Friday, July 23, 2010


Well, I've had some good days recently (300 mg daily of Neurontin may be to credit for that) but the bad ones still occur, and the feeling of powerlessness really gets to me - it doesn't matter what important event I have for that day, I can't control when the pain will hit. This injury doesn't care if it is someone's birthday party, or an important job interview, or even my daughter's graduation. It just strikes without warning, and I can't will it away. In fact, it ironically seems to ramp up exactly on those occasions, as if it knows I've got something important I wanted to feel good for!

This always happens after several quieter days when I start to think I am finally recovering. Then, bam! The pain then reappears... kind of like something hot pressing deep into the nerves of my face from my left cheek to ear, from the inside of my mouth/head outward. I know that probably doesn't make sense to anyone but I am always struggling for ways to describe accurately the feeling.

The toughest time I've had recently has to do with air pressure - once last week during a plane flight descent for landing, when I was really suffering and could do little about it, and again today, with the barometric pressure dropping due to tropical storm Bonnie (I live in Florida).

The good news is, the good days are better than they used to be.

I am sorry to see Kev's blog end, and hope I can take the baton adequately.

Monday, July 12, 2010

An open question for Topamax users

Spoke to my orafacial pain Doc today, who said he didn't think Topamax would help, though I've heard from several of you that you DID find relief so I want to pursue this. His questions were what does it help with, specifically -
neuropathic pain? Tongue burning? Face hurting? Teeth aching? migraine headaches? etc... any info you can provide? You can also email me privately if you choose.

Any help you can give would be much appreciated so I can get him to write a script and give it a try. The gabapentin seems to have very little side effect, as I'm taking a very low dose (200mg/day) but I still am in a good deal of pain every single day, and want to explore anything that's been working for others!

In terms of drug interactions, I still use Clonazepam for the burning tongue but spit it out vs. swallowing it for a more topical than systemic effect. I am meeting with the dentist who did this to me today. I'm now at seven months post-injury and counting. How's everybody else doing?


Monday, July 5, 2010

Giving Neurontin another shot

I weaned off the Nortriptilene (Pamelor) because, although it helped me sleep, it was making me feel dizzy, my heart race, and a few times I felt very close to passing out.

I still had that old prescription for Neurontin (Gabapentin) sitting around, which is known to help nerve pain, so I thought I'd give it a try and see if it made a difference. I do think it has helped. The problem is that it becomes less effective the more you take it, so you have to keep increasing the the dosage.

I took 100mg @ bed time for the last 4 days, then today had to add a second 100mg around 3pm when I just couldn't deal with that deep burning feeling like someone's boring into the nerves of my upper jaw, where the root canals were done (which possibly further upset the already inflammed nerve).

I would give anything just to be able to lie on my left side, chew on my left side, rest my hand on my chin, wash my hair without any sensitivity, and feel 100% normal again, but the teeth pains don't seem to be improving any more. I've plateaued.

Burning has increased after a few day quieter days, too, but the weather front that just came through could definitely be a factor. I'm just glad I am feeling better than I was during months 1-5 of this injury. I continue taking the B complex daily and C powder almost every day, though it's tart - I mix with watered down OJ or cranberry juice so as not to irritate the burning tongue; little tough to take so I have with breakfast. And of course clonazepam usually twice a day for the burning tongue.

How's everyone else doing?