By Crystal Lindell, Columnist
So I’m kind of annoyed at the wellness people out there for making the word “infusion” sound like something vitamin-related that rich people get at the spa right before a couple’s massage and a facial.
That is not what an infusion is. At least, that’s not what a lidocaine infusion is. It’s also not a shot. That seems to come up at lot. Everyone thinks I went into the hospital, got a quick shot in the arm, and then went to Chipotle. Again, that is incorrect.
I recently got my first lidocaine infusion at the recommendation of my pain specialist and my primary care doctor. They were hoping it would help me with the daily pain I have on my right side from what they think is intercostal neuralgia — basically I always feel like I have a broken rib.
I was really apprehensive about trying it though, and the only reason I agreed to do it was because my primary care doctor strongly encouraged me to try it and I trust him. We’ve been through some stuff together and he has always seemed to have my best interest at heart.
He said of the like five people he knew who tried it, all had found success with it. I’m pretty sure he also is hoping to get me off opioids because it’s a huge hassle for him to write a hydrocodone script these days — all sorts of government regulatory boards are involved and he has to check a drug database every time to make sure I’m not coming up with a red flags. But I get that — I don’t actually love being high all the time either.
The way the lidocaine infusion was explained to me was not super encouraging though. Basically, they give you an IV at the hospital infusion center, and you have to sit there for an hour while they slowly pump the medication into your system. Then, at least for the first visit, you have to sit there for another hour after that and get a saline solution to keep the line open. Then they do a blood test and send you home. Also, you have to bring someone with you the first time, in case you can’t drive home afterward.
If it works, you have to go in every month and do it again.
The doctors told me that they don’t even really know why lidocaine infusions work because the effects seem to last longer than the drug should even be in your system. But they think it somehow blocks pain signals in your body.
On a personal note, I was apprehensive because I spend most days dreaming of living in Paris, and I didn’t want to be dependent on something that I’d have to do monthly and that might not even be available in France. In fact, Paris is why I want to get off the hydrocodone in the first place. It’s harder to get opioids over there.
But, like I said, my PCP was all about this infusion, so I decided to do it. They told me I could expect things like numbness and tingling in my fingers, toes and my mouth, a metallic taste, lightheaded, and a feeling of cotton in my mouth.
And, depending on how it went, I also might get nauseous and dizzy. But, they made it sound like all the side effects would go away as soon as they stopped the infusion, and that I should be fine as soon as it was over.
They did not tell me I would feel like I had been drugged.
I mean, I guess, looking back, feeling lightheaded is kind of along those lines, but the feeling is way more intense than that. At least it was for me.
I brought my mom and sister with me, and thank God I did, because the whole thing ended up being a lot more traumatic than I was expecting.
When they started the infusion I was actually FaceTiming my best friend, who said she could literally see the effects of the lidocaine on me in the span of one sentence. My speech got slower, my head got heavy and I could not think clearly.
“I... don’t... think... I.... can..... talk....... anymore,” I told her.
“Yeah, I know,” she said before wishing me luck and hanging up the phone.
I don’t know why I was not expecting such an intense reaction, but I wasn’t. About 10 minutes in, I literally started crying for no reason. And the reason I know I had no reason to cry is that I remember telling everyone around me that I didn’t know why I was crying.
When I started getting really nauseous, they did stop the infusion and give me some graham crackers, which helped. But as soon as they started again the drugged feeling came back.
The nurse at the infusion center said a lot patients describe it as having too many cocktails. So it’s past that fun one-or-two-glasses-of-wine stage, but just shy of the blackout-drunk stage. Add in that it all feels like it’s happening against your will, and it’s not exactly a fun two hours.
Also, my legs turned to jelly, and I couldn’t think clearly at all. I was literally so naïve going in that I honestly thought I might be able to get some work done while they were doing the infusion. I was not. All I could manage was lying on my back, asking everyone around me if my lips were swollen, and closing my eyes.
Overall, it was a lot more like going into the hospital for a small procedure than I was expecting it to be — traumatic, time consuming and hard on my body.
When they finished everything, they just let me get up and walk out of the hospital, but I should have had a wheelchair. My legs did not seem to work at all and my brain was in a fog. I felt like how people in action movies look when they’ve been drugged and kidnapped against their will.
I was hoping to go home and sleep it off, but I woke up the next day still feeling pretty drunk. All told, it took about 15 hours after the infusion before I felt like I had my brain back.
Did It Work?
Of course, none of this really matters. What really matters is whether or not this thing worked. And I have to tell you it did — for about six days.
Then, on day seven I woke up at 1 a.m. feeling like someone was stabbing my ribs and I remembered how much chronic pain sucks. I spent the whole day on hydrocodone trying to get my pain under control.
Those first six days were glorious though. I would literally wake up pain free. Healthy even. And I got so much done around the house. I did the dishes, I vacuumed. I went for walks without any pain at all. My body felt like it did before I ever had intercostal neuralgia. It was incredible.
Today is day eight, and I haven’t taken any hydrocodone yet, but it’s early and who knows how I will feel later.
Maybe day seven was just a fluke. Maybe it was the weather related, or maybe it was because I ate too much sugar and it spiked my inflammation. I don’t know. I’m seeing my pain specialist again in a couple weeks, and we’ll decide at that time if another infusion makes sense for me. I hoping she will tell me that the more infusions you get the longer they last, but I have no idea if that’s the case.
Whether or not it makes sense for you is another matter altogether. It depends on what type of pain you have, what types of drugs you are already on, and what your feelings are on being drugged.
I will leave you with this though. The nurse at the infusion center said they are getting way more patients for lidocaine infusions for chronic pain and she thought it was directly related to the push to get people off opioids. The nurse also admitted that the lidocaine doesn't work for everyone, and she was seeing lots of patients who had been managing their pain with things like hydrocodone for decades suddenly being forced to get off them. She said it was hard to watch patients suddenly lose access to drugs that had been helping them.
But, she also said that for some patients the lidocaine infusions were life changing and a miracle.
Pain is complicated and how we treat it has to be complicated as well if it’s going to be effective. Maybe lidocaine can help some people, but maybe opioids are the only thing that help others. And maybe, as most of us already know, everyone is different.
Crystal Lindell is a journalist who lives in Illinois. She loves Taco Bell, watching "Burn Notice" episodes on Netflix and Snicker's Bites. She has had intercostal neuralgia since February 2013.
Crystal writes about it on her blog, “The Only Certainty is Bad Grammar.”
The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.