Living Around Pain

My son is about to leave for his busy summer of camps, mountains, and road trips. All together, he will be gone for six weeks, so we really wanted to make these past few days special. We made family plans to go to dinner and then go do something fun Friday night. Today, Saturday, we planned to run errands separately and relax before a long drive tomorrow.

My brain had other ideas. Friday was a level 10 pain day. Today hasn’t been much better.

I’ve been in the 8-10 pain range solidly for the past 6 months. I’m more than used to moving things around on the calendar because getting out of bed isn’t an option from one day to the next. However, I really wanted to spend some enjoyable quality time with the boy.

Rescheduling and cancelling plans is always disheartening. I cry a little nearly every time. It alienates friends and family, and, honestly, for long stretches of time it even feels easier to avoid making plans at all. I always hurt. It’s just a given these days. I do my best to hide it when I can get out and pretend to be human, but I spend most of every day in bed dreading the preparation it takes to put my human mask on. Letting the pain “win” isn’t a way to live, however.

Friday night my husband made frozen pizza for us for dinner and I did a DHE injection. Today, a level 8 day, we beat the pain by finishing up my son’s camp shopping as a family. Then, instead of going to a special dinner out somewhere, we got take out. We also got toppings and ice cream to make sundaes and watched a television show we always watch together. Dinner and dessert at home is much less impact on me, and we still spent some good time together.

I could have spent the weekend being bummed about how much I hurt and how it took my time away from us… but instead we took the time back and made the most of it.

And that is how you live around pain…

… you make the most of it.

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8 to 2 – My First DHE Injection

I’m kind of a wimp, but I’m also really adventurous about some medical things… so long as they are happening to other people. For example, I love performing minor “surgeries” on any interesting blemishes that pop up on my husband or son. Anything that’s too persistent gets sent to the dermatologist, however I don’t min blood and puss and ew when it’s sterile and I’m providing what I consider to be a “service.”

When it comes to my own body, I’m not so adventurous. It took me a long time to shave because I was afraid of razors. I am an obsessive plucker, I confess, and I often spend too much time fiddling with my pores. When I was in my teens I went through a brief cutting phase, not because I was self-harming, but because I was fascinated by blood. Needles, are another matter.

Needles.

Needles, needles, needles.

When I was a little girl, nurses used to have to hold me down to give me shots. When I was pregnant or when I gave blood, I frequently became faint from the idea of needles. After so many stints in the hospital between stays and infusion treatments, I feel like the human pincushion. Needles have not gotten easier to stand.

I have DHE in two forms: nasal spray and as an injection. The nasal spray is okay. It takes me down a few bumps on the pain scale, but it isn’t very strong and it ruins my sinus cavity. The injection form has not been available through my pharmacy until recently, so I’ve had it on hand, but have been trying not to use it. It’s allergy season right now and I’ve been sniffing and coughing.

And so… needles.

The DHE injection is an intramuscular injection which means that the needle is really long and I have to push it into my thigh. It didn’t hurt going in, but it burned like crazy.

I was at a level 8 on the 1-10 pain scale when I gave myself the injection. I am now at a 2. It was entirely worth it. It worked quickly. I did have to take anti-nausea medication with it, and I did have intestinal distress just after the injection. I expected those things. After about twenty minutes I was able to eat dinner and now I am sitting up in bed and writing this blog. I think that’s a great rescue.

I’m exhausted. I hope that I continue to sleep well tonight.

Current Jefferson Headache Center Treatment Plan (May, 2014)

Here is my updated treatment plan including some new additions to the pill box. Lexapro, which I took for a while in 2008 (sample packs- I stopped antidepressants when I found out I could not take Lexapro under my prescription plan without first trying other medications to get Lexapro approved. I have trust issues,) is something that I do very well on and has great anti-anxiety benefits. I’m taking iron because I’m borderline anemic. This is the plight of the vegetarian. Even when I take iron I have trouble absorbing it. My body just doesn’t like me very much. You’ve read the title of the blog, after all.

Dr. M. has given me Tizanidine for insomnia, but it is listed on my plan as a rescue medication… basically the principle is, “When in doubt, knock her out!” Two knock me out in half an hour and keep me asleep all night. One knocks me out in half an hour but I wake up in an hour or two all druggy. Half of one doesn’t phase me. I’m working out the dosage timing kink so I know how to use it.

I talked about Butterbur already in my last post… that leaves Biofeedback and I will explain Biofeedback in a later post, you know it takes a while for me to share all of my Headache Center knowledge once I’m home.

Jefferson Headache Center Treatment Plan

Preventative Mental Healthcare

  • Biofeedback sessions for 10 minutes daily

Acute Attack – Mild Headache (1-3 on a 10 point scale)

  • Ice
  • Shower/Bath
  • Relaxation
  • Distraction (Ukulele, anyone?)
  • Rest
  • Change environment

Moderate Headache (4-6 on a 10 point scale)

  • Reglan (Metoclopramide) 10 Mg, one pill four times a day as needed (max three days per week)
  • Midrin, 1-2 pills twice a day as needed (max three days per week)
  • Medications can be taken in combination

Severe Headache (7-10 on a 10 point scale)

  • DHE injection, 1 mg into the muscle as needed (may repeat in one hour, max two days per week, two shots per day)
  • This can be added to medications for moderate headache

Severe Headache (when all else fails- they’re getting as desperate as I am! It’s adorable)

  • Tizanidine 4mg, one pill twice daily as needed for severe headache (and/or insomnia)

Daily Medications

  • Topamax, 100 mg twice daily
  • Butterbur, 75 mg twice daily
  • Klonopin, 1 mg daily at bedtime
  • Lexapro, 10 mg daily
  • Iron, 325 mg daily

Current Jefferson Headache Center Treatment Plan

I know, I know- it’s been a long time coming. I’ve been finishing up a class for school and dedicating my time to that and friends and recovery. It’s that same old tune about a girl who has a really bad headache for a long time and writes about it constantly, but then gets better and tries to resume living life to the fullest again.

Can you blame me for using my functional time somewhere else?

So here is the current plan of attack I’m on. Right now I live in the 4-6 range on almost a daily basis, with the occasional 1-3 day or 7-10 day thrown in just to mix things up. This is a vast improvement from living with 8-10 pain nearly all the time, as you can imagine.

Jefferson Headache Center Treatment Plan

Acute Attack – Mild Headache (1-3 on a 10 point scale)

  • Ice
  • Shower/Bath
  • Relaxation
  • Distraction (Ukulele, anyone?)
  • Rest
  • Change environment

Moderate Headache (4-6 on a 10 point scale)

  • Reglan (Metoclopramide) 10 Mg, one pill four times a day as needed (max three days per week)
  • Midrin, 1-2 pills twice a day as needed (max three days per week)
  • Medications can be taken in combination

Severe Headache (7-10 on a 10 point scale)

  • DHE injection, 1 mg into the muscle as needed (may repeat in one hour, max two days per week, two shots per day)
  • This can be added to medications for moderate headache

Daily Medications

  • Mexiletine, 150 mg, three times daily
  • Topamax, 100 mg (50 mg morning, 50 mg evening)
  • Klonopin, 1 mg daily at bedtime
  • Indomethacine, 1 daily as needed
  • Propanolol, 80 mg