Thursday, August 31, 2017

A much anticipated visit!

My Sister, from Cleveland, came for a short visit this week thanks to Her son and Daughter's generous gift of a flight to Pensacola!  It was  Wonderful to see her.  We went to Cleveland last year but she was in the Hospital the entire time.  Since then, she has miraculously recovered!  She looks 20 years younger and much healthier.   We had a great visit, including a big dinner with our Son and His family.  What a great night.

She departed very early this morning and I took a nap when we returned to our apartment.  I am completely exhausted!   Since I am so dependent on my routine, as most Dementia patients are, any disruption is difficult.  Also, you may understand the concept of "Show Time" in LBD patients.  Well, I stayed in "Showtime" for four days!   That wore me out.

Still, I am so happy she came to visit and I would rather have her here for another four days regardless of how tired it makes me.

So, I will recover, slowly.  But I will miss her company for a long time.

Another note;  My MRA is final scheduled for 12 September.  We will see what that reveals, if anything.

Wednesday, August 23, 2017

More MRA info

The Internet is a wonderful source of information.  I did some research and depending on the type of damage in my rain, if there is any at all, there is an option of using a stint, much like they do for heart blockages.  But, in the brain aneurysm case, the stint strengthens the blood vessel.  Of course, there is also the option for brain surgery that requires opening the skull.  But that seems to be for the occurrence of bursting of the aneurysm.   So, there are options, again based on the severity of the damage.  And again, there may not be any damage yet!  We will just have to wait and see.

What will we do if the MRA show problems?

One of our readers, Ms. D, asked me what I would do if the MRA show an issues in my brain.  The honest answer to her question is; "I don't know."   It all depends on what is wrong and what the odds of of a successful repair.  Of course, there is the issue of General Anesthesia as it impacts LBD patients.   To refresh your minds, it is recommended that LBD patients refrain from surgeries that require General Anesthesia because in more than 60% of the cases, it accelerates the Dementia.  In more common terms, I was told I would not wake up in the same time zone! 

So, the answer to Ms. D's question is;  "We will wait and see."  I have given this much thought since the issues first started.   When I am alone, in bed, I have ran through all of the possibilities.  But, there are still too many unknowns for me to make a definitive decision.

Tuesday, August 22, 2017

You Don't Have Dementia!!!

I have been told so many times that I do not have Lewy Body Dementia that it has become "Fighting Words" for me!   Today I went to a Navy Cryptology Museum here in Pensacola with another resident from where I live.  He asked me to go because he needed my Military ID care for access to the base!  He was honest about that.  He drove, sort of   Honest, if he can drive a car on the road, I can drive a car in a NASCAR race!!

During the ride home, he told me I did not have Dementia!   How would he know, he was a Cryptologist!?  But, he is old and I let it pass.  But, his comment made me do some research on Dementia.  One of the symptoms of Dementia patients, according to the Alzheimer's Association, is that the person with Dementia, lives in the past they are comfortable with.  In other words, that comfortable past is what they talk about and think about most of the time.    I had just spent two hours talking about my Navy experiences!!  Before that, I spent 90 minutes on the telephone with my BEST Friend, another retired Navy Chief Gunner's Mate,  talking about our Navy experience, old Shipmates, and Gun Mounts!!  Get the picture?  Not to mention that every exciting event in my life, happened in or was related to the Navy.  So naturally, I talk about them anytime I get a chance!

My dreams, what I think about before I go to sleep, what I think about when I am awake, is Navy!!  I am completely unattached to today's world, with the exception to what is occurring to our Navy ships. But, I apply my past knowledge to their plight!

I have most of the other symptoms, but this one is something anyone who knows anything about Dementia should recognize!  Especially someone who spent two hours alone with me!

As Jackie Gleason often said;  "One of these days, POW, right in the kisser!"

Monday, August 21, 2017

Latest test

With the head pain issues and high BP, my neurologist has decided to order a MRA of my brain.  They are worried about possible strokes and the head pains concentrated in the left side of my head as I wrote about before, have them worried.  The MRA test that is ordered looks at the blood vessels in my brain to see if they are clogged or bulging.  Since the headaches have not decreased, I believe this is a good course of action.  I will keep you informed.

Friday, August 18, 2017

How things are progressing

I am BLESSED  to have a Neurologist's Office that is proactive and very caring.  My Neurologist is young and embraces technology.  They have an email portal that enables me to have near realtime communications with the staff.  Since I went back on Effexor, and even during the time I was off Effexor, I kept my Doctors informed of how I was doing and the issues I was having.

I told you before that during the time I was off Effexor, my BP spiked and caused me headaches, dizziness, and other issues like muffled hearing.  Well, the BP is lower but not where it was before I went off the mega dose of Effexor.  That is because of the autonomic issues in my brain due to LBD.  However, my Neurologist is worried that the earaches that increase when I sneeze, cough, exert myself, and get my head lower than my waist, may be a symptom of something going wrong in my brain, de to the increased BP.  So, they have me monitoring my BP and headache location and intensity and then reporting it, daily, on the email portal!!   Not bad.

The head pain is located around my left eye, left forehead area and radiates behind my left ear.  It intensifies when I cough, sneeze, exert myself, or get my head lower than my waist.  Why, I do not know.  However, the neurologist told me in an email she was probably going to do another brain scan and possible put me on a mild BP med.  Makes sense to me.  The good part is, I do not have to go into the office to get this information!!  Isn't technology wonderful!!

Thursday, August 17, 2017

Back on Effexor; Update two

It has been a couple of weeks since I went back to taking a low dose of Effexor XR.  Many of the negative issues are gone.  But the headaches that come on when I sneeze, cough, or bend down with my head lower than my body are still there.  Those headaches are sudden and sharp, located in my forehead area and behind my left eye.   My BP has dropped to 135/85 when I am sitting in the chair, an improvement over the 160/110 readings before I went back on Effexor XR.   This issue is directly related to the Autonomic Dysfunction issues caused by LBD.  I am a text book case!!  The Neurologist is concerned about them and is considering placing me on a BP med and ordering another, more specific, brain scan.  I agree with both of these approaches.

I am also experiencing agitation, anger, and angry outbursts, but not as severe as I was before I went back on Effexor XR.   This is an balancing act.  Getting me back in physical and emotional balance while trying to retain some emotional release.  I do not envy my neurologist!

Wednesday, August 9, 2017

A pending trip

Our Middle Grandson is in Army Boot Camp at Fort Benning Georgia.  This weekend is Family Weekend.   He is close to graduation and I guess the Army does things different than we did in the Navy in 1969!  We are going up, alone with His Wife, and Parents.  It is only a 3 hour drive, so that part is good.  But my Wife's preparations for any trip, be it a week or a month, is a painful litany of lists, walking back and forth, looking in every nook and cranny in the apartment, and asking me a hundred time what outfit she should wear.   She has always been a very nervous traveler.  And it has always bothered me, but no, with LBD, her gyrations now drive me crazy!  She has to pack enough for a month in the arctic!   I take two pair of skivvies and a tooth brush!  But the most disturbing part for me is it has lasted ALL day!!  And now into the night, my most difficult time.   I have tole her this many times. to no avail.  She does what she does!!  She wants to be equipped for any happenstance!  Heck, I never took as much stuff on an 8 month deployment as she does for a two day trip!!

I hate travel now.  I never really liked travel, but now it is a bridge too far and the preparation is too painful.   But, once there, I hope we will have a good and interesting time.   Until then, I have to endure the skittering around and the constant quest to take more things!

Tuesday, August 8, 2017

Neurologist visit today

We met with my Neurologist today.  She is a caring, professional, medical professional that I respect and trust.  We discussed the unfortunate Effexor experiment and how I am doing now that I am back on a much smaller dosage of Effexor.  I AM doing better but she reserved the right to increase my dosage slowly and cautiously as we see how I progress.  My BP was down, now 130/80.  Much better than 160/110!!   I am also becoming less agitated and grumpy.  All good things.  I am having less issues regulating my body temperature and  I am having less issues regulating my bowels.  SO, things are getting better.

We also discussed the brain CT scan that was done a few months ago.  She was able to get the previous scans from my Virginia Beach Neurologist.  The comparison shows some deterioration, but not major deterioration.   The "Black Holes" are still there and increasing some.  Again, that is to be expected.

It was a production, informative, visit.  I am feeling better and I realize I was foolish to try to get completely off Effexor.  I promise I will never try to play Doctor again!  Trust me, the three months of misery taught me a valuable, painful, lesson!!

Sunday, August 6, 2017

Back On Effexor; Status Update

I have been back on Effexor (37 mg) for three days.  The Brain Zapping has stopped.  That is a wonderful thing!!  I have not had my BP taken, so nothing to report there except my ears are not as clogged with pressure.  So, that is positive. I still have headaches but not as severe and they go away if I lay down.  I am still grumpy during the day, but after I tale my Effexor at night, I get more mellow.  All positive so far.   I have an appointment with the Neurologist this Tuesday, so we will see what that brings.  More later.

Wednesday, August 2, 2017

Back On Effexor

As I wrote before, the grand experiment of stopping Effexor has come to an end, today.  I went through a controlled draw down of Effexor starting 14 May.  I was on 225 mg of Effexor, a very high dosage according to my Neurologist and what I have researched.  The plan was to reduce the dosage to zero over 3 weeks.   May 28 was my last day on Effexor.  The side effects of stopping this drug have been terrible as I have written.   Yes, I did regain my ability to express my emotions.  That's has been a good and bad issue.  I also regained my sexual functions.  But, the autonomic portion of my brain, which had been diagnosed as dysfunctional, went completely wacky.   My BP spiked in the second week of the draw down causing headaches, ear ringing, loss of hearing, and severe dizziness.  I also experienced difficulty regulating my body temperature.

So today, I took my first Effexor pill in 10 weeks.  I am on 37 mg, a far cry from 270 mg.  The goal is to return my BP and other Autonomic functions to as close to normal as possible.  If I have not written this before, Effexor has been found to have a positive impact on Autonomic Dysfunction.  That discovery was a surprise to my Neurologist and me.

My hope is that I will retain some emotional release and some sexual function along with regulating the Autonomic Dysfunctional issues.  Again, we will see.  I also hope the Brain Zapping will subside! While it is less than the beginning of the draw down, it is still there, still intense, and still annoying.

So, the gran experiment is over.  I gave in or gave up.  I cannot defeat Effexor or live with the damage it caused me.  I wish I could tell the Neurologist that increased my dosage to the dangerous levels, what I think of him.  But, discretion may be the better part of valor.

I will lee you informed.