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 doctor visit yesterday.. a tad confused!! 
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Joined: Fri Nov 05, 2010 11:30 pm
Posts: 317
Location: southern cali
Post doctor visit yesterday.. a tad confused!!
i'm not sure if im just feeling overwhelmed, from wearing too many hats or?? but this is getting waaay confusing...

hubby is lucky enough to have free va care and meds!! and for that we are sooo thankful... but dang it gets confusing going from different doc to different doc and getting 20 different answers.. you are on one path and thinking one way and a new intern comes in from across the street, from ucsd and your person leaves and you get all new info.. and new pills and WHEW!!!

being i'm trying to be his advocate and understand it all.. i think i need some help please, from you.

we have been told its alzhiemers.. from an outside doc(neurologist )and a va doc.. psychiatrist.. now yesterday we were told its lewy body.. (va neurologist) with no signs of parkinsons, yet!! and an outside doc( gp) hinted that he thought it might be lewy, 3 months ago...
this all with in a 5 month span.. the reason they are now thinking lewy .. is mainly because of the hallucinations, that seem to be getting worse and even tho he is on a med to help .. he is still having them. he's considered in mid stage alzhiemers, so they feel its way too soon to be having this amount of hallucinations, if its alzhiemers..... he also has had a few other recent symptoms: hiccups, blood pressure problems, and falling and leg problems... i can understand the confusion on what it is.. and i am keeping both diagnoses on the table..., not ruling anything out, at this point!!.. the concerns i have, is after reading on here, are the meds .

1. i have looked for dr boeve's list of meds ,that i want to have with me at all times, in case this last doc is closer to the truth.. not wanting to take chances there.. so could someone provide that link please?? i've looked and can't seem to find!! thank you!!

2 are all these meds really necessary??
he is starting today, a gallantimine 8 mlg.. have no problem with.. hope it helps..
hes on mirtazapine.. 30 mlg.. for sleep, lessening of hallucinations and depression.
this is working for deeper sleep and not sure it doing anything on depression or hallucinations .. altho his hallucinations are in the early evening now .. not waking up in the middle of the night with them, so i guess it is helping, some.

yesterday they also added risperdone.25mlg for the hallucinations... not so sure about this one... is it really needed.??. wouldn't it be better to wait and see what the galantimine does and how it reacts.. don't like to start two meds at a time... i'm thinking of holding back the risperdone till we settle in with the galantimine, as they said that would help with hallucinations also????

and they gave us trazodone, 50mlg for deeper sleep if needed.. which hasnt been used. only to be used when we travel and he cant sleep and the hallucinations are extreme
...

also they are switching and changing bp meds and cholesterol meds at the same time ,so many new things, hard to keep track .. and if any problems, not sure which one is the cause..??? so asked doc to hold back on the changes of these, till we decide on the galantimine.....

his bp and been all over the charts recently and we are down to 1 small hydrochlorothiazide pill and hopefully that will be it.. coming from 127/75, 2 months ago to 77/46.. settling in at 104/57 today.. by removing 2 full pills, hes been on forever!!

hes been falling and having lots of trouble with muscle(?) cramps in his legs, so they have removed all cholesterol meds ( statins).. but its not helping., pain still there!. so now they are saying maybe it isnt the statins after all, as the pain is localized in his right thigh.. so they thinking of running more tests, to see if he has blocked arterys..

he is young, 65.. and i'm just wondering about all these meds, are they really necessary?? am i on the right path?? am i missing some thing i should be doing...?? am i asking the right questions...
sorry this is so long.. but i wanted to include everything i know.. for now...
since i have no other family here to offer suggestions, except the kids..(41 +45) i feel like i need to really understand!. but all of this is a tad overwhelming when youre already running on tired!! i don't want to miss something and it ends up hurting him...
thanks for you time and especially for being there.. any help or thoughts are sooooo appreciated!!

cindi

_________________
sole CG for hubby.1st symptoms, 2000, at 55. Diag with AD at 62, LB at 64.. vietnam vet..100% ptsd disability,sprayed with agent orange, which doubled chances for dementia. ER visit 11-13,released to memory care..


Thu May 05, 2011 9:28 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: doctor visit yesterday.. a tad confused!!
I don't know much about Remeron [mirtazapine] except that it's an antidepressant that can also be used for anxiety and sleep. Trazodone is also an antidepressant sometimes used for sleep. Galantamine is an acetylcholinesterase inhibitor [AChEI] used for dementia to improve cognition.

I'm not a physician or a pharmacist but the only one on your list I would be concerned about his taking if he had Lewy is the Risperdal, which is a neuroleptic. Apparently, some can tolerate it, as it is on Dr. Boeve's list. My husband had a very bad--near fatal--reaction to Risperdal [risperidone]. Some research articles have reported adverse events [neuroleptic malignant syndrome] with it in PD and LBD patients. My husband's neurologist believes that virtually ALL neuroleptics are problematic in Lewy or PD but that quetiapine [Seroquel] is probably the most acceptable. My husband seems to tolerate it well and it really helps with the hallucinations [not the delusions, though].

I'm sure you do feel overwhelmed. Don't be afraid to ask questions of his physicians--as well as the pharmacist at the VA. Hugs, and best wishes!

_________________
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 May 05, 2011 10:21 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: doctor visit yesterday.. a tad confused!!
1. Please go to lbda.org and search for "Boeve Continuum 2004" The Boeve paper is the second one in the results list. Please save this paper now to your hard drive. (The link changes whenever the website is "upgraded" so I don't post the link. The search seems to work from year to year.)

2. Why would they think mirtazapine would help with hallucinations? Sleep, OK. Depression, OK.

Personally, I wouldn't start with risperdone (Risperdal) unless you've tried Seroquel or Clozaril first and your husband had bad reactions to them. Risperdal is no LBD expert's first choice of an antipsychotic.

Generally I would agree with starting one med at a time, with highest priority given to galantamine (Razadyne). I would make an exception if the hallucinations are troubling to you or your husband.

Trazodone, like mirtazapine, should do nothing for hallucinations.

I hope you can find one neurologist or psychiatrist and stick to that person for all the prescriptions!

There are lots of posts here about muscle cramps.

You might consider hiring an RN who is a geriatric care manager. I recommend to people in the local support group that they hire care managers when they feel overwhelmed by all the information, especially medications.


Last edited by irene selak on Mon May 09, 2011 9:52 pm, edited 2 times in total.

I edited the post



Thu May 05, 2011 11:18 pm
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Joined: Sat Oct 06, 2007 4:28 pm
Posts: 728
Location: LA
Post Re: doctor visit yesterday.. a tad confused!!
http://www.lbda.org/feature/1347&cfid=3 ... bodies.htm

Look to pages 96 through 99 for suggested medications.

DrP


Thu May 05, 2011 11:50 pm
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Joined: Fri Nov 05, 2010 11:30 pm
Posts: 317
Location: southern cali
Post Re: doctor visit yesterday.. a tad confused!!
thank you all..
pat i appreciate your info on risperdone.. i had remembered you mentioning that, while i was at the docs and brought it up as a possible problem.. and i was told no..but i havent given it .. mainly cause i wanted to get that list, before doing anything,,, and that is what is confusing to me... i think you all have been in the trenches and i trust your judgment.. and some of the docs.. even tho they are nice enough, just arent dealing with this on a daily basis like you all are... thank you

as far as the two meds that might not help the hallucinations. i believe their thoughts were that if he slept deep enough. it might not happen... but it is and serequel was mentioned, as a second option... mainly because i asked about it.. after reading on here.. see how much you all help.. thank you!!

thank you robin.. i will save it and refer to it a lot and keep a few copies all over the place..
as much as id love to keep the same physican its just not possible right now in the va system.. for the gp it is.. but not in the gero/phys dept.. soon i hope but not now.. i tried outside the system for that reason.. but being we need help with the financial.. it became too confusing trying to get info from the va to outside and vise versa... we were spending our lives between the two.
thank you also for the info on muscle cramps.. ill search..

a case manager sounds like a good idea.. but my confusion mainly lies between what ive leaned on here and what im being told there, like with the risperdone. just need to keep better notes .. good to know about!!

when i wrote this earlier, hubby had just fallen and i had just found him outside. and settled him down.... so my thinking was on, scared!

thank you dorthea for the link, i will look at it asap..

you folks are the best!!

thank you~~
cindi

_________________
sole CG for hubby.1st symptoms, 2000, at 55. Diag with AD at 62, LB at 64.. vietnam vet..100% ptsd disability,sprayed with agent orange, which doubled chances for dementia. ER visit 11-13,released to memory care..


Fri May 06, 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: doctor visit yesterday.. a tad confused!!
Well, if it's a conflict between what the MDs are saying and what we laypeople here on the Forum are saying, I'd go with what the MDs are saying.


Fri May 06, 2011 10:54 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: doctor visit yesterday.. a tad confused!!
robin wrote:
Well, if it's a conflict between what the MDs are saying and what we laypeople here on the Forum are saying, I'd go with what the MDs are saying.

I agree! After all, it would be easier to sue them than to sue us! :lol:

_________________
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.


Fri May 06, 2011 11:52 am
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Joined: Fri Nov 05, 2010 11:30 pm
Posts: 317
Location: southern cali
Post Re: doctor visit yesterday.. a tad confused!!
not suing anyone LOL

i think you gals have lots of experience.. i also understand that meds work for one and they might not work for another.. and vise versa... but in saying that, by listening to all sides and becoming aware.. i can hopefully be more informed, especially when needing to make judgment calls ...

thanks again, for your help~~
cindi

_________________
sole CG for hubby.1st symptoms, 2000, at 55. Diag with AD at 62, LB at 64.. vietnam vet..100% ptsd disability,sprayed with agent orange, which doubled chances for dementia. ER visit 11-13,released to memory care..


Fri May 06, 2011 12:16 pm
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Joined: Sat Oct 06, 2007 4:28 pm
Posts: 728
Location: LA
Post Re: doctor visit yesterday.. a tad confused!!
When I began studying the medicines, I felt lost with so many different ones as I read about them on this forum and tried to match them with the list of suggested meds on the Boeve Report. A quick trip to google helped me cross-match the ones prescribed for Mr Bobby. I wrote the alternate name beside each one in my printed copy. It was a whole new vocabulary for me!

Incidentally, the gabapentin helped with the cramping of the legs [or helped when he thought the bad men came into his room and twisted his legs then hid under the bed].

Dorthea


Sat May 07, 2011 1:09 am
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Joined: Fri Nov 05, 2010 11:30 pm
Posts: 317
Location: southern cali
Post Re: doctor visit yesterday.. a tad confused!!
i hear ya' dorthea..
not a med person, luckily, don't take any myself.. so its a whole new ballgame .. great idea.. thanks for the suggestion~~

and for the meds on cramping... until yesterday the leg wasnt cramping per se.. it just was in extreme pain.. and then ever so often, just gave out..but yesterday he had lots of cramps in both legs..hopefully will hear back soon, on the tests they want to run, to find out what the heck is going on~~
thanks again~~
cindi

_________________
sole CG for hubby.1st symptoms, 2000, at 55. Diag with AD at 62, LB at 64.. vietnam vet..100% ptsd disability,sprayed with agent orange, which doubled chances for dementia. ER visit 11-13,released to memory care..


Sat May 07, 2011 1:48 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: doctor visit yesterday.. a tad confused!!
Cindi, I mainly want to respond to this question: 2 are all these meds really necessary?? Since you happily don't have to take any drugs yourself I can understand that throwing all these drugs at the problem seems extreme. My attitude has become this: if they contribute to a better quality of life for Coy, bring 'em on! If it takes a second pill to counteract the side effects of the first pill and the first pill is very effective at what it is for, bring on the second pill.

There is no cure for LBD. There are many ways to reduce the symptoms. Not all ways work for all people. Not all symptoms can be reduced for all people. But it is worth the effort to look for any way that might make life better. At least that is my attitude. I don't mean to make life longer. I don't mean to prolong suffering. But as long as there is some quality of life to preserve, it is worth the effort.

Because reaction to drugs is so highly individualistic, I think starting more than one drug at a time, while it might sound efficient, just wastes time in the long run. I think it took almost a year before Coy was on the six different Lewy-related drugs he now takes. Seven years later I can say it was definitely worth the careful step-by-step approach to deal with one symptom at a time.

Are all these drugs really necessary? Alas, they are only necessary if they are effective, and you can't know that without careful trial. But please don't let the number of pills overwhelm you. One, two, six ... the real question is each of these pills contributing to quality of life?

It sounds like you are doing a very attentive job in your advocate role. Good luck to you!

Jeanne

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


Sun May 08, 2011 12:04 am
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Joined: Fri Nov 05, 2010 11:30 pm
Posts: 317
Location: southern cali
Post Re: doctor visit yesterday.. a tad confused!!
jeanne.. thanks so much for your thoughts...

yes im probably overly concerned since im not a pill person.. but also cause i now have a whole drawer full of stop and start pills.. close to 50 bottles in the last year..most completley full..that another doc comes on board and changes the prescription... wish i could share them or give them to someone else it seems like such a waste..

by seeing all these different docs, they all have their opinions and out comes some new meds....to have 5 for supposed hallucination help, when we have only tried one(mizipan sp?) and now on the second one(galantimine), seems like over kill...

im more that happy to do anything that works and helps.. but to have so many, before even trying one of them.. just doesn't feel right..but im fairly new to this.. so maybe this is my learning curve...LOL

thank you again for taking the time to comment.. so appreciate all your opinions and help

_________________
sole CG for hubby.1st symptoms, 2000, at 55. Diag with AD at 62, LB at 64.. vietnam vet..100% ptsd disability,sprayed with agent orange, which doubled chances for dementia. ER visit 11-13,released to memory care..


Sun May 08, 2011 10:31 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3345
Location: Vermont
Post Re: doctor visit yesterday.. a tad confused!!
It would be helpful, wouldn't it, if we could be given one of those starter packs or free samples before buying a whole bottle of whatever? Most of us have lots of stuff that was prescribed that didn't work, we had a bad reaction to, or whatever. It is really a waste, and like you said, it would be great if we could give them to someone who needed them, especially someone who can't afford their meds. There is so much waste! 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.


Sun May 08, 2011 1:42 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: doctor visit yesterday.. a tad confused!!
cdw wrote:
but to have so many, before even trying one of them.. just doesn't feel right

That doesn't feel right to me either. Yes, it is a trial-and-error process, and yes, different doctors approach it differently, but 50 prescriptions in a year is almost one a week. What kind of trial period is that? How can anybody make an informed decision about what is working and what is causing side effects if multiple drugs are started at once? I am a "pill person" (take many myself, unfortunately, and was accustomed to the many pills Coy took before Lewy entered the picture), but this just seems crazy to me. I'm not a medical professional of any variety, and this is just a layperson's view, but I'd be mighty frustrated in your situation.

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


Sun May 08, 2011 1:57 pm
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Joined: Fri Nov 05, 2010 11:30 pm
Posts: 317
Location: southern cali
Post Re: doctor visit yesterday.. a tad confused!!
a starter pack is a great idea..

or giving a few a chance, before starting another.. and tossing the last batch... as far as bad reactions its only been the statins .. 4 different changes. but the rest are just thinking this might work better over one that hasnt been even given a try..

im getting better in this process and learning to ask more questions.. so hopefully that part will lesson soon.. and then we can concentrate on just the ones we need and hope like heck they work...

its only been a week on the galantimine and i think im noticing a tad bit of change for the positive already.. or maybe just a bunch of good days all together.. either way, fingers crossed...
cindi

_________________
sole CG for hubby.1st symptoms, 2000, at 55. Diag with AD at 62, LB at 64.. vietnam vet..100% ptsd disability,sprayed with agent orange, which doubled chances for dementia. ER visit 11-13,released to memory care..


Sun May 08, 2011 7:53 pm
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