Saturday, February 9, 2008

Ye Old Virgin Lidwina

I have been tearing up my books about MS trying to find more info on trigeminal neuralgia, but all they have is a few sentences and then off to something more pertinent. (I have to say that anyone who is suffering from TN would find any info about it pertinent.) One of the most compelling things I have found so far is about what is considered the first documented case of MS--the Virgin Lidwina. For anyone who may not be as much of a history geek as me, I will give an overview: Late in the 14th century Lidwina fell on the ice while skating with friends (and is thus the patron saint of figure skaters), kicking off an ensuing 37 year disease of waxing and waning neurological problems. She suffered from the usual symptoms of MS and had terrible TN along with it. She embraced her suffering, thinking it was her lot to take on suffering for mankind. So what does all this have to do with me, my TN and how I view MS? First, I am not about to embrace suffering if I can help it; I know that I am not taking on suffering for mankind--I would be a terrible choice. I am not patient or self-sacrificing; and lastly I still can't seem to find the answers to all of this. What I would like to know is about anyone else who is suffering the same problem and how they deal with it. It is in the corner of my face and radiates through my jaw all the way to my cheekbone and even into my ear. So if you have TN, please let me know how if affects you and how you deal with it. Thanks, love ya, Blindbeard.



After my first 5-day round of IV Solumedrol in 2005, I developed shingles on the left side of my face. Interestingly, this was along the same trigeminal nerve branch. Talk about pain...ouch. So afterwards any lingering facial pain was deemed 'post-herpetic' pain and treated with neurontin. Well, the pain never really went away and during the next 5-day IV meds early in 2006 the pain subsided. "Interesting," said my neurologist. "Perhaps it is the MS. Either way the treatment is the same...neurontin."

There have been times where I've tried to taper down my neurontin use or where I've rationed myself due to waiting on a refill. During these undertreated times, the pain returns. But for me it primarily feels like an elephant is standing on my face. It is so distracting that I can't think straight and become extremely cranky. The pain radiating around my left eye will literally cause my face to feel as those it is collapsing on itself.

But the very good news is that neurontin is very effective in fending off the pain. If I'm more symptomatic and am cognizant of increased discomfort, I have room to increase dosage or frequency of dosing to make the pain subside.

This has just been my experience and doesn't conform to the MS literature. I hope that it helps in some way and that you can find a way to tame this new little beast.

Blindbeard said...

Thank you for that info. I take Neurotin now, but it is the lowest dose. I am going to call my neuro tomorrow and see what can be done. I would like to be able to think of something else besides this pain in my face.