My mother has been on Seroquel, now 25 mg. at breakfast, 25 mg. at lunch and 50 mg. at bedtime. She has just recently increased the dosage to include the 25 mg. at lunch. She is very weak and unstable with her footing. She feels as if she is no longer strong. She still has hallucinations and we are treating her like a guinea pig with regard to drugs and dosages. It breaks my heart as I feel helpless, being her daughter. She lives with her husband who is also trying his best to help her cope.
My question is has anyone ever tried the drug Abilify? Also, is the Exelon Patch good with getting rid of hallucinations? Are the side effects minimal compared to this Seroquel stuff?
Thanks.
J. Gable

Exelon is what works well and has helped many with Hallucinations, if the person tolorates it, I know it worked well for us!
Good Luck!

If your mother's MD has not tried her on Exelon, Aricept or Razadyne and gone for the big gun of Seroquel first, I'd suggest you get a different MD.

Read Boeve's "Continuum" paper on lbda.org for a suggested treatment regimen of someone with LBD who is hallucinating. First order of treatment is an AChEI (Exelon, Aricept or Razadyne). Then you'd go for a big gun like Seroquel.

Abilify is another atypical antipsychotic. Please do a search of past posts on this medication to see what others have said about it.

Though I am waiting for a definitive dx on my LO for DLB - I can tell you that Abilify did not help him with Hallucinations; in fact, I think it made him worse. He seemed to have increased psychotic behavior on even a small dose of 5mg a day. We kept cutting it back to nearly a crumb (1.25mg) a day and he was better, At the time, we were treating him for a psych dx and the doctor did not consider it could be dementia (he's only 47). Taking it completely away didn't help either. So hard to treat.

Clozaril has helped the psychotic issues and behavioral issues.

Hope this helps. Good luck,
Jane Grace

JaneGrace: I feel your frustration. Being very familiar with anti-depressants, antipsychotics & benzodiazipines, I can tell you that these drugs can be so very harmful to some people. Part of the problem is that whenever they are prescribed, drs. rarely start out more slowly than recommended & rarely closely monitor the effects. Furthermore these drugs stay on board in the body's muscle & fat & often take a long time to disappate in the body so there's an added problem until they are gone. There are cases of very young people having dementia & yet many drs. are inflexible when it comes to considering this dx. Forty-seven is also very late to develop BiPolar disorder so I'm rather surprised that the dr. has stuck with that type of dx. I'm so sorry you have to go thru this. I know how difficult it is to accept this dreadful condition no matter what the cause is. It is awful & tough & no one except those in this wonderful community understand what it is like to live with it whether a LO is at home or in a facility, the toll it takes is incredible. I hope you continue to stay strong & find the patience to deal with what faces you. Be well & take care of yourself. Dee

Dee
Thanks for responding and the encouragement. This is truly a journey. I have so many unanswered questions.

In regards to my LO - he had a psychotic break as a teenager then was fine for 30 years (did not see a psychiatrist or take any psych meds). As a teen he had ECT's that worked remarkably well and returned him to normal. I met him after that time. During the 30 years he had some ups and downs (and now I wonder if they were more severe than I realized) - but nothing I didn't think was unusual - I have ups and downs too.... don't we all? He worked and functioned normal - Always had a job and provided for us. I noticed subtle things for a year or so before all of this started; it began in March 2008 with an episode of confusion, disorientation. That was rather short lived then he had about 6 weeks of doing pretty good, but not himself - was easily distracted, forgetful, panicky at times (especially panicked that he would forget something so he carried a little notebook in his pocket and kept it by the bed). Then in May 2008 he had a psychotic break. and it goes downhill from there - very long story which I wrote in detail under "Needing some Insight" in another area at this forum several days ago. Based on his past history and what was happening in May, the doctor's were pretty sure it was typical Bipolar with psychotic features and did not seem to think it was odd that he had functioned well for 30 years. By the way, his mother had a hx of anxiety/depression that required ECT's several years ago, so along with her hx., it made sense to them.

We have had several different doctors and over the course of this, My LO had been given resperidol, Abilify, some haldol injections (short acting), then haldol oral, Geodon, then the big bad Haldol decanoate - long action slow release haldol - OMG had we known!! I would never have consented! I have so much guilt over that. He had such a bad reaction he ended up in ICU twice. The doctor we had then (not the one we have now) accused my LO of "faking it" - while he was in the ICU with critical CPK levels! He signed himself off the case!! Which was a good thing, but STILL - I am bitter ...

After that, the next doctor tried Geodon again (he didn't believe me when I told him it didn't work before...) more bad reactions - though a bit different than with the haldol. During all of this, my LO also had two rounds of ECT's which helped only to an extent and only for a short time then before long, he would be psychotic again. He was also emotionally incontinent and his parents were so upset that he wasn't on an antidepressant (we took him off of that when he was in the ICU). THis was months later so I talked with the doctor. He gave prozac - a chld's dose - and my husb began to get worse - anxious, mania. I stopped the drug and waited until the symptoms subsided. His parents were insistent that we try another one. Given his mother's hx - they were worried. It took several different attempts to find a med that worked for her so they felt we needed to keep trying to find one for my husb. too.(oh, had I only known....). So the doctor tried Lexapro - 5mg/day (a chld's dose). In 3 days he was so out of control - manic - etc. he was in the hospital 10 weeks. (His parents STILL think we should try another one!!) During his 10 week stay in the hospital, we acquired our current doctor. He tried zyprexa along with different mood stabilizers and when he saw how he responded, he stopped the meds and talked with me about Lewy. Since I had been researching it, I was relieved that someone else wondered too. I had talked to the previous psych doctor about my concerns of the obvious loss of cognitive function and he did not take me seriously ("well, that's what happens with severe bipolar....."). I thought, REALLY???

Here's my question: I have seen benzo's talked about here as being not good for DLB - my LO had been on these many times and I felt they were not effective. But once in a while, a shot of ativan would actually work and blow my theory out of the water. I had (and still have) trouble getting the health care people to listen to me (and I am an RN, by the way). He had a flare up recently at the nursing home and the doctor ordered ativan 1mg IM with Benadryl to help the aggression. It did not work at that time, but another dose of ativan (without benadryl) was given later and seemed to help him rest for just a short timte. From what I am reading here, I see that it is common for Ativan and Benadryl to not be effective. Can you give me more information about why benzo's and benadryl should not be used. what are some of the anti cholinergic drugs we should avoid. And what would one recommend instead for an acute flare-up. What should I tell the doctor about the use of benzo's and benadryl? I should mention that he is not a dementia specialist; he is a psychiatrist. He did not dx. my LO with Lewy, he merely mentioned it a couple of times as we talked. He has been supportive and states he believes my LO has a dementia process either co-existing with a psych issue or that the psych issue is secondary to the dementia. He referred us to a local Univ. hospital where we are now in the beginning stages of getting some further testing and seeing the dementia specialist there.


My LO is currently not on any benzo's but he does take Klonopin and Buspar for anxiety. He takes Clozaril which has helped the behavior aggression (yet he did have this recent flare up without a change in his meds). I see that these drugs do appear in Boeve's list as OK for DLB.

Thanks for any information you or anyone else can give me!!
Peace,
Jane Grace

Jane Grace,
Could I suggest you start your own topic for your post and question(s)? This topic is about hallucinations.
Robin

Sorry Robin - I didn't mean to be rude; I was merely responding to Dee who had responded to my earlier post, which WAS about Hallucinations.

Sorry again!
JG

My husband was put on 1 1/2 mg of Risperdal last April and hasn't had a hallucination since. He's also on the Exelon patch, but I'm convinced it was the Risperdal that stopped the hallucinations. The "guinea pig" syndrome is common with LBD because individuals respond differently to different medicines. My husband does not tolerate Seroquel well, but others do. You might try Risperdal (Risperidone).

Did he take the whole 1 1/2 mg. at once? My MIL was taking 4mg. spread out throughout the day and she turned into a zombie. They gradually increased, then gradually decreased the dosage, but we never seemed to find a way to keep the hallucinations away and preserve her quality of life. Such a challenge.

Yes, my husband takes the 1 1/2 mg of Risperdal all at one time at bedtime (along with several other medicines). That's the only way he's ever taken that medicine, and he hasn't had one hallucination in 7 months.

My husband takes .25mg of risperadal twice a day. It's a very small dose but we had to keep cutting it back because of the zombie side effects. He had severve violet hallucinations a year ago and once on this he is 99% hallucination free. Oh yes he picks at things on the floor from time to time and thinks he is places he is not, but the severe ones where he wouldn't come out of it are pretty much under control for now. Could you perhaps ask your dr. about cutting it back? You can always increase later.

Thank you both for your replies. We started her on the Exelon patch 2 weeks ago (days after discontinuing the resperidone.) If the hallucinations come back, I will keep it in mind. Although, MIL had a severly stiff neck that has gone away since she stopped taking it. We'll see... one day at a time.

Glad to be on the journey with you both. Kirsten

One neurologist I know puts Risperdol in the same category as Haldol, in terms of the anti-dopaminergic side effects. Supposedly the two best anti-psychotics for not making parkinsonism symptoms worse are Seroquel and Clozaril. But not everyone can take these meds. And some do just find on Risperdol.

My wife is being seen at Georgetown Movement Disorders Clinic. Her Primary Neurologist removed her from Seroquel and put her on resperidone. Goergetwn is removing er from resperidone, did away with seroquel andhas her on the Exelon pach. right now her hallucinations are worse and her memory is getting very very poor. She has problems sleeping and is often constipated. Any suggestions?