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 Runny nose 
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Runny nose
Pat, when I don't understand something that is written, it doesn't really help me to be given the exact same writing again, and to be told I shouldn’t have tunnel vision. :| How about you?

I don't quite grasp whether Steven's messages refer to cholinergics or anticholinergics. The remark above his list of meds is this: “RE: (anti)cholinergics, need to know this is a huge class of meds just like antibiotics is a huge class as well and includes meds like:” So is the list supposed to be anticholinergics or also include cholinergics? (I can’t figure out what the parentheses mean. When you write “kettle(s)” you mean either one kettle or more than one.) In one of his messages to Robin, he seems to use the terms interchangeably.

I picked a couple of items near the top of the list and tried to find out whether they were considered anticholinergics or cholinergics. I found out that Baclofen (which Coy has taken for hiccups) is a GABAergic drug, and Atenolol (which I think I took in the past) is a competitive beta(1)-selective adrenergic antagonist. Loperamide is a member of the drug class antidiarrheals. Hmmm … what the heck is this a list of?

Earlier today I tried to find the source of the list on the ALZ library site, but it didn’t turn up in my searches. I was going to ask Steven for the specific url. Coy is taking several meds on the list, and one of them has the *Do not use classification. I thought I might ask his doctor about that and show her the list. But I can’t see myself saying, “Here is a list some guy posted on a discussion site. I’m not sure where it came from but he assured us it was legitimate.” :shock:

I was looking at this stuff because I was really interested and I wanted to understand it better. Guess not.

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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


Fri Mar 11, 2011 4:12 am
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: Runny nose
I'm sure that posting was meant to be helpful, but if I'd needed to know details about any of those meds, I'd have to use other sources. I found it totally confusing myself! 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.


Fri Mar 11, 2011 11:53 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Runny nose
Both Pat and I thought that eyeoftaurus was confusing the term anticholinergic and cholinesterase inhibitor.


Fri Mar 11, 2011 12:52 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Runny nose
Yes Robin, but that is probably because you both have tunnel vision and can't think outside the box. :lol: :lol: :lol:

Actually I am sorry that Steven went away mad. I'm sure he did mean well, and he might have been an interesting contributor once he got used to our ways.

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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


Sat Mar 12, 2011 1:11 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Runny nose
JeanneG,
I agree with all you've said!
Robin


Sat Mar 12, 2011 1:57 am
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Joined: Mon Jun 21, 2010 2:24 pm
Posts: 32
Post Re: Runny nose
WHEW!! What a batch of information to absorb. I think what most of us need to remember is, WE are living this out on a daily basis. People sometimes forget that we are here (on this forum) for a reason. To get info that has worked or not worked for us in our journey. Sometimes the 'clinical' end gets lost to us as we struggle daily with this awful disease. I am sure that Steven meant well, he just doesnt know what it is like to live it! (As most of the world has no idea.) Just my thoughts, for what it is worth. :-)


Mon Mar 14, 2011 2:13 pm
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: Runny nose
I agree with you, Misty... We who don't understand the medical jargon come here for simple and practical help. That's why I'm trying to share what is happening with Dale and me on the Hospice thread. Perhaps what I've written will make the journey easier for someone else like me.

Those who do use the big words can always get their information from others like them. :!:

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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Mon Mar 14, 2011 2:22 pm
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Joined: Mon Mar 07, 2011 11:53 pm
Posts: 12
Location: San Diego, CA
Post Re: Runny nose
mistyeye wrote:
WHEW!! What a batch of information to absorb. I think what most of us need to remember is, WE are living this out on a daily basis. People sometimes forget that we are here (on this forum) for a reason. To get info that has worked or not worked for us in our journey. Sometimes the 'clinical' end gets lost to us as we struggle daily with this awful disease. I am sure that Steven meant well, he just doesnt know what it is like to live it! (As most of the world has no idea.) Just my thoughts, for what it is worth. :-)


Never ever ever make such judgments or statements about others without knowing the facts. You had and still have no idea what my personal experiences with dementia, Lewy Body specifically, are since I never shared them. Please think before you speak or make such comments in the future.


Fri Mar 18, 2011 3:47 pm
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Joined: Mon Mar 07, 2011 11:53 pm
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Location: San Diego, CA
Post Re: Runny nose
Leone wrote:
I agree with you, Misty... We who don't understand the medical jargon come here for simple and practical help. That's why I'm trying to share what is happening with Dale and me on the Hospice thread. Perhaps what I've written will make the journey easier for someone else like me.

[color=#FF0000]Those who do use the big words can always get their information from others like them.
:!: [/color]



You know I might be a therapist but I am not a pharmacist nor a neurologist what I have learned has come through reading and reading and asking questions and more questions and pissing off many doctors in the process. Not getting my information from others like me. You seem to be promoting an us versus them attitude with your comment above I find this so often on boards and very offensive. Everyone needs to work together here and share info that is what it is all about.

You too can find and collect info to use and make intelligent decisions and ask even more intelligent questions, it is out there and there are many differences of opinion as well. I will just say I am personal alive today because I took charge of my own medical care, but had to fight the system to do it. Each and everyone one of us must do that for ourselves and loved ones. I have now been doing that for my mother for the past 5 years after many years of idiotic misdiagnosis.


Fri Mar 18, 2011 4:03 pm
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Joined: Mon Mar 07, 2011 11:53 pm
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Location: San Diego, CA
Post Re: Runny nose
robin wrote:
Both Pat and I thought that eyeoftaurus was confusing the term anticholinergic and cholinesterase inhibitor.



Mostly you did since you haven't looked up what these meds do and have no bio chem back ground.


Fri Mar 18, 2011 4:05 pm
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Joined: Mon Mar 07, 2011 11:53 pm
Posts: 12
Location: San Diego, CA
Post Re: Runny nose
JeanneG wrote:
Pat, when I don't understand something that is written, it doesn't really help me to be given the exact same writing again, and to be told I shouldn’t have tunnel vision. :| How about you?

I don't quite grasp whether Steven's messages refer to cholinergics or anticholinergics. The remark above his list of meds is this: “RE: (anti)cholinergics, need to know this is a huge class of meds just like antibiotics is a huge class as well and includes meds like:” So is the list supposed to be anticholinergics or also include cholinergics? (I can’t figure out what the parentheses mean. When you write “kettle(s)” you mean either one kettle or more than one.) In one of his messages to Robin, he seems to use the terms interchangeably.

I picked a couple of items near the top of the list and tried to find out whether they were considered anticholinergics or cholinergics. I found out that Baclofen (which Coy has taken for hiccups) is a GABAergic drug, and Atenolol (which I think I took in the past) is a competitive beta(1)-selective adrenergic antagonist. Loperamide is a member of the drug class antidiarrheals. Hmmm … what the heck is this a list of?

Earlier today I tried to find the source of the list on the ALZ library site, but it didn’t turn up in my searches. I was going to ask Steven for the specific url. Coy is taking several meds on the list, and one of them has the *Do not use classification. I thought I might ask his doctor about that and show her the list. But I can’t see myself saying, “Here is a list some guy posted on a discussion site. I’m not sure where it came from but he assured us it was legitimate.” :shock:

I was looking at this stuff because I was really interested and I wanted to understand it better. Guess not.



I wanted to make sure you found this list my dear so here is the best way to get to it:

Go to here:
http://alzheimers.boomja.com/
in search type enablex
in pop up window click on Anitcholinergic Cognitive Burden Scale article given
there is the article and scale (note this is just one of many articles out there on this topic)

or you can find it at the Harvard Health Publications site listed below too:

http://www.health.harvard.edu/newslette ... rden-scale

hope this helps and sorry the links aren't clickable on here.

Wish you the Best

Steven


Fri Mar 18, 2011 4:11 pm
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Joined: Mon Mar 07, 2011 11:53 pm
Posts: 12
Location: San Diego, CA
Post Re: Runny nose
robin wrote:
Dr. Marple's email to JAB (a member of the Alzheimer's board) recommends these treatments for nasal drainage:
1- topical nasal steroids
2- nasal saline irrigation
3- proton pump inhibitor
4- guaifenesin (Mucinex)

One example of #1 is Nasacort AQ, which I use to deal with seasonal allergies. I'm assuming that all of the examples of #1 are prescription.

A neti pot with saltwater is an example of #2.

Never heard of #3! Anyone else?



You know Robin anyone could come up with this if they read the article I posted. The reason for me posting the article was not to provide a solution just for the symptoms of a runny nose but a solution to the actual cause of the runny nose which has been shown in many instances to be the anticholinergics people were taking.

You know it is like if someone who has lactose intolerance and just takes something for the cramping, diarrhea or other issues but never addresses the actual cause like inability to digest/handle dairy. This is the major issue with medicine, allopathic I mean, masking the symptoms instead of treating the cause and then many times due to med side effects creating more symptoms.


Fri Mar 18, 2011 4:31 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Runny nose
eyeoftaurus wrote:
The reason for me posting the article was not to provide a solution just for the symptoms of a runny nose but a solution to the actual cause of the runny nose which has been shown in many instances to be the anticholinergics people were taking.


Really? Anticholinergics cause runny noses?

In the letter you posted, Brad Marple would recommend not using anti-cholinergics agents to treat runny nose, because they theoretically can change the viscosity of the mucus and "may result in an increase in the perception of postnasal drainage". Saying that a substance is not a good treatment for the complaint is not at all the same thing as saying that the substance causes the complaint in the first place.

JAB, to whom Marple's letter was addressed, comments "I tripped over the information that aricept can cause post nasal drip... so I assume all of the cholinesterase inhibitors can." His assumption, which he identifies as such, has to do with cholinesterase inhibitors, not anti-cholinergics agents.

Nothing you've quoted suggests that anitcholinergics are the "actual cause" of the runny noses that people with lewy bodies in the brain experience.

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


Fri Mar 18, 2011 9:38 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Runny nose
eyeoftaurus wrote:
Never ever ever make such judgments or statements about others without knowing the facts. You had and still have no idea what my personal experiences with dementia, Lewy Body specifically, are since I never shared them. Please think before you speak or make such comments in the future.


You are correct, Steven, we don't know what your experience is, and it is wrong for us to make assumptions. I think that you can see that we do tend to identify ourselves very early on in our participation here, and we know who is trying to help a parent over a long distance, who has a dying husband they are comforting at home, whose loved one is in early stages, who is having trouble getting a meaningful diagnosis, etc. etc. You can tell a lot about my situation just by looking at my signature line. I know nothing about you. That uneven exposure of self tends to make people a little edgy sometimes. I hope that if you are going to continue here you will share your story with us. It sounds interesting, espcially that you are alive because you fought the system.

Speaking of unfair assumptions, early on you accused Robin of not reading the letter, "All I can say is if you would read what I posted your question would be answered." You assume that Pat and Robin "haven't looked up what these meds do and have no bio chem back ground." You accuse people who are "bantering" with you (your term) of "tunnel vision" and of "being stuck in the box".

Steven I have reread all of your postings. (I read them all the first time, too.) I have an MA in English and I generally score pretty high on reading comprehension. :lol: In my professional life I am considered an outside-the-box problem solver. But I'll be darned if it doesn't seem to me that you are using cholinergic and anticholinergic to mean the same thing, and once you even write (anti)cholinergic. I find this very difficult to follow, but I am willing to question until I have a clearer picture. I don't know you at all. You mention reading German. Perhaps English isn't your native language. Perhaps some things don't translate easily from German. Perhaps you simply mistyped something. I am not making any accusations and I am not "bantering." You went to a lot of trouble to share your message, but some of your wording is causing me confusion. To assume (and worse yet, to state) that anyone who didn't understand your message the first time just didn't read it or isn't capable of understanding it is insulting. Perhaps that, too, is just a language problem that will go away when we all get used to each other.

I suggest that if you'd like to continue here that everyone drop unfounded assumptions and that we all start fresh.

Is it a deal? :|

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


Fri Mar 18, 2011 10:24 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Runny nose
eyeoftaurus wrote:
I wanted to make sure you found this list my dear so here is the best way to get to it:
Go to here ... or you can find it at the Harvard Health Publications site listed below too... hope this helps and sorry the links aren't clickable on here


Links are clickable and I'm glad to see you found how to post them. Thanks.

eyeoftaurus wrote:
Key for numbers is: 1 2 3 referring to the degree of severity regarding side effects in worsening confusion and behavioral problems as well as cognition. 1 the least but some, 2 more or moderate and 3 the most and avoid at all cost. Then we have the * system or marcation with * Try and avoid and ** Avoid at all cost.


Looking at the article you referred us to, published by Harvard Health Publications, that is not what the numbers mean, although it may be what they can be used for. The numbers simply compare the strength of the anticholinergic properties of a drug. A drug with a 3 has about the same anticolinergic effect as taking 3 drugs with the number 1. It allows comparing the "anticholinergic burden" of various treatment plans. The Harvard publication does not anywhere say "avoid at all cost" and it does not use the * warning system. The list you posted also does not match the content of the Harvard publication. Your list includes drugs not on the Harvard list. So we still don't really know whose list this is or how they came up with the warning categories or exactly what they are warning against.

Elsewhere there are a lot of studies concerned about the side effects of anticolinergics, especially for the elderly and those with dementia. Those who prescribe such drugs in this population would find a way to calculate the anticholinergic burden of the combination of drugs very useful, I would think.

(There is no indication of a relationship to runny noses.)

It appears that someone has taken the basic content and expanded it and added warnings on the version you posted. It would be useful to know who that someone is, especially if we intend to discuss this with a doctor.

You will see that we have a forum dedicated to sharing information about research. Not everyone comes here for that, but several people share items they come across or search out. Robin is the uncrowned queen of posting research. Perhaps she has spoiled us. Her postings always include the source. If we want to see it in context or read more by/about the researcher, we know exactly where to go. Those of us who do tend to like research (especially when there is a nontechnical extract :P ) have pretty high standards for what we'll accept. There is just way too much voodoo out there. I'm not at all accusing you of posting voodoo but I hope you can see why we question sources. Never use MUCINEX? Well, maybe, but first I'd like to know who says so, and based on what.

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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


Fri Mar 18, 2011 10:58 pm
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