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 what causes the fluctuating symptoms? 
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Joined: Thu Dec 08, 2011 5:23 pm
Posts: 14
Post Re: what causes the fluctuating symptoms?
Just two days ago, something different happened with Mom. All this time she has been physically able (with her walker) to get out and about, usually 3 days a week, eat out, maybe spend a short time in a store. When I went to get her Wed. she was in bed and very confused. The first thing they did at the ALF was test for a UTI or other infection, but didn't find anything. Sometimes she indicated that her stomach hurt, sometimes her head, but since she often says the opposite of what she means, it's hard to tell what, if anything, really hurts. I sat with her all day hoping to get a clue. She kept trying to say something about her eyes. It looked like she might be having trouble focusing and she was more unsteady on her feet than usual so I am assuming she was dizzy. Her blood pressure was okay when they checked it, but reading the posts re: orthostatic hypotension, I'm now wondering if that might be the answer. Yesterday she was better and today she seemed back to the way she was before this incident (just in time to meet her first great-great-grandbaby!) I'm not really familiar with OH - does it come and go like that? Having had one episode, is she likely to have others? And, can anything be done about it? If it's not OH, does anyone have any other ideas?
Diana


Sat Dec 10, 2011 2:50 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: what causes the fluctuating symptoms?
Did they test for postural [orthostatic] hypotension? They can check her BP sitting, then standing. If the systolic reading drops more than 10mmHg it is considered postural. Yes, it can come and go, especially in Lewy. But there can be other causes, such as certain medications. Sometimes elastic stockings can prevent it by helping pump blood back from the legs to the heart & brain.

_________________
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.


Sat Dec 10, 2011 9:26 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: what causes the fluctuating symptoms?
Diana,

As you've probably seen from OH, it can occur when someone is seated and they stand up, when someone is lying down and they sit up, just after someone has eaten, or after exertion on the toilet. An easy test of OH is to take the BP lying down, have them sit up, take the BP again, have them stand up, and take the BP again. I have never seen this symptom come and go -- it's always there to some degree, if it's present. There are lots of posts about treatment for OH -- both medication and non-pharmacological.

My layperson guess is that OH has nothing to do with your mother's mental confusion. This sounds like typical LBD -- fluctuating cognition.

Robin


Sat Dec 10, 2011 3:08 pm
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Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Re: what causes the fluctuating symptoms?
I just looked at what Pat said and what Robin said about OH and at first it looks like they are at odds…
But, from my experience they both said the same thing…..

the effect is not the same all the time…..

that is my experience…..

it depends….. :lol:

so, I tell people I have this stupid cane because I am sometimes wobbly…..and then they never see it…..
so, then I don't carry the stupid cane…and I get up out of a chair or a booth and I am wobbly like I am drunk….

so….yes to what they both said….

_________________
Craig - Patient - Male - 56 years old - Lewy Bodies diagnosed on March 23, 2011 - cognitive disorder NOS dx 2007 - RBD REM dx 2007 issues for 20+ years - intention tremor 1974 - other issues many years


Sat Dec 10, 2011 7:42 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: what causes the fluctuating symptoms?
Yes, OH can come and go. Some are affected only when getting up in the morning. Others, only after taking a diuretic, beta-blocker or other anti-hypertensive medication. With LBD, almost any symptom can come and go.

_________________
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.


Sat Dec 10, 2011 7:57 pm
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Joined: Thu Dec 08, 2011 5:23 pm
Posts: 14
Post Re: what causes the fluctuating symptoms?
Thanks for the input everyone. The owner/director said they checked her BP several times but I think that was during the course of the day and evening, not after lying down and sitting up, sitting up and standing, etc. If it happens again, I'll ask that they do this.

As for meds, she doesn't take any diuretics (early stages of renal failure) or anti-hypertensives. Twice in the last two years her BP inexplicably shot up for no apparent reason, but since it doesn't stay up and happens rarely, she has not been given meds for that. Her heart meds are Sotalol (120 mg. a.m. and p.m.) and Digoxin (every other day). She just saw her cardiologist last month and meds were not changed. Lovastatin for high cholesterol, Levothyroxin for thyroid, a Bufferin as a blood thinner, magnesium, fish oil, folic acid, and of course, Aricept.

Wed. she had trouble figuring out what her walker was for and could barely get around in her room, much less the facility. Friday, she got her walker and we went all over the place showing off the new baby. The difference in her between Wed. and Fri. was like night and day.

This may just be one of Lewy's little mysteries (or Lewy fluctuations) and perhaps we'll never know what caused the episode Wed. Thanks again for the replies - I really appreciate all of you.
Diana


Sat Dec 10, 2011 8:44 pm
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: what causes the fluctuating symptoms?
Sotalol can cause dizziness and light-headedness. Digoxin can, too, but only rarely.

_________________
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.


Sat Dec 10, 2011 8:49 pm
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Joined: Thu Dec 08, 2011 5:23 pm
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Post Re: what causes the fluctuating symptoms?
Thanks, Pat. I suppose even though she's taken both for several years with no problems, it could start to affect her differently - especially with Lewy thrown into the mix.
Diana


Sat Dec 10, 2011 8:57 pm
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: what causes the fluctuating symptoms?
Diana, I suspect it's a Lewy thing rather than a medication thing.

_________________
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.


Sat Dec 10, 2011 10:54 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: what causes the fluctuating symptoms?
And it doesn't sound like OH. Probably if she had dizziness, someone would've picked up on that.


Sat Dec 10, 2011 11:39 pm
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Joined: Thu Dec 08, 2011 5:23 pm
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Post Re: what causes the fluctuating symptoms?
Robin, you're probably right about it not being OH. The only thing that made me think it might be was the dizziness and the fact that she kept trying to say something about her eyes. I think I read somewhere that OH can be accompanied by rapid eye movements and she did have that, but I also read that can be a stroke indicator or something to do with Menierre's Disease (which she has). The Menierre's can also cause dizziness but she hasn't had problems with that for a while so I didn't think of it at the time. So, there are at least three possibilities (Lewy fluctuation, stroke, Menierre's) that I know of so far and probably more that I don't know about. I don't think it was a stroke. At any rate, whatever it was seems to be gone for now.


Sun Dec 11, 2011 9:31 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: what causes the fluctuating symptoms?
Not sure what you mean by rapid eye movements. Saccades? Nystagmus?

Nystagmus that can accompany benign positional vertigo (but not Menierre's). BPV can certainly cause dizziness.

There are many, many causes of dizziness. It must be one of the hardest symptoms (that can occur with any of us) to diagnose and treat. Of course, eye movements can be associated with dizziness.


Sun Dec 11, 2011 11:44 pm
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Joined: Thu Dec 08, 2011 5:23 pm
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Post Re: what causes the fluctuating symptoms?
Robin, sorry it took me so long to get back to this. I think Nystagmus, but I really don't know. I'm not familiar with Saccades. The rapid eye movements were back and forth horizontally like her eyes were "jiggly". Thankfully, she still has had no re-occurrence of this episode, but she is very depressed (who wouldn't be with this hateful disease?).

She cried and cried this morning and tried to tell me why, but couldn't - which I believe is the main reason for the depression - her inability to communicate. She was always such a talker and loved to visit with people and now she doesn't want to be around anyone because she's embarrassed that she can't finish a thought or says the wrong words and people "stare at her." About the only sentence she doesn't have trouble with is when she says, "I wish I could die."

I hate messing with her meds, but she is so miserable I'm considering asking the doctor about an anti-depressant. I wonder if anyone has luck with them? Of course, I know what works for one person does not necessarily work for another....
Diana


Mon Dec 19, 2011 5:52 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3359
Location: Vermont
Post Re: what causes the fluctuating symptoms?
If she's really depressed, I'm surprised her dr. hasn't put her on an anti-depressant already. If there is something that isn't contra indicated with LBD, I'd certainly be in favor of giving that a try. I considered that a "comfort med" with my dad. I don't know that they did any good, but then you don't know how much worse the person would be without them either.
Like all meds, probably "go slow" is a good philosophy. Good luck, 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.


Mon Dec 19, 2011 7:20 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: what causes the fluctuating symptoms?
Oh, Diana. Absolutely contact the MD immediately about the crying and depression. Medication can certainly help but they usually take a couple of weeks to take effect so start on one ASAP. If it's not helping after the amount of time the MD indicates, then switch to another one.


Tue Dec 20, 2011 12:04 am
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