Oxcarbazepine, Botox, & The Cefaly- Which is Working?

My pain levels are wonky to be sure. One day I’m a 5 out of 10 on the pain scale, the next three days I’m a solid 9. Then I’ll have a few 6-7 days. What I do know is that this is a vast improvement in the quality of my life over the period between September, 2014 an August 6th, 2015. I am in no way complaining.

However, I would like to know what is making the magic happen. I’ve been using the Cefaly device for a while now. I’ve been on a larger dose of Oxcarbazepine (or Trileptal, used to treat Trigeminal Neuralgia) for several weeks. And I’m right in the sweet spot of my most recent Botox treatment where the Botox flu and droopy-eyes are gone, and it has not yet worn off.

This is the problem with chronic condition. We’re so eager to try everything that we just want to do it all at once, which makes it hard to determine what is actually working. That leads to being on tons of medications and afraid to stop even just one.

ALL OF THE PILLS! ALL OF THE WEIRD TREATMENTS! GIMME!

Really, I’ll do anything to feel less pain, but it sucks not knowing which thing to credit for better days!

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Happy Painiversary, My Brain Hates Me!

MBHMlogo

Happy 3rd Painiversary, My Brain Hates Me!

In 2012, something started going wrong with my head. On August 7th, 2012, after my first productive and full day of work in a long while, I went home, sat down in my kitchen, and my head started hurting again. It never stopped. That day was both the last day I remember feeling good, and the beginning of my Monster Migraine.

It’s been a long, depressing, painful, maddening three years. There’s nothing happy about living with chronic pain. There’s nothing fun about being buried under tons of medical debt. There is no reason to celebrate today.

However, I’m alive. I’m alive and you’re reading this. Maybe your body has betrayed you in some way. Maybe someone you know lives with pain. Maybe someone you know thinks a little differently. Maybe you think a little differently. You’re alive too. We’re getting through the day.

This isn’t a joyous day for me, but it’s also not the end of the world. I live in the 8-10 pain range. all of the damned time. Yesterday, I had Botox treatment and a lot of new things were discussed at my appointment. I sleep sporadically. I’m grumpy frequently. I’m pretty darn depressed. I do have a family that loves me, though, and a ridiculous dog, and a roof over my head. Things could always be worse.

Therefore, on this day of sarcastic remembrance, I shall embrace the fact that I have grown as a person because of my pain and that I have accomplished some good things because of my pain, and that not everything is horrible.

Thank you for reading over the past few years, and for continuing to read in the years to come. You’re rad, and don’t let anyone tell you otherwise.

Love Your Friendly Neighborhood Pain Grump,

My Brain Hates Me

Chronic Illness Cat On Pain Scales

chronic-illness-cat:

from the amazing Nikki Ourand Lambert

[picture of a Siamese cat’s head against a triangle-sectioned background with many shades of blue. Top line of text reads: I’ve lived with chronic, severe pain for so long now || Bottom line of text reads: that I no longer have a frame of reference for the pain scale.]

Hello, 6/10 Pain Day, My Old Friend

I’m having what is, for me… right now… after several months in the 7-10 pain range, a decent head day.

A 6!

A 6!

6 Out of 10 on ye aulde pain scale.

I call lower pain days, “good head days” or “decent head days” depending on where they fall. This, is, as stated, a “decent head day.” My first instinct on such a day is to try to accomplish things. There is laundry to be folded, and I’d like to put my collection of My Little Ponies up in the Girl Cave. There are Christmas decorations to put up. However, I’d also like to go out with my husband this evening and put some effort into my appearance. While I don’t call myself a spoonie, because I’m not big on labels, I do subscribe to the spoon theory, and I’d like to save my proverbial spoons for some child-free quality time with my husband.

I am every suspicious of decent head days. This one comes after several days of agony. Thanksgiving hurt. It really was a physically miserable time. The food and family were wonderful. I was ouchy. No need to dwell on it, but it was bad. Now I feel a bit better and I don’t trust it. Is it the calm before a stream of 10/10 days? Possibly.

While I am wary, I’m not anxious, or stressed. The knowledge that this decent day could be the precursor to a horrid week doesn’t frighten me or make me sad. It just is. Perhaps I shall have a lovely week and feel up to accomplishing things without having to dip into pain medication.

Either way, today is a gift and I am going to use my gift as I see fit, and share it with my husband, whom I love very very much. For he is handsome and his face smells nice. So mote it be.

Tip: Covering Ice Packs

If you’ve ever had a migraine, you know that an ice pack can often be your best friend. Due to my condition, I have days where I spend a lot of quality time with my ice packs, rotating them constantly until none of them are frozen anymore and I’m simply SOL.

But the problem with ice packs is that they are just too darned cold.

I have tried everything from pillow cases to wash cloths to dish towels to cover my ice packs. I’ve wrapped paper towels around them. I’ve really never been satisfied. Cloths always slip and come unwrapped, or they’re too big to begin with. Even with ice packs that have a felt-like feel to them… nothing works to my satisfaction.

My solution? Fleece bedroom socks… the kind with no skid protection.

I have a bunch of old fleece socks that have lost their mates. One pair has cute little doggy faces, but I’ve only one left. I slid it over my ice pack and it was PERFECTION.

Give it a try. Socks are soft, comfortable, they are easily washed and replaced, and you can buy fun colours to cheer you up when you’re having a bad pain day.

Fleece sock + ice pack = just right.

 

 

Snow Storm = Pain Storm and Musings on the Dead

Level 8 right now, but the burning has subsided as the snow storm that hit the East Coast has moved on.

I’m awake, but exhausted. I’ve been in this dream-like state all day. I know I’m awake, but if someone told me I was dreaming or had gone back to bed I wouldn’t be surprised. I’ve eaten a lot of food and very painful memories of the last few times I saw my mother before she died are floating through my mind, her emaciated form crumpled on a couch… at a window… on a hillside… in a car.

I dreamed about my mother the other night. She had come back to life and was once again corpulent and healthy. Before she arrived at the house I had a talk with my son about making the most of our time with her because she wouldn’t be back for very long. In the dream we all knew she had died of cancer, quickly wasting away and choosing to peacefully sleep rather than continue treatments. And in the dream she returned, knowing every detail of her illness and death and all she wanted to do was to catch up.

A psychic once said that this is how our loved once visit us once they’ve passed on… that they come to us in dreams. They check in on us. I really hope that is true. I cried for my mother recently, and then I had the dream. Whether it was my subconscious fulfilling a need, or a visitation, or something else… doesn’t matter. What matters is that it was the good I remember of my mother, the best of my mother, and not the collection of bitter, confusing memories I have of her. Somehow there is something important about that that I cannot place.

Or maybe it’s just the fact that, now believing that my mother was also autistic, I see my mother far differently in death than I did in life.

If It Isn’t One Thing It’s Five Others

I spent most of the week at level 10 pain. I piled pillows on my head to battle the tinnitus. I iced my head. I didn’t sleep for three nights in a row and couldn’t nap because I hurt so much. But, last night I broke my self-oath to not take Seroquel (due to the weight gain) and finally got to sleep. I woke up at a 7 on my migraine pain scale. I consider this a small victory.However, I’ve done something to my lower back. Perhaps I slept in the wrong position. I did spend the week in the fetal position. Who knows. Head feels less awful- back feels effed up.

Today I saw my Psychologist. His command to me was to get better. I am doing my best to  achieve “better.”

I also got a haircut today. Here are the problems with haircuts for a person with an active migraine and High Functioning Autism:

  • My face and scalp hurt, especially after days of level 10 pain. I feel like I’ve been punched repeatedly on the left side of the head. Therefore, having someone wash my hair, brush my hair, touch my hair, even just look at my hair the wrong way is damned agonizing.
  • Hairdressers attack you with small talk and questions about things that really don’t matter. Why does she need to know if I live in that part of town? That has nothing to do with the kind of cut I’d like.
  • If the hairdresser cuts my hair too short I get really upset. I’m talking meltdown level upset.
  • I hate that part where they spin you around as they dry and style your hair so that there is a “reveal” at the end.
  • Tipping is awkward. I always tip hairdressers 40-50% because if they ever cut my hair again, I want them to do it right. But I don’t have money to tip until I’ve paid the cashier. I don’t want to walk back to the hairdresser and interact with her again, so I have to hope that the cashier will give the tip money to my stylist.

It is my firm belief that there is an untapped service industry for people who don’t like small talk- hair salons and spas where they don’t talk to you. I’m not rude. I just don’t want to talk to my stylist past, “Do this, please,” and, “thank you.”