Episode 21: Escaping the Clutches of Prescription Dependency
"After I am done and off this drug, I don't think I ever want to go through this process again and I do not think I want to be on a drug that is harder to get off of than it is to get on. I don't want pain, but I don't want THIS more." - Me to my doctor while trying to step down from Lyrica.
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When I wrote about my decision to take Lyrica in my blog: Finding Balance: Fibromyalgia Treatment Options & Personal Control, where I explore medication benefits and side effects I said:
"I now have 6 month experience with it so far and I can say, for me, it works a little bit. It works fine to reduce pain a little bit and improve sleep a little bit. But, medication can only do so much and under stressful situations I don't notice it's positive effects at all. If I am entirely stressed out, I go entirely into a fibro-flare without question and this medication cannot combat that - I have too."
I was using it as prescribed, but I decided to stop taking it when it stopped working for me. About 4-5 months into using it, it had stopped working. Why take a controlled substance if it isn't working any more? I thought I would just stop taking it; but this is not how it works: you have to step down and taper off milligram by milligram, or face the potential, very uncomfortable effects of withdrawal. And it isn't as easy as I thought it would be:
"In many cases, you may become dependent on Lyrica and experience withdrawal effects after using the drug for an extended period. Those abusing the drug should slowly taper off Lyrica to prevent the more severe side effects of withdrawal, which can be quite uncomfortable. Sometimes these symptoms may be life-threatening and require medical care." - American Addiction Centers
WAIT A SECOND! WAIT JUST A SECOND! I did not sign up for this! I was NEVER abusing this drug. When I agreed to try pregabalin (generic for Lyrica), I was signing up for pain relief, not addiction! But, the jokes on me because getting off of this drug is hard. Just like finding the right therapeutic dose is different for every patient, tapering off of it is also different for every individual that is prescribed a controlled substance. This is really a challenge if the doctor doesn't know how to do it - as mine did not.
"If I had known about the incredible addictive properties of lyrica [sic] I never would have taken it. And the fact that I’ve had one medical doctor refuse to help me and another who is obviously uneducated about it makes the situation even worse. Combine that with the medical community touting this medication as the answer to the opioid crisis and you have the perfect storm." - William B. reporting on a Mayo Clinic Connect discussion board .
It Stopped Working
When I talked to my doctor about not taking pregabalin anymore, he was skeptical about whether I knew what I wanted. He reminded me that after I started taking it, I noticed considerable pain relief and suddenly, according to him, it didn't work anymore? To him, this didn't make sense. But, as I had only talked to him one time after I started taking it, my decision was not sudden. I noticed months before this last encounter with him that I was in a great deal of pain from my fibromyalgia, it wasn't getting any better, and pregabalin wasn't helping.
Looking back to the first days of taking this prescription, immediately, balance was a problem; this was the first thing I noticed. For context, in my everyday life I am a high school dance and English teacher. If I do not have my balance I fall in dance, and I bump into things and trip while teaching English. This was not good; I looked drunk. This did not get better as the months passed while taking this drug. As I see it, balance in all forms of the word is key in every aspect of your life - but especially in dance, and I no longer had it.
Not only that, since I started taking the drug, regardless of my efforts to combat it, I was gaining weight; I gained 12 pounds in less than 5 months on pregabalin.This was a surprising change since I had maintained a relatively stable weight throughout my adult life. And, pregabalin made everything I ate taste A-M-A-Z-I-N-G which resulted in a loss of my ability to recognize when I was full. I believe that pregabalin's interaction with the central nervous system may have inhibited the Dopaminergic function, which I don't fully understand, but may have lead to the malfunction of my stomach's "shut-off valve" for feeling full. Ultimately this lead to significant weight gain.
When I found that the negative effects of this drug outweighed the benefits, I decided it was time to try to get off of it. I had gained weight, my balance was terrible, and I no longer received the benefits of pain relief. So let's just stop taking it if it doesn't work, right? No. My doctor had an understanding that I should ease off of it just like I eased into taking it. But he didn't tell me how or give me any indication of how difficult it would be to taper off this drug. I ended up seeking a consultation from a pharmacist and although It's been weeks, the withdrawal symptoms, even as slowly as I am going, are disheartening and disturbing.
"Getting off drugs that affect the central nervous system can sometimes be challenging...The story of Lyrica (pregabalin) withdrawal is also murky. There is very little in the medical literature on this topic. The prescribing information does mention, though, that some patients report symptoms such as insomnia, nausea, headache, anxiety, sweating or diarrhea if they stop suddenly. The advice: taper the dose over at least a week rather that stopping suddenly." - The People's Pharmacy
TAPER OFF
The most important thing I learned was that I had to reduce the milligrams I was taking daily by tapering off little by little. If I had done it the way my prescribing doctor had advised by stopping the morning dose altogether and a week later stopping the evening dose, it is possible that I could have ended up in the hospital suffering from severe withdrawal symptoms. When I shared this with my pharmacist consultant, she appeared shocked and strongly advised I not follow those instructions. According to a study published by the National Institutes of Health, pregabalin dependence and withdrawal can occur even with short-term use at regular doses. Using her expertise, my pharmacist consultant gave me a process of tapering the drug that made sense and met the timeline I had to be free of pregabalin. It ended up being a 6 week process and still, I was not free of withdrawal symptoms. However, the symptoms were not dangerous, they were only annoying and uncomfortable.
Withdrawal Symptoms
As with any controlled and addictive substance, there isn't a predictable or expected set of symptoms I may have, but according to the American Addiction Centers there are typical symptoms that people have experienced with withdrawal from pregabalin including:
Headaches.
Anxiety.
Confusion.
Agitation.
Sweating.
Rapid heartbeat or palpitations.
Seizures.
Difficulty falling or staying asleep...
Behavioral changes.
Mood changes.
Depression.
Suicidal thoughts or behavior.
Nausea.
Diarrhea.
I am experiencing most of these with the exception of: confusion, seizures, mood changes, and suicidal ideation. But this still means I am dealing with a significant number of symptoms from withdrawal that are interfering with daily living. As a matter of fact, I am on the couch again for the 3rd day in a row "resting" with a headache, nausea, bouts of diarrhea, surges of anxiety and sweating, lots of sweating. Eating is quite the challenge as I have no appetite and my energy is non-existent. In other words, I am not at any risk, but I am miserable.
UPDATE:
It has been 5 days since writing the last paragraph and for the most part, my withdrawal symptoms have subsided. I am no longer glued to the couch writhing in misery, and aside from the occasional headache and fatigue, I feel almost back to "normal". My fibromyalgia pain is no worse, and because my stress level is low, I am relatively pain-free. My balance has returned and my appetite is getting better.
Still, I wouldn't wish this on anyone.
Although I felt I had support from my pharmacist (NOT my prescribing doctor), I still had to consult GOOGLE to get more information to help me move through the withdrawal symptoms safely. Because my body was dependent on pregabalin and I was not addicted (see dependence vs. addiction), it was difficult to find resources that went beyond checking myself into rehab for recovery.
As I was moving through these withdrawal symptoms, I had to remind myself that this was only temporary and to give myself grace. As the worst of the symptoms set in, I made a pact with myself that I would lay still if that helped, I would move about when I felt good enough , and go slow as long as my body needed me to do so. This was hard! I am active and productive to a fault in my everyday life so the difficult part about this, besides the physical suffering, was not kicking myself when I was down.
I also made sure to follow these steps:
Follow my pharmacist's advise
REST
Eat bland foods
Drink plenty of water and fluids that would replenish electrolytes
I have survived. The withdrawal symptoms have ebbed and flowed throughout the 6 weeks of tapering off of pregabalin but were the worst for me in the last week. However, 5 days after the last pill, it seems to be over and I am able to live life as I did before I began the process of getting off of this drug.
Final Thoughts:
I will never take pregabalin or a drug in this class again if I can avoid it. I do not want to ever take a drug that is harder to get off of than it is to get on. But, I would also never advise anyone against this prescription. As with most medication for fibromyalgia, what works for one person may not work for another, and vice versa. These are my experiences: it stopped working shortly after I started taking it, I lost my balance which was detrimental to my job, and I gained a lot of weight. None of this is good for me. The process of getting off of pregabalin was brutal, and had I not followed my pharmacist's advice, it could have been dangerous. I am glad I do not take it anymore and I am glad I survived the withdrawals unscathed.
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Karen Palmen, EdD is a veteran educator in Saint Paul, Mn. She teaches Dance and English at Saint Paul Central High School. She has an active TikTok page that features humorous, political, mental health, and educational content (kickin it with karen). And a a dormant YOUTUBE channel with the same name, featuring fermented foods and other cooking oddities.
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connect.mayoclinic.org/discussion/my-lyrica-journey/.
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