send me a copy. http://www.ncbi.nlm.nih.gov/pubmed/20122301
She did, and I'd be happy to send you a copy. It summarizes the earlier findings in the lit search, and then adds a study of eight dementia patients living in a nursing home, and working with the NH staff and family members to "decode" the screaming to find effective ways to help the loved one feel more comfortable and safe.
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Originally posted by: JAB
quote: Do you have my E-mail address?
Yes. Sent that, plus another I found in my files.
Cathy, that's interesting. Are you talking about really late in the day, when the light fades? To compensate for not being able to see as well? I don't suppose you have a reference ...
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Originally posted by: Cathy J. M.
One thing I remember from studying human cycles is that sound perception becomes more acute (for most people anyway) as the day wears on. So that might figure into this.
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Originally posted by: LarryD
I think it happens throughout the day, not just as it grows darker. My only reference is personal observation.
I first noticed something funny a couple of years ago. When I would put some cut up sandwich pieces or chips on a plate for my wife, she would reach past the nearest piece for the furthest pieces. It's like her focus was distant rather than near. As time went on she stopped focusing on any of it.
But boy, she can hear a pin drop across the room.
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Originally posted by: *Linda*
You guys are amazing!! You are so unbelievably knowledgeable. Cathy and JAB, are you medical doctors?????
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Originally posted by: Cathy J. M.
quote: Originally posted by JAB: quote: Do you have my E-mail address?
Yes. Sent that, plus another I found in my files. Cathy, that's interesting. Are you talking about really late in the day, when the light fades? To compensate for not being able to see as well? I don't suppose you have a reference ...
No reference offhand. Taught a class on human cycles about 35 years ago, don't remember the books I used.
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Originally posted by: *Linda*
It is great to have both of you around. It allows all of us to stay on the cutting edge of advancements and to stay well informed. Thank you!
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Originally posted by: JAB
We've just been in the trenches quite a while ... and we both like to research issues associated with dementia. And my husband is/has been in several studies and I've pestered the life out of their specialists. 
We do have some MDs on board, though -- nikkij and Thomas A. Lucas on this forum, and (mostly on the Meds forum) stephenstrumMD and joshuy.
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