In the last two weeks, I’ve had more success in routing out health issues and making some progress. Here’s how I’m summarizing November’s lesson of the month: finding the right doctor makes every bit of difference.

Go figure.

As simplistic as it sounds, it’s true. I’ve always been a chronic insomniac, a detail which no doctor before now ever bothered to address with anything except a prescription. I have little experience with science or medicine. Therefore, when something is wrong with my system, I don’t know what answers to seek or even where to find them. This is why we employ doctors, to help us determine what’s wrong with our bodies. Don’t get me wrong, when a person can’t sleep, medications are a viable answer. But, is it right or even ethical for a doctor to just assume the cause and not look any deeper?

This month, I was sent to a specialist to be tested for sleep apnea. My appointment was at the beginning of last week and they sent me home with a monitor to check my blood-oxygen levels while sleeping. I haven’t heard the outcome, but during the appointment and ensuing exam, I learned that my nasal passages are gradually closing; the turbinates in my nose fill with fluid and swell, especially when I lay down, and cut off the airway.

Oh yes, it has its own fancy technical tag. Unfortunately, I didn’t write down the name and promptly forgot it. Basically, it’s non-allergy related nasal inflammation (I did write that down!) which has constricted the nasal airways by 50%, possibly more when I’m trying to sleep.

Doesn’t sound like it has much to do with Fibromyalgia or Chronic Fatigue, does it? The allergist, Dr. Z, said it doesn’t, but it may have a lot to do with the constant headaches.

I had no idea I couldn’t breathe properly through my nose and had the sniff-test not demonstrated the before and after, I wouldn’t have been any the wiser. The headache I’ve been living with for the last 12 years, the one that often makes me wonder if sky-diving without a parachute would be less painful, has gone from the roar of a lion to the chorus of three alley cats. The severity has certainly waxed and waned over the last ten days, but I can tell the difference, and it’s a vast improvement.

The point is … if you suffer from Fibromyalgia and are exploring either of these as an option try them. And, (my personal opinion) give them a fair two- to three-week trial — allergic reactions or harsh side effects not withstanding. Some of my fibro buds are doing well on one or the other, and some are taking both with useful, positive responses. While researching what you’re putting into your body is certainly a fantastic idea, it’s only one step in the process. Science is not exact. Yes, this subjects you to some level of guess work and turns you into a giant, pants-wearing guinea pig, but you need to find a treatment that suits you. If you don’t explore all of your options, how can you honestly judge what does or doesn’t work for you?

Rapid weight gain is a side effect of Lyrica. Just as nausea (both side effects I suffered, respectively) is for Cymbalta. But these are only possibilities, not absolutes and one cannot tell how one will respond by reading input from others alone. You should let your doctor know if you are sensitive to certain medications and be open to suggestions. However, if that openness seems one-sided, it might be time to seek a new doctor.

From the Lyrica website:

How LYRICA Is Thought to Work

Although the exact mechanism of action is unknown, results from animal studies suggest that LYRICA reduces the number of electrical signals that the brain cells send to each other. This could reduce the amount of pain you feel from fibromyalgia.

Reading this when I was first introduced to Lyrica didn’t instill a lot of confidence: Hmm, you’ve no idea how this works and, well, the only talking animals I know of belong to Disney. Not batting a thousand here.

Well, OK, so I was also skeptical about Topamax when Dr. Bivins suggested it in 2006. Although marketed as an anticonvulsant (like Lyrica) and migraine prevention medication, Topamax is also used off-label to control neuropathic pain (like Lyrica). Unlike the Lyrica, however, Topamax did significantly reduce the peripheral neuropathy I experienced in my hands and feet (currently I take Neurontin with some success).

The bad news is that both Lyrica and Topamax require the birthing and subsequent selling of your offspring in order to afford taking them. It’s the unfortunate side affect of medicine in a free society. If there is a demand and only one supplier, well … let’s just say you won’t even get a kiss. A one-month supply of Topamax in 2006 (200 mg a day) was close to $600. From what I hear, Lyrica isn’t too far behind that number today. Generics aren’t available, although I’ve heard the exclusivity patent for Topamax did expire this past summer. Generics are good for the wallet; always check to see if they’re available.

Cymbalta is an SNRI (Serotonin-norepinephrine reuptake inhibitor). It acts on two neurotransmitters: serotonin and norepinephrine. In the late 90s and early 2Ks I was told repeatedly that my only problem — despite having been diagnosed with CFS and then FMS — was that I was depressed. So to prove or disprove this theory I agreed to taking Prozac (a selective serotonin reuptake inhibitor), the fad drug of the day. That trial lasted less than two weeks; I couldn’t function. I was then prescribed Celexa (also an SSRI) and agreed to take it for three months.

My symptoms persisted and within three days, I felt no emotion, none, but the doctor told me this was unlikely. As a result of the Celexa, though, I lost all motivation and became rather versed in the art of vacant wall-staring. It was impossible to express myself in terms of pain (emotional or physical), exhaustion, or other problems I was having (insomnia, vertigo, IBS, etc.). Internally, I felt worse than ever. My ability to resist pain evaporated. I was an insect trapped inside a glass — the world beyond grew muted and fuzzy and no one heard me screaming inside to get out. I survived each day on mechanics alone, my body following the pre-programmed script it knew: put food in mouth, chew, swallow, get into shower, drive to work, answer the phone, etc.

It interrupted my conscience, too. So much so, that had I hit someone while driving, I believe I wouldn’t have been able to feel any guilt or remorse. In fact, it’s possible I would’ve just sat there and stared. When I explained all of this to the doctor, he responded that these observations were also highly unlikely. There were dosage increases and decreases, but with time, it became evident that SSRIs were not the answer for me. I tapered off and sought other options … including a new doctor.

My recent three week trial with Cymbalta netted very much the same results. I opposed it from the onset, but as a sign of good faith with the new nurse practitioner, I gave it a try. Within a week, I felt no drive, no creativity. I worked a little on pre-planned projects-in-progress, but I spent most of the time struggling just to stay off the couch or out of bed. There came that same sensation of being trapped behind glass, knowing what I’m supposed to feel and yet not feeling it. Regular symptoms grew more intense because, again, that self-taught resistance we develop to avert as much discomfort as possible had been disrupted. From this experience I concluded that, despite the claims, Cymbalta does not physically reduce pain. It reduces the ability to RESPOND to pain.

I can’t claim to know this from a scientific or medical understanding. I can, however, claim to know it from the viewpoint of a giant, pants-wearing guinea pig. I understand well enough to know that when I took Wellbutrin (for depression) in 2000 – 2001, for well over six months, I did so without issue. Like Cymbalta, Wellbutrin acts on norepinephrine, inhibiting its reuptake (reabsorption by the nerves releasing it so that it’s available to other nerves receiving it). Norepinephrine also acts as a stress hormone and is secreted during stressful events. Its effects are similar to adrenalin (increased heart rate, blood flow, etc.) but unlike adrenalin, it’s also psychoactive (affects mood and mental processes).

Along with norepinephrine, Wellbutrin acts on dopamine, raising the levels of both neurotransmitters in the brain. I can recall that as an antidepressant, Wellbutrin elevated my mood successfully without wiping out my entire spectrum of emotions. It made it easier to deal with the array of negative emotions that accompany a diagnosis such as Chronic Fatigue or Fibromyalgia. In this way, I considered it unintrusive, but having to evaluate dopamine combined with the norepinephrine, I can’t say that either had much impact on the amount or duration of pain I experienced. The same applies to Cymbalta.

I have friends who tolerate SSRIs just fine, who claim the worst of its side effects makes them feel mildly dopey, spacey, or a bit numb-n-dumb. Which leaves me believing that it all really depends on how your system responds. It’s been a difficult lesson for me, but I think the key lies in self-awareness and acting as your own advocate. Everyone and their brothers, uncles, aunts, nannies, nurses, dogs, cats, and stoats has an opinion about what you’re feeling, what’s wrong with you, and what you should do about it. They get caught up in these notions and fail to stop and listen. Sometimes, they can forget you know how to think for yourself. Sometimes YOU (yeah, you know who I’m talking about) forget you can think for yourself.

And you can.

Write it down. Track everything. Not just what you’re taking or when. How much. How long. Whether you think it’s having a positive or negative effect on your symptoms or your general health. Why do you think it’s helping (or not)? How do you think it’s helping (or not)?

If your doctor thinks he or she is the Last Bastion of Medical Science whose word should be gospel, find someone new. To date, I think I’ve been through 22 doctors (tally includes nurse practitioners) since 1996 and only four of them have made any effort to work with me. One moved on to cardiac surgery and two ceased practicing. Always disheartening — having to iterate through a dozen new doctors. The jury is still out on Number Four, but the best observation I can make about these particular practitioners is that my experiences with each one has resulted in progress and returned some positive result.

Remember this: the quality of your life counts, too.

I haven’t had any adverse side effects on Provigil, and although I can tell it’s in my system, it’s not uncomfortably intrusive. My appetite has changed, but is neither eradicated nor amplified out of control. Provigil does make me a bit … hmmm … happyhappyHAPPY (!!) when it first kicks in, but this seems more a psychological reaction than it does physical; I don’t feel amped out of my skull on amphetamines and driven by that mustmustMUSTcleaneverynookinthehouse compulsion. I do exercise caution in that first hour. I’m not too keen on post-exertional malaise sneaking up and catching me unaware. Awareness is the Fibromite’s best friend.

As of yet, I haven’t been able to find any research on whether or not Provigil causes serious long-term damage, and I will continue searching, but I’m not giving up this medication without a fight. I still slog — it’s NOT a magic bullet — but I don’t feel as if I’m trudging uphill everysingleday and getting nowhere. On Sunday, I even challenged Jon to a game of Scrabble — got my tush handed to me (on the fancy china, no less!) — and never once felt lost or befuddled.

It’s nice, the possibility of thinking and writing from a clear mind again, or the ability to read more than a book a month (not counting craft and hobby books, which fall under “picture books”). Maybe I won’t have to keep notes about the notes I keep. :)

It’s nice, this not having to pretend I’m hopeful.

A caution if you’re considering taking Provigil: it’s not FDA approved for Chronic Fatigue or Fibromyalgia and your insurance company may refuse to pay for it. It’s expensive ($75 or more a month; I take 100 mg daily), but not ridiculous (like Lyrica), and — my opinion only — is more effective at what it does. FDA approval could be a curse, driving the cost up (as was the case with Lyrica) and rendering it inaccessible to almost everyone who might need it. Next, Provigil doesn’t reduce pain. However, I find not having to constantly resist the accumulation of pain and fatigue makes a difference in how I perceive pain.

On some days, it’s enough.