I missed the huge Memorial Day BBQ my friends were having.
I wanted to go. I wanted to see everyone. I just couldn’t. I thought about a room filled with dozens of people laughing and talking over each other, children running around and playing, music, etc. I thought about myself, sitting in a corner, watching it all happen around me as my headache slowly began to build to an intolerable level.
My photophobia and phonophobia are such that I can’t be at large, loud parties without developing a debilitating headache within about an hour.
It’s been 8 months of headaches every day and I feel myself fading out of friend groups, excursions, and social life.
It makes me so sad and angry and frustrated. I want to be at the big loud parties, the group events. I want to share in the moments these beloved people are making together. It’s yet another thing that I feel has been taken from me.
I am disappearing from the world I used to belong to.
we’re still waiting to see when I get to come home again.
Good evening. I am still here in lovely Chelsea Michigan trying to find answers to our questions and possible treatment plans for this, apparently, lifelong medical illness.
That is the biggest change resulting from treatment thus far. After attending several classes with the treatment team it has become clear that there is no cure for migraines. That there are three types of patients in every medical condition group. There are patients who are easily treated with one or two medications as outpatients. These patients experience few side effects from their medications and manage them throughout their lives with these few meds.
The second group has side effects from the medications that they try and may need more of them working together. They may spend months or years working with doctors to find a treatment that helps them manage their migraine condition.
Then there is the third group. The group that doesn’t respond to medications or treatments. All our tests come back normal, everything looks fine, but we live more than half of every month with headaches bad enough to ruin our lives. We are less fun parents, less able co-workers, disappearing friends. We try medications, surgery, atypical treatment, and so many doctors it’s impossible to actually remember who we saw when. We suffer from side effects and get no response from the meds. For whatever reason, our brain chemistry is such that we have chronic persistent migraine that will not respond to treatments.
I belong to the third group. I am 8 days in and we are only slightly closer to discovering a treatment plan. We have tried over a dozen abortive medications, a series of IV protocols, and several cervical blocks. I have another tomorrow. We have learned my neck is a contributing factor and we have found a couple of medications that help bring the daily headaches from a severe to a moderate. It’s progress.
It’s also scary and frustrating. I have managed my headaches since I was twelve. It is scary that they have changed so drastically in the last two years and that my usual methods don’t work any more. It’s scary that I am going to have to manage my condition like it’s diabetes or epilepsy. I will have to sleep at the same time, eat at the same time, wake at the same time. Take a terrifying amount of serious medications with side effects that will have management issues on their own. I will have to reduce foods, alcohol, etc.
I am not coming back from this the me I was before it began. I am not ever seeing that me again. That boundless energy I used to use to tackle everything that interested me, I won’t have that anymore. If I do get it back, I can’t use it the same way. I have to use my spoons wisely and carefully every day in order to minimize the risk of a severe migraine attack.
The doctor teaching the class said the hardest thing about migraine conditions is that society puts the burden to cure them on the patient. She’s right. No one asks a diabetic when their diabetes is going to go away or be cured, but I get those questions all the time, even from doctors. She suggested we reframe our experience to help inform people it’s a lifelong medical illness, not a headache.
Maybe it’s the sheer number of needles I have had in my body this week, or the sedation, or the protocols, or the meds, but I am very tired. I can’t comprehend a future with this much conscious living. I have to prepare for it, but I can barely focus on the concept. I am so tired.
It’s been 8 days since I was admitted, two weeks since I’ve been home. I miss everyone terribly. I am trying my best to learn how to manage my migraine illness. My unique brain chemistry is a challenge to treat. I have the country’s best migraine specialists seeing me daily. There is hope.
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.
The “NOIVE” of some nerves.
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.
What’s next?
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.
***
UPDATE
This is future-me:
Marvel.Wikia SheHulk Vol. 1:9
Managing life with chronic illness requires savvy spoons
SavvySpoons 