In a few hours, I’m getting my first occipital nerve block. Sunday I was elated by the possibility for relief, thinking about how, if effective, the treatment would change my life. Yesterday my thoughts changed from “would” to “could” and I became skeptical that it will help. Today I’m just hoping that it doesn’t trigger a migraine attack. This wide range of emotions, from an almost manic excitement to a dread of disappointment, is familiar territory — this is what I feel every time I attempt a new treatment. No wonder trying new treatments is so exhausting.
Mindfulness would eliminate (or at least drastically reduce) this emotional torment, if I could put it into consistent practice. Despite all the wonderful coping skills mindfulness has given me, I resist applying it in this situation. The exhilaration of irrational hope briefly alleviates the difficulties of life with chronic migraine. It counters the pain, nausea, dizziness and distressingly heightened senses of a migraine attack. It provides a glimpse of a glorious (fictional) future that I don’t consciously allow myself to think about, but such indulgence is OK in the context of exploring the outcomes of a possible treatment. Though brief, the high is wonderful.
Like all drugs, irrational hope has a horrible letdown that lasts much longer than the high ever could. Yet, I haven’t been able to break the habit, nor am I sure I want to even though it goes against my general philosophy for how to cope with chronic illness. Any attempt at a new treatment, whatever the outcome comes with a new understanding. For me, that is often the knowledge that yet another treatment has had no positive effect. Even if the treatment works — and I’m speaking from limited experience as I’ve only had two treatments be even slightly successful — there is a period of adjusting to the amount to which it works and the impact it has on one’s life. If I’m going to have to learn to cope anyway, acknowledging that my fantasy of a miracle cure hasn’t materialized isn’t much bother.
As I was procrastinating while writing this post, I saw on Facebook that How to Be Sick author Toni Bernhard shared this apt quote from Brother David Steindl-Rast: “People who have faith in life are like swimmers who entrust themselves to a rushing river. They neither abandon themselves to its current nor try to resist it. Rather, they adjust their every movement to the watercourse, use it with purpose and skill, and enjoy the adventure.” I love the idea of embracing such faith in life as I embark on new treatments. Right now, though, I’m too addicted to the high of irrational hope to entrust myself to the river.
I wasn’t able to edit this piece in time to get it posted before the nerve block this afternoon, which means I can fill you in on how it went. The injections were horrifically painful and I nearly fainted (apparently, this happens to about 10% of people). Good news: the block reduced level 6 pain and to a 3 within 10 minutes. Bad news: it was back to a level 5 within two hours and I’ve spent the rest of the day in level 5 or 6 pain. I’m hopeful that the injections just irritated the nerves and I’ll be better in a day or two.
I have had about 20 blocks. They last from 2 days to 2 mo. I am put under to have them done, other wise they are painful. I am happy for whatever painfree time I can get. I don’t know how long they can keep giving me blocks. I have had migraines 37 years and been placed on Social Security Disability this year for the Migraines. Good Luck to us all.
I hope you have had some relief since the injection day Kerrie. I have to travel out of town for my nerve blocks, which is kind of ridiculous given the number of perfectly well-trained anesthetists in our city who *could* do it but choose not to. The province pays for my travel and expenses, but I find the travel difficult.
Anyway, I have had four occipital nerve blocks over the past 18 months. I leave this coming Monday for my next round of injections.
I have found that immediately following the injections I have a few hours of delightfully decreased pain. My pain doc asks me to stay in an upright, seated position for about 6 hours following the treatment. This works out well. I usually sit and look out the hotel window, enjoying the sunshine without the pain!
By the time I hit 7-8 hours post-injection, I start to feel achy at the occipital injection site. Unfortunately, that achy feeling translates rapidly to an increase in head pain. This sort of freaked me out the first time around. I invested so much hope in this treatment and when I felt pain the same day I was devastated. The doc said to put some ice on the injection site and that has helped a bit. Now I start the ice before the “achy” begins. That initial post-injection hurt (for me) goes away by the next morning. I tend to wake up with a bit of pain, but not as much as the evening before.
The good news – overall, I started out with 3-4 weeks of less intensity and less frequent attacks following the injection. The length of time that I experience at least some level of relief has increased with each treatment. Now I can count on better days (if not perfect ones) for 7-8 weeks.
It makes it worth going back.
For me, once I accepted that I would get relief for a time, but not permanently….well, it made the whole thing a lot less stressful. I wasn’t frustrated with my body or my brain for once again letting me down.
It’s not perfect, but I’m okay with taking whatever relief this treatment will provide. It also helps if I consciously remember all of the past treatments that did nothing at all to bring relief. When I compare the nerve block to that laundry list of attempts, it looks much better.
Best wishes to you Kerrie. I do hope you get some positive results.
Thanks for sharing your story, Sue. Your success with nerve blocks is what propelled me to try them. So far, it seems that the injections have worsened the migraines for me. Yesterday was better, though, so I hope that’s the start to a period of improvement.
Take care,
Kerrie
Your story is so similar to mine, it was like you had written my story. I get my first injections on Tuesday. I cried at my last appointment at my headache specialist when he confirmed my long standing diagnosis of “chronic migraine” and realized the hope for some kind of relief was gone. I’ll try the injections and we’ll see. Thank you for reaffirming my thoughts and feelings about this illness and my life dealing with it.
Best of luck with your injections, Joann. Even with chronic migraine, there’s a chance of relief. I wish you the best of luck in your search for it.
Take care,
Kerrie