Steep decline from severe to late-stage from mirtazapine (Remeron)?

LittleVolcano

My mom used to have severe dementia, but her geriatric specialist prescribed mirtazapine (generic Remeron) for my Mom's anxiety. My mom is tiny, 108lbs, so the doc prescribed a quarter of a 15mg tablet for the first two days (3.75mg), then half after that (7.5mg). Even after the first tiny dose that first evening, my Mom started getting drowsy within I want to say an hour or less. She started falling asleep while watching TV, which was abnormal, but we weren't too concerned if it helped her sleep at night. However, the next day or so, her ability to communicate tanked, she started sleeping most of the day, and she lost her appetite (which is unusual for mirtazapine, since it's an appetite stimulant). The saddest part was that she was occasionally agreeable to my father (she hasn't recognized him for years, and the disease is really awful to him), but he and I both agreed that the few times she was nice to him wasn't worth the side effects she was experiencing.

After two weeks of this, we alerted her doctor and she had us stop the mirtazapine. It's been three weeks since she's been off it, and Mom still hasn't returned to where she was before taking it. She had severe dementia before, but now Mom appears to be firmly in late-stage. Either it was an insane coincidence or this happened because of the mirtazapine.

I'm not looking to place blame or anything (I'm numb these days; a younger version of me would be looking to break some stuff), but I'm curious if anyone's experienced this—a sharp and possibly-permanent decline from a drug?

Thoughts?

My mom used to finish a half-gallon of ice cream a week, or less. Now she's barely touching the stuff, let alone anything halfway healthy for her. She is also possibly battling some TMJ, so the appetite issue may be connected to that, although we give her plenty of things she doesn't even have to chew and she's barely interested. But still, there's another potential side effect—the TMJ—she didn't have mouth problems before the drug experience.

Anyway, I cry every day now, cuz obvi late-stage is pretty sad and scary. And, yeah, maybe I'm a bit [read: very] mad right now, because it's just too coincidental that mirtazapine thrust my mom into late-stage. But what are we gonna do, right? Answer: What we always do. Keep our loved ones as happy and comfortable as possible. Me and my hubs were just over there today for lunch. Got Mom to eat a little and instantly her mood and energy level lifted. Even my husband was shocked at how much she'd declined in such a short amount of time (the last time he saw her was before the drugs).

Anyway, I'm rambling. This all feels extremely real—in a death way—now. And it's pretty much taken over my thoughts, of course. :(

Love and hugs to all of you who are equally scared—or pissed, or annoyed, or irritated, or burnt out, or (hopefully) laughing lovingly with and enjoying your LO, or any of the rainbow of emotions and experiences we all go through.

-LV

SDianeL

Can antidepressants cause TMJ?

We see a significant proportion of patients presenting to the Maxillofacial department with Temporomandibular joint disorder and bruxism associated with SSRI use. The literature suggests an association with serotonergic antidepressants (SSRI and SNRI) inducing jaw pain/jaw spasm reversible syndrome (2).Feb 27, 2020 There are several types of antidepressants that have been associated with bruxism, including SSRIs, SNRIs, and lithium. SSRIs, selective serotonin reuptake inhibitors, include Paxil, Prozac, Zoloft, and others, including generic forms. and this: https://www.plymouth.ac.uk/news/common-antidepressant-should-no-longer-be-used-to-treat-people-with-dementia-study-says#:~:text=Not%20only%20was%20the%20drug,in%20other%20types%20of%20dementia.%E2%80%9D

harshedbuzz

@SDianeL Remeron isn't an SSRI; it is an alpha-2 receptor antagonist used for major depressive disorder. It is generally considered a bigger gun than something like Prozac.

Bruxism-- aka tooth grinding/clenching is often seen in the neurodivergent and those with neurological differences. It is often a sensory-seeking behavior or stereotypy that creates a significant joint compression which is calming for those who do it. This could be a chicken-or-the-egg scenario.

@LittleVolcano I am so very sorry. It must be devastating to see the abrupt change in your mom whatever the cause.

HB

MN Chickadee

Hard to know. My mother took Remeron with great success. She also tolerated Aricept, but Namenda caused issues similar to what happened with your mother. However my mother did bounce back to her baseline for a time. This kind of question is not unusual with dementia. A caregiver wonders if something caused a domino effect. A move to a facility, a change in meds, a change in caregivers etc. The bottom line is a PWD such as your mother before the Remeron is in a vulnerable state and just about anything can send things into a tailspin. The end often comes suddenly when people aren't expecting it because we think they will coast in the late stage for a long time but then something abruptly changes the course. For us it was COVID. Mom came through the quarantine fine with very minimal symptoms but it started a downward spiral and she was gone within a couple weeks. We can't control everything. You were doing your best for your mom, working with her doctor to see if you could alleviate her anxiety which would improve her quality of life. That is a loving thing to do and it's no one's fault that she may have not tolerated the medication very well. It could have been the med, it also could have been she had a mini stroke or a UTI or something else happened you can't see.

The sudden end was extremely hard for me. My mother was late state 6 so it's not like she was living a great life, and in some ways (and this I can say a year later) it was a blessing to skip through a year or more of stage 7 and have her go quickly. But it was awful and I wanted more time with her and it wasn't fair and I didn't want it to go that way. I get it. But try not to be hard on yourself or anyone else. You are all doing your best with a dreadful situation.

LittleVolcano

Thank you to both of you for chiming in. Not like this hasn't been painful for the last 9 years (especially this last 5 because the disease breaks my Dad's heart daily), but this new decline is really devastating me and my father. I'm trying to procure a therapist who specializes in "anticipatory grief" to help me. My father, unfortunately, can't bring himself to seek counseling or support (I think it's just too painful for him. Like me, the moment he opens his mouth about this stuff, he starts crying and, as a guy, he's even more uncomfortable with that than I am.

In "good" news, I'm taking Mom for her initial visit with an adult program tomorrow. She's more cooperative now, so I'm assuming it will be easier to get her to go, and I would think she has more of a chance of enjoying herself. It's a really great program. On our tour, Mom said how comfortable and respected she felt there, which is huge.

I really need to get into counseling again, cuz I'm suddenly having all these regrets about the things I didn't do all these years (completely disregarding all the things I DID do, of course? ha!). Granted, I'm not the primary, and I left all the major choices to Dad, but I've felt like such a coward this whole time. I feel like Mom would've had a better life had I not been such a wimp. And of course, I'm angry that society's priorities are all wrong (but that's a separate, extremely long rant).

Anyway, I promised myself I'd take a break today and rest up for tomorrow day program adventure. I've been wound up non-stop since the decline, and while it's so hard to take a break right now, cuz I feel like time with Mom suddenly got very very precious, I can't keep crying and losing sleep like this. I need a break.

And there's another question: How in the hell does anyone relax and take a break (let alone enjoy themselves!) while their mother is dying and father is suffering? How is that even possible? I know that's a question for the therapist as well, but I'm curious how everyone here does it. I'm trying very hard to gain a larger perspective on this whole experience, but it's gone out the window now that death is suddenly looming closer.

Thanks again. :)

MN Chickadee

I went through the same. My 80 year old father, her spouse of 50 years, was the primary decision maker, not really dealing with the toll it was taking and emotions. I had to do all the leg work, be the respite care, do research and basically coax him into all decisions to keep them both safe and as content as possible. Yes the constant grief. I could have written your post about grief and how the time with her seems precious yet you are so tired and need a break. It's unrelenting and only someone who has lived through it can really understand how complex it is emotioanlly. There was no time to stop and breathe and process. I also have children who were babies years ago when mom was diagnosed. I didn't really come up for air until long after she died more than a year ago. It took quite the toll on me mentally and physically. But now even though I miss her terribly and the grief is there, I learn to live with it and have decided the only thing to do to make her proud and honor her life and to deal with the terrifying idea that I too could meet the same fate is to live life well. To be generous and volunteer and be good to my family and laugh and have fun. Though the decade long Alz journey with her caused periods of extreme depression and anxiety, my approach to life now has shifted for the better; I guess that is the silver lining. I read an article in the Atlantic recently about what makes people happy, and the author posed these questions. It's something I try to incorporate into my decisions and outlook on life. My goal is most of the time to answer yes/yes.

Will this bring me enjoyment? Will it also bring me meaning?

Will this serve my interests? Will it serve the interest of others?

Did this make me feel afraid? Did I learn something from this fear that will lead to less fear in the future?

I don't know what to recommend other than therapy which helped me a lot and taking it one day at a time. There is light somewhere at the end of the tunnel. Thinking of you.

Jamie Fren

My grandmother had begun remeron to get her appetite stimulated after she was hospitalized for pneumonia and they needed to assess her swallowing ability before feeding her (this took days and she lost weight and it was frustrating). I read somewhere that lower doses may cause drowsiness and I am glad your mother is off of it. My grandmother was never the same since her pneumonia, and had similar sleepiness and difficulty staying awake towards the end. I believe she was on this medication for nearly two weeks before her passing. I don’t know if our experience is similar since before I left for a few days she had responded to me, and when I returned she barely uttered a word and stayed awake. She could follow directions, but her alertness was far gone. It is frightening, I know, but something that helped (even temporarily) are boost shakes that have 500ish calories in them to supplement for the small windows of time of appetite.

Marta

Recently Remeron (mirtazapine) received the same black box warning for use in dementia as the atypical anti-psychotics have had for years (Risperdal, Seroquel).

I'm so sorry for your Mom’s decline.

I wonder about the terms you have used: severe dementia, late stage dementia. I would not use those terms in someone who is able to attend a day program and verbalize her appreciation for the program. I wonder if using the Tam Cummings 7 stages of dementia would give you a more favorable view of your Mom’s current condition. The links to various staging tools are in the post a few below this one

The very best to you and your parents. They are lucky to have you.

LittleVolcano

@MN Chickadee - I don't know how to do the quote thing, but so much of what you said was comforting, mainly "Hey, it's not your fault!" I was literally sitting here thinking, "Well sh**, I'm the one who pushed for a geriatric specialist, and she's the one who prescribed the mirtazapine (why in the F do all these drug names have to be so horrible to spell? I should just call it Remeron), and I didn't research it before giving it to Mom when I would've easily found the black box warning, and blah blah blah" so when you said, basically that Hey, she's fragile, this disease is a mystery, and it could've been anything, it snapped me out of my spiral. I'll pass on what you've said to my father, because he is his daughter's father and I know he's beating himself up too.

And in regards to your second post, so much of that is just awesome. I'd love to discuss that with you more—you seem like a kindred spirit. I too am reshaping how I see life based on what I've experienced in all this (plus a sprinkle of the "easy" life I had before, ha!), but it's still pretty nebulous (maybe too much in the thick of it to really formulate a plan going forward). I do know that things have to change in my life, but with my all-or-nothing tendencies, my thoughts oscillate between Blow It All Up and Run Away vs. Drown Yourself in Booze and Video Games. Ha! As fun as those two options sound, I know enough to seek something less extreme. :D Anyway, I'd love to hear more from the future (ie, you).

@Marta - thanks for the clarification. I can't remember where I got the late stage description, but it seemed to fit Mom. And as far as the day program is concerned, Mom might not be able to attend after all. When I said that Mom was verbalizing appreciation for the program, that was me filling in the blanks after our initial 15-min tour. She didn't say that outright, and I probably should've noted that. When we went back for the 2.5 hour trial visit, Mom ended up being so agitated that I had to take her home early. So she might not be able to attend a day program; we'll see. I took a brief look at the Tam Cummings (thank you!) but I'm going to need more time to look at it more closely. I do want to have a "more favorable view" of Mom's current state. I think we're all just so shocked and afraid because the decline was so quick, and we've never had one that quick.

@Jamie Fren - Yes, exactly. It's like they were one person before the drug and a much different person after. I'm going to find out if I can report adverse reactions for a generic drug. My dog had an adverse reaction to a flea medication, but it was a brand name, so I reported it to the company (this was to get a refund, but I still think it was important to do). If I can do that with a dog's medication, I would think I could do that with a human medication. And, yes, we've been sneaking calories into her every chance we get. I made a chocolate, peanut butter, high protein smoothie for my Mom that made me gain weight just looking at it (and those three sips she took were deliciously calorie packed, ha!). And I'll mention Boost to my Dad as well to see if she likes.

Again, thanks to everyone for chiming in. Hugs to everyone. :)

LittleVolcano

UPDATE: So it wasn't TMJ that Mom was experiencing, it was temporal arteritis (aka Giant Cell Arteritis, aka GCA). Because of this, she lost most of her eye sight in both eyes and had head pain and scalp tenderness that's currently being treated with 40mg of prednisone/day. The head pain is subsiding, but ophthalmologist wants to increase the dose to 80mg to preserve what's left of her eye sight, but Mom's declining so fast in general, that (1) we're starting the process of admitting her to a small local residential home, and (2) our recently hired caregiver mentioned palliative care, considering Mom's state. I talk to a rheumatologist today to discuss all the tests that have been taken (blood, EKG, CAT scan, temporal ultrasound) to see if the dose increase is warranted.

In less than two months, Mom has declined so much. It's so hard to see her this way. I'm relieved that she'll be getting such good care (sorry Mom, but Dad and I just couldn't do it. I know that if you knew what was going on, that (1) you would've told us we were doing great, and (2) you would've been yelling at us long ago to get more help). It's a family run organization, maybe 6 rooms in the home, and each client and their families simply become one giant family community. It's the next best thing to home, I feel (maybe even better since she doesn't recognize her own home anyway).

So now I'm off to research how to transition an LO into a care home, as well as palliative care. I'm also making a list of Mom's favorite things to give to the care staff. As hard as this is, this will give me more energy to help Dad cope emotionally (it was too hard for me to care for both Mom and him...and he refused any sort of caregiver support groups or therapy).

So, yeah, I have no clue what happened with the whole mirtazapine thing. As Chickadee mentioned, Mom was in a vulnerable state—and Mom had also an aneurysm about 30 years ago and we think this is the root of the whole dementia thing now—and I've seen a handful of unexpected side effects from mirtazapine, not that I'm looking to blame anyone (anymore), but I still believe that the drug was the catalyst for something that caused this steep and rapid decline. I'm sure anything could've done the same; it's just unfortunate and sad. And now of course the prednisone might be taking her down even further (I'll be discussing that with the rheumatologist this morning).

Anyway, so that's what's happening at the moment. Thanks to everyone who chimed in.

Marta

Did the rheumatologist mention polymyalgia rheumatica (PMR)?

GCA and PMR often go hand in hand. PMR is a systemic condition and could be responsible for her rapid decline. It is often manifested by severe pain and stiffness in the hip and shoulder girdles, making movement very difficult.

PMR often responds well to low dose prednisone-10 mg.

LittleVolcano

@Marta - Thanks for the input. No, they didn't mention PMR, although they often ask if she's got hip and neck/shoulder issues, but she doesn't (as far as we know, you know how it is). Mom's on 40mg of prednisone now and they want to increase to 80mg to save what little vision she has left (but I'm wondering why we would want to up the dose if she's getting more agitated? I talk to opthalmology in 10 minutes to find out). Movement is definitely getting worse. We think it's because she can't see and is afraid to step forward, but maybe it's painful? Who knows? I'm just waiting to talk to palliative care at this point. The list of things that all the doctors want us to do for Mom is untenable and will only upset her more. I'm waiting for palliative care to review the list to see what's truly necessary at this point. But, again, thank you for chiming in. I don't know what I'd do without this forum and everyone in it. Big hugs to everyone.

Marta

I suspect that on a scale with loss of vision on one side and agitation on the other, preserving vision with higher prednisone dose would win in most circumstances. The agitation can be reduced by other means. Tough call, to be sure, LV.

You are doing an amazing job caring for your Mom.

LittleVolcano

Thanks Marta. Yes, we spoke to the ophthalmologist and he was more clear about the benefits of increasing the prednisone (He said it was very common that vision loss increases agitation greatly in those who already have dementia. It's probably not the prednisone, although he said that was still definitely possible). In good news, we feel she can still see a little at times, so with that knowledge and what the doc said, we're increasing her prednisone tomorrow to 80mg. I did mention the PMR and he called it the "little brother" of GCA but kinda left it at that, most likely because it's not applicable to Mom.

And props to the ophthal doc. I give Kaiser a lot of guff at times for their lackluster care model, but the opthal clearly saw how worried we are that Mom might plummet on more prednisone, so he scheduled a video call with us for the next three mornings to check in on us and her each day this weekend. How cool is that!? Mom's geriatric specialist has been amazing too. Super responsive and easy to get a hold of, and when Mom started showing signs of GCA, she immediately rallied people from rheum, neuro, PT, vascular, ophthal, and I'm probably forgetting others to investigate Mom's case. It was pretty impressive.

Anyway, not out of the weeds, but I've appreciated the support. Any department where you need to contact your doc via the Kaiser phone tree is sheer hell, but these specialists I'm dealing with (and I can contact them directly via phone or messaging) I'm pretty happy with (the treatments are still way too harsh and conventional for my integrative medicine tastes, personally, but I appreciate the level of support and genuine care for my parents). Nice to know that bedside manner isn't dead. :)

Marta

😀

LittleVolcano

Mom's officially in hospice as of today and is moving into a great local board and care either tomorrow or Thursday. It's been rough, but we're glad that Mom will have a team to look after her 24/7 and we can go back to being her family again.

Marta

👍

MN Chickadee

These days are precious when you can still touch her and tell her you love her. Cherish them. But they are excruciating as well especially as you get close to the end. Hang in there. You're almost done with the marathon but you have to find some more to give at the end. I'm glad you have found a care home you like.