Wednesday, June 19, 2019

my story revisited 10

MY STORY REVISITED 10
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if you have a loved one who has to take aricept or donepezil or is contemplating taking aricept or donepezil for memory loss you might read my todays blog
now these are my experiences taking it over the last 8 years which may be slightly different from others who take it

i realize that most folks dont get to hear someone who is on aricept or donepezil be able to really describe the side effects that they have and have had while taking this drug
since
many folks are too far along with the disease when the drug is started

the day i saw the neurologist she wrote me a prescription for aricept or donepezil
i had read in the drug book all the side effects of this medicine
i use to open the book and read the major side effects of drugs to patients
in fact
the day before i got my prescription of aricept i had written one for my patient
i opened the book and read the major side effects of the aricept to him and his daughter
that probably was one of the last prescriptions i ever wrote
it seems sort of surreal doesnt it or is that ironic

now  before my appointment i had read research that implied that the earlier you start aricept in the alzheimers journey the better it works to delay symptoms
eg
my mom and younger brother were started on it in the middle part of the disease
i started it just when minimal symptoms were detected
in the research studies those who started it early like me might get say 10 years of benefit
those who started it later like my mom and younger brother might only get 1-4 years of benefit
then
symptoms fall off the cliff down into the abyss of alzheimers disease

i know and understand that its possible that might happen to me some day
when i dont know
im just enjoying these moments now in my life

as i look back on the side effects in the list in the book and compare it to what i experienced
today
i dont have major ones

at first
i was dizzy for a few days but that went away
i would get vertigo if i moved my head too fast
that went away
i started having abdominal pain in the morning that would take a few hours to go away
i remember meeting my nurse for lunch once soon after i was diagnosed and i was not able to eat anything because of the discomfort
this abdominal pain is mostly gone now
i eat breakfast spread out over the morning doing so 4 times starting at about 600am and finishing at about 1000am
basically i keep my stomach full for a few hours
this prevents the abdominal pain
i never get the diarrhea some folks get but lets just say constipation is never an issue here
i did get blurry vision for about a month after i took it but that has pretty much gone away now

as i write about in the old blogs from 8 years ago i do get hyper in the morning and also seem to be hyper alert and clear headed until about noon time then it seems to fade some
in fact
i have noticed that in the morning i can find myself doing all the talking like if you have ever been around someone with hyperactive add
by the afternoon and evening you will find me to be almost the opposite
im the quiet guy in the room

now i take my aricept in the morning even though it says take it at night
thats because of the abdominal pain it can cause
however
taking it at night can also prevent you from sleeping

when i take it at night i will not sleep
its like i took speed or something
speed for those who dont know are amphetamines

so i take it in the morning
i eat small frequent eatings in the morning
i do ok with that
i sleep not good but better

now my younger brother took it at night and it never bothered him

so today
my biggest side effects of the aricept or donepezil
are

sleep
i have no trouble falling asleep at night but i wake up about 5 hours later and sometimes i cant go back to sleep
luckily i am retired so i compensate some by taking an afternoon nap

if i dont do this after a few days i get totally exhausted which happened this last week
i do take a low low dose of melatonin that seems to help but i noticed after taking it for a few days i have even more problems with fatigue

its like being on a roller coaster sometimes
but
i manage to handle it ok

i must say right now i have a good life i am happy with

another issue i have with the aricept or donepezil is the vivid vivid dreams that i have that usually arent disturbing or violent
once i was on a herbal supplement for sleep that made me develop these horrible god awful dreams that made me stop taking the herbal supplement
i think it was the interaction between the aricept and the herb

now i have problems that has sort of developed over the last few years where i yell out at night and sometimes act out the dreams
my wife she says i yell real loud and thrash about and sometimes knock things off my bedside table
i keep a container of water on the bedside table but keep a lid on it
several times its gone flying across the room

lucky for my wife she i face away from her on my right side so all this activity is away from her
yes
ive scared the bejivies out of her a few times

i know this is the aricept
but
i also know that this could be the alzheimers disease advancing on me
since
this happens with this disease even without the aricept
it always is concerning to me when this happens since i wonder which is it

another thing that happens as a side effect is leg cramps and fasciculations
the leg cramps are better over time but they still happen usually after i have done a lot of physical activity
the fasciculations have not gotten better
i see them as a more ominous sign for me

these fasciculations are caused by small muscle fibers contracting and relaxing sort of independent of the total muscle ie the calf muscle
these only seem to happen usually on the calves of both legs

its common in folks with neurological diseases
eg
my friend greg who died from huntingtons disease had them all over his body especially his arms and legs
also like him when they are happening if i lay down my feet and lower legs get real fidgety so that i cant keep them still
in fact
if i lay still they will just move some on their own

yesterday after working 4 hours in the garden as i was lying down for my nap
i had my wife she look at them from afar
she could see this weird movement in my calves like snakes crawling around
she even put her hand on them and could feel all the movement
yep it weirded her out

now some if not all of these fasciculations are probably from the aricept
it inhibits the breakdown of acetylcholine in the nerve endings so that the nerve cells will fire and contract
in the brain this is good since damaged brain cells work better
this is how aricept works
but
the side effect is you get muscle cramps and fasciculations elsewhere
ie
for me it is in the calves

why dont i just stop this aricept stuff and be done with it
well
you can bet ive thought about it
ive even tried it for short bursts of time
things get better
however
it seems
if you have the disease like i do and its helping you to slow down the disease symptoms and you stop it
then
its possible you will not return to the same improved memory that you had when you stopped

if fact
say for me
if i stopped it my symptoms from the drug will be gone
but
i might be worse off with my memory so that those around me would notice a significant change
so
there is no way i will ever stop this aricept until i reach the point where it doesnt matter anymore

so
this the pill story that started 8 years ago
heres hoping for at least 8 or more years of it


12-27-2010

THE PILL
the pill sits on my desk
its name is aricept
its generic name is donepezil
the mgm strength is 5 mg
i just wrote a prescription a few days ago for my patient to take
now it sits here in front of me to take
i had to listen to the neurologist go over the side effects
hell i already know about it as i gave the same speech last week

do i really need this
lets see the side effects are nausea,vomiting, diarrhea
(that would be good since i have to have the black snake ie a colonoscopy
this week),
weight loss(i do need to loose 5-10 lbs), dizziness(i know what
thats like as i have recurrent vertigo), weakness, trouble sleeping
(every one that knows me knows that may be a good side
effect as i have probably fallen asleep on all of them in the past)
tremors, or muscle cramps(that dont sound good)

then they list the bad stuff that im sure the lawyers made them
write-seizures, dark emesis, irregular heart beat(i had that one
time 25 years ago and i did not like it at all), trouble peeing
(thats bad),
severe abdominal pain, and severe allergic reaction

then it says but most people do fine without major side effects-
well why did they not just write that and end it there

i mean do i really need this
if i had not had that neuropsychological testing a year ago
that was normal when i applied for long term care insurance
if i had not signed up for that study on alzheimers and had
that neuropsychological exam done that was abnormal
then i would not be sitting here writing about taking that damn
pill but would have been writing about something more
pleasant like the holidays

well when you put the total picture together-family history,
subtle things noted at work, abnormal test after a normal
one last year and the chance that all this could take off
sometime in the near future and the fact this pill will slow it
down for awhile
then i have decided to take it and never look back on the
decisions i made this week

now maybe i can find my shovel i misplaced

here goes i had my coffee and my bagel and now the
journey begins

12-28-2010

THE PILL DAY TWO
well today is day two of the pill-aricept(donepezil)
i got the generic brand for a $15 copay
when my mom was on it was over $100 a month
now the branded cost is $263

so alzheimers can initially be treated for $180 a year now
vs cash price of $3156 a year
(full generic price not available when this was written)

this is one way to decrease health care cost
i am glad i have health insurance
i feel sorry for those that do not

again i sit here ignoring that little white memory pill
-but i dont have memory problems thats noticeable

i am suppose to take it after eating breakfast
(oops not suppose to eat today see below)

will aricept really make a difference
i dont know but i think so in the long run

the only thing i noticed was some dizziness that lasted for
awhile but then it went away
i demonstrated last night that insomnia is not part of the
side effect for me yet

i did notice that i beat everyone at jeopordy even my
historic relative after i took the aricept (donepezil)

no just kidding!

here goes day 2

12-29-2010

THE PILL
my wife likes the side effect of this medicine
no not that side effect

it makes me slightly hyper and fitigitty so i am able to
get a lot done in the am after i take it
(so this is what add hyperactive type feels like)

the other side effect is insomnia
but i have found an afternoon nap helps a lot with that

12-30-2010

PILL HOLIDAY
i took a pill holiday as i had to be fasting until scope time
it was nice to not have some of the side effects-insomnia
and hyperactivity and dizziness
supposedly some of these will resolve over time or may
get worse
time will tell
i hope the hyperactivity continues as i sure have a lot of
projects to do around my place

i wish to thank my wife she for being with me through all this

the organicgreen doctor

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