A Pained Life: Torn Between Hope and Fear

By Carol Levy, PNN Columnist

Tonight, I feel like the character Pushmi-pullyu from Doctor Dolittle. You know, the animal that has a head at both ends; one head pulling to go to the right, the other head raring to go to the left.

I’m also feeling torn between hope and fear.

Although I have trigeminal neuralgia, which is not a headache, I am going to be admitted tomorrow to the headache inpatient unit at one of the city hospitals.

The treatment I will receive is a 24-hour a day IV lidocaine drip, for 4 to 5 days.

Many years ago, I had lidocaine infusions but they were for only 3 to 4 hours each time. I tried it a few times, a few weeks apart, but there was never any benefit. On the upside, there were also no side effects.

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As I read the information online about getting lidocaine for a protracted period, I am getting nervous. Hallucinations? Uh oh. I don't think so. That scares me.

I already know about the potential heart risks. The doctor told me I will have to be tethered to a heart monitor the whole time as a precaution. A sudden drop or increase in blood pressure, unconsciousness and even seizures are possible.

I did not know about the potential for deep vein blood clots until I read the information the clinic sent me. I will have to wear anti-clot stockings the whole time.

There is a list of other “moderate” and “mild” side effects: a metallic taste, tinnitus (ringing in the ears), lightheadedness, agitation, drowsiness, problems focusing, slurred speech, and numbness of the mouth and tongue.

The more serious side effects worry me. Nothing happened when I tried lidocaine the other times, but maybe having it 24 hours a day for a few days in a row vs. 3 to 4 hours every few days makes a difference.

That’s where the Pushmi-pullyu comes from. I do not know if I want to do this.

This will be the first time in the last 13 hospitalizations where I will not be going in for brain surgery to treat my trigeminal neuralgia. I have to admit, there is probably an unconscious aspect of feeling as though I am allowing myself to do one more potentially really dangerous procedure, like another surgery, and I am putting that feeling of danger on the lidocaine.

On the other hand, the reason to go ahead is pure and simple. Bathing the nerves in anesthetic for 72 hours, maybe slightly longer, makes sense to me. The nerves will be numbed or at least calmed down. How can that not work?

My bags are packed. I'm ready to go.  So once again, hope wins out over fear.

Is that a good thing or bad? I won't know for a few days, but I wonder if instead of Pushmi-pullyu for those of us in pain, it should be Fearmi-hopeyu -- with the “hopeyu” being the stronger of the two.

(10/23/18 update: Carol reports the lidocaine infusion did relieve her pain for a while, but by the 3rd day, “I had some bad reactions that altered my reality perception, not what I would think of as hallucinatory but close cousin so we had to stop it.” Carol says she is very disappointed by the outcome, but it was “definitely worth the trying. And thank you to all who asked.”)

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Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 30 years. She is the author of “A Pained Life, A Chronic Pain Journey.” 

Carol is the moderator of the Facebook support group “Women in Pain Awareness.” Her blog “The Pained Life” can be found here.

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.

4 Infusions That Can Help Relieve Chronic Pain

By Barby Ingle, Columnist

I am so excited to finally be to my favorite letter – "I" -- in my series on alternative pain treatments. The “I” stands for infusions.

There are many different types of infusions, but the four I will cover are ketamine, immunoglobulins, lidocaine and stem cells. I have done 3 of the 4, and one of my good friends has done the fourth with great success. So I feel comfortable sharing what I know about infusions based on my personal health journey.

Ketamine

I was afraid of ketamine when I first heard about it. Ketamine was created in 1962, when it was first synthesized by scientist Calvin Stevens at the Parke Davis Laboratories. Ketamine is a potent anesthetic that blocks pain by acting as a N-methyl-D-aspartate (NMDA) receptor antagonist. It can also reset glia nerve cells in the spine and brain.

Ketamine is not appropriate for everyone. For me, I saw it as a chance to reverse the Reflex Sympathetic Dystrophy (RSD) that I had been living with since 2002.  My excitement was great, along with my family’s. My regular treating doctors were not so optimistic about ketamine, but were not discouraging it either.

I began receiving ketamine infusions in 2009. They put me into remission and I continue with booster therapy as needed. I still have flares, but ketamine got me through the biggest challenges of living with RSD. Here is a video of me after my initial infusion treatments, which many find motivational.

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Before I started getting ketamine infusions, they wanted me off opioids completely so that my nervous system would reboot better. Research showed that ketamine patients on opioids were not getting the same good results as people who stopped taking them. Since then, I have also learned that opioids also set off glia cells, which is not a good thing for nerve pain patients.

Immunoglobulins

Intravenous Immunoglobulin – known as IVIg --  is used to treat various autoimmune, infectious and idiopathic diseases. One of my best friends, who has multifocal motor neuropathy, uses it to stay functional.

I have not had IVIg yet, but if ketamine didn’t work for me, I would give it a try, insurance permitting. The cost per treatment is between $5,000 and $10,000, so for many it is not an option.

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If you have the cash, the FDA has approved IVIg for graft disease and idiopathic thrombocytopenic purpura (ITP). It is also used to treat patients with Kawasaki disease, Guillain-Barre syndrome, and polymyositis/dermatomyositis. I know a number of people who have used it for RSD.

One of the complaints I have heard from friends who use IVIg is that it takes time before your feel any benefits – sometimes days or weeks. If it is a viable treatment for you, there should be some changes in your symptoms and pain levels within 4 weeks.

However, some people do not respond to IVIg and it is very expensive to try just to see what happens. The cost is high because immunoglobulin products come from the pooled human plasma of a thousand or more blood donors, who have to go through an extraction process themselves before it can be processed and ready for use in infusions.

Stem Cells

Stem cell research could pave the way for an entirely new approach to chronic pain that reduces the current reliance on opioids and other analgesics.

I tried two rounds of stem cell infusions for gastroparesis, intestinal ischemia, heart valve dysfunction, cardiac ischemia, and temporomandibular joint disorder (TMJD).

The infusions reversed my gastrointestinal issues within 24 hours and my heart issues in 7 days, but it took longer for my TMJD to feel any relief. I did get some, just not as much as the other areas of my body. I also got improved function in my ovaries, with an increase in estrogen production I did not have before stem cell therapy.

The providers I worked with said it would take 6 to 8 rounds of stem cell infusions to help my nerve pain. I don’t have the money for that, so I stopped after two treatments.

Stem cell studies I have seen show great promise for multiple sclerosis patients, and I will be watching closely to see if it works for RSD and other neuro-autoimmune diseases. Stem cells could also be used as a tool to reverse opioid tolerance and opioid-induced hyperalgesia, two problematic side effects of opioid therapy.

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Lidocaine

Although my providers told me that lidocaine infusions are practically pain free, I can tell you they are not. The lidocaine infusions I was given were in conjunction with my stem cell therapy. I felt everything and came away feeling that lidocaine was not a good option for me.

My step sister did have good results from her 7-day infusions of lidocaine, so it goes to show that you have to check to see what works best for you.

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Lidocaine is an amide anesthetic and has a wide range of mechanisms of action. Research has shown that lidocaine, when given in a low dose intravenous infusion, has successfully provided pain relief for several chronic pain conditions that have failed other treatment modalities. A recent study in Pain Medicine found that lidocaine provided pain relief to 41 percent of patients, most of whom had neuropathic pain. 

According to providers at Stanford University, the success of lidocaine infusion is dependent on the specific cause of your pain. Some patients report immediate and long lasting pain relief, while others say relief came slowly and only lasted while the medication is being infused. Some patients also report unpleasant side effects.

The only adverse reaction I had – besides the fact it didn’t work for me – is that the infusion itself was extremely painful. Physicians have no way of knowing how you’ll react until you try it. By the time I was begging for help during the infusion, it was too late.

PNN columnist Crystal Lindell has been getting lidocaine infusions and they’ve helped Crystal reduce her use of painkillers. A recent study in Pain Medicine found that lidocaine provided long-lasting pain relief in 41 percent of patients, most of whom had neuropathic pain. 

I would be glad to share more of my experiences with infusions for anyone who has questions from the patient perspective. I would also love to hear your stories about infusions and whether they worked for you. 

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Barby Ingle lives with reflex sympathetic dystrophy (RSD), migralepsy and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the International Pain FoundationShe is also a motivational speaker and best-selling author on pain topics.

More information about Barby can be found at her website. 

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Getting off Painkillers With Lidocaine Infusions

By Crystal Lindell, Columnist

I keep telling myself I’ll write about my weekly lidocaine infusions when I finally have everything figured out. 

I just need to figure out how to pay the $80-a-week co-pay, figure out who can drive me two hours each way to the hospital, and figure out how to manage the extreme fatigue I endure for at least 24 hours after each infusion. And I need to figure out how I can possibly do this every single Friday for the rest of my life.  

And then, once I figure everything out, I can tell you guys how I solved all of it and you will think I’m awesome. 

But I can’t freaking figure anything out.

I started the infusions this summer at the suggestion of my pain management doctor. I did a trial run, which was completely insane, but actually worked to cure my chronic pain for six days. And then I decided to continue the treatments weekly, because that’s how long it lasts for me. 

The first infusion was intense. Symptoms included: randomly crying and laughing because I lost control of my emotions, my lips going numb, extreme fatigue, losing coordination in my legs, nausea, and not being able to make basic life choices afterward — to the extent that I couldn’t even pick out which rice I wanted at Qdoba.  

Thankfully, the symptoms seem to be less intense as you get more of the infusions. I’m still extremely tired after each one though, and unable to drive, and my heart always feels weak. Also, I still can never decide on which rice to get. But I don’t feel like I’ve lost my mind each time. 

Each one takes about two hours at the hospital from start to finish, but that also include a saline flush at the end. I also need a full 24 hours to recover from every single one. And it’s not like an “Oh, I’m so high and this is fun!” 24 hours. It’s more of a hangover/flu/fatigue 24 hours. 

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Also, like I said above, I have an $80 co-pay every week that I cannot afford at all. But actually that’s a great deal because the total bill for each one is about $500. I’m blessed to work full-time from home and have great insurance that mostly covers it. As far as chronic pain patients go, I’m probably in the top 1 percent. But it’s still too much for me. 

Honestly though, the hardest part has been finding rides. It’s a two-hour drive each way I’m and way too out of it afterward to drive myself. I have not been able to find anyone locally who does the infusions because the treatment is relatively new for chronic pain. And my town is so rural that we don’t even have Uber. If I ever have to stop the infusions, it will probably be because of that.

At this point you might be asking, “Crystal, this sounds like A LOT! Why are you even doing this? Why not just stick with hydrocodone?”

Because it freaking works. Really freaking well. And I kind of hate that it works because it is a traumatic experience every time, and I literally lose a day of my life every week and have no money. 

But dang if I haven’t had the best summer of my (post-pain) life this year. I’ve lost 33 pounds. I’ve been walking about six miles a day, six days a week. And while I still have some flares, I have entire pain-free days with NO hydrocodone or any other types of pain meds. And that means I get to live my life AND have complete mental clarity. In short, my quality of life has improved dramatically. 

It’s been miraculous. And thus, I am highly motivated to continue this treatment. 

Since starting the infusions, I have discovered a few helpful things. For example, drinking a full-sugar Gatorade and eating a Snicker’s bar right before the infusion seems to help with the fatigue. And doing a longer saline flush also helps with the after-effects. 

Also, the less I do physically the day of the infusion, the easier it is for me to recover afterward. And it’s important to wear extremely comfortable clothes and a large sweater regardless of the weather because the medication messes with your body temperature. 

I have not figured out the transportation yet, obviously. I actually called my insurance company today to ask if they had any suggestions, and they literally said, “Have you tried Googling it?” 

Yes. I have tried Googling it. 

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I also called the hospital and they told me the only transportation they do is with an ambulance. Cool. Thanks. 

I’ve called a million local pain doctors and infusion centers and had appointments with a handful of them trying to find a local provider. One pain doctor said he could do them for me once a month, but that’s not enough and I’d just end up going on and off hydrocodone all the time. 

Every time I talk to a new pain doctor I beg them to start or expand this treatment so that others with chronic pain can get the same relief I do. 

With all the anti-opioid hysteria you would think doctors would be begging patients to try treatments like this. But alas, they are still sticking to the classic list of things that don’t really work — mindfulness, Cymbalta, nerve blocks, epidurals, and my personal favorite: “You should be taking fewer meds but I have no alternatives to offer.”

In contrast, research is showing that lidocaine infusions can be very effective. In a study recently published in Pain Medicine, they were shown to provide long-lasting and adequate analgesia in 41 percent of patients with chronic pain, most of whom had neuropathic pain. 

I am holding out hope that treatments like this will become more common and less expensive. But there’s another part of me that does worry that pumping my body full of an intense drug every week could have long-term effects that haven’t been discovered yet. 

In the end of course, treatment decisions like this have to be made on an individual level. Only you and your doctor can decide if getting drugged every week is worth it for six pain-free days.

For me though, it definitely is. 

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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.

What It’s Like to Get a Lidocaine Infusion

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.

Researchers Develop New Painkiller from Lidocaine

By Pat Anson, Editor

A fast acting pain reliever widely used to treat everything from itching to dental pain could be developed into a new medication that offers longer lasting pain relief.

"Because of its versatility and effectiveness at quickly numbing pain in targeted areas, lidocaine has been the gold standard in local anesthetics for more than 50 years," said George Kracke, PhD, an associate professor of anesthesiology and perioperative medicine at the University of Missouri (MU) School of Medicine.

"While lidocaine is effective as a short-term painkiller, its effects wear off quickly. We developed a new compound that can quickly provide longer lasting relief. This type of painkiller could be beneficial in treating sports injuries or in joint replacement procedures."

Lidocaine is used as an injectable pain reliever for minor surgical or dental procedures, and as an over-the-counter ointment or spray to relieve itching, burning and pain from shingles, sunburns, and insect bites.

The new compound -- called boronicaine -- could potentially serve many of those same functions as an injectable or topical painkiller.  

MU researchers synthesized boronicaine as a derivative of lidocaine by changing its chemical structure. They found that boronicaine provided pain relief that lasted five times longer than lidocaine. In pre-clinical, early stage studies, boronicaine provided about 25 minutes of relief, compared to about five minutes of pain relief with lidocaine.

"Although some conditions may warrant the use of a short-lasting painkiller, in many cases a longer lasting anesthetic is a better option," said Kracke, who is lead author of a study published in the chemistry journal ChemMedChem . "Having a longer lasting anesthetic reduces the dosage or number of doses needed, limiting the potential for adverse side effects."

Other types of short term analgesics provide longer pain relief than lidocaine, but they also have side effects they can cause heart toxicity and gastrointestinal problems. Preliminary findings show no toxicity in single-dose studies of boronicaine, though more studies are needed.

"Boronicaine could have distinct advantages over existing painkilling medications," said M. Frederick Hawthorne, PhD, director of MU's International Institute of Nano and Molecular Medicine and a pioneer in the field of boron chemistry. "We're conducting more research into the side effects of the compound, but in time it could very well become a useful material to use as an anesthetic."