Wednesday, May 31, 2017

The continuing saga of Effexor withdrawal

Today is the third day I have been totally without any Effexor.  This is the day, according to my Internet research, that my system is free of any of the drugs that make up Effexor.   From what I have read, quitting Effexor and the withdrawal from that drug, is worse that the withdrawal from Heroine and Cocaine!  In any case, this morning, my blood pressure spiked.  It was 160/102.  The nurses took it manually not with the BP machine!!  They took it again three hours later and it was 158/94.  About four weeks ago, in my GP's office it was 120/68.

Now, we know LBD impacts the Autonomic portion of the brain.  Along with my increased BP, I was cold as an ice cube!  My skin was very cold to the touch, even the Nurse Practitioner commented on it.  She told me to go relax and I took a nap.  I woke up at 5 PM and felt better, although I have not had my BP checked since 1:30 PM..

After the 1:30 PM check, I had my wife call the Neurologist's office and ask for an appointment.  They fit me in tomorrow at 2 PM.  That indicates to me  they are concerned also.  We will see what comes from that, but one thing is for sure, I WILL NOT EVER take an anti-depressant!

Since I got up at 5 PM, I do feel better,  The ringing in my ears is now only in my left ear.  I still have a slight headache, but I have refused to take anything for the pain, since the beginning of the drawdown!  

I just looked over this post and I realized, while I have written it in one sitting, it is very disconnected. That is how my brain is working and that makes sense since Effexor rewires the brain and the withdrawal process tries to put the wires back on the original posts!!   A tough process, as I can testify.

I will keep you informed of the process in hopes that other can learn from my misery.

Monday, May 29, 2017

I feel like hammered dog Do Do!

I was feeling physically and mentally bad for quite some time.  Recently I decided to ask my Neurologist to get me off of Effexor.  I had become convinced that Effexor was no longer benefiting me.  I knew the withdrawal would be difficult, but that was an understatement.

As we started the decrease in the dosage from 225 mg, to 150 mg, to 75 mg, and now to zero, my issues have increased.  Now, I have been without Effexor for two days.  The headaches and head pressurization, whack became terrible when I coughed, sneezed, or tried to blow my nose, have passed.  I still suffer, (and suffer is the correct word)  from numerous Electric Zaps in my brain and ears that sound like gun shots!!  I also have extremely LOUD ringing in my ears.  Now, my ears have had ringing since I was on the USS Mullinnix  (DD 944) in 1969!!  But this makes it difficult for me to hear.  Since the Internet says all of the Effexor will be out of my system Wednesday night, I have hopes these issues will pass.  In a nutshell, I am in misery.

Add to that misery the fact that we have been busy with the High School graduation of our youngest Grandson and the departure of our middle grandson to Boot Camp, and some responsibilities here at Azalea Trace, and you can see that I have not been able to hibernate like I would like.

I think, based on my personal experience and research, that Effexor is  a adequate drug to treat depression in the beginning.  But, like all SSRI drugs, it requires increases in dosage.  And at some point, looses it's effectiveness.  Getting off Effexor is a long, painful process that has not yet subsided. I pray I will start getting back to something that feels like "Normal" soon!!

Sunday, May 28, 2017

There is a difference between pity and respect

For those of us who have any form of Dementia, in my case LBD, how others react to us has an impact on the Dementia patients emotional stability!   Trust me, it is true.  

Now, what do I mean.  From diagnosis to death, our cognitive and mental abilities change.   Some individuals progress quickly, but most of us progress in spits and spurts.   The challenge is to understand where the Dementia patient is cognitively and physically, and then fit your response to where the individual is.   I realize this is difficult for you who deal with us.  But, not paying attention to our condition causes us, the Dementia patient, further frustration!!

I have a Grand Daughter in Law that pays particular attention to my progress.  Of course, she is in Nursing School so she has a good insight into my disease.

The bottom line is, you cannot expect me, or any other Dementia patient to do what they used to do, regardless of how good you think they are doing.  We do not function like we used too or how we would like to!   We will try to meet your expectations, probably to our own detriment, until we are so bad we cannot do anything.

There comes a time when the Dementia patient, including me, run up against their disease and finally stop trying to meet the expectations of others and succumb to the ravings of our disease.  When that time comes, and it has, we need your respect, help, and understanding.  These are not pity.  The simply are the way to help us be part of life while dealing with our disease.


Friday, May 26, 2017

Trying to sleep, but my life keeps me awake

OK, I admit that the withdrawal form Effexor is difficult.  And going to sleep is very difficult and I have had to stay up latter than I want to, to get completely exhausted so I can finally go to sleep.   And during that awake time, m mind wanders back through my life.  The things I spent the majority of my life doing, and how useless it all seems to be to the world, my fellow citizens, and the people I live with.  Yes, when I was living the life of a career Enlisted man was exciting, dangerous, wild, and crazy.  And, all of us who served together through the Cold War, Vietnam, Lebanon, Libya, Central America, Iran/Iraq War, and various other then Classified operations believed that what we were doing was important.  Now, I am not sure my 66 years were well spent.

The prospect of death changes one's view of their life.  At least it has mine.  No one really, truly cares, or is interested in what I did.  The people I live with don't even believe I am telling the truth when I try to explain what I did.  To them, if I did not fly a fighter, I was nothing but a low priced enlisted slave.  What I did  had no value.  To be discarded is the worst fate of all.

Thursday, May 25, 2017

Living in a community I don't fit in.

The community I live in is a wonderful, luxurious, community.   I have written about this before.  But, the vast majority of the people that live here are over 80.  The community caters to people of that generation.  Nothing in the way of entertainment, eating venues, or care are modern, up to date, or state of the art.  There is an expansion of the Assisted Living and Skilled Care areas that is planned to start this year.  But, the first shovel of dirt has not been turned and it is almost June.  And while the plan for the extensions of these communities has a publicized Memory Support community, there is no information about these units or when they will be available.  With new Memory Support communities opening in Pensacola, I wonder if we made the right decision, based on the attitude here.

The present community has little capability to deal with Dementia patients.  My efforts to start a Memory Support group for those of us with Dementia was originally met with a brick wall from management and the nursing staff.  Persistence got the group started and now we are getting marginal, cursory support from management and the nursing staff.  But there is still NO publicity in any calendar or in the comment news ether about the group's meetings.  

Another issues is, since the average age is so high and so many of these folks still cling to Independent Living Apartments, there is little opportunity for younger Seniors to move in.   Many of these folks employ personal aids to take care of them in Independent Living apartments.  Sort of a personal, assisted living community!  That coupled with the fact that Azalea Trace is knows as a "Nursing Home" instead of a CCRC, does not help with the recruiting of younger residents.  But the "Nursing Home" reputation is well earned and deserved.

For instance, many people that live in Independent Living apartments cannot walk down stairs, use rotators or electric carts to move around, and if a FIRE broke out on a floor above the first floor, would be TRAPPED in their apartments, doomed to die.

Another issue for me is, the over 80 club that runs this place is also a bunch of retired Military Officers, most of which were reserves that never did anything, and all of them think Enlisted Personnel are personal servants who have no value and did nothing but scrub pots and clean toilets.  Trust me, you can't swing a Cat and not hit an O-6 around here!  (And I bet you do not know what the phrase "Swing a Cat" means!  No one here does, trust me.)

Maybe I am just having a difficult day.  I do have friends here, but no one that I am considered equal too.  I am always the "Burdened" individual in any conversation or situation.  I do many things to help the community including filling in for the Staff Chaplain for services and last year the Christmas Program.

Again, maybe this will pass, when I am 80!  The truth be told, I will be surprised if I make it to 67.

A bad day

Yesterday, I felt on top of the world.  The withdrawal symptoms had subsided and I felt the best I had in a long time.  Today, I have been in the doldrums.  The withdrawal symptoms are back and I am very depressed.  My Wife and I were discussing this tonight and she commented that yesterday was the regular meeting with my Dementia/Memory Support Group.

She is right.  That group helps me be me!  I am with others that are walking the same journey I am. We are related by diseases.  We support each other.  We are all very open with each other because we are comfortable and we trust each other.   Meeting with those people is good for me!

This support my belief that living in a community of that are on the same journey is good for us.  If I look back at my Navy career, I was always very comfortable and happy on ship with other Navy professionals.  We were experiencing the same things, helping each other, supporting each other, everyday.

Oh well.  I can look forward to next week's meeting.

Wednesday, May 24, 2017

Quitting Effexor. Progress report

I have been in the process of getting off Effexor.  I have taken Effexor for a long time.  How long, I cannot say.  I was taking 225mg every evening.  But, recently, I decided it was not helping, and since I am on a charge to get rid of any drugs that do not work, out it goes!  However, I have discovered that getting OFF of Effexor is much more difficult than getting ON Effexor!

The Neurologist, gave me a plan t taper off of the drug.  I dropped to 150mg for a week, and now 75mg for a week, and then NONE!  The first ten days was TERRIBLE!!  The withdrawal symptoms included a pressurized feeling in my head that was horrific.  But today is the 11 day of the draw down and I feel almost normal!  I have more energy and I have some zip in my step.  I do not see any increase in my depression so my estimation that the drug was not doing me any good may have been correct.  We will save the final verdict until I am completely off of Effexor for a week.

Do anti-depression drugs work?  I think so and some people need them.  I may have needed them in the beginning, but I do not want to take them anymore.  I do have a prescription for a different anti-depressant if I need it, but my hope are that I can stay away from that type of drug.   We will see. 

Our Memory Support Group

We started a Memory Support Group here at Azalea Trace based on other disease support groups, specifically directed at those with Memory issues.  The group has grown in participation and in support and is now ready to expand again.  We now have a  professional facilitator from Covenant Care that meets with us once a month.   We have an association with Sacred Heart Neurological Group that provides a Doctor to meet with us once a quarter.  We have established a library of Dementia Pamphlets from the National Institute of Health and some books like "The 36 Hour Day".  

But the best part of the group is the trust and comeradere of the group members.   We help each other!   It is great to be part of a comfortable, accepting, community of people that are going through many of the same issues.   Being able to openly discuss personal issues, knowing no one will judge you for those issues, is reassuring and enabling!


Sunday, May 21, 2017

Difficulty expressing myself

I have started  two or three posts, only to delete them because I CANNOT express myself.  Things start out fine, and then, I am at a loss for words.  I was trying to go to sleep tonight, but I wanted to post this, to let you know why I a experiencing.

I am down to one Effexor 75mg, starting today and things are going moderately well.  The first week was the most difficult.  That was the week I went from three 75mg pills to two.  But, again, my memory of this entire process is fuzzy.  I have only been on this draw down one week!  I am confused.
The last week seemed like two weeks.  So, I guess the first part of the week was bad and the end of the month was better.  Tonight was the first one pill night.  We will see how this goes.

When I try to go to sleep, I get more agitated and more negative in my thoughts.  This is probably related to my med changes.  We will see.

On a positive note, I was blessed with the opportunity to perform the marriage of our Middle Grandson and his beautiful new Wife.  The remind Linda and I of us when we were first married.  It was a wonderful ceremony and reception and although I was very tired after the event, I was very happy I could be there and perform the marriage.  Again, it was a blessing for me.

Our youngest Grandson graduates from High School this week.  Another blessing.

I did some research and the National Institute of Health has a wonderful pamphlet on Lewy Body Dementia.  It is free and can be ordered online from NIH.  They have others relating to Dementia that also have value to the LBD caregiver.  Check them out.

I also did some research on my issues caused by the impact of LBD on the Autonomic portion of my brain.  I have mentioned before that I have had sexual performance issues.  I am now completely impotent.  Nothing works!  And it is because of the autonomic issues related to LBD.  It does not make me feel better about this issue, but it does help me understand it better.   I ma also having increasing difficulties swelling.  I choke and cough often after swallowing any liquid.   This is an autonomic issue too, along with my issues with fluctuating BP and body temperature.  All signs this disease is getting worse.

There, I did it.  Not pretty, not connected, but you know what I am going through.  That was always my goal.  More later.

Friday, May 12, 2017

Med update

I believe I posted about stopping Clonozipan.  I did that without consulting my Neurologist.  Since I was on that drug for such a short time, I felt comfortable with that and the doctor knows now and agreed with our reasoning.  I also wanted to get off of Effexor.   The neurologist has agreed to that move and gave me a plan to slowly get off of it.  I have been on Effexor for a long time and it has stopped working if it ever worked at all.

I am on a quest to delete any drugs from my treatment that we believe, do not help me.   I see no reason to take drugs that have serious side effects,  if they do not help me.

The Neurologist cautioned us that getting off Effexor may have it's own side effects.  Like more memory loss!   Also, more night agitation and increased anger issues!  Linda will have to keep track of my progress and the Neurologist told her to call if I have any negative changes.  We will see.

Thoughts of the past

This morning, I woke up thinking about a Navy Shipmate named Robert "Red" Mills.  He and I went to MK 42 "C" School at Great Lakes in 1970-71.   He was a First Class Gunner's Mate who worked ASROC all his career and I was a GMG3 who worked MK 42 gun mounts for two years.  He was the Class Leader and he took me under his wing.  We watched Monday Night Football with his family in the "Flintstone" Navy Housing at SSC Great Lakes.   They had one of those "Dime Store" turtles that survived!!   That turtle was HUGE!!

In any case, when we graduated he went to the USS Stoddart (DDG 22) and I went to the USS Stein (DE 1065).   Red was killed during Combat Actions against the North Vietnamese in 1972.  They had a Misfire, Foul Bore, that they had difficulty clearing and the ammunition cooked off in the gun bore, 22 minutes into the foul bore declaration, killing Red and another three other men.  His death overwhelmed me then and still haunts me today.   Red died 45 years ago!  Yet now, I cannot get Red out of my mind.

As a career Gunner's Mate, I had a number of "Foul Bore" situations that should have ended the same way!  Only God knows why they did not.

I found Red's name on the Virtual Vietnam Wall and some comments left on the names of the other three that died because of that incident.

But now, at the end of my life, the circumstances of Red's death are forefront in my mind.   Why, I do not know.  Maybe I will see Red in Heaven.  

Tuesday, May 9, 2017


I have not posted since Marcel's passing.  I miss him, tell him it's time to go to bed, and have seen him walking around the apartment a number of times.    His death has impacted me and possibly impacted the progression of my LBD.   Why do I say that?  I wrote about the addition of Clonizapan.  I do not remember how long I took it before the positive effects of the medicine decreased.  But, I then called the Neurologist and asked for an increase in the amount of the drug.  She doubled it and it helped for a couple of days and then stopped working all together.  So, I stopped taking it about 8 days ago.

Coupled with this, I have become more emotional, agitated, and angry.  I stay in our apartment the vast majority of the time and do not socialize very much at all.   I do enjoy watching the squirrels and birds outside of our patio doors.  It is the best show for me to watch.  However, it stops at dusk.

I had a difficult birthday as things did not turn out like we had planned.  So, we stayed in and did nothing.  That depressed me even more.

I have talked to my Wife about these issues, and also have opened up about some issues that have impacted me from my past.   Talking "Navy" is one thing that unwinds me.  But issues that date all the way back to my birth still haunt me.

The bottom line is, I am NOT doing well at all.  The LBD has progressed.  Even my stability walking has gotten worse.  These issues have caused us to cancel our trip back to Virginia since riding in the car is a big agitation for me also!!  

I have always said I will continue to write this Blog until I can no longer do it.   And I will, but I believe I will be posting less, just because I have difficulty expressing what is happening inside of my brain.

More as I can..