Lyrica, Nerve Pain & Side Effects

A little over a week ago, I cut back on my dose of Lyrica. Shortly before that, my pain specialist increased it from 100mg to 150mg per day in the form of 75mg capsules twice per day. The increase was to address a recent increase in nerve pain in my legs and lower back. It definitely helped. Although, I'm still not quite sure why it got worse recently in the first place. When I talked to my pain specialist, I asked if there was anything else I could do to manage nerve pain. Ice and heat both just seemed wrong. The only things I knew to do were to try to shift positions to reduce pressure on the affected area. Even that didn't really help much. She said no, that there wasn't much I could do expect to try more Lyrica. I was fine with that because at least I knew what to do or, rather, I didn't have to wonder anymore if there was more I could be doing to help. As it always does for me, the Lyrica worked fast. It made a huge difference in the nerve pain. 

Unfortunately, Lyrica comes with a certain amount of problems. First of all, it can be expensive. It started out between $50-60 per month with my insurance and that was with the discount for mail ordering it. Which, by the way, you absolutely must look into if your insurance offers it. I have a pretty good PPO with United Healthcare. They use a mail order pharmacy called Medco. They require you to use Medco for prescriptions you will take regularly and limit the number of times you can pick up those prescriptions at your local pharmacy. This rule, however, does not apply to controlled substances or any medications that you cannot refill for whatever reason. The wonderful thing about mail ordering your prescriptions is that they come in 90 day supplies but you only pay 2 co-pays instead of 3. It saves you one full co-pay every 90 days. That can mean the difference of hundreds of dollars per year for some medications. Anyway, the price of Lyrica has come down significantly for me over the last 6 months. But, when I increased the dose, the price increased too. Another problem is its many, many side effects. The biggest side effect is drowsiness. And it is not messing around. I get seriously, disastrously tired when I take it. When I was working full-time, I could only take it at bed time because I simply couldn't function through the fatigue if I took it during the day. When I stopped working, I immediately began spacing out my doses and taking it during the day. I think it made a difference in the amount of relief I experienced because a certain amount of it is release shortly after you take it. It is meant to provide continuous relief but I believe its bioavailability is such that a small amount is released shortly after you take it for immediate relief. Since I wasn't working, fatigue or drowsiness wasn't an issue and I was able to maximize the benefits of Lyrica. Another thing to consider is the benefit of keeping a drug like that at a constant level in your bloodstream by taking it at the same times every day. That is another way to really get the most it has to offer. 

Of course drowsiness is not the only major side effect of taking Lyrica. Other side effects that I experienced included weight gain, dizziness, trouble concentrating (though it's hard to blame Lyrica for that one since just about everything cause it) and dry mouth. Then, there is the risk of disrupting neurological processes. This isn't listed anywhere in the drug information but I think it's a fairly obvious one. Lyrica works on your brain and how it perceives pain. It deals directly with pain signals that go back and forth between your brain and nerves. So, it makes to me to think that it could possibly affect the brain in other ways too. It could be muddying the neurological waters and I can't really afford to do that. In my case, I've noticed a huge increase in what I believe are neurological problems like twitches, visual disturbances and cognitive impairment (again, who the hell could sort that one out from all the other possible causes). The twitching has gotten much, much worse in recent months. I do not yet know if it is truly neurological, why it has gotten worse or how it relates to Lyme. I do know that neurological impairments of all sorts come with the territory in Late Stage Lyme. However, I'm not certain that the twitching is included in that or if the fact that it's gotten much worse is an indication of something more. It is far worse at night. It happens throughout my entire body. It is constant and varies in severity. It cause everything from my legs, feet, arms and hands to my head and neck to twitch. Sometimes the twitch or spasm is mild. Sometimes, however, it causes an entire limb to move suddenly. When it is the worst is when it jumps around causing one part of my body to twitch then another and then another, in rapid succession for hours. I'm growing more and more concerned about it by the day. I really want to understand it and make sure that it is not an indication of something more serious. So, I was wondering if Lyrica could be connected somehow to the presence of new or worsening neurological problems. That was one reason that I thought cutting back might be a good idea. Plus, there's something a little unsettling about it, always has been. It's too new and no one knows what the long term effects could be.

Even still, the biggest reason I decided to cut back was to test a theory I had about urinary hesitancy. Until very recently, I've only ever had to deal with urinary hesitancy on a few occasions, both a result of medications. The first time was when I took Oxycontin for a few months last year. It was the first extended-release pain medicine I ever took. It caused noticeable urinary hesitancy but it was not nearly enough of a problem to stop taking it. Then there was the time I had my gallbladder taken out and suffered from a problem called "neurogenic bladder". Basically, the anaesthesia during surgery can cause a disconnect in communication between the brain and bladder. You feel the urge to go and can feel when your bladder is full but you are unable to actually empty your bladder. It is temporary and most common in men. That is why men are usually catheterized during major surgery and women are not. As with everything else, I was the exception. Lucky me. My bladder just shut down. Nearly 72 hours after my surgery, my bladder had still not kicked into gear and it was full that I looked like I was several months pregnant. It was at capacity and the pressure was intense. I called my surgeon who didn't listen to me and dismissed it as an infection. He called in antibiotics, which I never picked up, for a bladder infection I never had. I know that because I finally went to a local urgent care facility where they tested me for it and the result was negative. To my horror, they had to use a catheter and empty my bladder. I had to take a Xanax because I was freaking out. It is still, by far, one of the most humiliating experiences of my life. By the time I got there, my legs were swollen and I weighed nearly 8 pounds more than usual. They ended up drained nearly 2 liters from my bladder and told me that it could have ruptured. I was horrified but so relieved. I couldn't believe it. Think about it, 2 liters, as in a 2 liter of coke. Picture that in your bladder. Not fun. Worse than that, they told me that if it didn't start working on its own within 2 days, I would have to come back in and get setup for a catheter to be sent home with me. I wasn't having any of that! They gave me a few suggestions for how to kick start it and I took all of them. They said to exercise, avoid any medications with sedative effects-pain pills, muscle relaxers, lyrica, xanax-and drink plenty of fluids and monitor the situation. So, for 2 days I couldn't take much medicine for the pain which was a nightmare. I spent those days pacing around the house in an attempt to exercise. I hadn't exercised in years and it was miserable. It made the joint pain unbearable. But, it worked and my bladder finally came back to life. So, when I started having problems with urinary hesitancy a few weeks ago, I didn't waste anytime figuring it out. Lyrica was the only medication I had changed around that time. I wondered if the increase caused too much of a neurological disruption and somehow interfered with my bladder the way that anaesthesia did after my surgery. Shortly after I cut back, the problem went away. Now, I have no scientific evidence to support this, but I really do think it was causing the problem. Also, I lost a couple pounds right away when I cut back. Nice! 

My plan for cutting back was to see if doing so would relieve some of the side effects but still be enough to keep the nerve pain manageable. I decided to cut out my bed time dose and take only one 75mg capsule in the morning. I wondered if it was necessary to take it at night and if it might be a waste while I sleep. So far, things have been just fine. The nerve pain is reasonable most of the time and some of side effects have gone away. I'm going to stick with it and see if I can handle the lower dose. I figure that it's always worth trying to get by on less medicine. And again, it just makes me uneasy to take such a new medication. I'll be glad when I get to stop it for good. 

Now, don't get me wrong, Lyrica is a miracle drug. It works immediately and completely for me, like actual magic. You can read my testimony in the "How the Pain Started" posting next time you've got several hours to kill and a box of tissues. It's incredible stuff. As you'll see if you read that post, it pretty much saved my life once.