Follow up med question, Quix or anyone?

[steph74]

Thank you all for your sympathies and well wishes on the loss of out cat.  It's astounding what a hole pets can leave in our lives.  I keep expecting to see him, or hear him--he was really a loud meow-er!!  But that not the point of this message.  

I asked about my meds for TN and occipital neuralgia.  I'm taking the max of Lyrica (300 mg, though some places have the max as 450 and some say 300) and a smaller (compared to the max) dose of gabapentin (900 mg).  My neuro said it's fine to take both because they are metabolized differently, so that part is fine.  The part that's not fine is that my pain isn't really being controlled well by these right now.  I don't know if I need to give the extra gabapentin more time (I've added that since last week)?  The other problem is that, at least right now I'm getting drowsy and dizzy from the meds (I could get used to the effects, I know, since I was previously on 1800 mg of gabapentin/day).  I almost fell down the stairs last night in the dark because I was groggy and dizzy.

Also, I'm having a lot of tightness in my jaw, which causes a different type of pain and is really limiting how much I can open my mouth.  These drugs obviously don't address that at all.  My neuro said it was "from the pain" but I don't think so--it's not as if I'm trying to open my mouth and reach a point that it hurts too much, it just won't open more than about 1.5 finger-widths (apparently 3 is normal?)

So should I ask to see a pain specialist?  Or should I just keep upping the dose of these drugs?  Is there anything I can do for this?  I now have TN pretty bad on both sides and occipital nerualgia on both  sides of my head.  I can't have all these nerves severed or my whole head would be numb!  :)

Stephanie

[steph74]

Thank you Quix.  I was at the point of taking gabapentin 300 mg 6x/day, because no matter how slowly I tried to titrate past that point, if I took 400 at one time I'd get dizzy.  Taking 6 doses was a pain, so my GP suggested switching to Lyrica, which I could take 50 mg 3 x/day.

Unfortunately I had to up the dosage over the months to 100 mg 3 x/day.  When the pain got a lot worse recently, my doctor said to add in a gabapentin (300 mg) with the lyrica.  That wasn't helping so she said add 2, then 3.  So that's where I'm at right now.

I will look through the website.  I have already seen a neurosurgeon at Georgetown who specializes in facial pain, at the request of my neurologist.  I'm undx and he basically said at my age (35 at the time) there was pretty much nothing else that would cause bilateral TN other than MS.  I think the neuro wanted to hear it from the neurosurgeon.  But I really don't want to pursue that angle until I've exhausted everything else.

I didn't try tegretol initially because I think it's pregnancy class C, and we couldn't rule out another pregnancy at that point.  Maybe I should try that now...

Thanks for the additional explanation on the limitation in movement in my jaw.  That's more clear than what my doctor said!  :)

Thanks again for the additional info.

Stephanie

[Quixotic1]

Hi, Stephanie, I think that the idea of seeing a pain specialist makes sense due to the fact that you are now at the point of "playing around" with doses and drug combinations.  Why is it that you dropped the dose of gabapentin from 1800 to 900?  You might however, benefit from a consultation with a neurosurgeon who deals with face pain, like one of the consultants for fpa.org.

But, first you might give an increased dose of gabapentin a try.  You are already on it and the max dose is way up there at 3600mg.  

The reported firstline drug for TN is carbamezepine - brand Tegretol - which is generally well tolerated.  It worked well for me at the dose of 900mg/day (with a max dose of 1200mg/day)

Have you looked through that website for the Facial Pain Association for any other hints on what can be done?

I agree that wholesale severing of nerves is not a good answer until it is the ONLY answer.  Numbness in the head is not well tolerated.

I don't think we can say that the limitation in jaw movement is not due to pain.  The spasm can continue even though the pain is not continuously present.

Quix