Tuesday, September 28, 2010

At 9 months, pain spikes are less "spikey"

I'm finding less variation between good days and bad now. (They're all bad) Ok, not really...they're all...medium. The highs and lows are not as high, or as low.

When I was charting my pain a few months ago, well, the bad days were like skiing a double black diamond trail...now it's more like a blue run. Occasionally I'll even get an easy green and marvel at my good luck! And, by occasionally, I mean maybe once every 12 days. I attribute this improvement to the Lyrica.

Lyrica is helping to dull the pain in my face/upper teeth. I was RX'd 150mg/day, but since I am managing to cope at 100mg, I am holding there, hoping to do as little systemic damage to my internal organs as possible. I do notice blurred vision and vivid dreams (a known side effect of pregabalin and gabapentin), but consider those fairly minor side effects.

I don't know when I will feel like I can stop the meds. Not any time soon. Having been to all forms of medical experts and them all saying they can't find anything in my xrays, MRI's, etc, at this point I've resigned myself to just keep taking B vitamins, and hoping the nerve continues to repair itself in time.

I have had temporary crowns over my root canals for 6 months now, too scared to go back in and get permanent ones. No one's coming near these teeth. I haven't had a cleaning in a year, so I'm coming due for that, too. Yeah. Fat chance.

I feel pretty normal and not drugged. My heart is no longer racing nor do I feel faint like on the Pamelor (Nortriptilene).I'm not falling asleep sitting up as much. (And they think texting and driving is bad? Hah! Should see how it feels to drive on some of the drugs I've been prescribed. Not safe!!)

The tongue feels rugburned in a wide area most days; occassionally on a good/quiet day, it's just on the left tip. Klonopin puts the fire out, and, since this is an off-label use of an anxiety drug, I get the double benefit of reducing stress. Pain = stress = anxiety = more pain = more anxiety, and so the cycle goes. Sucking on a Klonopin for a minute, then spitting out, helps a lot, though it does make me sleepy. Wish I could suck on them all day, but I can't. I'd be like Rumplestilskin!

Has anyone found that any foods in particular help or hurt the burning?

Monday, September 13, 2010

Surgical options explored... and ignored

On NPR this morning they did a story about a blind man who'd had surgery to restore his eyesight. He was born sighted, but lost his site in a chemical accident at age 3. The result was, his brain was so trained NOT to see images, after 40 years, that even though the surgery was considered a success, and has worked for others... he still can't see.

Retain the brain. That's the key. But, his doctors didn't anticipate this, nor know how to resolve it.

That's what concerns me about those of us who've been living with this a long time. We have to stop the pain cycle to train the brain that pain is not normal. So if that means having to be on meds, so be it.

I'm hoping that this is the key to teaching my brain that my own body's signals are false, or at least to overlook them.

Living on Lyrica and Klonopin, with the occasional hydrocodone, is not a way I ever imagined my life. Ever. I used to avoid even taking Advil - now, I just laugh at them, (aren't they cute?) they're about as effective as a Pez would be to me.

I've heard about surgeries, laser treatments, etc... but every doctor since Pogrel says the results are poor and they don't recommend it for me. It is only recommended for those who have complete numbness. Even then, those folks might end up like me, with hypersensitivity and pain, once the nerve is reconstructed and sending signals again.

I have requested from my doctors thin slice MRI's, MRA's, etc... and been told there's really no point. I'd have to keep searching for new Neurologists to find someone to order and read one, and considering how expensive it is, even with insurance, that's just not going to happen. When I was originally misdiagnosed with trigeminal neuralgia, here are some of the treatments I'd come across; some of these are also being talked about for lingual and alveolar nerve injuries. But I keep being told "no".
  • Microvascular decompression - this is brain surgery to release pressure on nerve or blood vessels, they often insert a teflon pad to relieve compression
  • Gamma knife - less dangerous, not an actual knife. Gamma rays are used to shrink the blood vessels surrounding the nerve. Biggest problem is probably that it's not always effective.
  • facial nerve blocks - seem to give temporary relief, most insurance won't cover
  • novacaine at ganglion nerve - temporary
  • radiofrequency or glycerin rhizotomy- I think they identify nerves sending pain signals and cut them. Interesting thing here is that it targets nerves which, due to not receiving GABA, generate unusual electrical activity. Since I'm taking pregabalin, anything with GABA gets my attention; however, having my nerves permanently severed does not.
  • Motor Cortex Stimulation- they put electrodes in your head
Obviously, my notes here are very unscientific, just gathered from stories I've seen on the web. Anyone who can add medical information or who happens to know anything about these please feel free to comment.

I hope I'm not still blogging about this when I'm old and gray.

Friday, September 10, 2010

The effect of emotions on pain

An observation. Yesterday was one of those rare days when I was so happy I didn't even notice any pain, though I was talking almost non-stop. I met with an old flame for lunch, and we had such a great time, I experienced a sense of euphoria and adrenaline for 4 hours straight as we ate and later walked around talking. However, not long after I left that environment, the pain resumed it's regularly scheduled annoyance.

I've been in happy moods before, but the pain still broke through. I usually have to put some medicine in my mouth to dull the burning, or can't completely smile on my left side because it aches. But this time - not at all.

Why do I feel it during the mundane, day to day stuff like working, driving, and caring for children, but not when my body and mind are chemically elated to a degree that overrides the pain and- most of all- can this scientifically cure us of our pain somehow?

So here is my question for those who may be in the medical field: how do we produce this artificially? Medical marijuana? I have no clue. I can't even pretend to be a scientist. I am merely pondering questions here since the wonderful world of the Internet allows me to do so with no one stopping me.

I also notice when crying the pain to be worse. But yesterday, I had a moment where I got pretty weepy as we shared some memories that weren't so happy (close relatives dying) but even then, no pain. That "euphoric" feeling still dominated over any other. If I could bottle it, trust me, I would!!

I imagine that's why they use antidepressants for nerve pain. We aren't necessarily depressed, but creating that little "high" just enough to better our mood a little, somehow dampens the pain. Doesn't eliminate it, just hides it for awhile.

Scientists are not sure how Pregabalin (Lyrica) works, other than it stabilizes electrical activity in the brain, keeping it from becoming overstimulated. Funny thing is, my brain was clearly very stimulated yesterday during our little nostalgia trip - trying to recall events and people, and the excitement of seeing someone you hadn't seen since you're a kid. Possibly even falling in love again. But love alone can't be enough to stop pain, lots of people are in love but still grapple with pain every day.

Still looking for that magic answer that will put a stop to the pain and let me go back to living life normally again.

Saturday, September 4, 2010

Getting off all meds was an epic failure :(

I've seen so many doctors and no one has had the perfect answer for me, so I'm learning as I go. I really have had to experiment. After a few days without Neurontin, the pain was just too much, very distracting and makes me not a nice person.

Since I am in this apparently for the long haul, I really have to find something to help cope with the pain.

So this week:
1. Eliminated Neurontin as Doc recommended. Hmmm pain seems worse.
2. Decided to give Lyrica another shot, but I realized the trick is to take the 50 mg at bedtime, so I don't get that loopy thing where I can't drive, etc... then I take 25 mg pills in the daytime and am titrating up. You really do build a tolerance this way. Recommended dose is 150 mg/day; I'm at 100 now.
3. Because they are capsules, I had to figure out on my own how to manage the dosing schedule, and ask my Dr for two Rxs: one for 25 mg and one for 50 mg. So far, I do think I'm feeling some reduced pain in my teeth and face. (I still have to keep a Klonopin on my tongue when the burning gets to be too much, maybe 1-2x/day.)

Downsides: Lyrica is expensive - over $2/pill with insurance and there's no generic; fortunately I was given samples at the Dr's office that will last me about a month. I'm still hoping by the time I reach a year the pain will be reduced to the point I no longer need this. But no one can predict.

I've read bad things about Lyrica, but then again have read bad things about every medication, including Neurontin. I'm noticing daily headaches lately - not bad ones - not like migraines or anything. Can't say yet if it is related to the Lyrica.

A physician friend tells me he has patients who love Lyrica, and some who hate it. He tries Neurontin first, though thinks Lyrica probably works better - but it's still new on the market, no one really know a lot about it. I'm just hoping this new med continues to help make the pain tolerable without me growing a third arm or something. ;-) His opinion on Lyrica is there are risks and benefits with every medication, you just have to decide if the benefits outweigh the risks.

Hope everyone is doing well and enjoying the holiday weekend...I am spending it with family, which is always a great distraction.

Update - the headaches are gone, and so is the rain we've been having - probably more related to weather than Lyrica. The tongue still burns as the day wears on, but if I could just keep the normal tongue of mornings all through the day I'd be soooo happy. What is the secret?