The Drug
Amitriptyline
Is my drug
Not really crystalline
I think like a slug
So very very dragging
So very very hampered
So very very lagging
So very very hammered
I can not think
I can not write
I can not read
I can not understand
I can walk
I can talk
I can exercise
I can drive
A trade off
Lose the crazy woes
Do not unbelieve or scoff
Or live in the shadows
Easier to be alone
Easier to hideaway
Easier to be my own
Easier to live that way
Live in solitary
Or to fight the darkness
I am my adversary
What a starkness
To live in society
Amitriptyline is required
To end anxiety
A new life is desired
Slow with limited derailments
Sleep too much
Drugged but no aliments
Amitriptyline is a crutch
Last time 10 mg
Then 20 and 30 mg
Then 40 to 70 mg
All the way to 80 mg
In the end
It began shirking
No more dividends
And it quit working
Better for awhile
To have some assistance
A pleasant smile
And a healthy existence
I heard this word a bunch with Dr. Andrews. I knew what it meant, but I needed to make sure that I understood what Dr. Andrews was talking about in regards to my disorder – Functional Neurological Disorder (FND).
According to the Learners Dictionary, over stimulation is to cause (someone or something) to become too active or excited: to stimulate (someone or something) too much.
What was overstimulating for me? Really, there are so many things which can cause me to get active or excited:
Pretty Girl (Smart Girl)
Smart Girl’s child
Playing with children
Laughter
My kids
Good book
Bicycling
Yoga
Playing in pool
Going to beach
Good sermon
Share the gospel
Checklist
Meet new people
Concerts
Yardwork
Work
Running a business
Accomplishment
Life
Travel
The list can go on and on, but the definition mentions “too” or “too much.” Do all these things over stimulate me?
I have always been excitable and active. I could handle many things at one time. I could juggle many activities. I liked to move, to do, to progress, to succeed, and to accomplish. I had a checklist, and I wanted to check things off my list. I felt good when I make that checkmark
Once again, checking a checklist is not going to make me so overstimulated that I can not function, or I lose control. Or can it?
According to Dr. Andrews, it is not the checklist; it is the activities or the consequences of overdoing the activities. If I do too much, then it can overstimulate me and shut me down, especially if I am fatigued or experiencing slight episodes of the disorder. My triggers can activate, and they can be much worse.
What triggers FND?
Fatigue
Stress
Complicated problems
Doing too many things at one time
Work to long
Work too hard
Unreal expectations
Unsolvable problems
Irritants
Controversy
Pain
Illness
Disagreements
Arguments
What over stimulants trigger me?
Sunlight
Pain
Disagreements
Complicated Instructions
Tired
Stress – mental, physical, emotional
Negotiations
Complicated and long verbal conversations
Long-drawn out stories
Overindulge in exercise or work
Unnecessary questions
Lies
Selective memories
Illogical jibberish
How do you live in society if these things overstimulate you where you shut down or go into a rage?
Learn triggers
Reduce triggers
Avoid triggers
Simplify life
Get plenty of sleep
Stop doing too much
Learn how to rest triggers
Quit judging
Learn CBT
Learn DBT
Be grateful
Get back on Amitriptyline which has worked the best over last six years
Yes, I think some of what I write is redundant. I need to get a better grip on what is happening to me and how I need to proceed.
Does anyone know who teaches Dialectical Behavior Therapy (DBT)? West Tennessee, Memphis, or Nashville?
I was diagnosed with Functional Neurological Disorder (FND) on Wednesday on July 8th. According to National Organization for Rare Diseases, FND is a medical condition in which there is a problem with the functioning of the nervous system and how the brain and body sends and/or receives signals, rather than a structural disease process such as multiple sclerosis, Parkinson or stroke.” This disorder is an improvement over my self diagnosed diseases and disorders. I am happy that I have it than the other alternatives.
For six years, I have struggled with a many weird issues which came and went at random. These issues are unpredictable and debilitating. I struggled with the unknown. When no one tells you, what is wrong with you, then you begin to wander through the possibilities. I found and latched on to Progressive Supranuclear Palsy (PSP) two years ago. I had 8 of 12 symptoms, and it was the only disease or disorder that described me. The doctors did not think I had it because I was too strong, but what were the alternatives? I sank into depression and anxiety.
I ran the gambit of possibilities. How long do I last? Will it be a painful death? Will I make it three years? Will I suffer? I did not believe the doctors who said you are too strong because they were not giving me any alternatives. These were no solutions; just wait until it manifests itself.
I did not want to wait until it manifests itself. I wanted answers now. Who wants to wait until it manifests itself, and then they say, “Oh, you had PSP sorry. Now, you will die in a year or 2.” To me, that was pure craziness!
A few weeks ago, Cynthia (Smart Girl) found Functional Neurological Disorder (FND), and we studied upon it on various websites. I got an appointment with a doctor in Little Rock who understood FND. I found him on FNDhope.org. I made an appointment with Dr. Andrews.
I visited Dr. Andrews on Wednesday, July 8th. Dr. Andrews and I talked for an hour. He says, yes, you have Functional Neurological Disorder, and Dr. Andrews believes my right leg trauma with knee replacement, hip surgery, and replacement and blood clots with the extreme pain made FND activate. I was delighted when he said you are too strong for PSP, and since Mayo and Vanderbilt have eliminated all possible physical symptoms, it has to be FND. I went from a disorder with a death sentence to a disorder you can learn to live with through training.
You must learn what triggers your disorder or attacks so you can react to the triggers better. Also, you need to learn how to reset the triggers to get back to normal as quickly as possible. Here is a laundry list of things that I need to do to help myself:
• Keep exercising • Keep doing yoga • Keep eating a healthy diet • Learn Cognitive Behavioral Therapy (CBT) • Learn Dialectical Behavioral Therapy (DBT) • Simplify your life • Keep it simple • Learn triggers • Avoid triggers • Minimize triggers • Learn resets – stutter or unable to speak than sing a song and can not walk forwards then walk backwards • Beware if you disliked something before disorder, then you hate it now.
Here are some examples of what I disliked before, and I now hate:
• I was not too fond of crowds, so crowds activate my symptoms. • I did not like liars. Now, I hate liars. • I did not like injustice? I despise injustice. • I was intolerant of emotional hot-air rhetoric. I wouldn’t say I like rhetoric. • I do not like drawn-out stories. Now, I have no patience for a long story. • I do not enjoy genealogy (stuff with past). Wow, I guess it is a huge trigger.
These triggers can set me off to be rude, angry, or go to rage. Big problem!! I have always been feisty, argumentative, fiery, but it is a new uncontrollable level.
I have to learn to deactivate these triggers and not to let them bother me. I hope CBT and DBT give me the tools to do that.
Does anyone know any resets for triggers or a good list of reboots like singing a song for stutter and walk backwards to reset unable to step forward?
Functional Neurological Disorder or Conversion Disorder
I have battled a health issue for six years with no diagnosis, just endless symptoms, and doctor visits. The symptoms are debilitating, but the worse part is they come and go like the wind. One minute I feel good and the next minute I feel awful. One-minute functioning and the next minute dysfunctioning. I minute normal and the next abnormal.
The doctor visits were intense. I saw over 45 doctors in the past six years. The doctors would talk to you and do all types of tests – brain tests, MRI’s, MRA”s inner ear tests, heart, lungs, knee and hip specialist, blood clot specialist, blood pressure, toxicology, EEG’s, EMG’s, anxiety exams, depression exams, etc. The doctors were from the best medical centers in the world – Mayo Clinic and Vanderbilt. They did not find anything wrong with me except anxiety and depression. All you need is a pill, and you will be better. The best line from the doctors was just wait until it manifests itself. Really, I am trying to live!
Of course, I am going to be anxious and depressed. Duh! I am falling backwards thousands of times and bless the Lord that I have hit the ground only ten times. I lose words, and I can not say what is on my mind. The sunlight shuts me down, making me retreat into myself. I close my eyes, and I cannot function. I fall left to right wobbling. These are daily occurrences. There are so many other symptoms that happen sporadically. I find it amusing the funny situations that I have experienced in the past six years.
For two years, the only disease that was close to my symptoms was Progressive Supranuclear Palsy (PSP). This is an undiagnosed disease that eats away at you until you die. No one says you have it until the end when you cannot walk, talk, or eat. They autopsy you to see your tau proteins bunched up on your brain. Yes, you had PSP. Wow! How nice! My adamant supporter, Smart Girl did not think I had it because I was not getting weaker physically, and I did not have a Parkinsonian look, which is present in PSP. When this is the only disease that fits all your symptoms, it is hard not to latch on to this disease. Gosh, I want to put a name to it. I want to know what is wrong with me. I want to be in control. Control of what? PSP is a killer. PSP is an ugly death. PSP is not merciful. PSP is painful. PSP is torture.
Last week (June 2020), my adamant supporter or I call her Smart Girl located Functional Neurological Disorder. What is that? I have never heard of that disorder. I do not remember any doctor, including many neurologists, mention it to me. They never even suggested it was a possibility.
What is Functional Neurological Disorder?
Functional neurological disorder (FND) is a medical condition in which there is a problem with the functioning of the nervous system and how the brain and body sends and/or receives signals, rather than a structural disease process such as multiple sclerosis or stroke.
FND patients can experience a wide range and combination of symptoms that are physical, sensory and/or cognitive. The most common include:
Motor dysfunction • Functional limb weakness/paralysis • Functional movement disorders; including tremor, spasms (dystonia), jerky movements (myoclonus) and problems walking (gait disorder) • Functional speech symptoms; including whispering speech (dysphonia), slurred or stuttering speech
Sensory dysfunction • Functional sensory disturbance includes altered sensation; e.g. numbness, tingling or pain in the face, torso or limbs. This often occurs on one side of the body • Functional visual symptoms; including loss of vision or double vision
Episodes of altered awareness • Dissociative (non-epileptic) seizures, blackouts and faints: these symptoms can overlap and can look like epileptic seizures or faints (syncope)
Symptoms often fluctuate and may vary from day to day or be present all the time. Some patients with FND may experience substantial or even complete remission followed by sudden relapses of symptoms.
Other physical and psychological symptoms are commonly experienced by patients with FND but may not be present. These include: chronic pains, fatigue, sleep problems, memory symptoms, bowel and bladder symptoms, anxiety and depression.
Yes, I have many of those symptoms, and they come and go. Is this a real disorder or just a junk drawer for people who are messed up, but there is no diagnosis for me yet? I do not care. I rather think I have FND (live) versus PSP (die).
Is there a treatment?
Yes, I have new doctors to see and new treatments to try – CBT and ACT. I must be more self-aware of what triggers my symptoms. I must learn techniques to reset myself once symptoms start. My favorite is when I cannot pronounce words or get them out of my mouth then sing a song. I sing “Everyday with Jesus,” and then I can pronounce the word or get it out of my mouth. How wonderful is that! In one week, we have found one reset. How exciting. Now, I am looking for triggers to stop symptoms before they happen and for reset techniques to get me back to normal as soon as possible.
Praise
I praise God for the blessing in my life. In the past two weeks, God put Smart Girl in my life. She found this disorder, she made me aware of the disorder, and she helped me with the first symptom reset. Two, the Lord gave me hope and endurance. The Lord gave me the will to enjoy each day and to live. Thank you, God!
