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 Trouble Breathing when Sinemet wears off 
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Joined: Fri Oct 28, 2011 1:31 pm
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Post Trouble Breathing when Sinemet wears off
My mother has difficulty breathing and sometimes swallowing when Sinement wears off? She takes Stalevo 8, 11:30, 3, and Sinement CR at 7:00. By midnight, she is waking up and having serious trouble breathing. She takes Symbicort and has a rescue inhaler, but I don't think it is asthma. The rescue inhaler doesn't seem to help. She usually gets better in about an hour. By morning, she is drooling and needs assistance getting out of bed and to the bathroom, but the breathing problem is gone. Any suggestions?


Wed Dec 28, 2011 1:19 am
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
Post Re: Trouble Breathing when Sinemet wears off
These sound like "wearing-off" symptoms of Sinemet. Have you spoken with your mother's neurologist (or movement disorder specialist) about medicating for these off-times?


Wed Dec 28, 2011 2:51 am
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Joined: Fri Oct 28, 2011 1:31 pm
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Post Re: Trouble Breathing when Sinemet wears off
Yes, the neurologist prescribed sinemet cr, but it doesn't last through the night. Actually, it only lasts about one hour longer than stalevo. It definitely is wearing off, but how do you keep it from happening during the middle of the night, and do other lewy body patients have breathing problems with wearing off? Also, we are going to have to move her medications even closer together during the day (every 3 hours) to prevent wearing off. Does anyone else have their medications this close together? Any side effects?


Wed Dec 28, 2011 11:25 am
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Location: WA
Post Re: Trouble Breathing when Sinemet wears off
My husband had problems with Stalevo wearing off during the night but never had breathing problems. It is related to her inability to swallow her saliva?

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Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Wed Dec 28, 2011 12:54 pm
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Location: SF Bay Area (Northern CA)
Post Re: Trouble Breathing when Sinemet wears off
Usually CR lasts longer. You might ask the neurologist about levodopa that is placed under the tongue (dissolvable). This could be used as a "rescue" dose during the night.

Or perhaps your mother can take something to help her sleep?

Is your mother upset by the abnormal breathing? Or are others more upset by the breathing? Is it causing your mother to have an anxiety attack?

Not many with DLB take dopaminergic medication because it can exacerbate psychosis.


Wed Dec 28, 2011 12:55 pm
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: Trouble Breathing when Sinemet wears off
Quote:
Not many with DLB take dopaminergic medication because it can exacerbate psychosis.
Really? Are there data to support this? Yes it clearly does exacerbate hallucinations and delusions but it also reduces stiffness, keeping them more mobile, keeps their drooling minimized and in many cases helps with swallowing. Every neuro my husband has seen has kept him on carbidopa/levodopa.

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Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Wed Dec 28, 2011 1:11 pm
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
Post Re: Trouble Breathing when Sinemet wears off
Perhaps it's a semantic difference as I purposely didn't use the acronym LBD. Most with PDD take dopaminergic medication, but not many with DLB do.


Wed Dec 28, 2011 1:53 pm
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Joined: Fri Dec 31, 2010 3:07 pm
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Location: Minnesota
Post Re: Trouble Breathing when Sinemet wears off
Really, Robin? I thought that Dr. Boeve uses it in treating DLB. Of course it is a trade off, as Pat says, but most people who come to my local support group seem to use it or have at least tried it. Different doctors and clinics involved ...

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Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Wed Dec 28, 2011 3:09 pm
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Location: SF Bay Area (Northern CA)
Post Re: Trouble Breathing when Sinemet wears off
In our local support group, it's very unusual for someone with DLB to be taking Sinemet. (Of course not everyone with DLB has parkinsonism.) It's a different story entirely with PDD.

In many medical journal articles, DLB is described as being poorly responsive to dopaminergic therapy.

I won't comment further as this thread is about trouble breathing when Sinemet wears off.


Wed Dec 28, 2011 6:02 pm
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Joined: Fri Oct 28, 2011 1:31 pm
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Post Re: Trouble Breathing when Sinemet wears off
Yes, it does bother her very much. She wakes up and says, "I can't breathe!" Sometimes she says that she can't swallow. She is very very upset. She does have anxiety and takes .25mg of xanax four times a day. The levadopa does create some hallucinations, but I am not sure if they are any worse than before she was taking it. It really does help with her mobility, rigidity, and drooling. I think it is necessary. The only thing that we have found that sends her into full blown psychosis is seroquel and geodon.

I have never heard of the under the tongue medicine. I will ask her doctor about it. I hate to see her not able to breathe. When she falls off, she also gets bladder pain - like she has to desperately go to the bathroom and she complains of pain in her abdomen.

I don't know how to make it better for her. She has to move to a new place on Friday. She is being ousted from her assisted living (even though I paid for sitters 12 hours a day) on top of living there. I know she is going to be so confused and I don't know how to make it better. At the new place, she will be in memory care and won't need sitters. I am just afraid that when she gets to the middle of the night, they won't hear her call for them and she won't know how to pull the string for help with her breathing.

This morning she asked if she had already moved to her new place. She has not. She is so confused sometimes and other times she can carry on a really nice conversation. I don't understand this disease at all!!! I can't tell if she belongs in memory care or a nursing home. I thought she was fine in assisted living with sitters during the day. They thought otherwise. I know that I am off the topic, but I am so confused about it all. Thanks.


Wed Dec 28, 2011 7:01 pm
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Post Re: Trouble Breathing when Sinemet wears off
Marie, it does sound as if she [and you] need to seek out some medical and social services for some answers. Yes, Lewy is a very complex and variable disease and one size does not fit all. A memory care unit might be good IF they understand her potential physical limitations and have some knowledge about LBD. Some memory care units only seem to know Alzheimer's which, as you probably know, is quite a different situation.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Wed Dec 28, 2011 7:38 pm
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Joined: Thu Jan 14, 2010 2:40 pm
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Location: California
Post Re: Trouble Breathing when Sinemet wears off
The sinemet caused much greater confusion in my husband and didn't appear to alleviate any of the parkinsonian symptoms.
Roxanne

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My husband's first diagnosis in 2006 at age 64: Early Cortical Lewy Body Disease...


Wed Dec 28, 2011 7:52 pm
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Post Re: Trouble Breathing when Sinemet wears off
Marie,

The name of the orally dissolving levodopa is Parcopa. It's occasionally prescribed as a "rescue" medication to unfreeze those who have locked-up in bed.

Having anxiety attacks during the wearing off period is very common as well. Is your mother being seen by a movement disorder specialist? That sort of neurologist would know the medications the best.

Could the wearing off the Xanax be causing the breathing problems and anxiety attacks?

It sounds like she will make the transition just fine to the new memory care facility since she is confused as to whether it has taken place or not.

You are doing the best you can. Hopefully an expert MD can help figure out the medications.

Good luck,
Robin


Wed Dec 28, 2011 7:59 pm
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Joined: Fri Oct 28, 2011 1:31 pm
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Post Re: Trouble Breathing when Sinemet wears off
Thanks for the responses. Yes, she has seen Dr. Tanen at the Mayo Clinic in Florida, but since we live so far away, it is not feasible to make her our permanent doctor. We live in a town that only has two neurologists and the best one is not a specialist in this area. Dr. Tanen made suggestions to our doctor here, and we are slowly implementing them. We only make one change at a time because she is very sensitive to the medicines and medicine changes. But as time goes on, new things pop up, and I am not sure how to deal with them without a specialist.

You are right about her probably adjusting o.k. since she doesn't even know where she is some of the time, but I worry about the nights when she can't breathe (they have a string to pull for help, and she won't think to pull it), and I worry about her severe depression. Some of the time she does know where she is and she will complain about being bored, or too much noise. I can't seem to make her happy. I am becoming unhappy trying to make her happy.


Thu Dec 29, 2011 12:34 am
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Post Re: Trouble Breathing when Sinemet wears off
Quote:
I can't seem to make her happy. I am becoming unhappy trying to make her happy.
I know exactly what you mean. :cry:

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Thu Dec 29, 2011 1:30 am
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