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Topic seroquel & exelon.. your opinons please Go to previous topic Go to next topic Go to higher level

By daisy On 2014.09.20 09:38
Dh has been experiencing significant cognition problems with hallucinations and paranoia. He was put on the Exelon patch 4.5mg. but it had no effect at all. Consequently, I withdrew the patch and following our last consult (not our regular neuro) it was decided to titrate up to the 9.5mg patch and start Seroquel at 25mg. We have held off with the Seroquel to see first if the patch does any good this time and also because DH usually reacts VERY badly to antipsychotics. Even though it is a very small dose, I'm still hesitant about using it. Would love to hear of your experiences with these drugs?

By jaxrock On 2014.09.20 10:27
My husband has been on the 9.5 mg Exelon patch for a few years....no problems at all, so far. I did notice an improvement in his cognition, too.
At bedtime, he take one Seroquel - 100 mg - it helps with his anxiety/panic attacks and he sleeps much better.
Good luck with whatever you decide....

By LC On 2014.09.21 09:39
My husband had some pretty serious hallucinations after a slight increase in his Sinemet. He was seeing people in the house and in the yard. They were trying to steal the car. He didn't recognize me. We tried Seroquel but it didn't help. He is currently using Clozapine. It has eliminated the hallucinations, but any attempt to increase his current Sinemet dosage results in a recurrence of the hallucinations.

By daisy On 2014.09.21 11:34
LC. Similarly, any increase in Levadopa (my DH is on the Duodopa pump) brings on hallucinations and related psychosis. I have reduced his meds down as low as possible without losing motor function.

He does already take clozapine at night time to help with his REM sleep and restless legs. It works really well, unless he forgets to take it, which he did the other night. OMG!

It's a juggling act to get the right cocktail of meds to manage the different symptoms as they crop up. DH's cognitive problems have crept in over several years. Hallucinations are only one part of the problem but I'd happily take any solutions..

By Mary556 On 2014.09.22 07:57
Daisy, my PWP Mom has been taking 25 mg Seroquel at bedtime since last September. Initially I had qualms when her doctor gave that prescription. Every person is different, but in my mother's experience, low-dose Seroquel has improved her quality of life. She is more rested and calm during the day after peacefully sleeping through the night. she wakes up once or twice to use the bathroom then goes right back to sleep as soon as her head hits her pillow. At some point her neurologist said we could try 25 or 12.5 mg Seroquel in the morning... not every day, but whenever Mom had excess anxiety to warrant it. One day I did give her 12.5 mg but that did not go so well. My PWP seemed intoxicated... rubbery legs, slurry speech and no wits about her. I was afraid she would fall.
The other side of my mother's coin is anti-depressant. She has too many crying episodes without it, but she is very sensitive to that type of med. she has side effects of dangerously low blood pressure or upsetting delusions /alternate reality, not recognizing family members, etc.. Her neuro doc said she could try taking only Seroquel with no anti-depressant, but without the stimulant to offset the effects of Seroquel during the day, she was way too groggy.
It is difficult to find the right balance.
Best wishes and prayers for you and your husband.

By JulieB On 2014.10.01 09:14
Daisy, there are so many medication issues for our PWPs, it seems. It's hard to know what to do, especially since doctors don't all agree on what's best.

My husband Michael was diagnosed with PD in 2004. He developed symptoms of dementia around 2009-2010, which we later learned was Lewy Body Dementia. Most of you know how different LBD is from Alzheimer's, but here's a link for those who would like some brief information:

http://www.lbda.org/node/8

A few weeks ago Michael was experiencing hallucinations and delusions severe enough for his neurologist to prescribe a low dose of Seroquel, one of the few antipsychotics deemed safe enough to try on Lewy Body Dementia patients. He was only able to take it for three days, as it lowered his blood pressure too dramatically and he was falling each time he tried to stand.

Parkinson's Disease itself often causes orthostatic hypotension issues, and here's a link about that for those who might be wondering about their own PWPs and low blood pressure:

http://www.pdf.org/fall11_low_blood_pressure_pd

Then on top of that, Sinemet is well known to further cause low blood pressure, and you can find the documentation about that all over the internet, but here's a link about Sinemet and low BP:

http://www.parkinson.org/parkinson-s-disease/treatment/medications-for-motor-symptoms-of-pd/carbidopa-levodopa

So my Michael, who used to have high blood pressure years ago but now has low blood pressure (80/50) because of the PD and the Sinemet, began taking Seroquel, which has a serious side affect of....guess what? Low blood pressure. On the third day of taking Seroquel his BP dropped to 60/30 and of course they discontinued the Seroquel.

Still the terrible hallucinations and delusional thinking continued, and I scoured the internet to find what might help. I found a neurologist at Stanford University who said Exelon can be effective for someone who was diagnosed with PD first, which developed into Lewy Body Dementia later. Apparently there's another kind of Lewy Body, the kind that presents first as dementia, then Parkinsonian symptoms develop later. Exelon is said to be more effective for the former kind OF LBD, and not so much for the latter. Michael is in the first group.

So my dear man has been on the Exelon patch for about 5 days now, and so far seems to be slightly improved. His daytime cognition seems better and the horrible, tormenting night-time agitation and hallucinations (visual, tactile and audio) have eased a bit. For any relief at all, I'm so grateful.

I know most of you on this forum are so knowledgeable and are miles ahead of me, but maybe there's someone new here who hasn't heard of Parkinson's with Lewy Body Dementia, and your loved one has cognition that fluctuates dramatically (relatives come to visit and say "He's doing so well!"; that very same night you're almost losing your mind with his/her behavior and confusion). Maybe your loved one has noticeable sleep disturbances (they're saying this is possibly a very accurate indicator of LBD to come in later years -- my husband had this for decades), has Parkinson's symptoms, and loss of autonomic function (incontinence, low blood pressure and more), then please research Parkinson's with Lewy Body Dementia.

Michael's prescribing psychiatrist at the Veterans Home where he receives care said he is "textbook, classic Lewy Body," but Michael's neurologist missed it, even though all the symptoms are there and she was informed about them. This current psychiatrist/doctor has had experience with PD with LBD and said (as I've read many places) that if a person has Parkinson's and begins to experience dementia, it is almost always Lewy Body Dementia, not Alzheimer's. Of course there are exceptions, but the two are different enough, and the treatment and meds and outcomes are different enough, that knowing which one our PWP is dealing with is very important.

A good place to start is:

http://www.lbda.org/

There aren't many people who understand this road of sorrow. Thank you all for sharing your lives here.

Praying everyone has something beautiful or joyful in their coming days....

xoxo Julie


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