Category Archives: Trigeminal neuralgia

8 days and counting…

It’s been one week since they admitted me,

Took pictures of all the nerves inside me,

Two weeks since we jumped the plane,

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.

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This one time, in pain camp…

IMG_20150316_121423~2Here I am in my room at St. Joseph Mercy Chelsea Hospital writing letters home to my loved ones.

I have a spacious room, one once intended for two. It has a ton of space as a result. I have cozied it up with a sari quilt, a fuzzy leopard pillow, and a bouquet of peacock feathers from the feed supply in town. It will be my home for the next week or longer, so I wanted to make as home-like as possible.

Today I began the day with “rounds”. Unlike most hospitals, we go to our team in the lounge for rounds and meet with everyone at once. My team and I discussed treatment for the day and the week, and analyzed yesterday’s failures and successes. I was informed what doctors I would be meeting with, what medications I would be trying, etc.

As I walked back to my room Nurse Joan came and took me in to see the plastic surgeon. We discussed my last horrific experience with nerve blocks and he asked me to try again. So, I had occipital nerve blocks done. Six injections into the back of my skull, leaving me a numbskull. For the next six hours I track the result. So far, numb. Can’t quite tell if the headache is better or not. Can’t say the experience is pleasant. It is not, but it was not the horror show I experienced last time so whatever he did differently, I’ll take it.

Dad has been coming to see me every day. He sits in the comfy recliner by my side while I deal with treatments and headaches, reading a WWII book on his kindle. Sometimes he will tell me a bit about the book, a memory from my childhood, something about when he and mom met. It’s been a cozy time to get closer to him. I am beyond thankful for his presence.

I try to stay cheerful with silly touches like Ruby Slipper socks:

IMG_20150316_175325_nopm_

And letters from loved ones. Thank you to all who have sent them, they help a lot.

Today is a high pain day, but I managed to make my bed, eat some breakfast, and blog. My next mission is to take a walk and then I will come back and try the next medication on the list of hopefuls.

 

Ann Arbor on the horizon…

It’s 5:30 a.m. the morning after Spring Forward.

I can’t sleep.

Tomorrow morning I take my fuzzy pillow and my comfort quilt and I board a plane for the Michigan Headache and Neurological Institute in Ann Arbor.

I don’t know how long I will be there, if they can do anything, what the prognosis is.

All the anxiety I have been staving off with everything I could possibly find just hit me right now, in the 5:30 am quiet of the house.

I somehow can’t believe my headaches have gotten so bad I am going into a special hospital for them, but here I am.

If you have spare prayers, please throw a little my way. I am casting about in a tiny boat on a huge angry ocean. This is the last big try, if it doesn’t work, there isn’t any other plan.

What is Trigeminal Neuralgia?

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.

tri-neur
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  Vol 1 9  SheHulk
Marvel.Wikia SheHulk Vol. 1:9

It’s all in the presentation…

When I was in college I took a marketing class. In this class I learned that during the 1950’s a man invented a closed plastic mousetrap that would capture the mouse and kill it as effectively as the open wooden mousetrap, all without the mousekiller having to see or touch the mouse. This new and improved mousetrap was only a few cents more than the wooden trap.

He went out of business.

You see, despite being designed to be disposed of, the trap looked fancy enough that housewives across the U.S. were cleaning out the traps and reusing them, they looked to expensive to throw out. As cleaning out a dead mouse is revolting, they quickly went back to the wooden mouse trap we all pretty much use today.

It’s all in the presentation. If the marketers of that mousetrap had made it look less attractive, we could be using their trap today.

I have had a paradigm shift this week in the way I view my illness.

I have had migraines since I was 12. My family has felt sorry for me, my friends have commiserated. I have dealt. Then my trigeminal nueralgia came along and for the most part, we all treated it like a different version of the migraines. Something really unfortunate that I just have to cope with. Something without any real cause that needs medicating.

Until yesterday. A ha ha ha until yesterday.

Yesterday I met with a neurosurgeon. First of all he made it clear that I have a condition that is different from the migraines. It’s an operable condition. There is something physically wrong with my trigeminal nerve.

Then he explained my options. I can either have gamma radiation rays aimed at my brain to permanently disrupt the connection between my nerve receptor and my face, or I can have inpatient brain surgery where they cut a hole in my head and insert a pad between the blood vessel and my nerve. Both have a chance of causing permanent numbness ranging from occasional tingling to complete “I just had a root canal” numbness. Neither is a permanent fix. Apparently my TN will always come back. There is a third option but I am too young, I can burn the nerve off completely. There is a 100% chance of complete face numbness with that one.

Suddenly I wasn’t dealing with migraines any more. I wasn’t facing just migraine management and pain control. I was facing brain surgery and a physical nerve condition that has been treated for over 50 years but is still largely not understood. No one has any idea why the trigeminal nerve suddenly decides to fire randomly throughout the day and send shooting pain through my face. Some think it can be caused by age, some think head trauma, some are trying to link it to a specific virus, but as of now, they do not know.

All they do know is they can stop the shooting for a while by cutting open my head or shooting me full of gamma rays.

Okay. Gamma rays. It’s an 85% effectiveness rate versus a 95% effectiveness rate. There is a small chance I could be permanently numb, but I like to believe there is a small chance I become the incredible hulk. (Though Dan says I would be the credible hulk because I would back my claims up with citations.) Two days of feeling not so great and then I see if there is any improvement.

I can do the GammaKnife twice and the surgery once.  If those don’t work, I can burn the nerve.

Honestly, I am freaking out. Now I am crying and scared.

In 18 days I ship off to Michigan to be hospitalized for 24 hour in-patient treatment. I am looking at brain surgery. My cardiologist is testing for PFO ( a condition where a small hole in the heart is the cause of migraines.).

The presentation has changed. I can no longer believe I am simply managing a worsening condition. I now really feel as though I am falling apart.

Move ’em on, head ’em up, Head ’em up, move ’em out

This whole “lead a normal life” regimen is really hard.  So far I am mid-transition with my medication which means I am getting the sharp face punches more frequently.  The good news is they last a very short time and I am learning to breathe through them.

Still, the only way I can keep on with the normalcy prescription is to just keep moving.  The first day I cleaned my entire living space from head to toe, reorganized my files and office, cleaned my son’s space, washed and folded laundry, waked to campus, taught class, then hung out with the kids, doing homework and such until bedtime.  Ten o’clock, my chosen bedtime, has never been so happily greeted.

The second day I spent in search of the icky cat pee smell and spent two hours scrubbing hardened cat resin off of various parts of the house where my twelve year old had failed to sweep up spilled litter when changing the catboxes.  Afterward I mopped assiduously. For exercise I spent 45 minutes on the exercise bike. Finally, I worked for a few hours, cooked dinner and did dishes before helping the kids with schoolwork, baths, and bedtime.

By the time the third day rolled around I had the hardest time getting moving.  Every step seemed a struggle and every action a burden.  All I wanted to do was lie in bed and watch t.v. or sleep.  Instead, I got up.  I got the kids ready for school, made myself breakfast, and did thirty minutes on the exercise bike.  I worked, applied for jobs, reviewed my current cases and did laundry.  After school I took Marlena to the doctor for a knee injury at school and once home ran errands for her and made sure she was comfortable.  When she and Ollie left with their father I did rest some.

I keep thinking that if I just keep busy I will get used to it again.  I used to have tons of energy and was able to handle dozens of complicated things every day while still managing to be a good parent.  I even did this with migraines.  Heck, I’ve had ’em since I was 12, so learning to cope with them was  a necessity.  I succeeded through law school with more than 16 headache days a month and a small child.

Still, despite the prescription to just keep moving, I can feel the tiredness pouring from my body.  It’s inclination to lie down and sleep is powerful, fed in part by the three or four different medications I am on that cause drowsiness.  At this point, it’s sheer will, stubborness, and the love of those around me that keeps me going on this new lifestyle change.

Fake it ’til you make it.

That is basically my new medical plan.  For now at least.  It turns out the fancy drugs they gave me to assist in fighting off the shadowboxer caused suicidal ideation.  Long term use of opiates does the same thing for me, so I am used to randomly being ready to hang up the towel when my brain chemistry is altered by various medications.

So I called my doctor and used the magic words.  “Dear Doctor So and So, I want to drop a piano on my head. Please advise”.  I had an appointment the next morning where he took me off all my currents medications and started me on all new ones.  He also ordered the following:

Go to sleep at the same time every night.

Wake up at the same time every day.

Eat breakfast, lunch, and dinner at about the same time every day.

Exercise every day.

Work at the same time every day.

He basically ordered a “Fake it ’til you make it” prescription.  I started it yesterday.  It was grueling.  I wanted to fall asleep at noon, so instead I spent two hours cleaning.  I ended up going to bed at ten.  Ten took forever to get here.

So, today I woke up to get the kids to school. Stayed up after seeing them off, made myself eat a healthy breakfast, and am now sitting down to work.  I assume someday this routine will reset my circadian rythyms and seem more natural, but for now, it feels a little like water boarding.  I keep forcing myself to keep doing stuff until it’s time to go to bed.