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Medical Forum / Diseases and Disorders / Alzheimer's / March 2004

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Jennie

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Beverly - 21 Mar 2004 00:34 GMT
Jennie,
Do you mind telling me the dosage you started the risperdol for your Mom and
had you ever tried the less dangerous antipsychotics such as ativan,
seroquel, etc?  We have tried all the less dangerous ones and they had an
opposite effect for my mom so I am thinking about trying the risperdol but
am so very wary.  Please let me know if you had a similar pre risperdol
experience and your dosage on the risperdol.  Thank you.  I don't know if it
is the Namenda that is causing so much trouble or not..... I am going to
give it a little more time.
Beverly
----- Original Message -----
From: "Jennie" <jbuzun@nospam.nc.rr.com>
Newsgroups: alt.support.alzheimers
Sent: Saturday, March 13, 2004 11:03 PM
Subject: Re: Memantine (Namenda) Please Help!!!

> Jason,
>
> I'm glad to see we weren't the only ones with an initial bad reaction to
> Memantine.  I was wondering if I was imagining it.
>
> We started my mother on Memantine in November.  We did ramp up the dosage
> over 4 weeks, as recommended.  At that time, she was not taking her
Aricept,
> which she had been for about 3 years, because in late September/early
> October, she decided she wasn't going to take any of her medicines any
more.
> Shortly after that, we got her back on her blood pressure medicine, but
> decided to try the Memantine rather than the Aricept.
>
> IMMEDIATELY after starting her on the Memantine, she became very agitated.
> Normally not a great sleeper at night, she literally began sleeping no
more
> than 1-2 hours in a 24-hour period.  That 1-2 hours was gotten in 20
minute
> intervals when she would sit on the couch and nod off.  She was on her
feet,
> pacing around, the remaining 22-23 hours a day.  She also was constantly
> trying to get out of the house, trying to cut the blinds with scissors or
> pry the door open with a knife.
>
> Also, we didn't really notice any benefits in terms of memory.  She began
to
> have some hallucinations (grabbing at things in the air, making room for
an
> imaginary person sitting next to her on the couch, going up to the TV and
> talking to the people on the screen...)
>
> After about 6 weeks, we ditched the Memantine and put her back on Aricept.
> We noticed an improvement.  Also, because of her sleeping problems and the
> hallucinations/constant trying to get out, we got a prescription for
> Risperdal.  It's an anti-psychotic, but as a side effect, it makes you
> sleepy.  She takes it just before bedtime, and it did improve her sleep.
>
> I read in postings here, that Memantine is recommended to be taken with
one
> of the other types of Alzheimers medications (Aricept, Reminyl), so we
> eventually decided to try the Memantine again (started 3 weeks ago).  Mom
> did not display the marked increase in agitation this time, but things
were
> also different in that she was taking Aricept and Reminyl, which could
> affect this.
>
> The other thing I have learned is that Alz patients can go through phases,
> suddenly exhibiting strange new behaviors.  Sometimes it is difficult to
> tell whether the behavior is due to the new med or just a new stage in the
> disease.
>
> I guess we will give the Memantine a full 3 month trial this time.
Frankly,
> after the initial experience, I'm not all that impressed.  I think we
> caregivers are all in a position where we are so desperate for anything
that
> will help, that we fail to realize that many medications approved by the
FDA
> do not do any good for some people, and sometimes, for a majority of the
> people.  But you feel like you don't want to deny a potentially beneficial
> medication to your LO, so you go ahead and buy it anyway.
>
> Someone in the group posted earlier the sentiment that Memantine is worth
a
> try, all you have to lose is money if it doesn't work.  Unfortunately if
the
> medication brings on bad side effects, you have more to lose than money.
> Hopefully, the bad side effects are not permanent, and would disappear if
> the drug were stopped.
>
> I sympathize with your predicament, Jason, and hope you can figure out
what
> the best decision is for you and your mother's situation.
>
> Jennie
>
> "Jason Bolt" <jason_bolt@yahoo.com> wrote in message
> news:aPQ4c.36105$IG7.12583@newssvr16.news.prodigy.com...
> > My 82 year old mother has been on Aricept for a year now and just
started
> on
> > the starter pack for Memantine four days ago.  We had high hopes about
it
> > but I am afraid we cant handle the behavioral effects.  I constructed a
> wall
> > about a year ago to keep her out of the kitchen and it had been working
> > fine.  There is a small opening at the bottom for the cat to get
through.
> > Today mother got down on the floor and tried to figure out how to get
thru
> > it.  She later discussed it with me and said she planned to do it again.
> > Usually every evening she mentions something about her father and
mother,
> > who died decades ago, coming to pick her up.  Tonight the discussion
> lasted
> > an half an hour and was extremely unpleasant.  I hesistate to abort the
> > Memantine strategy because I know it is POSSIBLE that it could delay
> further
> > mental deterioration.  At this point, keeping her in the home is still
> > manageable.  I certainly dont want to have to bathe her, feed her, dress
> > her, etc.  But she was a lot easier to manage before she started on the
> > Memantine four days ago.  Her thinking is so muddled it seems almost a
> > mistake to stimulate it.  She has absolutely no idea what state or town
> she
> > is in, what season of the year it is, what day of the week, etc.  She
> > usually cant remember ANYTHING that has happened since 1939 even if it
was
> > only 5 seconds ago.  Is it really a good idea to use a drug to stimulate
> > thoughts in such a person?  Is that just the price I have to pay in
order
> to
> > delay further deterioration?  Are these just TEMPORARY side effects?
Dennis P. Harris - 21 Mar 2004 10:08 GMT
> We have tried all the less dangerous ones and they had an
> opposite effect for my mom so I am thinking about trying the risperdol but
> am so very wary.  

It was the only one that worked to calm my mother down.  She
eventually went off that when the Depakote took full effect, but
it takes 6 weeks to 3 months to build a therapeutic level and
Risperdol works in a few days.

Remember, you should be consulting with a geriatric psychiatrist
when you do this, since the effects can be so variable and there
are many drugs that you need to taper off of.  They usually give
something else with risperdol to prevent the muscle spasms known
as tardive dyskenesia.

Don't be afraid to *try* something new, but be prepared to work
with the docs to change if it doesn't work.
Mary Gordon - 21 Mar 2004 10:19 GMT
Beverly, while I would never suggest that Risperdal is no big deal, it
is not a particularly dangerous drug - it actually has fewer side
effects than many of the alternatives. They even use it in children
(i.e. for autism and other mental health disorders).

Mary G.
Katie - 22 Mar 2004 04:49 GMT
> ... less dangerous antipsychotics such as
> ativan, seroquel, etc?  ....

Hi Beverly,

Ativan is not an antipsychotic, it's a "minor tranquilizer" in the same drug
class as Valium. Seroquel is a "major tranquilizer."

"Major tranquilizers," antipsychotics, or neuroleptics treat funny thinking
(departure from reality) and the agitation it brings with it.
(http://www.websters-online-dictionary.org/definition/english/An/Antipsychot
ic.html) A side effect of these medications is that they make the patient
sleepy. They are not "habit forming."

Ativan is a "minor tranquilizer," in the same class as other anxiolytics
such as Valium (http://www.benzo.org.uk/ncti.htm). These medications in the
benzodiazepine family calm anxiety and relax muscle tension. They are "habit
forming" in the sense that one might need a larger and larger dose to have
the same effect and their long term use can be difficult to stop abruptly.
It takes a while to become dependent on these medications so for
intermittent or short term use there is no danger. These medications also
make the patient sleepy and they are often used to treat short-term sleep
problems.

Signature

Katie

Darryl - 22 Mar 2004 05:58 GMT
HI Beverly,

>Do you mind telling me the dosage you started the risperdol for your Mom and
>had you ever tried the less dangerous antipsychotics such as ativan,
>seroquel, etc?  

Ativan (lorazepam) is similar to Valium (diazepam); both act as mild
tranquilizers.  Seroquel is an atypical neuroleptic (so-called
antipsychotics) that was introduced in 1997.  Risperdal (Risperidone)
and Zyprexa (Olanzapine) were introduced in 1994 and 1996
respectively.  Both Zyprexa and Seroquel have fewer side-effects when
compared to Risperdal; however, Seroquel may be more sedating than
Zyprexa.  Did that make sense?  

>We have tried all the less dangerous ones and they had an
>opposite effect for my mom so I am thinking about trying the risperdol but
>am so very wary.  

Please elaborate on "opposite effect".

What was the dose of Seroquel?  

>Please let me know if you had a similar pre risperdol
>experience and your dosage on the risperdol.  Thank you.  I don't know if it
>is the Namenda that is causing so much trouble or not..... I am going to
>give it a little more time.

Did the effect noted above start with Namenda?  

Take care,
Darryl.
Beverly - 23 Mar 2004 06:29 GMT
"Darryl" > HI Beverly,
I will try to answer your questions.

> Ativan (lorazepam) is similar to Valium (diazepam); both act as mild
> tranquilizers.  Seroquel is an atypical neuroleptic (so-called
[quoted text clipped - 3 lines]
> compared to Risperdal; however, Seroquel may be more sedating than
> Zyprexa.  Did that make sense?

I have heard horror stories about zyprexa so no thanks.

> >We have tried all the less dangerous ones and they had an
> >opposite effect for my mom so I am thinking about trying the risperdol but
> >am so very wary.
>
> Please elaborate on "opposite effect".

Opposite effect --- instead of calming her the ativan and the seroquel
induced increased agitation leading to more dulusional and hallucinatory
behavior.  >
> What was the dose of Seroquel?

this I don't remember but she was not given it daily it was on a prn basis.

> >Please let me know if you had a similar pre risperdol
> >experience and your dosage on the risperdol.  Thank you.  I don't know if it
> >is the Namenda that is causing so much trouble or not..... I am going to
> >give it a little more time.
>
> Did the effect noted above start with Namenda?

The agitation and panic problems mother had "on occasion" before the Namenda
are now an every night problem bleeding over into many days.  We are all
exhausted from it all.

> Take care,
> Darryl.
Evelyn Ruut - 23 Mar 2004 12:36 GMT
> "Darryl" > HI Beverly,
> I will try to answer your questions.
[quoted text clipped - 37 lines]
> > Take care,
> > Darryl.

Beverly,

What may be happening is that the Namenda is "improving" your mother's
cognitive abilities just enough to make her more aware of her deficits
enough to worsen the sundowning effects and acting up at the end of the day.

My mother in law drove us CRAZY with her sundowning earlier in the process
of this illness.  Now she doesn't do it much at all,.... she is much more
easy going, but that is because she hasn't got the mental abilities left to
be such a problem.   I am sure it is that her awareness of "something being
wrong" has lessened.

I have noticed that when she occasionally gets a "better" day, she is more
difficult to deal with because she starts asking to go home and all of that
stuff all over again.

Drugs are merely helpers in this illness, and in some cases you have to pick
and choose what you want to be dealing with more.

For instance, earlier in the process, my mother in law was on 150 mg of
Zoloft daily and .05 of Risperdol twice a day and it was only just barely
controlling the negative moods and the stressful delusions.   I mean to say
she was still having them, but was just less difficult about them due to the
drugs.  No matter what medication she got, she was still VERY uncomfortable
mentally, and just in a really bad space ANYWAY in spite of the effects of
the drugs.

Now she is backed down to 100 mg. of Zoloft and one one day we will give her
one Risperdol tablet and on the next day, we give her the two.   I find that
she is actually better off with less medication at the present time, but
that is only because her illness has gotten bad enough that the delusions
and more complicated fears have lessened on their own.   It takes a certain
amount of brainpower to get like that in the first place, and as she has
lost brain cells, she has also lost the restlessness, fears and delusions
somewhat.

Every drug has a package of side effects it comes with and you have to watch
very carefully to see what is going on with any drug.   Sometimes NO drug is
going to make it go away, but maybe just make it a tiny bit easier to deal
with.

Signature

Evelyn

(To reply to me personally, remove sox)

Mare - 23 Mar 2004 20:35 GMT
snip

> Beverly,
>
> What may be happening is that the Namenda is "improving" your mother's
> cognitive abilities just enough to make her more aware of her deficits
> enough to worsen the sundowning effects and acting up at the end of the day.

snip

This is the biggest reason we stopped Mom @6mg of Exelon instead
of continuing on to the 9 mg dose. She was so much more aware of
her deficits that she was miserable and unhappy. It was so sad to
watch this since she would not be "cured" all we could hope for
were more activities of daily living but at what price?
Signature

Mare
mfcoleman@THEOLEmindspring.com
http://www.muggsmulcher.com/kstuff/a.s.a/intro.htm
alt.support.alzheimers' FAQs and Stuff Pages

Darryl - 23 Mar 2004 13:33 GMT
>> Ativan (lorazepam) is similar to Valium (diazepam); both act as mild
>> tranquilizers.  Seroquel is an atypical neuroleptic (so-called
[quoted text clipped - 5 lines]
>
>I have heard horror stories about zyprexa so no thanks.

Yet it does have fewer side-effects.  At two major centers in Canada,
it's the front-line neuroleptic.

>Opposite effect --- instead of calming her the ativan and the seroquel
>induced increased agitation leading to more dulusional and hallucinatory
>behavior.  >
>> What was the dose of Seroquel?
>
>this I don't remember but she was not given it daily it was on a prn basis.

The reason I ask is that with Lewy Body dementia, antipsychotics may
worsen the condition like you indicate--did she develop a gait
disturbance on the drug (similar to parkinson's)?  It's odd that the
doctor prescribed it as needed (that's prn everyone) rather than a
daily dose

>The agitation and panic problems mother had "on occasion" before the Namenda
>are now an every night problem bleeding over into many days.  

Evelyn's made some good observations regarding the utility of various
drugs in these damned diseases.  Her agitation and panic may simply be
an exacerbation of her current state if the Namenda is doing its job.
Sorry if I'm not paying attention, but did your Mom have any lucid
moments in the month or so before the Namenda started?

>We are all exhausted from it all.

I know the feeling.

Darryl.
Jennie - 22 Mar 2004 07:31 GMT
Beverly,

Unfortunately, until I can run over to my Mom's house and look at the
Risperdol bottle, I can only be partially helpful.

The Risperdol comes in both liquid and pill form.  I know that Evelyn Ruut's
MIL is taking the pill form, but we asked the doctor for a prescription for
the liquid form, because one of the nurse's aides who is taking care of my
mother had experience with the liquid and found it convenient to slip into a
drink to get the patient to take it.

I will need to check the strength of the liquid medication.  However, the
(correct) dosage for us to start her on was one-fourth of a milliliter at
bedtime (the liquid comes with a dropper that is marked off with dosages).
We were to keep Mom at that dosage for a week, then up it to one-half a
milliliter, remain at that dosage for a week, then up it to one milliliter
if needed.  After about 2 weeks, the one-fourth milliliter dosage was no
longer enough, so we upped it to one-half milliliter.

The doctor said that we could also give a dose during the day if needed, but
we and the caregivers have decided not to.  Since the major problem was
sleeping and that has improved greatly, we just have the aides give Mom the
medicine before bedtime.  Enough of the effect carries over to the day time
that the worst of the anxiety is gone.

We did not try any of the other anti-psychotics first because we had heard
about Risperdol and specifically asked for that.  About 6 months ago, we did
try Doxepin (I think this is an anti-depressant) at a very low dose (10 mg
at bedtime), but this did not have any effect helping my mother sleep
better, and then my mother decided she was not going to take it anyway (she
is much more compliant now about taking her medicine).

You asked about the pre-Risperdol experience.  I am trying to reconstruct,
based on the doctor's notes and my memory.  My mother saw the doctor in late
Oct. 2003, which was when we got the Memantine prescription.  She did not
begin taking it immediately, because I had to order it from overseas and it
took me a while to find a place to order it from, etc.  So she started
taking it in perhaps late November.  The same week that she started taking
the Memantine, she became very agitated, not sleeping, trying to get out of
the house, etc.  I still do not know whether this was cause-and-effect, or
just a coincidence that a new behavioral stage in her Alzheimers started at
the same time as the Memantine.  At this time, she was not taking Aricept
(which she had taken up until mid-October when she quit taking all her
meds).

In January 2004, we had finally had enough of the agitation, so we took her
to the doctor again.  We got a prescription for Risperdol, put her back on
the Aricept, and discontinued the Memantine.  After the initial bump getting
the wrong dosage on the Risperdol, she seemed very happy for a couple of
weeks.  It seemed as if trading the Memantine in for the Aricept made an
improvement.

After reading in the chat group that the best results seem to be gotten with
Aricept and Memantine together (and also hearing that some drugs need 3
months to show a real benefit vs the 6-7 weeks she was on Memantine), we
decided to try the Memantine again.

This time, we did not notice an increase in agitation.  However, she was
also on Aricept and Risperdol, which was not the case the first time around
with the Memantine.

Unfortunately, my mother has entered a stage where she is declining rapidly,
even from one week to the next.  Things such as the agitation that seemed
initially to look like it was triggered by Memantine, now looks like one
stage in an increasingly rapid slide downward.  Sometimes I feel that there
are just so many questions I don't know the answer to.  You try so hard to
do the right thing for your loved one, but since this is a disease no one
recovers from, many of those "right things" feel fruitless in the end.

One thing that is a comfort regarding the Risperdol:  If you try it and find
out it is not for your mother (bad reaction, or whatever), be assured that
it does pass out of the body with time.  When we gave my Mom the overdose
(several days in a row) that turned her into a zombie, that effect
eventually wore off after we stopped the overdose.

Hope this info helps, Beverly.

-Jennie

> Jennie,
> Do you mind telling me the dosage you started the risperdol for your Mom and
[quoted text clipped - 123 lines]
> > to
> > > delay further deterioration?  Are these just TEMPORARY side effects?
Dennis P. Harris - 22 Mar 2004 10:13 GMT
> The same week that she started taking
> the Memantine, she became very agitated, not sleeping, trying to get out of
[quoted text clipped - 3 lines]
> (which she had taken up until mid-October when she quit taking all her
> meds).

It could have due to her going off the Aricept earlier.  
 
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