View unanswered posts | View active topics It is currently Thu Jul 24, 2014 2:38 am



Reply to topic  [ 17 posts ]  Go to page 1, 2  Next
 Severe agitation - help! 
Author Message

Joined: Wed Nov 13, 2013 3:04 pm
Posts: 36
Post Severe agitation - help!
Has ANYONE out there experienced this with their LO? My mother is hospitalized for severe agitation and depression. Her meds at the time of admission: Cymbalta 60 mg (to treat neuropathy and depression) Lexapro 5 mg Seroquel 75 during the day, 100 at night, Ativan .5 - 3 scheduled daily doses AND PRN doses of Seroquel and Ativan. NONE of this touches my mom....it's like she is on speed. She has been hospitalized for one week and a half and they have started Depakote for agitation. This is day 3 and the worst day so far! It took me, my brother, a sitter to keep her from crawling over the bed rails all the while screaming and crying. She screams for scissors to cut her clothes off. I have never seen or her of any one human suffering mental anguish to this degree. This went on for 5 hours. I am extremely desperate and at my wit's end. We have to have a sitter 24 hours on top of assisted living. On the day of admission, it started around 2:00 p.m. and was still going on at 5:00 a.m. I am wondering if this is the meds working against her or terminal agitation? No answers. (As far as disease progression, she is def in stage 6 of 7....not in reality, but eats well.)


Sat Jun 14, 2014 1:09 am
Profile

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3305
Location: Vermont
Post Re: Severe agitation - help!
I have known of family members of 2 people with agitation at this level. Both had to be hospitalized and put on very powerful drugs. Most times I think drs. can find a med that will work enough that the person can remain at home, in an ALF or SNF, but sometimes that isn't possible. I hope they find something to calm her at her ALF, but that doesn't always happen. Sending best wishes that things work out FAST! Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Sat Jun 14, 2014 8:15 am
Profile

Joined: Tue Apr 29, 2014 4:27 pm
Posts: 75
Post Re: Severe agitation - help!
denshaw1 wrote:
Has ANYONE out there experienced this with their LO? My mother is hospitalized for severe agitation and depression. Her meds at the time of admission: Cymbalta 60 mg (to treat neuropathy and depression) Lexapro 5 mg Seroquel 75 during the day, 100 at night, Ativan .5 - 3 scheduled daily doses AND PRN doses of Seroquel and Ativan. NONE of this touches my mom....it's like she is on speed. She has been hospitalized for one week and a half and they have started Depakote for agitation. This is day 3 and the worst day so far! It took me, my brother, a sitter to keep her from crawling over the bed rails all the while screaming and crying. She screams for scissors to cut her clothes off. I have never seen or her of any one human suffering mental anguish to this degree. This went on for 5 hours. I am extremely desperate and at my wit's end. We have to have a sitter 24 hours on top of assisted living. On the day of admission, it started around 2:00 p.m. and was still going on at 5:00 a.m. I am wondering if this is the meds working against her or terminal agitation? No answers. (As far as disease progression, she is def in stage 6 of 7....not in reality, but eats well.)


Everyone in our family who has ever been on Ativan has had rage from it, I wouldn't touch it. Xanax has been a miracle drug for my husband and it is a benzodiapine like Ativan. Google Ativan/rage issues and you may have the answer. my brother-n-law ripped his iv and tubes out, when they got him off Ativan he was fine and I could tell you a dozen more stories like that about Ativan use. Plus if you go to drugs.com and put cymbalta and Lexapro in the interactions checker, it says it can cause many horrible things including sudden death.


Sun Jun 15, 2014 5:43 pm
Profile

Joined: Sat Oct 06, 2007 4:28 pm
Posts: 716
Location: LA
Post Re: Severe agitation - help!
Here again is one of those cases where there is no absolute. My husband was in the hospital and it was obvious he had reached the end of life's journey. He refused all pills by mouth saying, "No More!!". Our Geriatric Psychiatrist along with neurologist and family doctor talked about medicine needed and I allowed them to give Ativan. Knowing it was a risk. My husband was then at complete peace as we watched him settle down for his final days. Later he just went to sleep when the time came.

_________________
"See this lady, she's 85, but she's nice"


Sun Jun 15, 2014 6:48 pm
Profile

Joined: Sat May 25, 2013 3:53 pm
Posts: 230
Post Re: Severe agitation - help!
Denshaw, I hope they've found something to calm your Mom by now. I thought I'd mention that PRN does of seroquel sounds funny to me as I thought it was a drug that had to be administered regularly to get a level in the bloodstream that would have any effect. That was the drug that calmed my mom the best - and got her some sleep.

_________________
Gail, Forum Moderator & daughter of Doris who passed away Dec. 2010 after living with LBD for 7 years.


Mon Jun 16, 2014 1:09 am
Profile

Joined: Wed Nov 13, 2013 3:04 pm
Posts: 36
Post Re: Severe agitation - help!
Hello,
We are still at wit's end. Mom was discharged with a new med regimen, which worked for 5 days, now, again all *(()& has broke loose, AGAIN.

They upped her Ativan to 1.5 mg RELUCTANTLY thinking this would overmedicate her. NOT! She has been on Ativan for decades with no problems, but obviously has built a tolerance. It did seem to bring peace to all for a time. They took away the Lexapro, had to leave her on 30 mg of Cymbalta for neuropathy, and added 7.5 of Remeron at night. (She cries ALOT!!! Severly depressed!)! Yep, she had a few GREAT nights and days. Now, we are back to square one. They want to send her to a geriatric hospital where private sitters are not allowed. She is very fearful without them. I had her there once, and signed her out early, one of the patients assaulted a CNA severely, and we witnessed it! Not a safe place!
This is her * now: 1.5 mg Ativan 3x daily 50 mg. of Seroquel at 4:00 p.m. bedtime: (Ativan), 100 of Seroquel, and 7.5 Remeron. They facility called me in the middle of the night last night....she was like a possessed person....seeing fire, screaming, biting hitting, pulling hair, spitting out her meds, etc. I am sure we will be kicked out soon. And my sitters are dropping like flies. NO PEACE for this DESPARATE family. The self-proclaimed expert in Lewy Body at the hospital just thought our techniques were off. Let her spend a day with her!


Sat Jun 28, 2014 4:18 pm
Profile

Joined: Mon Nov 25, 2013 7:33 pm
Posts: 38
Location: Pennsylvania
Post Re: Severe agitation - help!
Denshaw, my heart breaks for you. Your circumstance is very similar to what I experienced with my mom. Here is what eventually got her to a calmer state and lasted for the duration of the 3 months prior to hospice. Seroquel 25 mg three times a day (8 AM-2PM-8 PM); Depakote 125mg twice a day (8AM -2 PM); Depakote 250 mg every evening (8PM). If she had increased agitation with this regimen, she had available Seroquel 25 mg every 6 hours as needed. This was occasionally used around 4 PM, her witching hour, but not often. Prior to this regimen, she had been on increasing doses of Ativan also. It seemed to be making things worse and was discontinued. Remeron had been tried briefly, too. The night before we went home on hospice, she had an extremely heightened state of agitation. Hospice ordered Lorazepam 1mg every 2 hours for anxiety. After that episode, it was not needed again until the timeframe during her last 24 hours of life. I hope this information is helpful. Everyone is different in their response to medications, but it is worth discussing with her attending physician. Good luck.

_________________
Marian, daughter of mom [82] diagnosed with LBD November 2013 after 7 years of a textbook course of this disease. Passed on January 26, 2014 following a week of home hospice care.


Sat Jun 28, 2014 10:21 pm
Profile

Joined: Sun Mar 30, 2014 5:11 pm
Posts: 71
Location: IL
Post Re: Severe agitation - help!
Hello, denshaw1. I'm so sorry that you and your family are having such a difficult time keeping your mother calm.

My question is what kind of input (if any) is your mother's geriatric internist/neurologist/ psychiatrist giving? It sounds as if the facility was not consulting with your mother's personal physician, who undoubtedly could supply a history of medications taken and their efficacy (or lack thereof). Of course, any notes you have on meds and dosages that your mother was given in the past and the outcome will be very helpful for any doctors she sees. But now that your mother has been discharged, her personal physician should be taking charge. You shouldn't have to figure this out on your own!!

Since it's the weekend however, if your mother continues to be in such a stressful state, you may have to go the ER to get her the help she needs. What a sad situation! I feel for you...By the way, Lorazepam is the generic for Ativan. AnneAAA

_________________
AnneA -- Forum Moderator; also daughter, caregiver, and patient advocate for Jean, who died of LBD in January, 2013, at age 91.


Sat Jun 28, 2014 10:46 pm
Profile

Joined: Wed Nov 13, 2013 3:04 pm
Posts: 36
Post Re: Severe agitation - help!
First off...thanks to all of you who shared their experiences.

Update:
still hospitalized.
week1: had to stabilize her...refusing meds and some food
week 2: psych doctor wanted to tried upping her Seroquel significantly. result? MAYHEM
she has scream hours on end and even tried to kill herself with the call bell cord.
I still have 24 hour sitters with her, but have had to change the shifts from 12 to
8 hours due to the severity of her behavior
week 3: they are looking at Geodon and Clonzipine (sp?) Keep in mind Zyprexa helped
but after 6 weeks she was a three person assist.....we may be FORCED to go
back to that

ALSO, the social worker at the hospital insists she be moved from assisted living lever to skilled. HOWEVER, she has been rejected by them all so far....WHO CAN BLAME THEM?

?????????????????????????????????????????????????????????????

Bottom line...I feel the Seroquel is working against her and perhaps even causing the agitation.????????????????????????????????????????????????????????????


Mon Jul 14, 2014 11:09 am
Profile

Joined: Mon Nov 25, 2013 7:33 pm
Posts: 38
Location: Pennsylvania
Post Re: Severe agitation - help!
Denshaw 1, I have been wondering how things have been going for you and I am very sorry to learn via your posts that there is no improvement. It is incredibly amazing and frustrating how medications work so differently for persons afflicted with this horrible disease. I wish I had some experience based wisdom for you, but I don't. You are doing everything possible on behalf of your mother and I will keep both of you in my prayers.

_________________
Marian, daughter of mom [82] diagnosed with LBD November 2013 after 7 years of a textbook course of this disease. Passed on January 26, 2014 following a week of home hospice care.


Mon Jul 14, 2014 3:12 pm
Profile

Joined: Wed Jun 25, 2014 11:29 am
Posts: 7
Post Re: Severe agitation - help!
Seroquel caused my husband severe hallucinations. Closipine worked to calm him the second time that he had to go to the Psychiatric ER. Hope this helps.
Adele


Mon Jul 14, 2014 4:19 pm
Profile

Joined: Wed Nov 13, 2013 3:04 pm
Posts: 36
Post Re: Severe agitation - help!
Thank you. They have mentioned Clonsipine (sp?) as plan C. Plan B is Zyprexa, but it made her a 3 person assist before. The attending doctor has stated, "This is as bad as it gets." I agree.

Today's update: Though I STRONGLY suspect Seroquel is causing her agitation, they have upped her 200 mg dose, on which she was doing terribly, to 400 mg. Holy cow. I am scared. This is her third week in the hospital. So far today, she was calmer, but when they upped it Sat night with a larger dose at bedtime (50, 50, 150), she tried to commit suicide by wrapping the call bell cord around her neck. (fortunately, she is not adept with her hands) Yes, I did report this. (We have round the clock sitters.) The more I report, the more Seroquel she gets. The sitters are keeping night diaries beginning tonight. I have shared my Seroquel concerns, but they are stuck on it. I did read on some other topics here that LO's were having agitation from it as well. This is going to be interesting...all at my dear Mom's expense, of course. I asked for Hospice, and they are saying "she has three more years"...I said "I won't make it three more years." They refused it, and said she is not aspirating...etc.... THANK YOU ALL FOR YOUR CONCERN AND INPUT. God help us all.


Tue Jul 15, 2014 2:01 am
Profile

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3305
Location: Vermont
Post Re: Severe agitation - help!
I'd be wanting to decrease the Seroquel and not give her anything new till that's out of her system before trying something new. Is there anything else they have suggested trying? Is there another hospital you can take her to? Their telling you that she has 3 more years sounds particularly strange to me, since every dr. and everyone I have ever known with this disease says how longevity is SO unpredictable! I think I"d be looking into an alternative hospital if that is possible. Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Tue Jul 15, 2014 9:34 am
Profile

Joined: Wed Jun 25, 2014 11:29 am
Posts: 7
Post Re: Severe agitation - help!
When my husband went into the Psychiatric ER the first time he was given depacote to control him because Resperidal caused him to manifest as a paranoid schizophrenic and it took 5 big men to pin him down to medicate him. While in there, the LBD was diagnosed thanks to a caring Psychiatrist who put the puzzle pieces together. Once she understood the issue was LBD, all meds were discontinued until he eventually calmed down. All my husband Bill takes now is Aricept. His doctors are very reticent to give him anything else because of his bipolar disorder which also has contraindications with meds so it is a double whammy. Bill is mid stage and a calm and serene environment (not at home because he is then faced with all of the things that he can no longer do and remembers life as it was which can no longer be) seems to be the most effective way to promote calmness. Adele


Tue Jul 15, 2014 10:19 am
Profile

Joined: Wed Nov 13, 2013 3:04 pm
Posts: 36
Post Re: Severe agitation - help!
Thanks, everyone. I am going to ask to discontinue this massive dosing of Seroquel today. They will be going to Zyprexa, which will cause her to go into a nursing home due to weakness. We are now at the point....a peaceful mind and a weak body is better than a highly agitated mind and a little mobility in a wheelchair. This seems to be a no-win situation. When we tried lowering Seroquel last year, she became extremely paranoid and quit talking due to "surveillance". She was doing OK on 100 mg last year, but then she starting having delusions of rape and fire. The journey continues.....


Wed Jul 16, 2014 10:04 am
Profile
Display posts from previous:  Sort by  
Reply to topic   [ 17 posts ]  Go to page 1, 2  Next

You cannot post new topics in this forum
You cannot reply to topics in this forum
You cannot edit your posts in this forum
You cannot delete your posts in this forum
You cannot post attachments in this forum

Search for:
Jump to:  
Powered by phpBB © 2000, 2002, 2005, 2007 phpBB Group.
Designed by STSoftware for PTF.
Localized by Maël Soucaze © 2010 phpBB.fr