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 Spontaneous Vomiting 
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Joined: Fri May 28, 2010 4:46 pm
Posts: 119
Location: Salem, Oregon
Post Spontaneous Vomiting
I haven't seen this symptom discussed on here, and I don't know if it fits. My mom was diagnosed with LBD with Parkinson's last May. She is 66. During this past year she has been vomiting spontaneously--no warning whatsoever. She says she doesn't even feel sick when she does it. There is no time to get her to a toilet or even to get a bucket to her mouth. It was happening only about once a month, but it seems to be increasing in frequency. This has unnerved me because she has vomited on a restaurant table and in a crowded cafeteria during lunch. Fortunately, most of her messes have been at home. We are seasonal ticket holders at a small local theater. I am so nervous that she is going to vomit in the middle of a performance that I can't even enjoy the show anymore. I don't want to limit her activities any more than I have to, but I feel somewhat resentful about the whole situation. It doesn't help that I am very queasy about vomit in the first place. I feel like a monster of a daughter for letting it bother me, and I just hope I can handle it with grace if it does happen during a performance. Has anyone else encountered this issue with LB?


Wed Dec 01, 2010 7:32 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Spontaneous Vomiting
Vomiting without nausea is usually considered a serious neurological symptom. Especially if it is projectile, which it is not in her case, I presume. Her doctor needs to know about it. And, I'm sorry, but if I were you I would not take her to any more restaurants until it gets resolved. :shock:

_________________
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 01, 2010 8:39 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Spontaneous Vomiting
What did the MD say when you asked him/her about it?

Perhaps you need to log the quantity and contents of each meal, and how long after the meal the vomiting occurs. And if there are other symptoms (fever, bloating, etc). This sort of info will be invaluable to the MD.

Could be gastroparesis, could be something called cyclical vomiting (not related to LBD), could be lots of things (most of which are unrelated to LBD).


Thu Dec 02, 2010 12:30 am
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Joined: Fri May 28, 2010 4:46 pm
Posts: 119
Location: Salem, Oregon
Post Re: Spontaneous Vomiting
So far I have not been present when it's happened. I just hear about it from my dad and others who were present. I haven't asked if it's projectile, but it doesn't sound like it. I'll double check.

It seems like all her problems kind of started after she had surgery 3 summers ago. The surgery was minor and not related to her brain, but she became very constipated afterwards and did projectile vomit until that problem was resolved. After that it seems like her personality and memory began to slowly change. It was a year later before I realized she had a serious neurological problem. I've always wondered if the surgery or anesthesia or some sort of undetected infection afterwards contributed to this awful disease.

Last night she came over for dinner and after we ate, she began twitching. It affected her whole body and happened every minute or so. She was really uncomfortable. She doesn't talk much, but she was rubbing her knees which means her legs hurt from restless leg syndrome (at least that's what she used to say when she talked more). She's on medication for that.


Fri Dec 03, 2010 1:09 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: Spontaneous Vomiting
I suggest a log, and when the log is complete take it to a GI MD. Could be vomiting due to impaction, gastroparesis, or anything.

Probably makes sense to get on a regular routine as far as bowel movements go.


Fri Dec 03, 2010 1:44 pm
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Joined: Fri May 28, 2010 4:46 pm
Posts: 119
Location: Salem, Oregon
Post Re: Spontaneous Vomiting
I forgot to say that we did tell her general practitioner about it. She wasn't concerned about it because she isn't at risk of being dehydrated since it only happens a couple of times a month. She gave her an anti nausea pill to take before going to events where it would be disruptive if she vomits, such as at the theater. She doesn't like to take it, but my dad makes her anyway.

My dad has a lot of excuses for why she is vomiting--she must have a virus, she was carsick, she at something bad, etc. But those excuses never really fit the situation. I thought it must be the Exelon patch, but my dad doesn't want to believe that because he feels it's his last hope and wants her to stay on it. I don't think it's helping at all. I just see her declining. Monday he almost took her to the emergency room because she was unable to walk unassisted, but the next day she was walking independently again--unsteadily as is her norm now, but she'd never needed that much assistance before.

I just can't shake the thought that it's normal pressure hydrocephalus, but the neurologist at OHSU says it isn't. She doesn't have tremors like Parkinsons (except this new twitching issue), and she doesn't have hallucinations which seems to be a major indicating symptom of LB.


Sat Dec 04, 2010 2:11 pm
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Joined: Sat Oct 06, 2007 4:28 pm
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Location: LA
Post Re: Spontaneous Vomiting
Has her gall bladder been considered?

DrP


Sat Dec 04, 2010 2:46 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: Spontaneous Vomiting
Were I your father, I would also "require" that your mother take an anti-nausea pill before going to an event!

Apparently NPH can be easily diagnosed with an MRI. Has an MRI been done?

Only 40% of those with PD have tremor. It's not a required criteria for a PD diagnosis.

Hallucinations aren't a required criteria of LBD. That said, most do have hallucinations. We had one person very recently in our local support group whose husband had an LBD diagnosis by an excellent local movement disorder specialist. He didn't have hallucinations either. Upon brain autopsy it was found he had PSP, not LBD. The cognitive issues in PSP is similar to LBD. Looking back she now believes what she thought was fluctuating cognition was simply poor cognition mixed with fatigue or sundowning. Has PSP been considered?

I wouldn't be too ready to take your mother off of Exelon. There is lots of anecdotal evidence that people who decline being taken off this medication never regain the lost ground when put back on the medication.

Have you spoken with your parents about your mother donating her brain upon death? It's the only way to confirm the diagnosis.


Sat Dec 04, 2010 4:55 pm
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Joined: Fri May 28, 2010 4:46 pm
Posts: 119
Location: Salem, Oregon
Post Re: Spontaneous Vomiting
She has had 2 MRIs. They show enlarged ventricles, but the neurologist says it's because her brain is shrinking, not because of an excess of fluid. However, some people on the NPH forum I'm on say that the MRI doesn't always show it and that neurologists aren't always specifically trained to see it on an MRI.

I read about PSP, and it mentioned vision problems. That is my mom's chief complaint. A lot of the PSP symptoms match Mom perfectly, but it sounds like Parkinsons is definitely part of her diagnosis, whether it's LB or PSP or something else entirely. It looks like PSP is treated much the same and that there is no real cure.

I think I keep hoping by some miracle we'll be told that it's NPH after all and after a shunt is placed, I'll have my mom back. I miss her so much.

I haven't talked with them about donating her brain. Mom doesn't talk much at all anymore, and Dad is not ready to talk about her death.


Mon Dec 06, 2010 3:22 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: Spontaneous Vomiting
Parkinsonism (rigidity, bradykinesia, tremor, balance problems) can be found in PSP as well. It, like LBD, is often referred to as an "atypical parkinsonism" disorder.

LBD and PSP are treated differently but, you are right, there's no cure for either disorder. At least the dementia symptoms of LBD do respond well to treatment in many people for several years.

I wish you could get your mom to see an NPH expert too!


Mon Dec 06, 2010 4:40 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: Spontaneous Vomiting
Like my dad, your mom may be suffering from several different neurological conditions. We'll never know which of the many diagnoses my dad had, and that's ok with us. His body was so ravaged by age and disease, we just didn't want anything more done to him. I feel a lot more peaceful that he doesn't have body parts in a lab somewhere. If he'd been able to donate a live organ to save someone's life, that would be a different story.
Different strokes for different folks, and no one should feel pressured by the philosophy of others. Lynn

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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.


Mon Dec 06, 2010 10:33 pm
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Joined: Fri May 28, 2010 4:46 pm
Posts: 119
Location: Salem, Oregon
Post Re: Spontaneous Vomiting
My mom is only 67 and just over five years ago was retiring as nurse manager at our city's hospital, so this came out of left field. We weren't ready for it yet. This wasn't supposed to happen until I was retired and didn't have kids at home anymore so that I could just take care of them. Instead, I'm working full time and raising an 8-year-old and a teenager. And my dad is 10 years older than my mom, so she was supposed to be taking care of him first during his declining years. Sorry to whine. It just gets so overwhelming sometimes.


Tue Dec 07, 2010 8:16 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Spontaneous Vomiting
Have you considered an Assisted Living Facility for your mother?

_________________
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.


Tue Dec 07, 2010 8:46 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3301
Location: Vermont
Post Re: Spontaneous Vomiting
None of us expected this to land in our laps, and that is what's so good about the forum - people here know what you are going through. There are many "sandwich generation" folks here. Although my kids are older, I still have one in college which makes it easier than an 8 year old, but still, you want to be available for your kids and spouse. And many times I just wasn't here. You do the best you can at balancing your life as mom, daughter, worker, whatever. It is exhausting and ovewhelming, but you have lots of people here to give you moral support.
As Pat suggested, perhaps placing your mom in an ALF might be the best decision that can be made at the moment. No matter what you decide to do, there are pros and cons to everything. Just hang in there and do the best you can - that's all you can do. Take care, 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 Dec 07, 2010 10:23 pm
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Joined: Fri May 28, 2010 4:46 pm
Posts: 119
Location: Salem, Oregon
Post Re: Spontaneous Vomiting
Thank you for your support. My dad is not ready to put her in an assisted living facility yet. My request to do so before it becomes a crisis is falling on deaf ears. I'm afraid when it becomes unavoidable, I'll have to take a leave of absence just to deal with all that.

She is still able to bathe herself (dad uses a baby monitor so that he can hear her if she needs help), she mostly dresses herself (socks and tying shoes has become difficult), feeds herself with just minor choking, toilets herself, and walks mostly independently. She had her first episode about a week ago where she was unable to walk at all without assistance. The next day she could walk again by herself. On good days she even cooks a little bit. They eat a lot of canned soup. She still does laundry but no other house cleaning. Dad finally agreed to hire someone to dust and vacuum for them once a month.

We visited my dad's attorney a few weeks ago, and they revised their wills and gave me power of attorney. The attorney brought up the idea of the assisted living facility. My dad said, "Oh, that's years down the road. The prognosis is that she could live up to 20 years, and who knows--with advancements in medicine, she may live even longer."

He's getting this because something he read said some people have lived up to 20 years after diagnosis. It's my impression, though, that these people were a lot younger than my mom and that it's rare to live that long after diagnosis. I don't think my mom wants to live that long if she has to live like she is now--barely able to move, talk, read, or even think. I appreciate Dad's hope, but his denial makes it harder for me to deal with it. Hope is exhausting.

I am starting grief and loss counseling on Thursday so that I can stop living as though a dark cloud is hovering over me all the time.


Wed Dec 08, 2010 1:09 pm
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