Hi All,

I'm writing to ask if anyone has had positive experiences with Ativan as a prn med for agitation/anxiety. I'm going to be moving my mother from Cleveland to Philadelphia, about a 7 hour drive and if needed I want to have something gentle, but effective. She was recently dx w Alz w Lewy body variant, though I'm stil not quite sure I agree with this. Given this dx though and her sensitivites to so many meds I want to see what's possible.

She's on a low dose of Lexapro and Abilify currently along w Depakote. No dementia meds. Going to be asking her dr about this, but would love to hear what's worked for people.

Any natural remedies like chamomile work for anyone?

Thanks,
Caroline

My mother routinely receives Ativan PRN for anxiety and agitation and it works extremely well. It just calms her down and maybe makes her drowsy but does not knock her out. We have not experimented with any natural remedies.

Julianne

Hi Caroline,

There are people with LBD that take Ativan and don't have a problem but there are some that do have problems and I am hoping this is a drug that will be tried prior to the 7 hour trip if it hasn't already, wouldn't want a bad reaction on a trip that long in the middle of no where ! I do hope at some point she is able to be put on the Memory type drugs as they really are the best help for LBD.

Good Luck !

Thanks for your replies. I think I may have to stay away from it for now as I'm not sure of how she'll do. I do recall one time when she was in the ER and they tried to get an MRI and they had to keep giving her more and more Ativan before she would settle down for the test and she didn't get to her room until 3am!

She was also put on it more recently while in a geri psych hospital, but I don't know the results ( they didn't make it a regular med for her ) and I think she was also given Haldol which kind of numbed her out. I'm not sure if this info is available in the medical records or not. I didn't request the entire record when I ordered them, just summary notes and a few other things. I called the medical records and they didn't know if there would be notes on the meds or not. Ugh, this so much work. I'm too intimiated to call the dr. that treated her. He did a good job w her, but I don't think he would check this for me, he's a little cool I think.

I mentioned the above uses that I know of Ativan and mom's current and new psychiatrist thought we shoudl give her Abilify PRN since it's working so well for her. I of course have some concerns about that too. She gets the minimum dose of 1ml 2x a day. I have to ask him if he can prescribe half that or even less. I kind of don't like the idea of giving her a prn that is 1 ML as it would be a 30% increase in her daily dose. Does that make sense? I'm nervous about it. What I'm hoping for is that she won't need anything! She's pretty drowsy in the mornings already...

Irene, they took mom off Namenda in the geri psych hospital as they weren't sure it was doing anything and with her many drug senstivities we don't know if might not have been contributing to her cylces of psychosis. I'm still not quite convinced she has the Lewy Bodies either. I think my mom is easy to misdiagnose because of other issues. She really doesn't have a tremor, she's a little stiff but also has mild cerebral palsy. The doctor also wrote down that she has REM sleep behavior disorder. The only thing I told him was she used to have trouble sleeping as a younger adult so her doctor gave her a sleep aid. (Not using now) and that sometimes more recently I've heard her talk in her sleep.

I guess the only thing that fits the dx is that her first issue was that she had visual misperceptions- i wouldn't even call them hallucinations really and mild delusions starting in 2006. She got worse and did develop olfactory sensations and then seeing lace and nets I think..then this led to a pschotic breakdown. She also had cognivite impairment dx at the time.

Is this enough to dx someone with Lewy Bodies? Her short term memory is worse. She has also had problems with more misperceptions and sometimes auditory/visual hallucinations, but there is a strong chance that those were either caused by being on Seroquel. It's hard to say.
What do you think?

Caroline,
Sorry I missed your reply, here is a link that I think will help you with your question and I suggest you look around at the LBDA.org website, everything is there !

http://www.lbda.org/content/it-lbd-or-something-else

Caroline:

My husband is in a geripsych unit right now and was given Abilify over the weekend. The first thing I said when the nurse called me for permission to give Abilify to my husband was that this drug is not approved by the FDA for use with elderly patients with dementia, and they even say this in their commercial on TV.

Thank God the regular psychiatrist discontinued the Abilify this morning, but now he wants to put my husband on Tegretol, which is an anti-seizure medication, and I'm saying, "Say what? That's an off-label use. Why?" I was given an article from psychiatryonline.org to read about the use of this drug for dementia patients and will meet with the psychiatrist on Wednesday.

And of course, his nurse asked me the following question today, "If you want your husband to get help, why are you second guessing what the doctor is prescribing?" To which I replied, "Because my husband has major sensitivities to medications, even had a major problem with a medication a few months ago (which darn near killed him), and because I am not a blind follower when a doctor prescribes something (especially when it comes to doctors loping Lewy-Body Dementia with all the other dementias out there, thinking that a particular med is a one size fits all med)."

It will be interesting to hear what his psychiatrist says on Wednesday.

As for Ativan, I agree with the others here. Use it only as needed, not on a regular basis.

Beth - you are so right to ask questions and continue to advocate for your LO. The attitude that all drs. know everything and never to question them doesn't always work, does it? As many, many people on this forum have experienced, there are still lots of health care professionals who know little or nothing about LBD, and since patients have so many different experiences with drugs, it is imperative to do what you think is best for your LO. Do research, ask questions, let the health care team know about your LOs sensitivities. The "doctors are gods" idea and never to question them is not helpful, IMHO. Best, Lynn

Caroline, many meds can cause a bad response for LBD patients. That is why after hunting and searching for what seemed like forever, I put together and included a pretty extensive list of probable bad players in my book for early stage LBD caregivers. Most of the "Beware List" was provided by a member of LBDA's Scientific Advisory Council who is an LBD specialist at UNC.
Here is the link if you want to check it out:
http://www.amazon.com/Treasures-Darknes ... roduct_top

Beth, I agree with Lynn that you were so right to challenge and question any medicine that could cause a problem for your husband. Anyone discouraging you does not understand your role as his primary caregiver. We here totally understand it.

Pat

I don't think anybody knows the reactions that giving new medications will cause. I hear of so many people taking exlon patches. We tried them on my Dad just after we lost my mum and he had really bad hallucinations and was much more confused than before so we stopped them after a couple of days. Later on I began to wonder if my Dad was like that because of losing mum so asked his neorologist if we could try them again but we had exactly the same results the second time and had to discontinue them. The neurologist was really surprised by his reaction to the drug but I think that each patient is very different. I think that it's always better where possible to try new drugs at a time when they aren't having upheavals in their lives and then you will know if the reaction is caused by the drugs or the change in their lives.
Val

Val, you are right. Every patient with LBD is different. But there are certain drugs to be cautious about with this disease. Some patients tolerate and respond well to one, then cannot tolerate another...even over time their response might change.
My John could not tolerate sinemet a few years ago, but his brain seems to need it now.
I think the key is to approach any medication with the "low & slow" technique. That means starting with a low dosage increased very slowly if it helps without bad side effects.
Fortunately for many LBD patients, the cognitive meds often work better than with some other dementias. But you have to find the right one for your loved one and the right doctor who understands how to administer the meds.

Pat:

I agree with the low and slow method when trying new meds for LBD patients. The psychiatrist wanted to start my husband on Tegretal at 100 mg three times a day, which is 100 mg more a day than the prescription desk guide recommends for elderly dementia patients.

My husband's neurologist was consulted and he recommended Seroquel and Tegretol be started at the same time, which is stupid to me - because if he has a bad reaction, how will they know which med is causing the reaction?

Going to have to stay on top of this.

Beth, you sure are!
Isn't it exhausting sometimes to feel like we have to be on the alert intensively whenever a medical person comes near our loved ones???
I wonder what we can do to make them more aware of how easily they can harm those we love so much due to their ignorance. And often it is neurologists who are making the worst decisions due to their ignorance of LBD's drug hypersensitivities. I have found many nurses to be more open than doctors (God complex maybe?).
Every time I am in a situation with an LBD patient and a doctor, I end up playing the teacher role again. But I guess if we all keep doing that over and over, and not get intimidated because they have the medical degree and we don't, then perhaps over time we will have the desired impact.
At the seminar I organized that was put on last week in our community for dementia and Parkinson's caregivers, I reminded the attendees that caregivers act as the COACH. We get to hire and fire the docs. We get to decide who plays in this game with us and our loved one. We get to approve or not approve of the major plays. (I will put more in a post in the Practical Tips section.)
Hang in there, Beth. And do not hesitate to insist that any doc do the more careful and right thing by your husband. Docs are sworn to "do no harm."
Pat