Category Archives: Trigeminal neuralgia

What is with the weather…?

There is some sort of weather ‘ledge’ here on the front range that is sending my body into a tizzy of confuddled circles trying to decide exactly how fucked up I should be.

It kind of sucks actually. My face is dancing it’s little spiky-heeled tango on the left side of my head and my scalp is super sensitive and my joints can’t decide if they are weak or stiff or just in pain.

I mean, it’s bad enough that my body wants to belong to the club of “medical science just doesn’t get me” but now the weather does too?

Can I sue climate change deniers for personal damages now that the global climate change is making my body crazy?

Sorry, lawyer brain went off on a trip at that one. I’m back now.

It just seems unfair that the weather on a good day can make me feel shitty so when I’m all “It’s my year to get understand my body” the weather is all “hold my beer” and then the beer is actually a multi-week long storm front that stays at the ice-pick stabby stage for the whole damned time instead of having some sort of precipitation that fixes it for me.

Anyway, despite Mx. Weather being an asshole I managed to box yesterday and walk briskly this morning. On track for moving my butt around and creating brand new small nerve fibers to combat this stupid syndrome of mine.

I also made an appointment for a surgery to correct whatever is going on with my small intestine and the scar tissue from my hysterectomy.

Then I made a cake, because I wanted one. I put beets in it though because I wanted to be healthy.*

So, I’ve completed two days of my new plan. I’m doing what I can to feel better.

* Also possibly because I am insane. However, six other people have tried this beet cake and declared it good so I am not the only insane one out there. It’s a bit like a carrot cake had a baby with a zucchini bread but was bitter about it.

That’s all for today loves, stay safe out there.

Oh my goodness, I almost forgot. Here’s a link to those Valentine’s ECards my haiku are featured in. I’d be honored if you would pop over and check them out. I believe you get to send up to five cards for each donation.

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.

This one time, in pain camp…

Here 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:

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.