We recently attended Marlena’s continuation ceremony. She was recognized for her athleticism in cross county track. There was a slide show with images of the students during the school year, speeches from teachers and students alike, and a truncated graduation ceremony where each student walked across the stage and received a continuation certificate from the principal.
It was lovely.
There was one little fly in the ointment however. Multiple times throughout the speeches the adult speakers congratulated the students on having continuated. As in:
“Congratulations on having…um…continuated to high school”
“As you continuate to high school…”
I wanted to leap up from my seat and shriek “The word you are seeking is ‘continue’! As you continue to high school, congratulations on continuing!”
Instead I remained in my seat and watched my mother and father share in my horror as the word ‘continuated’ fell from the lips of educator after educator.
Is it because we congratulate people on having graduated, or on graduating? Were the two words mixed up in the minds of the teachers? Was it fear of public speaking or the stress of the two hour long event in an overly hot auditorium filled with hundreds of parents? Could it be the internet age with it’s emoticons and memes slowly bastardizing the English language?
Whatever the cause the effect was jarring. I was pulled immediately out of the meat of whatever the speaker was saying each time I heard the misuse of continue and sent pondering the steps that led up to the use of that word.
I keep talking about this ailment I have, so whiskey tango foxtrot is it?
Trigeminal neuralgia, or TN for short because it’s a tongue twister even for the medical crowd, is a chronic pain condition that affects the trigeminal nerve, which carries sensation from your face to your brain.
TN causes the nerve’s function to be disrupted, usually resulting from contact between a normal vein or artery and the trigeminal nerve, causing the nerve to freak out and malfunction. Chemical imbalance can also cause TN.
When you have TN, the slightest stimulation of your face, such as breathing, wind, cold, moving your hair back behind your ear, the kiss from your child, etc, can trigger an attack of of excruciating pain.
The pain can manifest in a number of different ways. For me, it does exactly that. I have an atypical presentation of the disorder, because I am special. (I no longer like being special, by the way, I would like to be dull normal please.)
I have a constant, ever present awareness in the left side of my face. Sometimes it feels like there is icy hot on it, sometimes it feels as though it is made of ultra fine glass. It’s not painful, per se, but it’s not pleasant.
I also have the attacks that come with the tiniest degree of stimulation. When I was first diagnosed with the disorder, I had the attacks rarely, but now I have them dozens of times a day.
Sufferers often initially experience short, mild attacks, but trigeminal neuralgia can progress, causing longer, more frequent bouts of pain, resulting in chronic pain and disability, including depression.
The attacks last from 30 seconds to ten to fifteen minutes. They have a dozen different sensations as my brain tries to make up it’s mind about what the nerves are telling it.
Brain: Dudes, seriously, are you actually being punched in the jaw, sliced along the cheek with a knife, set on fire, and doused in ice water, all at once? What is going on down there?
Nerves: … FEEL ALL THE THINGS!!!…
Sometimes I feel as though I have the worst earache ever, sometimes it’s a toothache. I have actually checked to see if I have a sore tooth by poking madly at my molars with tweezers. I stopped doing that after I realized it would likely eventually cause an actual toothache. (To my credit, I never poked madly at my inner ear with tweezers.)
Sometimes I feel like a lance has been driven from the top of my head down through my left shoulder.
I am not doing well.
However, I am lucky. TN comes with depression, cause, OW. It also comes with isolation. I have my parents, Dan, my children, and a number of loving friends who have reached out, visited, sent loving texts randomly, called, emailed, and let me know I am not alone. I have support. I have people to hold me when I seize up and to remind me to breathe through it. I am going to be OK.
TN is first treated with medications, such as anti-convulsants and muscle relaxants. When that doesn’t work, they move onto brain surgery.
(From the Mayo Clinic Website)
Surgical options for trigeminal neuralgia include:
Microvascular decompression. This procedure involves relocating or removing blood vessels that are in contact with the trigeminal root.During microvascular decompression, your doctor makes an incision behind the ear on the side of your pain. Then, through a small hole in your skull, your surgeon moves any arteries that are in contact with the trigeminal nerve away from the nerve, and places a pad between the nerve and the arteries. If a vein is compressing the nerve, your surgeon may remove it. Doctors also may cut part of the trigeminal nerve (neurectomy) during this procedure, if arteries aren’t pressing on the nerve.Microvascular decompression can successfully eliminate or reduce pain most of the time, but pain can recur in some people. Microvascular decompression has some risks, including small chances of decreased hearing, facial weakness, facial numbness, double vision, a stroke or other complications. Most people who have this procedure have no facial numbness afterward.
Gamma Knife radiosurgery. In this procedure, a surgeon directs a focused dose of radiation to the root of your trigeminal nerve. This procedure uses radiation to damage the trigeminal nerve and reduce or eliminate pain. Relief occurs gradually and may take several weeks. Gamma Knife radiosurgery is successful in eliminating pain for the majority of people. If pain recurs, the procedure can be repeated. Because Gamma Knife radiosurgery is effective and safe compared with other surgical options, it is becoming widely used and may be offered instead of other surgical procedures.
There is a third procedure where they “Burn the nerve” causing complete facial numbness on that side. I was advised against that procedure because young people go quite crazy when they have a completely numb face. Apparently older people do not.
I am starting with the Gamma Knife radio surgery. My hope is two-fold. One, I will no longer have the TN pain. Two, I will become She-Hulk. (She was a lawyer, I totally fit the comic book.)
I can try the Gamma Knife twice before the other surgery. I can do that surgery once. I was told this will come back after every procedure. It’s just a matter of time.
I was also told they have no idea what causes it. Some people think it’s age, some people think trauma, some think virus. All they know is that it is more common in women than men, and it sucks. (That’s the official medical term.)
So there you go, that is one of the two ailments I have. The other, chronic persistent migraine, I will save for another post.
Have a good day y’all, I am off to play Eidolon and drink coffee.
The day began as they often do, with a migraine and a moan. Today I grabbed my D.H.E. injection and headed downstairs to shoot away the pain and get started with my morning so I could walk into work and enjoy the sunshine.
By 11:30 it became clear walking wasn’t going to happen. The headache was gone but I was feeling weak and shaky from the shot. Still, headache gone, time to go to work. Dad dropped me off at noon and I said hello to the office for the first time in several days.
Then about half an hour later I began to experience chest pains.
Not again, I thought.
You see last week I missed work because I spent Monday in the E.R. with chest pains which started 12 hours after taking my D.H.E.
Calmly I wrote down the time they started and when I took the medication and began trying to work again. Then I began to feel a sensation of pain move down my left arm and into my hand, and my arm went numb. I marked the time and the sensation and called my doctor. No answer. I went back to work. About fifteen minutes later I started feeling hot and clammy and my hands began to perspire. Shit. I called my doctor, marked the time, made notes. No answer. I went back to work. A bit later I began to feel nauseated. I called my mother.
Which is how I ended up in the back of an ambulance on my way to the ER for the second time in one week. My mother wisely suggested, and then ordered me to call 911 for an ambulance. I called and they were there fast. I was impressed. I barely had time to alert my co-workers to the fact that I would be leaving for the day, much less that four paramedics and two EMT’s were about to swarm the building and cart me off on a gurney.
I was rather embarrassed, honestly. I prefer my illness to be more private than that.
Once in the ambulance I got aspirin and Nitro, and off we went to St. Joe’s for the tender mercies of the day staff. They were wonderful. They took every possible test and precaution and sent me home with the admonishment to never again take D.H.E.
Apparently it caused vascular spasms in me, resulting in decreased blood flow to my heart that was painful, but not damaging in the same way a heart attack was. However, there were clear that there was no good to be had in continuing to take it. I have to agree as the triponin test I took last week at the E.R. was 0.00 and this week’s was 0.015, it seems there is a slight increase in enzymes associated with heart attack. I want to stop this ride while my numbers are in the “still negative” for heart attack range instead of waiting to see if I can raise them any further.
So tonight it’s cookies, tea, and sleep. And OK, a little weep. After years of not finding a solution to my migraines I am upset that the one drug that seemed the most promising tried to kill me in other ways. I was so hopeful for this one. (Damn homicidal medications!)
Right. So going somewhere to hang out for a few weeks used to be the way to refresh and relax. Used to be, as in, before I had two young people to care for during the weeks of “vacation”.
The time change coupled with the break in routine completely borks my children’s circadian rhythms, they don’t ever want to go to sleep, are so tired they fight sleep like crazy, and are generally sleep deprived. (This of course leads to a generally insane behavior, at least on the part of my 6 year old, though the baby can be nuts too.)
So instead of relaxing and lazing the day away, I am eternally engaged in the struggle for master of fate with my daughter, while trying to calm a really cranky boy. The struggle with my daughter looks a lot like boundary pushing, arguing, rule flouting, whining, and losing the ability to say please and thank you. For the baby, it just means being unwilling to sleep during the day, ever, and therefore being too tired to be happy with anything, resulting in lots of crying fits.
Ack!! Headache central here I come!
I love seeing everyone, and have been pretty good at limiting the social events to a minimum, but I still have the desire to lock myself in a room and be alone for a few hours. I spend a lot of time alone at home, so it is strange to be surrounded by so many people now. Wonderful, as I get to fill my days talking to people I rarely get to see, but strange.
I think I am going to have to hide in a closet for a few days when I get back to Jersey!
Managing life with chronic illness requires savvy spoons