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.

Heat Intolerance

After doing some research, I am pretty convinced that I suffer from ever-worsening heat intolerance. Heat intolerance is pretty common in chronic illnesses like Late Stage Lyme, Graves' Disease and, especially, MS. For as long as I can remember, heat has been a problem. It used to be that being in the heat was simply uncomfortable and embarrassing. I've always been pretty fair and knew better than to spend much time in the sun. I've also lived in Florida my entire life, an unfortunate situation I hope to correct as soon as possible, so staying cool and out of the sun has never been easy. 

For the longest time my biggest frustration with the heat was how much it made me sweat. I always seemed to respond more quickly and dramatically to the heat than everyone else. It takes only seconds outside or in a hot car to leave me drenched with sweat. It's frustrating and embarrassing because it's always hot and I'm always the one with the problem. It makes it impossible to feel clean. And since it is hot 99% of the time in Florida, I never seem to get a break. I've really never met a single person who suffers from this sensitivity to the degree that I do. Years went by before I learned that it was connected to a larger problem. But even after my diagnosis with Late Stage Lyme Disease, I still never met anyone else who had such a problem with the heat. Sure, I knew people who disliked or were made uncomfortable by it, but never as badly as me. No one I know has to go to the lengths I do to manage the heat. I wear undershirts and a good antiperspirant daily. I cool my car down before I get into it. When I drive, I blast the AC then gradually raise the temperature as I get close to my destination to avoid the shock of the change in the temperature when I get out. Even these few measures seemed a little excessive at the time.

But that was all before. Things were manageable, kind of, before narcotic pain medications and the progression of the disease. A common side effect of narcotics, along with some other drugs, is increased perspiration. Perfect. The progression of this illness has brought me tons of new symptoms and caused an exacerbation of every single old one as well. Shortly after my diagnosis of Lyme, I had a doctor who instructed me to avoid ALL sources of heat including the sun, hot cars, saunas, hot baths or showers, heating pads and even hot drinks. It was my understanding that the heat can make the infection worse. Plus, I learned early on that heat was not the way to handle my joint pain. The few times I tried it, it made it much, much worse. Ice has always provided instant relief for my particular brand of joint pain. But, maybe she just meant that heat intolerance is common in Lyme and not worth the frustration. Maybe she was referring to what she knew was my rather severe heat intolerance. But now the heat intolerance has become almost unmanageable. First of all, there are lots of new things I have to do to to try to get back to the level of discomfort I used to enjoy. The new procedure has involved getting an even better antiperspirant, never getting into a car before it's cooled down, getting tinted windows, bringing ice packs with me in the car even when I'm not in terrible pain, avoiding wearing light colors because even undershirts aren't enough sometimes, wearing light-weight cotton skirts even at home where it is never cool enough, putting up blackout curtains in my bedroom, putting a small fan in the bathroom so I can attempt to put my makeup on, carrying a paper fan everywhere I go to fan myself when I get desperate, asking everyone I know to turn their AC down and, finally, taking Xanax sometimes solely for its ability to reduce sweating (seriously, it's pretty cool, check it out:  http://www.medicinenet.com/alprazolam/article.htm). It's fucking exhausting keeping up with all of it. Even with all of that, I still can't always manage to stay cool. It's actually gotten so bad in recent months that I avoid all plans, appointments and errands in the afternoons. I also can't take showers in the afternoons because I know I will never be able to cool back down. I try to do as much as possible in the evenings. 

About a month ago, a new type of episode started suddenly. To avoid confusion and simply because I like the way it sounds, I will call them 'spells'. The first spell happened after a late afternoon/early evening dinner during which we were seated outside. It was an extremely hot day and I was outside for nearly 2 hours. I knew it was going to be a problem so I took a xanax, used my paper fan and drank ice cold water the whole time. Then, out of nowhere, I felt like I was going to pass out. I don't mean I felt tired, I literally was going to faint. I had this overwhelming, desperate need to lie down. I also felt extremely weak, heavy, tired, thirsty, nauseous, and panicky. The panic turned into a full blown panic attack with hyperventilation, despite the xanax that I originally took to keep the sweating to a minimum. The weakness was the most startling and severe symptom. I had to be driven home. I laid down in the passenger seat of my car and got directly into bed when I got home. Actually, I had to be helped out of the car and into bed because I felt so weak. Well, really, I had to be held up and steadied just to walk into the house like a frail old woman. I could kind of make sense of everything, except for the nausea and panic. I assumed that I had overdone it and that I just needed to rest. I knew the perils of wearing myself out during treatment. To make matters worse, I spent the whole first part of the day baking the cupcakes I brought as a gift to the dinner. I knew it was a bad idea but I couldn't have known it was going to cause such a breakdown. 

Then, a few weeks later, it happened again after a short errand in the afternoon. Again, it was a very hot day, but I thought I had done everything necessary to pace myself and stay cool. So, I didn't see a problem with running a few errands in a row. By the time I got the second store, I felt a spell coming on. It started as agitation, fatigue and lightheadedness, all of which are so common that I didn't even know something was wrong right away. I sat inside in the air conditioning to rest but it was too late. It quickly turned into a full blown episode- just like the first one-with weakness, nausea, exhaustion, heaviness, panic and extreme thirst. I took a xanax for the panic but it was too late.  I still had to ride out the worst of the panic attack in the stall of the women's restroom, sobbing, shaking, and hyperventilating. After about 20 minutes, and a lot of cold water, I felt better and was actually able to do a little shopping. It wasn't as bad as the first spell but it wasn't good either. Since then I have many similar but less severe spells. But still, I couldn't make sense of some of it. I couldn't understand why I felt so nauseous; it didn't seem related to the rest of it. I also didn't know exactly what the common thread was so I didn't know when it was going to happen or how to stop it. I thought it was just exhaustion or a result of treatment wiping me out. I had been more aggressive with antibiotics, getting up to 400mg of Doxycycline and 250mg of Flagyl everyday. These were the highest doses I'd taken and they were hitting me pretty hard.

It was not until I happened upon some articles on heat intolerance that I finally figured out what was happening. I thought about each of the "spells" and realized that the common thread was heat. I read that many people suffering from later stages of Lyme Disease have a very difficult time with heat. In MS, heat can exacerbate a patient's symptoms and leave them exhausted, weak, and incapacitated. Heat can speed up the metabolism, along with everything else, and raise the body's core temperature too much. Many patients find that once they cool back down the symptoms get better or go away entirely. There is even a product called a cool vest designed to keep your core body temperature down so you can go about your day even when it's hot.

Check out these designed specifically for people with MS:

http://www.coolvest.com/RPCM_Cooling_Vest/Therapy.aspx

So, I started to think about my experiences. I remembered how hot it was at dinner that day, how running just one errand in the afternoon could knock me out. Then I thought about showering in the afternoon and how it was always so hard to cool back down. I also remembered how sometimes I felt like I was going to pass out at work, always in the afternoons. Finally, I started putting everything together, remembering how quickly and easily just a little exposure to heat has been knocking me out lately. It has become pretty debilitating. I have all but given up on functioning in the afternoons. But now that I understand it better, so I can at least anticipate problems and try to adapt to it. Finally, the nausea and panic make a little more sense. The higher doses of antibiotics were causing constant nausea so I think the heat just kicked that into overdrive. The panic attacks make sense too since heat can cause an increase in metabolic rate. So, I am going to test this theory and probably make some more changes. From what I can tell so far, I can recover from a little bit of heat exposure if I am careful to cool myself down quickly. For example, I took a shower in the afternoon yesterday but I made sure to pull the AC down, leave the door open and immediately lie down in front of a fan for a while after. Once I cooled back down, I was able to get up and enjoy relative comfort. I think some of the spells were simply too enormous to bounce back from that quickly. These left me wiped out of the rest of the day. But, I think if I'm really careful, I'll be able to avoid them or at least keep them from getting that bad. At the very least, I better understand what's happening. It's so much worse not to know what's going on or how to anticipate problems. The part I don't understand all that well is why it's been so much worse lately. I'm going to check with my doctor and see if he has any ideas. In the meantime, I'm going to do some more research and try to come up with ways to get through this god forsaken summer in Florida. I have already had to come up with so many little tricks to make leaving the house manageable. The thought of adding anymore is daunting. Oh well, here we go.

I'm really, really tired today. I'm just wiped out all the time lately. I sleep so much and am still so tired. I feel woozy all the time now. Leaving the house feels weird, just really weird. It's like that disconnected feeling you get after you take cold medicine. Running a quick errand leaves me breathless and heavy and exhausted. I feel like I'm seeing and moving through water, like I'm sleep walking. Even getting up to go into the kitchen last night felt bizarre. My face looked tired, like when you have a cold, and my voice sounded like I had just woken up all day. Lights seemed too bright, I was really jumpy, I had constant muscle spasms and twitches and everything was too loud. It was especially bad late last night. After 4 or 5 hours of not moving at all, I felt like I was inhabiting another body. When I dragged myself out of bed to use the bathroom and get some water, I felt like I was moving through water. I had been unwilling to move for so long, even to pee, that my bladder was so full it hurt. Moving and not moving felt weird. I wish I didn't have to be awake at times like this. I just want to be knocked out for 6 months and wake up when it's over. But, that's assuming that it will ever actually be over. Lately, I've been wondering about that a lot.  What if this 6 months doesn't help? What if I actually have MS and not lyme? What if? I worked so hard to accept this illness and move on with my life, but then this 6 month break happened so I put all that on hold. One of my antibiotics makes me cry and feel overly emotional and the other causes panic attacks and constant anxiety. The combination is really messing me up. I stopped them a few days ago. I'm going to take a break. I can't stand feeling upset all the time over nothing. But, drugs or no drugs, sometimes I get little flashes of the full weight of what I'm going through and I nearly collapse. I guess most of the time I deal with it in little pieces. There's a huge amount that I'm used to and then moments of severity throughout the day. So, I have general pain and fatigue today with episodes of severe, overwhelming exhaustion or feeling like I might pass out then flare ups of SI joint pain then maybe a little extra muscle pain in my neck. Then, an hour later there's blood sugar to deal with then maybe I have a stomach ache. I can deal with it, kind of, in little pieces like that. But every once in a while, and lately way more often than that, I think about it all at once and it makes my stomach drop and gives me chills. It's too much. All of it. The panic is obviously making it worse than it really is and there are pills for that. But there aren't pills for the fact that the weight of all of this is crushing sometimes. How the hell is this real? What am I doing ever getting out of bed or attempting to accomplish or learn anything? How is it possible that so much can be wrong with me? I've been thinking about it a lot more lately. Sometimes it just doesn't seem real. I'm so frustrated and sad I could scream. I can feel a true panic attack coming and I don't even care enough to try to stop it right now.

It's been an hour or so since I wrote this. I had a meltdown. I vented and cried on my mother's shoulder. Literally, she hugged me and I cried on her shoulder. Then we sat and talked about everything. I made a hundred different points, each one at a frenzied pace, each one leading to another. I kept saying, "what it comes down to is ______." Each time I filled in the blank with some revelation or question. Usually, just being asked what's wrong and saying it out loud helps. Sometimes I need real advice and direction but more often than not, I just need to get it out of my system. This time, I listened as she told me story after story of how she dealt with extreme poverty, despair, divorce, and a spinal injury when she was raising me and my siblings. They are all stories I know well. But this time they were brought out for the purpose of relating to me. She really tried hard to relate to me and validate my feelings. I understood those stories a little better. We talked about guilt over burdening people with our troubles. She related but explained that it doesn't apply to her, that she wants to know what I'm going through, that it's so much better than being left in the dark. And I believed her. I suppose what it came down to is this, am I doing this right? Am I good at being sick? Is it reasonable or normal to feel the way I feel? She said yes, of course. But that is really what I so often want to know. Where do I stand? Give me something to compare this to or statistics or charts and graphs. I don't care, just something. I want to know how I'm doing. Should I pull it together or let it all out? Am I weak? Do I think this is worse than it really is? Or, is it worse than I realize? And on, and on, and on. I'm exhausted. I've cried all I can over this today. I've asked every question twice. I do feel better. I don't want to feel like this tomorrow. I'm trying to convince myself that these feelings come with the territory. But how can I know for sure? And, more importantly, why do I need to?