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Let’s talk about a side effect: fatigue

January 18, 2012

Whenever I receive my prescriptions from Costco, they come accompanied by two or three sheets of warnings and side effects. Since I see these sheets every month, I’ve stopped reading them. They go directly into my box of usable recycled paper. But it’s not simply that I’m used to their copious verbiage; it’s that it depresses me. After all, what can I possibly do about them? I have to take the drugs. Here, for instance, are the side effects for gabapentin, my lifesaver:

All medicines may cause side effects, but many people have no, or minor, side effects. Check with your doctor if any of these most COMMON side effects persist or become bothersome when using Gabapentin:

Diarrhea; dizziness; drowsiness; dry mouth; tiredness.

Seek medical attention right away if any of these SEVERE side effects occur when using Gabapentin:

Severe allergic reactions (rash; hives; itching; difficulty breathing; tightness in the chest; swelling of the mouth, face, lips, or tongue; unusual hoarseness); behavior changes; confusion; difficult or painful urination; fever; memory problems; new or worsening mental or mood changes (eg, depression, agitation, anxiety, panic attacks, aggressiveness, impulsiveness, irritability, hostility, exaggerated feeling of well-being, restlessness, inability to sit still); new or worsening trouble sleeping; red, swollen, blistered, or peeling skin; severe headache or dizziness; suicidal thoughts or actions; swelling of the hands, legs, or feet.

This is not a complete list of all side effects that may occur. If you have questions about side effects, contact your health care provider. Call your doctor for medical advice about side effects.

That’s just for gabapentin! Now here is the list of prescription medications I take each day:

Gabapentin 600 mg 4 x day

Baclofen 20 mg 3 x day

Tizanidine 4 mg bedtime

Amitriptyline 25 mg bedtime

Citalopram 20 mg 2 x day

Levothyroxine 125 mcg daily

Doxycycline 20 mg 2 x day

Lisinopril 40 mg daily

Metoprolol 150 mg 2 x day

Clonidine HCL 0.3 mg 2 x day

Losartran Potassium 25 mg daily

Potassium CL ER 20 MEQ daily

Diazepam 2 MG as needed for spasticity

Like that? Four of them are for blood pressure, six for CPS and spasticity, one for thyroid, and one for dental care.  Every single one, except for the thyroid med and the potassium supplement, are labelled “May cause dizziness,” “May cause drowsiness,” May cause fatigue.” The one I *really* like are the two labelled “DO NOT OPERATE HEAVY MACHINERY.” Those are the tiznidine (a muscle relaxant) and amitriptyline (a tricyclic antidepressant), both prescribed for CPS. I take those right before bedtime, since the odds are good that I won’t be operating a crane, a dumpster, or a steam shovel at that time of day.

The tizanidine used to have a particularly strong effect on me. Within 15 to 20 minutes after taking it, the muscles in my lower limbs would lose all mobile force. As I stood on them, I could feel them suddenly stop working – as if my legs “had turned to water.” The “water” analogy comes from the fact that you can feel you muscles rippling  as if they were flowing. With all strength gone, you fall to the floor, hard and suddenly. I actually bruised myself badly the first two or three times it happened.  I got a large shiner that looked as if I were a domestic violence victim, but it was only caused by hitting the living room floor face-first. (It’s a good thing that it was carpeted.) Anyway, one night I had to sleep on that floor, because my legs were powerless and everyone else in the house was asleep. After that, I simply waited until I was in bed to take it, instead of gulping it down with the nighttime handful. After a while, however, you become “acclimated” to the soprofic effects of the drugs, and aren’t really in danger of taking a tumble down the staircase, for instance.

How long it takes you to acclimate varies from drug to drug. Gabapentin is notorious for knocking you on your ass – I mean, couch – with fatigue.. The first time I took it, the dosage was what I consider piddling today – 300 mg, twice a day. That 600 mg a day made me sleep for 18 hours at first.  It was barely enough to cut the burning, but the very fact that it worked at all was a cause for a little pep rally in my soul. “If it makes a difference at this dosage, then I can find the dosage that will actually hold the pain in check! All I have to do is ‘titrate’ myself to that level!” That was the phrase my doctor had used: it means to give yourself a week or two, while you sleep for much of the day. Your body acclimates to the drug. First you sleep 18 hours, then 14 hours. 12, 10, 9, 8 — it’s almost a blast-off countdown, like the ones we excitedly heard from Cape Canaveral (then Kennedy, then Canaveral again.)

About the time I got to 8 hours, after anywhere from 4 days to a week, it was time to increase the gabapentin dosage again. Perhaps I took it more frequently, or perhaps I increased the mg per tablet. Each change meant another period of acclimation, of extra sleep. Every time that I needed extra sleep, I felt guilty, as I was sleeping so much more than Jack and Jake. The two of them *love* sleep, much more than I do. So the fact that I was sleeping for 10 hours per day for three or four days in a row, and doing it every two or three weeks, was a lot for them to stand. Luckily, that period of gabapentin acclimation (read: “Louise Lazybones”) is years past now. I’ve gotten myself to a 7.5 or 8 hour day. The issue now hasn’t been how much I sleep, but when I get to sleep. Central Pain gets worse as the day goes on. (My theory is that dopamine and serotonin levels are being used up.) Anyway, that increased pain is enough to keep you staring at the ceiling if you go to bed before you’re really tired. Unfortunately, that may be long after the rest of the house is snoring.

Now I’ve been given a new prescription, as I mentioned; klonipin.  It’s for my hand tremor. I’ve been taking it for four days now, and the tremor is lessened – although not completely gone, by any means. It’s still quite pronounced in my thumb and index finger, and I still shake a cup of coffee all over the floor if I hold it in my left hand. But this is only the first week, and I’m supposed to double the dose at the end of week 2.

Why not start with the presumably fully effective dose? Because, as Dr Schneider said, “this will give you sudden sleepiness, especially since it will be reacting with your other drugs.” Since I can already nod out when I am at my computer or watching a movie, I assume that “sudden sleepiness” is even more sudden and narcoleptic than the nod-outs i currently experience. I’ve been hoping to avoid narcolepsy, where I’d fall asleep in the middle of a conversation, or collapse onto the kitchen floor. I’ve seen how it works, My college boyfriend seemingly had narcolepsy. He would lean back, mouth open, snoring, during our morning “The Philosophy of Science” classes. Once he was found, head down in the photo archive drawer, kneeling on the floor at the campus newspaper. I wondered just *how* extreme klonopin’s “sudden sleepiness” would be.

So far, the sleepiness hasn’t been sudden so much as long. The first day that I took it – Thursday – I slept for 14 hours. The next two were in the neighborhood of twelve to thirteen. By Monday morning, I was fed up with sleeping away such a large percentage of the day, so I forced myself to get out of bed after nine hours. I spent most of the day in near-catatonia, attempting to rouse myself with coffee, and unable to even concentrate on a game of Solitaire.

Last night, I went to be early (for me): 1 a.m. Surely, I figured, I can get up by 10 a.m. and have some morning hours in which to accomplish tasks. No joy, however! I had a cup of coffee, started to get washed and dressed, and a wave of fatigue washed over me. “Fatigue” is one of those portmanteau words, in that it hold a lot of concepts and meanings. This fatigue started with a sense of mental listlessness. I suddenly felt dull, and detached. My eyelids wanted to droop. My muscles became loose and weak; I felt that I had to sit down. I sat on my bed, thinking, “Let’s wait a few minutes.” Well, the few minutes turned into another two hours. I awoke up after noon, completely abashed,

Apparently, if I want to be awake by 8 a.m., I will have to get to sleep at 9 at night. Quelle horreur! for a Night Person like me. But this points to a greater problem for all of us with CPS: the greatly increased need for sleep.

All of us with CPS know how much better we feel with sufficient rest. Our best hours of the day – in terms of pain levels – are the ones right after we’ve awoken. Insomnia or difficult sleep patterns are unbearable for us, because we never get the sleep we need to relieve the pain. Unfortunately, all too often that very pain is what keeps us from to sleep. When the pain gets bad enough, nothing, not even the gin bottle, can tamp it down. Some of us, at that point, use fentanyl patches, oxycodone, or even morphine. When we finally DO get to sleep after a pain-rampage, we dream about the pain as if we were still awake,  or about painful, terrifying situations.

Just why we feel better after truly restful hours of sleep doesn’t seem to be a topic that has been researched much. I theorize that there are neurotransmitters produced during sleep that are beneficial to our pain relief. How do they work? It’s as much a mystery to me as how SSRIs demonstrate their efficacy. (“The exact mechanism by which SSRIs work is still unknown.”) I guess that the underlying, mysterious mechanism may be the same in both situations. However, even if I don’t know why sleep improves CPS pain, I, and my fellow CPSAers, can vouch that it does. For us, there is a natural demand for sleep, and lots of it..

But when that need is combined with the fatiguing effects of our prescriptions, it can mean that we will naturally spend a much larger proportion of our day in bed than our family, friends, and co-workers do. Some of us – those people on opiates – will be asleep for the majority of the day. It’s not necessarily pleasant sleep, either. My own dreams are full of stresses, fears, struggles, peril, and loss. But the content of our dormant hours isn’t material to those who are watching us snooze. What they see is someone who seems to be taking advantage of a situation they don’t really understand.  While they work, we sleep. Since they truly only have our word for it that we have this dreadful pain disease, it can seem unfair to them that we also get the advantage of extra sleep. It’s a cause of friction even between the most understanding family members. For me, frankly, it’s a cause of guilt. I don’t feel guilty enough to refuse myself the extra two or three hours – physically, my body won’t cooperate. But it’s one more reason to feel like a burden on a family that already is beset. This scenario is repeated in every family that has a loved one relying on these narcotizing, dizziness- drowsiness- fatigue-producing medications. We, who have the underlying pain-producing condition, have no choice but to take them in order to live,

So I will get used to the current level of klonopin, (0.5 mg). I should be able to get out of bed and get working after 7.5 or 8 hours of sleep. I’ll probably become acclimated by next Wednesday or Thursday. That piece of gravel in the family shoe, formed by my extra helping of daily sleep, will be removed… for a few days, since I will have to double the dosage again.

Let’s hope that the drug truly is effective against this mystery tremor. One more prescription in the list would be worth it if it meant I had control of my hand back.

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3 Comments leave one →
  1. January 19, 2012 5:55 PM

    HI Louise-I’m Becky Brandt from the CPS yahoo group and Facebook CPS group. I loved your comment about Gabapentin “Knocking you on your ass- or your couch!” It was the first drug I tried for CPS and indeed it KNOCKED ME!!! I was unable to continue it due to dizziness-after falling while walking & in the shower.
    I switched to Lyrica and over 2-3 years was up to 150mg, 3-4 times a day. I was falling asleep on my feet, while driving, on the toilet and everywhere in between. I accidentally ran out of Lyrica (had been getting it from the Patient assistance program due to high cost and high dose) and insurance wouldn’t cover. By the time my Doctor fought them for it, I was completely withdrawn from it (a miserble withdrawl I might add!) But suddenly AWAKE and out of the fog I’d been in for several years and my pain was suprisingly NO WORSE. So I decided there was no reason to re-start it.
    I tried Trazadone for sleep in the first year. It left me a TRAZA-HANGOVER daily and CONSTANT EXHAUSTION. I was also having horrid nightmares/night terrors that woke me up all the time and was too afraid to fall back asleep, so I decided to stop the Traz. My nightmares immediately went away which was a relief-but sleep was and is still a problem.
    I’ve taken Amytriptilline, up to 75mg at night-for burning and sleep. But was basically just exhausted, unable to sleep and STILL BURNING! So stopped taking it and am no worse. I tried Ambien, but only got a couple hours sleep then just exhausted the other 22 hours a day.
    I take Tizanidine 4 to 6mg at bedtime and get nice muscle relaxation from it. I will keep it!
    I recently added Melatonin Ultra from costco (its got GABA, Theanine and other relaxing stuff.) It does help so I will keep it up for now. I also bought a Biofeedback machine and am learning to calm things down. When I’m at my worst, I can usually breath myself into oblivion. Before CPS I used to teach Childbirth classes and was a Labor & delivery Nurse, so breathing is something I use often-Although I’d rather have a walking Epidural for life!!!!
    Methadone is my main pain med. I add oxycodone or dilaudid as needed, but have decreased it drastically because the side effects were outweighing the relief.
    Life with CPS is certainly a PAIN IN THE ASS! literally and figuratively. Now, since my meds have changed,It’s strange to be exhausted and yet unable to sleep normally.
    I sleep at night for awhile and catch up eventually when my body gives out or the weather gives me a repreave. Lots of Naps in the daytime.
    Your Blog is great and considering how fatigued and sleepy you are, you write beautifully!
    I hope you get a handle on this mystery tremor without having to add another medication.
    You deserve a break!!!! Take Care-Becky B.

    • January 19, 2012 7:15 PM

      Becky,

      Thank you so much for your wonderful, copious note! Did you post this on the CPSA yahoo group? That story about quitting Lyrica cold turkey is truly scary; these drugs are never supposed to be quit like that. I am so furious at the retrograde, profit-oriented, completely unique system that America has of funding the medications and treatments that means peoples’ lives LITERALLY. The fact that you were forced to go through that is appalling – oops, rant over.

      When you say that you quit Lyrica “and the pain was no worse,” do you mean the the Lyrica had *permanently lowered* the level of your pain? You went from a pre-Lyrica level, say, 7 or 8, to an on-Lyrica level (3 or so), and that your pain stayed at 3 even after you quit the drug?

      How long were you on gabapentin and Lyrica, do you think, and what were your gab dosages? I am collecting all the anecdotal material I can, because I get the sense that no one has actually done any sort of study of just *how* to ramp up gabapentin to effective levels, and *how long* patients need to get used to the elevation of drug levels.

      You’re using a biofeedback machine? Does it help? I live with my iPod, in my ears all night and most of the day; I use binaural-beat recording that induce alpha, theta or delta waves (theoretically). They DO help me both concentrate, and calm down. The delta recordings actually work to keep me asleep. I can send you some if you like

      And thank you for your kind words on my blog. I’m trying to make it informative, but I keep thinking I should also have some fun, and simply write in a way that makes me happy. Lord knows we need all the happiness we can get!

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