These three videos which explain trigeminal + occipital neuralgia and show the pain it causes a young man. Then the surgery that set him free.
If you can’t see video #2 please watch on youtube https://www.youtube.com/watch?v=T2TvRL8BXpk
My Dad passed away 10 years ago. I found a handwritten draft from him that he had written in 1981 with the desire that I’d send this story to Reader’s Digest for publication in the short/true/funny section of their magazine. I’m not sure if I tried sending it to them or not; so I’m posting it to my blog instead.
Only issue is- If you are under 35 you may not understand. This was written about a time around 1970 when the internet was not available for household communication. Our telephones were attached via a phone line to our homes. Most homes only had one line and often only one phone. Caller ID and Call waiting weren’t invented yet.
My Father tried to write this account from my perspective:
“When I was a very young teenager, my parents complained that I had a telephone growing out my my ear. Frequently my Father would call home in the late afternoon in order to tell my Mother of plans for the evening or changes in the usual schedule. Usually our phone was busy and this was a source of constant and utter frustration for my dear old man.
On Christmas of that year my parents surprised me with MY VERY OWN TELEPHONE!
Shortly thereafter, my Father was again trying to reach my Mother form the office and their line was busy!
After several attempts, Dad tried calling me on my new phone. I ran to my room to answer the phone and my Father said “Darling you couldn’t possibly be on our telephone after putting in your very own private line?”
I said “Why sure Dad, I didn’t want to tie up my own in case someone tries to call me!’
I previously shared our unusual story in this post:
Our love has changed over time. Aging, dealing with chronic illness *my multiple sclerosis*, and heartbreakingly watching our youngest son deteriorate from early onset parkinson’s disease has challenged us in ways we never anticipated.
Married at 15 & 17 years old statistics for success were against us. Living with chronic illness increases divorce rates by 75%. The New York Times recently reported that divorces after the age of 50 have doubled since the 1990s.
So here we are ages 56 and 58, having celebrated our 40th anniversary in June and I’m going to use Valentine’s Day 2014 to make these proclamations:
* Our love and commitment for one another has increased greatly through time.
* Our admiration towards each other has grown.
* The hardships we’ve endured have strengthened us.
* Every moment we share together has become precious.
* Our friendship has grown deeper and more meaningful.
* Our faith in God continues to grow.
* Contentment with joy is what we have chosen no matter our circumstances.
* We both agree that we would indeed choose each other all over again.
Tony called me this morning in tears! He said he had a terrible night. He may have fallen 20+ times. Finally he threw a fit and fell and broke his glasses. He’s beside himself. Frustrated, feels like giving up. He says that he feels like he is going crazy. He doesn’t have the insurance to get counseling which he says he desperately needs. He also needs some type of physical therapy and can’t afford to get this. He is too soon for medicare and makes just over the amount to get medicaid benefits.
He says he feels like he is in prison in his own home. When he has these bad spells he falls constantly. And when he is having a bad time he is unable to drive.
He feels his whole life has been taken from him and he can’t take it any longer.
Young onset Parkinson’s disease is just terrible. I know that son Tony hasn’t hardly been out of his house since Christmas. He feels he is loosing his mind. He’s had so many bad nights when he is up with leg cramps and sadly the only way he can tolerate these cramps is to stand. Standing when you are exhausted is like water torture. And as I’ve mentioned before he has issues with night terrors (part of the Parkinson’s or from some of the medications) He is sure people are in his house and he throws things or hits or kicks holes in the walls while screaming.
I feel so bad for him. My Mother’s heart wants to hold him and tell him it will be okay. But will it?
His wife is diligently trying to maintain their home and two school age kids. She lives sleep deprived and I am sure she is beside herself with frustration too.
This is a post in desperation. Young Onset Parkinson’s sucks. Tony needs help and I don’t know where to get it.
Found an OLD article about my parents life on the Ohio River. I wasn’t mentioned but remember that Tommy & I ran away in very soon after they purchased her.
The River Life
Boating couple calls the Laura and Ohio home
(Article I found from the Mt Vernon Democrat dated Wednesday June 17, 1981 written by Donna Spurrier)
Laura is a rather large and very unique lady in the life of Charlie and Bettye Roberts, the fulfillment of a lifelong dream for the couple who were born and raised along the Ohio River and always dreamed of actually living on the water.
After having owned smaller pleasure boats, the couple searched for a larger boat on which they could reside, a search which ended in September of 1972.
With the purchase of the 72-foot-long, 27-foot-wide Laura, the former president of Windsor Plastics retired earlier than expected, at age 54.
In five months, after many changes to the interior, he, his wife and daughter Mary Jane were able to adopt this new gypsy lifestyle on the river.
In an atmosphere of complete relaxation, the couple sip their favorite beverages beneath the cool shade of the canopied bow and invite all curious “drop-ins” to join them around the deck table.
With boundless hospitality, the Roberts’s, whose home port is in Evansville, Indiana, have traveled up and down the Ohio River, welcoming many boating enthusiasts to board their vessel, and are certainly no strangers to Mt. Vernon, where Laura was recently docked for repairs.
In return, they have made many friends upon the river and speak highly of “river people”. “It’s a fun way to go. River people are nice people. Always willing to help you. They’ll do anything for anybody,” Charlie said.
The Roberts’s are fond of sharing their memories of pleasurable moments upon the river such as two weddings, a class reunion and the Owensboro Regatta in 1973, when about 200 people stepped aboard the boat. “We had 25 or 30 boats tied to us, “ Mrs. Roberts said, smiling as she told about everyone coming aboard to use the only bathroom facilities available in the middle of the river.“You could have walked a mile across all the boats that were tied to us,” Captain Charlie said, admitting he was exaggerating a bit.
“A lot of people have climbed aboard. Entertaining on the river is a lot of fun.” He said.
The Ohio River is another dear friend to the Roberts’s. Though they rarely encounter troubles, which they cannot handle, a recent one being the loss of a rudder which forced them to dock at Mt. Vernon for a few days, the Roberts’s have a deep respect for the ever changing currents of the “Old Man River. “One thing you can bank on this river, is you can’t bank on it,” Captain Charlie said with a chuckle.
With the help of three crewmen Captain Charlie keeps the generators and other working parts of the boats bowels in top shape.
Mrs. Roberts has also contributed to making her life on the river comfortable for her family and guests by importing many personal furnishings and mementos from their Evansville home, which was sold when they boarded Laura.
The boat, which has 37 windows, boasts 10 fully furnished rooms including a pilot house, private study, living room with dining area, and their really nice master stateroom, two bathrooms, a galley, small breakfast area and two private staterooms.
Much of the original battleship steel and pecan and black walnut woodwork is still intact, including the rounded top door leading to the galley, which has the brass hinges and pegs.
The all-electric galley, which the Roberts’s keep air conditioned during the summer months, is made complete by a dishwasher and a radar range oven.
For over half a century, Laura has served her owners as a flat top ferry, a yacht and an excursion boat, a commercial towboat and now the home of Charlie and Bettye Roberts, who have found they must sell because of rising costs of fuel and maintenance.[You didn't enter a valid video URL. Please try again.]And even though the Roberts’s may well sell Laura, they say their memories of peaceful sunsets, the tranquility of life on the river, the numerous friends, the many parties and realization of a dream fulfilled are priceless..
1. When Mother was pregnant with me her Dr. put her on Dexedrine so she wouldn’t gain weight. *I was unexpected- she was nearly 40 and done with children* Mom had abruptio placentae- we both almost died. I was born under 4lbs + very addicted. My elbows were worn down from thrashing in the incubator. Finally they titrated the dose to get me weaned.
2. I got my rear whipped 2 times. Once when my BFF and I pulled up the neighbors tulips (all 50 of them). And again when I tried to create a lamp by lighting a match book and putting it in a pill bottle- it dropped behind the sofa in the family room and my parents found the burnt back of the sofa & curtains 1 week later (whipped b/c I didn’t tell)
3. Before I knew about prayer I would think HARD and hold my breath to get picked for something at school or get a good grade.
4. I fainted whenever hot in school plays- (pre curser to MS heat intolerance?) (or from hyperventilation from holding my breath)
5. My 1st grade teacher accidentally slammed the classroom door on my thumb when we were in line for lunch due to a boy who was being bad behind me. I fainted in the nurses office. Then had to have my thumb nail removed at the Dr.’s office. Traumatic painful incident.
6. Told my 2nd grade class that Ringo Star was my cousin. This caused a huge crowd to gather around me at recess *for days* asking questions- I finally broke down in tears.
7. I didn’t want one of my BFF’s to think my family had more money than them, so I made up stories of how our family had to dumpster dive (before it was popular) to get our dinner. I also had a ball telling them I’d never eaten noodles or jello and had their entire family teaching me how to slurp or wrap my fork.
8. I was known as the “Scratcher” when in fights.
9. Some of my closest friends in grade school were black- I never knew prejudice. Two of my close friends were deaf- we never had communication problems.
10 Before caller ID I loved pranking people on the telephone. Esp calling in Pizza’s they did not order for delivery.
11 A dear lady across the park from where I lived offered vacation Bible School when I was 8 or 10. I accepted Jesus praying with her. But when men from her church came to ask my Mother if their church bus could pick me up on Sunday’s she was VERY LIVID and slammed the door. Two hrs later she came up from sewing in the basement and saw these men on their knees on our stoop praying for her soul. She told them she was calling the police on them.
11.When Tommy & I ran away I was staying with friends while my parents were out of town. I told them I was going to Easter Evening Services at Tommy’s Mom’s church. (I will always regret lying and putting that dear family in the awful spot of telling my parents I’d run away)
Two hundred plus people who have likely never met travel across the country (or around the world) to gather together and share intimate details of their lives like they are long lost family.
This is what happens when The Trigeminal Neuralgia Association offers their national conferences.
Something about meeting others who have actually felt the indescribable jolts of trigeminal neuralgia and other face pain syndromes is unique. Knowing others have experienced this and are surviving is validating and encouraging. Hearing their stories seems to validate my own. It may be the only place where our stories of incredible pain are really understood.
We are able to find out what kind of treatments have helped others. Some have found relief from the monster and sadly others have found no way out of this nightmare.
Medical experts from around the world share the latest in science regarding the causes and treatments of this disease.
Often people who find relief from their pain walk away from this group and never turn back. Getting on with their lives without TN. Thus people who are still in pain don’t get to see many in real life who once had TN and no longer do. One important reason I go is to be a face of hope. The other reason is because I can never forget. I can never take for granted a pain free day.
Thank you TNA for providing these national and regional conferences. Thank you for your website that allows us to connect even when we aren’t face to face. Thank you for brining on The Facial Pain Research Foundation to find a cure. Thank you for participating in the 1st International Trigeminal Neuralgia Awareness Day.
We just returned from attending the 9th annual national conference of the Trigeminal Neuralgia Association.
This years conference was held in sunny San Diego, Ca.
I cannot describe to you the benefit we get from gathering with others who have known Trigeminal Neuralgia and other face pain syndromes. This horrific pain is described as the worst pain known to mankind.
Because it is not well known; resources for coping and medical care are often difficult to come by. Yet the Trigeminal Neualgia Association brings together experts in the field from across the world. Three days of learning that we are not alone, that there are surgical and medical treatments that can sometimes stop the pain and at least lesson it’s severity.
We network with others who are still struggling with TN and other face pain. Seriously I have made friends for life by attending the last 3 National conferences. My husband has had the rare opportunity to connect with other support persons who know this pain by association.
All of us are validated in our fears. We are encouraged by seeing others continue trying to lead productive lives. And we come away with greater understanding of our disease and ways of coping.
I am a fortunate one who found relief in brain surgery (microvascular decompression) to stop my pain in 2006. Not everyone who has TN is a candidate for this surgery. Others find pain relief for some time and then the monster returns. My most recent post about my experience with TN is here: title="It began as an itch in my ear" target="_blank">
Many of the Neuro Surgeon’s at the conference mentioned recurrent pain years after MVD. For a multitude of reasons that I will describe later. Yet meeting people who have been pain free for 12 + 16 years encouraged my hope.
But I will never forget!
This year was special because the conference concluded just one day before The 1st Annual Worldwide Trigeminal
Neuralgia Awareness Day.
And during this conference I became aware of a co group of the TNA which is working to actually find a CURE for TN. This foundation is likely the most exciting thing I was made aware of. Please check out The Facial Pain Research Foundation
Next week is the 9th National Conference of the Trigeminal Neuralgia Association.
October 7th is International TN Awareness Day.
Time to share a synopsis of my story with what is the worst pain known to mankind. I was just over 40 years old and was enjoying my personal pursuit of fitness after giving up decades of cigarette smoking. It should have been the best part of my life.
However I was experiencing an itch in my ear. I would describe it as a daddy long legs driving me insane in my left ear canal. I used my pinky finger nail to try to scratch it. But nothing stopped the sensation. It would go on for a couple of months and then stop all together. Months later it would return much worse. The itch evolved into a very serious pain. I began seeing a friend who is a nurse practitioner. She treated me for swimmers ear and other possible conditions. Often I would think we’d solved it but it always returned with a vengeance.
Finally I called her saying “I can no longer cope with the pains that are jolting my ear.” The pain began feeling like being electric prodded and was beyond my description. When I wasn’t dealing with the actual pain I was emotionally shook up trying to recover yet knowing the indescribable would surely happen again.
Now my friend referred me to a specialist. She told me that although she was initially sending me to an Ear Nose and Throat Dr. I would most likely end up in a Neurologist’s office. Then she said the words I’d never heard nor could I pronounce or spell “Trigeminal Neuralgia”. She told me that the good news was it was treatable with medication.
The ENT Dr. did confirm the TN and sent me to a Neurologist so I could be prescribed the anti seizure medications that would stop my pain. The Neurologist ordered an MRI to rule out a brain tumor or ms. Sadly the MRI did show lesions from MS (another surprise/ another story). My TN was not related to MS as is sometimes the case. The anti seizure medications helped the intensity of my pain at the same time they gradually numbed my life. The worse my episode of pain, the higher my dose of medication would be to cope. Eventually I was taking so much medication that I felt my life was not worth living. And even at the highest dose my pain was not gone.
After 5 years of living with these episodes of pain I went to Vanderbilt and had brain surgery called microvascular decompression. I consider myself one of the lucky ones because the surgeon saw clearly the artery that was compressing my trigeminal nerve as it exited the brain stem. He lifted the offending artery off and placed padding around the nerve.
This was the scariest thing I have ever done in my life. But in my situation it was the best decision. I have been free of TN pain since 2006. However I still consider myself a person with TN. I just cannot take for granted that I have pain free days. Not everyone is a candidate for brain surgery to stop their TN pain. Others only have relief for a time and then the pain strikes again.
I want people to be aware of this condition that leads some to suicide. Next week will be the 3rd national convention we’ve been able to attend. I look forward to reconnecting with people who we’ve met previously. My hope is to encourage someone who suffers. I will be updated on the latest information about and treatments for TN.
I still deal with symptoms of my slowly progressing multiple sclerosis daily. But I do not deal with the pain from trigeminal neuralgia.