Thursday, July 5, 2012

A Disappointing Conclusion

I'm getting into the habit of not updating this blog because I have no good news. But really, the purpose was to document my journey with neurostim; not to document only the good times with neurostim. Because truthfully, there haven't really been any good times.

So I'm officially declaring it, I consider the stim a failure. I've yelled, I've cried, I've felt sorry for myself, and I've cried some more. But the truth is, my nerves don't seem to like the stimulation.

I no longer turn the stim on because it makes my pain worse when it gets over a 6 on the pain scale. That happens daily, so it just makes more sense to never have it on. I'm not planning on taking the stim out any time soon, because I want to give my body some rest time. I've been down and out for a year now with these surgeries; unable to function like before. My muscles are atrophying, I'm dependent on a walker, and I'm in more pain than before this all started. I just want to rest. Also, I still have a teeny tiny glimmer of hope that if I give my nerves a year to settle down, maybe they'll be more responsive to stimulation.

What am I doing for the headaches in the meantime? Well, I had to go back to the ER again for a trigeminal migraine that went on for 5 days. Three IV doses of dilaudid & an IV dose of phenergan & Benadryl did nothing, so the ER doc sent me home with a Fioricet prescription (combination of Tylenol, butalbital, & caffeine). After getting the ok from my pain doc, I gave it a shot. On its own, it didn't help. But when taken in concert with my normal breakthrough meds, it finally stopped the migraine in its tracks! So my pain doc agreed to give me a script as long as I don't exceed 2 pills/day. Butalbital is a barbiturate. It's very sedating, but it actually seems to decrease the pain instead of just distracting me from it like opiates.

However, my pain doc is not happy with the turn of events. ER visits and failure of another 2 nerve pain medications are causing them to wave the white flag & insist I see a new neurologist. This irritates me a lot because I've already had a full neuro work-up & was relegated to pain management because there's not much else you can do for occipital neuralgia. I did confront my doctor with my concerns and she said they felt like they've done everything they can do. My internal response is, "Seriously?!" I feel like I keep getting punted back in forth between neuro and pain management. But to show my good faith, I made an appointment with the new neuro later in the month. Really, there's no harm in seeing new doctors because my current ones seem intimidated by the complexity of my pain.

I wish I could say that I'm calm & serene, but truthfully I'm scared and I'm frustrated. I really let myself hope that the stim was going to change my life. I'm not giving up on this fight; I'm just more battered and hesitant than before. I have no idea what is on the horizon, so really I'm just trying not to look ahead too much. I'm trying to focus on the here and now, because that's the only moment I can control. I struggle to stay in gratitude, but when I feel my worst I force myself to tweet a gratitude list. It keeps me from slipping into too much self pity. It's a reminder that even though things seem dark, my life isn't all bad. I have a few fantastic friends, I just celebrated my 9 year anniversary with my boyfriend and amazing caregiver, I have the world's best niece, my cats are healthy, and I have a comfortable bed and central A/C to give me a place to rest and recover. And did I mention I received a gift of the world's coolest socks?

Unicorn and Ninja Socks FTW!

I'm not sure about the future of this blog. I'm feeling pulled to blog more about chronic illness and how I cope with it than just focusing on the stim. My guess is I'll start a new one but still stay in touch here when headache news comes up. I hope I helped someone by documenting my experience, but I do worry that all I did is scare people that the stim is going to fail. So let me be clear: I do not regret getting the neurostimulator implanted. It was something I had to do. The neurostimulator offers drug-free relief from pain. I needed to try it. I just did. I don't regret a single treatment I have tried for that matter. Each time a treatment fails, that just gives me and my team of docs more answers - even when the answer is, "Don't try that again."

Please keep contacting me with questions if you have them. Check out the other occipital nerve stimulator blogs I have listed on my page. Just don't give up hope. We can't stop fighting.


  1. I'm so sorry you have had such a hard time. I hope you do feel better with just taking a break and resting. I don't blame you for not jumping into another surgery (removal). I know you are like me and have probably tried about everything else possible so I don't want to annoy you by asking you if you have tried the obvious things yet. That is so frustrating for me anyway when people do that to me. I just had an appointment with an amazing chiropractor that performed a new treatment (to me anyway) called biocranial treatment (some people call it craniosacral therapy). I slept like a baby last night and while my headache is here it is different, lessened in intensity. Just wanted to mention in case you have not tried that. Good luck on your visit to the new neuro. Maybe he/she will have some new ideas.

  2. Can I just say, and I know I'm jumping in here on a random page, but I've been reading all of your blogs, and if I didn't know any better, I would think someone is writing MY BIOGRAPHY!! this is so much like me, it's scary. And I'm just now going in for the occipital stimulator implant! In about two weeks. Which is why I'm here reading all of this, and now I'm really freaked out and scared it won't work. Wow. Well, back to reading your blog for me....take care! (I may actually email you soon! :) )