10 Year Experience with Dementia

[[Ed...]]

The reason for joining is because my wife was addicted to Clonazapam after taking it for anxiety. She subsequently had early-onset FTD which I believe was due to the long-term use of the benzo.

 

After being in and out of Memory Care Facilities (MCF), I now have had her home and off all prescription drugs for 18 months. I have written a book (open sourced) on this experience and hope to post the book content text here.

 

EdwardL

[[me...]]

Welcome to the forum!  We're glad to have you as a new member.  I'm sorry about your wife's situation, and am glad she's off benzos.  However, please note that we do not allow members to promote commercial enterprises on this forum, and that includes book promotion. 

 

You'll find plenty of information and support here.  Our members have gone through all aspects of withdrawal, and you're likely to find  people who understand what you're going through and can tell you what has worked for them.  For those who are currently tapering, we suggest reducing no faster than 5-10% every 10-14 days, and some taper even slower than that.  One exception: very short-term users of a few weeks or less may be able to taper faster than that. 

 

Having some withdrawal symptoms is normal, especially near the end of a taper and for a month or so after discontinuing the medication.  The most common symptoms are anxiety and insomnia, but these and other symptoms are temporary and will go away in time.

 

Here are a few links you may find useful:

 

Post Withdrawal Support Board

 

The Ashton Manual is an authoritative source on what to expect in withdrawal and recovery.  Dr. Ashton is an expert in the field.  She describes and explains withdrawal symptoms in Chapter III, and there is also a section with withdrawal/taper schedules.

 

Please take the time to Create a Signature.  This will allow others to see where you are in the process so they can better support you.

 

Again, welcome!

 

 

 

[[Ed...]]

I don't want to promote the book which I self-published free-source, but I would like to attach a file of the book contents so anyone can read without purchasing the book. The goal is to just get the information out. However, it is not clear to me how I would attach a file.

 

Richard

[[Co...]]

Hi Richard,

 

Please start a Ticket at the Contact the Team area (on forum main page), and we will see what we can do. If it is not a commercial venture, that makes a difference.

 

Thanks.

[[lo...]]

Hi Richard

 

I am sorry to read about your wife.  Thank you for writing a book to try and inform of the dangers of benzodiazepines.

 

Fiona

[[Ed...]]

Coming Back Home, A Dementia

Experience

 

Introduction

 

My wife, Kathy, had early-onset dementia at the

age of 62. This book is an account of our 10 year

experience with dementia that was diagnosed to

be Frontal-Temporal (FTD). Kathy had the

additional problem of being gluten and dairy

intolerant. Documented are our experiences with

prescription drugs, Memory Care Facilities, and the

use of natural supplements in place of prescription

drugs in order to bring Kathy back home. Kathy has

now been off of prescription drugs and back home

for 18 months.

 

The Beginning

 

Kathy’s early-onset dementia story begins about 10

years ago at age 62. At the time, her blood

pressure was on the high side, typically 145/70.

However, whenever we would go in to see the

doctor, it would be 160-170/70 (white coat

syndrome). Kathy was very afraid and had a lot of

anxiety about having a stroke because of the

perceived high blood pressure. In any event, she

ended up being given two prescription drugs:

Lisinopril (20mg x2) to reduce blood pressure, and

and a diuretic, hydrochorothiazide (12.5mg). Kathy

first tried a beta-blocker for BP, but her pulse

dropped too low and I was afraid that she might

pass out. We had always been anti-drugs, so this

was hard to accept. However, at this point, I didn't

know of a quick solution using natural alternatives.

Things to try longer term, but no quick fix.

 

Actually, her story begins about 20 years earlier

when we determined that she was gluten and dairy

intolerant, but not celiac. The gluten intolerance

would result in migraine-like headaches. This was

assumed to be an autoimmune response that

caused brain inflammation. Because of lactose

intolerance, dairy had already being minimized

because it caused upset stomach and severe

constipation. However, we weren’t strict until

Kathy began having neurological problems, then

we started a strict no-gluten and no-dairy diet.

One explanation for the headaches is that the

gluten peptide and the dairy casein peptides look

similar to some of the brain cells and therefore the

immune system was also attacking the brain cells

thus causing the inflammation.

 

Although Kathy had been taking the two

prescription drugs for several months, they seemed

to have little effect on her blood pressure (BP)

that we were monitoring at home. Her anxiety

grew worse and she began to have the white coat

syndrome even at home.

 

As a result, it was a fateful weekend when we

went to the Urgent Care Center to get something

for her anxiety. That something was a prescription

drug Clonazepam (0.5mg), a benzodiazepine that

acts on GABA receptors. Thus, much to my dismay,

Kathy was now taking three prescription drugs.

 

As mentioned, Kathy’s neurological problems

started about 10 years ago This is also the about

the same time that she began taking the

prescription drugs.

 

The Symptoms Start

 

The first neurological symptom was when she had

trouble following text when reading and Kathy

started trying to use her figure as a guide.

Then she started having trouble writing.

Then she had trouble with speech and locating

objects close to her.

 

At the time, we were living on a small lake in a

rural area. The nearest hospital was a half hour

away and the nearest family doctor was about 15

minutes away. It was obvious that this location

would not be adequate for her worsening condition

and therefore we moved to a large city where

specialists were available and family nearby.

However, before we left, an MRI was done at the

regional hospital. The MRI machines are very noisy

and luckily we were able to get Kathy to remain

still.

 

The MRI showed that there was significant damage

to the parietal portion of the brain as well as some

o f the f r o n t a l l o be. Inter net s o u r ce

www.neuroskills.com claims that:

“If damage is sustained to the parietal lobe, a

person would most likely have difficulty reading,

recognizing people and objects, and having a

comprehensive awareness of his or her own body

and limbs and their positioning in space.”

and,

“Damage to the left parietal lobe can result in

what is called "Gerstmann's Syndrome." It includes

right-left confusion, difficulty with writing

(agraphia) and difficulty with mathematics

(acalculia). It can also produce disorders of

language (aphasia) and the inability to perceive

objects normally (agnosia).”

 

Although her ocular vision was fine, she began

having trouble locating objects near her and as a

result she began having trouble holding a fork and

eating normally. The neuron signals from the eyes

were no longer being processed correctly by the

brain.

 

As her memory faded, taking the medications

became a problem. I did not know whether she

was taking 1, 2, or no pills. I had to start taking

control of her dosage. And, since I felt that the

medications were somehow related to her

neurological problems, I wanted to start weaning

her off of them.

 

Since the BP drugs seemed to have little effect on

her BP, I started there. The easiest one to

discontinue was the diuretic since it was not taken

every day. The Lisinopril was quite another matter.

Kathy was absolutely insistent on taking it. As a

solution, I went to the drug store to find a pill that

looked like the Lisinopril. It turned out that baby

aspirin looked similar and I substituted those in the

prescription bottle. I was no longer concerned

about her taking the substituted BP medication. At

her insistence, I would periodically check her BP

and, even if a little high, I would always tell her

that it was good. It had been a couple years, but I

had finally gotten her off the BP medicine.

 

Backing Up for a Minute

 

I believe Kathy had double jeopardy. It is

conceivable that she had two separate, but

possibly related paths to dementia:

1. Gluten and dairy intolerance

2. Prescription drugs to treat anxiety and high

blood pressure.

As mentioned earlier, gluten, and dairy to a lesser

extent, caused migraine-like headaches. The

gluten peptides and the dairy casein peptides look

very similar to some of the brain cells and

therefore the immune system was attacking the

brain cells thus causing the inflammation. It is my

belief that this inflammation would lead to lateonset

dementia, whereas the medications caused

early-onset dementia. Kathy’s mother died of lateonset

dementia, which may have been caused by

an intolerance to gluten and/or dairy.

 

Over the past 5 years or so, if she eats gluten and

dairy, she becomes very agitated and

uncontrollable. This is evidence of a glutenneurological

connection.

 

Continuing to Decline

 

Kathy’s memory and mood continued to decline.

She started waking up violently and throwing off

the covers in a panic. She was afraid of the green

light on the ceiling smoke detector. I covered that

with tape. Fortunately, she got over being afraid of

the ceiling fan.

 

Then urinating and bowel movements not in the

bathroom began. Finally Kathy had to start

wearing incontinence underwear.

 

Kathy would then have periods of extreme

agitation, paranoia , and was at times

uncontrollable. I had to learn the hard way that

wine and alcohol significantly interfere with the

Clonazepam effectiveness.

 

Kathy began to wander and several times our

family had to drive out and search for her. The

local police department became very familiar with

Kathy also. The police picked her up walking

beside the road in the rain about a half mile away.

There were a couple more instances. I had bought

her a bracelet with her information on it in cause

she became lost. Another time, she road her

bicycle down to the southern edge of our town.

Fortunately, I received a call when the people

noticed a problem.

 

And one night, she got out and was knocking on

neighbor’s doors at 4:00 in the morning.

Fortunately, no one responded before I caught up

with her.

Her periods of memory loss, agitation, and

paranoia continued to grow worse. It became

aggravating beyond belief to be constantly

searching for her purse. She would hide it at home

because of her paranoia, and forget it at

restaurants. I finally reduced her credit card to a

very low limit and made a copy of her license to

put it in the purse.

 

Understanding Clonazapam’s uses can help in

understanding Kathy’s behavior. Clonazapam is

used to control:

1. Anxiety

2. Short term memory loss after surgery

3. Seizures

This medication was intended only for short term

use (2 weeks) and not intended for long term use.

Thus, although Kathy was being treated for

anxiety, memory loss was a side effect. And,

unfortunately, as indicated by the quote from the

Clonazapam Addiction Help Website:

“Is Memory Loss Permanent?

While memory loss is a common side effect of

clonazepam use, the symptoms are likely to cease

when a person ends their short-term use.

However, prolonged and excessive use of the drug

can cause brain damage that might be

irreversible. It is important to get treatment for

clonazepam abuse to prevent any brain damage,

physical damage, or further psychological harm.”

Sadly, it is my position that the the result of long

term Clonazapam use by Kathy did result in her

early-onset dementia. I sometimes blame myself

for not getting her off of this drug quicker.

However, anxiety was still a problem and she was

already addicted to it at this point. Trying to

reduce the dosage would make her behavior

worse.

 

Thus, I was always confronted with the

question “was her condition actually that

worsened state and the medication was helping, or

was her behavior a result of the medication?” I

asked the family doctor about getting her off of

the medication, but he said because the dosage

was so low and seemed to be helping her, then why

not continue?

 

It came to the point where Kathy could no longer

drive. The last time that she drove, she turned left

in front of an oncoming car, which sent her to the

hospital and totaled the car. Fortunately, Kathy

had no serious injuries. This was the last time that

she drove. Kathy was too afraid to drive after that.

One of the purposes of Clonazepam is to induce

short-term memory loss. It was not clear whether

she should take the pill in the morning, mid-day, or

evening. Over a period of time, we settled on

evening.

 

This is when the major issue arose. At times, Kathy

would not know who I was and she thought I was

someone off the street wanting to take her food,

money, etc. I had to physically prevent her from

leaving the house at 4:00 am once because she was

going to go knock on neighbor’s doors. She was

afraid of me.

 

Reading more about the side effects of

Clonazapam on the internet, I realized the

Clonazapam was causing her not to know me. And

since I was giving it to her in the evening,

nighttime was the worst situation. I tried to wean

her off of the Clonazepam by taking a file and

reducing the tablet size little by little each week.

Remember, this drug is more addictive than heroin,

and more difficult to get off of.

 

The pill shaving lead to a near disaster. One

morning Kathy had an absolute meltdown and was

uncontrollable. To this day, I’m not sure how I was

able to get her to take another pill. She finally

calmed down a little later. To stop taking

Clonazapam could cause a seizure or even death

because the natural GABA had been displaced and

there was not enough natural GABA receptors

remaining to control the Glutamate.

 

Kathy was also prescribed Aricept (5mg) by the

neurologist. This was taken for only a short time

since I saw no difference in her condition, and it

does not aide in recovery.

 

During all this experience, I still questioned

whether her behavior was a result of the

medication, or was it simply her underlying

condition and the Clonazapam was helping to

control it?

 

First Memory Care Facility

 

It was at this point that I decided that I could no

longer take care of Kathy and I decided to move

her to a Memory Care Facility (MCF). I did this for

her own safety. This was about 4 years ago.

The first MCF that Kathy was moved into was

located nearby. The Facility was new but the

Memory Care unit was rather small. Kathy is very

active and size became an issue. Leaving my soul

mate of 46 years there was a very, very traumatic

experience. I cried as I drove out of the parking

lot. That emotion was so strong, that even to this

day, I cry a little bit when I think of it.

 

One day when I came back in, she was sitting and

crying looking out the window. That made my

heart sink. Apparently, she had tried to get out of

one of the locked doors and they wouldn't let her

as expected. The fact that there was no one trying

to console her really upset me. I took her back

home that day. The size of the facility was also a

factor in that decision.

 

Our family located a larger, better equipped MCF

that would be more suitable for Kathy.

 

Second Memory Care Facility

 

One of the goals when Kathy entered the new MCF

was to have the the doctor do a systematic

withdrawal from Clonazapam, which was

something I tried but as previously mentioned

nearly ended in disaster. Upon entering the MCF,

she was mistakenly prescribed 0.5mg twice a day

by the family doctor. It took me a little while to

get that straightened out, but it was not a good

start. She was transitioned initially to Effexor.

However, other medications soon were added to

try to control Kathy’s behavior. Whether these

were better or worse is debatable.

 

While at the MCF, Kathy had a variety of issues

which included insomnia, incidents of aggression,

agitation, and wandering. A major issue was that

Kathy would sometimes go a couple days without

sleeping. The neurologist would periodically

experiment with d i f ferent medication

combinations to try and find the best combination

for the current situation. During her stay, Kathy

knocked one of the aides on her butt, and another

aide was off of work for a week with a twisted

shoulder. They soon found out that Kathy, although

small, was quite strong and had upper body

strength from swimming all her life.

 

The doctor at the MCF would routinely schedule

urinary tract infection tests because of Kathy’s

insomnia. The results were always negative and

when he then wanted to do a catheter, I said no,

and that I would not approve any more urinary

tests.

 

Kathy loved music and she used to play the piano.

Although she no longer could read music, she still

played beautiful chords and would sing in her own

way. I would use my iPad and bluetooth speaker to

play the old songs that she loved and sometimes

for the other residents as well.

 

I was constantly washing soiled bedsheets,

bedspreads and clothes. Cleaning the rug at the

MCF was a common occurrence. The apartment

was flooded several times. This is a consequence

of having 15 or more residents to 1 aide at night.

I often took Kathy out to the park for a walk during

the day and sometimes packed a lunch or ate out.

This became increasing more difficult and a couple

times she resisted going back into the facility and I

had to call for help. The head nurse requested that

I not take her out for awhile.

 

After a period of time in the MCF, Kathy was taking

the following cocktail of prescription drugs

(descriptions from www.Drugs.com):

1. Pyridostigmine BR 60mg Tablet (Mestinon)

“An orally active cholinesterase inhibitor.

Pyridostigmine bromide inhibits the destruction of

acetylcholine by cholinesterase and thereby

permits freer transmission of nerve impulses

across the neuromuscular junction.”

2. Divalproex SOD 125mg Cap (DB)

“Divalproex sodium affects chemicals in the body

that may be involved in causing seizures. It is also

used to treat manic episodes related to bipolar

disorder (manic depression), and to prevent

migraine headaches. Unfortunately, the

anticonvulsant medication has been linked to

suicide, liver toxicity, and pancreatitis. Divalproex

works by increas ing the amount of the

neurotransmitter gamma amminobutyric acid

(GABA) in the brain.”

3. Venlafaxine HCL 37.5 mg Tablet (Effexor)

“Venlafaxine is an antidepressant in a group of

d rug s c a l l e d s e l e c t ive s e rot o n in and

norepinephrine reuptake inhibitors (SSNRIs).

Venlafaxine affects chemicals in the brain that

may be unbalanced in people with depression. It is

used to treat major depressive disorder, anxiety,

and panic disorder.”

4. Amantadine 50mg/5 ml Syrup

“Amantadine prevents and treats certain types

of flu. It is used to treat Parkinson disease and

uncontrolled muscle movements caused by some

medicines. How amantadine works against

Parkinson disease is not known.”

 

As we know, prescription drugs do have side

effects. The literature suggests the average

number of side effects for drugs is approximately

70, whereas for for brain medications it is over

200. Although prescription drugs may work as

intended most of the time, at times they created

the very problem that was being treated. Kathy

had instances of aggression and that would be

treated with even more medications. My

experience has been that it always results in a

downward spiral of more and more medications.

The last medication to be added to her

prescriptions was Amantadine. This was my least

favorite. The Amantadine made Kathy drowsy and

almost unresponsive to me. It was questionable

whether it was worth my time to go see her

because it made no difference. Also, when she

would sleep, she would jerk and shake, which

certainly wasn’t quality sleep. I asked the nurse to

please have the doctor reduce the dosage, which

they did. I was a frequent visitor to the head

nurse’s office trying to get the medications

reduced to minimize the negative effects on Kathy.

However, I understood their position of needing to

insure that residents and staff members were safe,

and that she would not be disruptive.

 

Increasing medications did result in large purple

patches under the skin of the forearms and hands

which were of concern. Hallucinations were ever

present.

 

I received a call one day that Kathy had slapped

another resident. I was told that the Neurologist at

the MCF had no further medications to recommend

and that she would have to leave or go to a

Psychiatric Hospital to to have her medications

adjusted. If the medication change was successful,

she could then return after having been a resident

for almost 2 years. I didn't have much choice but

to agree.

 

Psychiatric Hospital

 

This Hospital is where they typically treat people

with alcohol and drug addiction, suicidal

tendencies, manic depression, schizophrenia, etc.

What a disaster! The handoff of medications

between the MCF and the Clinic did not occur. As a

result, Kathy suffered withdrawal while at the

Clinic and they gave her PRN shots that turned out

to be a benzodiazapine. Although she was being

watched 24 hours, and trying to sleep in a bed

intended for suicidal patients, she still fell down

and hit her head. As a precaution, she was sent to

the hospital for a CAT scan where they had to give

her another PRN shot to calm her down. The scan

was negative.

 

The medication chosen for Kathy by the Hospital

medical staff was Zyprexa. I do not know what the

dosage was. A description of this medication is as

follows:

“Zyprexa (olanzapine) is an antipsychotic

medication that affects chemicals in the brain.

Zyprexa is used to treat the symptoms of

psychotic conditions such as schizophrenia and

b i p o l a r d i s o r d e r. Z y p r e x a i s a

thienobenzodiazepine. This drug blocks multiple

receptors, including dopamine and serotonin in

the brain. It is not approved by the FDA (Off-

Label) for use in psychotic conditions related to

dementia. It may increase the risk of death in

older adults with dementia-related conditions.”

Sounds like a good choice, don't you think?

 

Our initial shock was when our family first went to

to see her during visiting hours. It took two aides

holding each arm to assist Kathy in walking to the

visiting area. The Zyprexa shut down the dopamine

and her along with it. Kathy also was not very

responsive to our presence and I doubt that she

knew who we were. This is certainly not the way

she entered the hospital when she was fully mobile

and interactive.

 

Well, I guess this is one way to solve the problem.

She wouldn’t or couldn’t bother anyone in this

state! It was 2 weeks before they were ready to

discharge her. The MCF agreed that she was ok to

return in this condition.

 

When they released her, I had to have help getting

her into the car. When she went in 2 weeks earlier,

she was fully mobile, interactive, and played

lovely piano chords. She has not played piano

since. The medications had done further damage.

Her condition was absolutely not acceptable to

me. I did not return Kathy to the MCF and I am

disappointed that they even considered this

condition acceptable.

 

Third Memory Care Facility

 

I had Kathy home long enough to start reducing the

Zyprexa while we looked for another MCF. Slowly

over time, she again became mobile and

interactive, but sadly, she no longer played the

piano. Fortunately, Zyprexa is not as difficult to

discontinue as is Clonazapam.

 

We found a 5 resident MCF that was actually a 5

bedroom ranch house very close by. During the day,

there were 2 aides, and 1 at night. I explained our

previous bad experiences to the new doctor and

my wish to minimize giving Kathy prescription

drugs.

 

The medication of choice for this doctor was

Depakote (Divalproex SOD 125mg Cap). I believe

the initial prescription was for 2 capsules in the

morning and 3 capsules in the evening. The doctor

believed that Depakote would help with behavior

and sleep issues. Later on it was actually increased

from 5 to 7 capsules. However, at the 7 level,

Kathy had ankle and foot swelling which had to be

addressed. I didn’t realize it, but Kathy was

actually being given Depakote at the second MCF

also.

 

Insomnia was a major problem here as well. She

would sometimes go a couple days without

sleeping. The doctor claimed that the Depakote

aided sleep. However, it would have been very

easy to plot a curve of insomnia versus Depakote.

Insomnia increased with increasing Depakote.

Maybe this is just a condition for Kathy. It is

possible that the Clonazapam so damaged the

GABA receptors that any medication that increases

GABA quickly shuts down serotonin which is the

precursor to the sleep regulating hormone

melatonin. To this day, I can not give Kathy

anything that increases GABA. That includes Lemon

Balm, Passion Fruit, Taurine, Valerian, L-Theanine,

etc. If I do, she will not sleep.

 

I would often pack a lunch and take Kathy to a

nice park nearby. However, the last time I did that

was a near disaster. I always knew when it was

time to abort the mission and head back to the

facility. Kathy would get a stern look on her face

and typically say “Why did you do that”, as if I was

doing something wrong. At this point, I knew the

clock was ticking and I needed to get back as fast

as possible.

 

Too Late! When I tried to get her in the car, she

started screaming and yelling like I was trying to

rape her. People in another car in the parking lot

were wondering what was going on. A lady came

over and tried to help. As it turns out, she was a

worker at another Assisted Living Facility. All was

to no avail. Kathy proceeded to race across the

parking lot and tried to climb a fence. When that

didn't work, she headed down the sidewalk waving

at cars and trying to stop them. I was scared to

death that she would run out in front of one.

Fortunately, the direction she headed was toward

the Fire Station. I was able to steer her to the

station where I saw 3 firemen. They came to help

and I told them about the situation. They

restrained her (with difficulty) while I went back

to get the car. It was not easy, but we were able to

get her back into the car. By the time Kathy and I

got back to the facility, she was happy and singing.

Go figure!

 

Smallness again became an issue. Kathy is very

active and the ranch house was just too

constraining. She would try to move furniture,

lamps, and pictures. Redirecting her became a

common occurrence and Kathy became more

agitated and combative. As a result, the Dapakote

was increased and a second medication, Haldol,

was added. Some details for this drug are:

“Haldol (Haloperidol) is an antipsychotic. It

blocks the effects of dopamine and increases its

turnover rate, but may increase the risk of death

when used to treat mental problems caused by

dementia in elderly patients. Most of the deaths

were linked to heart problems or infection. Haldol

is not approved to treat mental problems caused

by dementia.”

 

The combination of Haldol and Depakote was

enough to shut Kathy down to the point where she

could not even sit up by herself, let alone walk,

and she was unresponsive to me. It was awful to

see her just try to move one foot in front of the

other. The situation continued to deteriorate as

the medications continued to build up in her

system. The doctor saw her but made no changes

to the medication dosages.

 

That was it! I simply could not stand to see her in

such an awful condition. I took her home and I

never looked back. I finished off a bottle of wine

that night because I knew that it was all on me

now.

 

Back At Home

 

With some difficulty, I was able to get her home

and in a chair in front of the TV. This is where she

stayed unless I moved her. The first thing that

happened is she voided on the chair. Then she wet

the bed at night for the first several nights. When I

took her to the bathroom to urinate, the urine was

brownish and awful smelling. No wonder that they

recommend liver and kidney tests every few

months. The medications were such a toxic load.

Gradually, she was able to walk with assistance,

and then by herself but had a couple of falls. It

was odd at first. Kathy would walk around with her

head back, looking upward. As a result, she would

often run into furniture. This persisted for several

weeks and I wondered if she would walk normally

again.

 

The biggest concern of course was how I would get

Kathy off the prescription drugs without significant

bipolar behavior problems. To assist in doing this, I

put 2 drops of Lavender essential oil on each wrist

4 times a day. I also wanted to charge her system

with serotonin (the happy neurotransmitter). I did

this by using L-Tryptophan, B6, and Nicotinic Acid

mixed in applesauce about an hour before a meal,

4 times a day. L-Tryptophan has better absorption

in the presence of carbohydrates with no protein.

L-Tryptophan is the only amino acid that has a

pathway to serotonin, and ultimately the sleep

regulating hormone melatonin. If serotonin is shut

down with GABA enhancing medication, insomnia

can result. Normally the body uses L-Tryptophan to

create niacin before being used to create

serotonin. This is the reason that Nicotinic Acid is

also added to the L-Tryptophan mixture. My

understanding is that the form of niacin needed is

Nicotinic Acid and not Niacinamide. The body does

not recognize Niacinamide as a measure of

adequate Niacin stores. I considered using 5-HTP

instead of L-Tryptophan since it is further along

the path to the creation of serotonin. However, I

was concerned with the fact the body can not

regulate the amount of 5-HTP as it does with LTryptophan.

Thus, overdosing is possible, and is a

major risk for anyone using SSRI’s.

 

The transition off prescription drugs worked good

enough so that we had no major behavioral

problems. Fortunately, the medications that she

was taking were not as addictive as Clonazapam,

but withdrawal could still be a problem. Kathy was

irritable and agitated at times, but not aggressive.

To provide some relief, I had aides coming into our

home 4 days a week for 4 hours per day. I later

increases the aide times from 4 to 6 hours per day.

Fortunately, Kathy’s behavior was manageable and

the the aides were able to take care of her

without incident.

 

One of the most significant improvements in

Kathy’s behavior and sleep was the addition of

hemp-derived CBD oil. At this writing, this was a

legal supplement available at a local Health Food

Store and online. Whereas cannabis has both THC

oil (psychedelic action) and CBD oil, hemp

essentially has only CBD oil. However, the CBD oil

is the most effective for anxiety and many other

ailments. These oils are cannabinoids and there

are receptors for these throughout the body.

If there was a circle with quadrants marked off for

various moods, the effect of the CBD oil is to more

the dot toward the good mood.

 

I give Kathy 10mg of CBD oil 4 times a day. Usually

given at these times:

1. 7:00AM, Crushed banana, hemp oil, CBD oil, and

partial capsules of curcumin and multivitamin/

minerals.

2. 11:00AM, organic applesauce, and same as

above.

3. 3:00PM, organic applesauce, and same as above.

4. 7:00PM, ground almond butter, raw honey,

curcumin, and CBD oil.

The 10mg dosage just happened to be the amount

in the capsules that I bought. At this dosage, 4

times a day seemed to work ok. It is unlikely that

this is the optimum dosage. But, it is good enough

for now.

 

Although Kathy now typically sleeps an

uninterrupted 6 to 8 hours, there has been a

downside. Because she is sleeping more soundly,

sometimes she has urinary accidents, and some of

those times wetting the bed. Usually, when she

would only sleep 3 or 4 hours, I could usually catch

her and take her to the bathroom. However, I am

delighted that she sleeps longer, and hopefully the

nighttime incontinence will stop.

 

During the day, urinary incontinence is rarely a

problem. Kathy is toileted about every 3 hours.

That has worked out very well. More often than

not, Kathy will have a bowel movement along with

the urination. However, this is not always and is

the hardest to predict. Accidents do occasionally

happen. It is for these instances that a hot-water

vacuum cleaner comes in handy.

 

Kathy’s current status is:

 

1. Home and off prescription drugs for 18 months.

2. Not aggressive and has minor irritation typically

only when trying to get her in and out of the

shower.

3. Sleep is essentially normal, but she has some

issues with sleep apnea.

4. When in a deep sleep, sometimes has

incontinence.

5. Takes 10mg CBD oil 4 times a day.

6. Takes curcumin, multivitamin, and coconut,

hemp, and high DHA fish oils.

7. Must be toileted about every 3 hrs during the

day, and at night if possible. I don't see any

indication that she can be potty trained.

8. Fully mobile and we go for walks when weather

permits.

9. Interactive and knows who I am.

10. Sometimes has a sadness mood that I haven’t

found a solution to yet.

Kathy seems to be getting better neuron by

neuron. I read somewhere that it can take 10 years

to recover from benzodiazopines. Kathy has too

much damage to fully recover, but hopefully, at

some point we can go out and do things together

again.

 

Bottom Line

 

I believe Kathy has a chance for partial recovery

because her Dementia root causes of Prescription

Drugs and Gluten/Dairy have been addressed and

eliminated. Without addressing and correcting the

root causes, I doubt that recovery is possible with

supplements alone.

 

It is helpful in the process of determining possible

causes to have:

1.Food Intolerance Test. We chose the Mediator

Release Test (MRT), which measures the mediator

release of blood cells when exposed to various

foods and food chemicals. Reactive foods are

determined and can therefore be avoided to

reduce inflammation in the body.

2. Full Panel Blood Test and Hair Analysis. We had

to go to a Chiropractor to get this done. Family

Doctor blood tests are typically very limited. This

test should be completed to insure that there are

no nutritional deficiencies that may affect brain

function, and the hair analysis can identify the

presence of any elevated heavy metals.

3. Genetic Analysis. Sites like www.23andme.com

may be helpful in determining if genetics is the

underlying cause. Kathy has not had this test.

Finally, I continually try to avoid being blindsided

by other potential problems. I avoid the “Dirty

Dozen” vegetables and fruits that are laden with

toxic chemicals and only eat those if organic.

Although difficult, I also try to avoid GMO’s.

After the root cause of the Dementia has been

determined, it will likely require a major Lifestyle

Change. Such a change is very difficult and can

only be accomplished if those involved are “deadly

serious”.

 

Hoping for your success,

EdwardL

 

References:

1. Prescription Drug descriptions were obtained

from www.Drugs.com and www.rxlist.com.

2. Danger of long-term use of Clonazapam was

obtained from

www.clonazapamaddictionhelp.com.

3. Brain damage effects were obtained from

www.neuroskills.com.

[[Bm...]]

God bless you for being there for your wife. I am so happy that you figured this out for her and she is getting better.  So many have lost family and friends due to these medications and what they do to people. It's sad that the medical community can't figure this out.

[[Co...]]

Hi Richard,

 

If you post a ticket to the Contact the Team area about the book, I will review it for you. Generally speaking, what do not allow is the promotion of commercial products on the forum. On the face of it, your book does not qualify as commercial product.

 

Thanks.

[[Co...]]

Richard,

 

Is your last post to this thread your book?

[[Ed...]]

This is my last post. I did not include the Appendix from the book that has the details of the drug uses and their side effects. Didn't think it added enough to post for discussion.

 

EdwardL

[[So...]]

Your story touched my heart so much. And you have given so much inspiration to finish my taper of Lorazepam. My Pdoc also believes that long term lorazepam causes dementia and wants me off also. I am now learning how to use some amino acids, but still struggle with sleep issues; maybe I will get it right one day. Thanks for posting and making us aware of the potential dangers of benzo abuse. God bless you and your wife!

[[Be...]]

EdwardL, if you get on this forum again take some time to read about another bb on here who sounds alot like how your wife was acting.  Her username is Hope4us.  The docs took her blood and found a lot of autoantibodies in her system attacking her brain and CNS and causing inflammation.  She was diagnosed with Limbic Encephalitis and her SPECT scan showed too much blood flow to her limbic brain and not enough to her frontal and other lobes.  She also said she could only eat certain foods or she would feel terrible.  Did your wife have a SPECT scan done?  Did the doc do an ANA, anti-nuclear antibody, blood test to screen for autoantibodies?  There's also a book by Susan Callahan called Brain on Fire which talks about the autoantibodies that attacked her brain.  I hope she recovers. 

Thanks for posting this.  I believe I now have dementia from the benzo's.  I was just yesterday diagnosed by an MD doc with Memory Impairment and Amnesia.  I'm very afraid.  I've lost alot of my mental functioning since getting off the pills.  I used to be very capable and have six years of college.  Now I can't read books or cook from recipes, etc. and have trouble with many things.  I feel for your wife and can relate to her plight.  Head med drugs truly wreck the brain.

 

Here's the link to some of Hope4us's latest posts:

 

http://www.benzobuddies.org/forum/index.php?action=profile;area=showposts;u=3767