TN - just complaining...

[steph74]

I've had a huge worsening of the trigeminal neuralgia and occipital neuralgia (zaps and pain in the back of my head and scalp).  At times it's just been a continuous series of zaps, they don't last too long, but there will be one after another for 10-15 minutes (or maybe it just seems that long).  

Then there's the pain in my teeth and jaw, behind my eye, and *ohhh* did I mention the back of my head???  Each "zap" feels like I fell and cracked my head on the cement!  It hurts to lie my head on a pillow.

Man!  I'm sorry to complain, but I'm sitting here at work and it's so hard to concentrate and there's no one to complain to (I have no dx so no one knows what's going on, except that I have bad headaches, and only a few people know that).

Plus I've been having worsening of this intermittent blurry vision.  That's more of an irritation than anything else, but on top of the facial and head pain, it's pretty irritating.

Thanks for "listening".

Stephanie

[steph74]

Thanks everyone.  I emailed my neuro yesterday to ask about other ways of controlling the pain.  It sounds like adding another drug, or switching drugs, might be an option.  It's good to know there are options.  :)

It sounds like there are several of us in the same boat right now.  :(  I also have the pain behind my eye (TN is primarily left sided for me).  The neurosurgeon I saw sounded as if he thought that was odd, but it seems like a lot of people here have it, too.

Wishing all all of you healing thoughts!

[Wobbly]

I also had a flare up of pain on my right side of my face, teeth are sore and jaw, ear area. dull ache behind right eye... not sure if its a side effect or what...it hasn't happened before, but it's been there for over a week.

I'll be mentioning it to the neuro tomorrow

take care
wobbly
dx

[jensequitur]

I've had a flareup of my TN as well - the entire right side of my face, including my right eye, feels cold, and at times painful.  I dread when it decides to be all pain!  I'll have to start taking the Tegretol then, I guess.

[Fluffysmom]

I've taken Tegretol on top of my Lyrica when I've had a flare of TN, and it really really helped.  My pharmacist assured me that the side effects would lessen or even go away within 7 - 10 days.

My TN actually got better, but I got some awful neuropathic pain in my right leg/hip/side, and am now taking Tegretol twice a day.  It hasn't been a week yet, but I think I'll get used to the side effects, since it does cut down on the PAIN.

I even got a bonus side efffect; I've had trouble with constipation, and tht Tegretol took care of that!  My new gastro doc I saw today said that will fade, too, as I got used to the Tegretol, but gave me some new options.

Wishing you relief,

Kathy

[rendean]

Any drug is capable of producing a wide array of side effects , I haven't looked up gabapentin in  awhile and don't recall if that's a listed side effect.

I was told by my PCP and 2 neuros that the drug of choice for TN is Tegretol or Trileptal. Have they tried prescribing that yet? I used Trileptal for awhile and it worked well but I had to stop due to side effects.

I think you might need to add another drug since it neuropathic pain and it seems that 2 drugs have a synergistic effect. Have you read the Health page on neuropathic pain?

I hope you get some relief from the zaps...there are so annoying and painful!

Warmly,
Ren

[Eyesnlegs]

I can really relate too as I have the same pains and they have been much worse recently, In fact I was wondering if it was a realpse as the depression and walking are also really bad again.

I have only just started taking Gabapentin for it so have not built up the dose to enough to help yet but I sure hope it does.

I use eye drops for my eyes but they don't help the blurry vision which comes and goes and is probably left over from the ON I have had.

I am sorry I can't help, but I can empathize and send you healing thoughts. I hope it feels better soon.

Pat x

[steph74]

Thanks, Ren.  I'm taking 1800 mg of gabapentin for it, but it doesn't seem to be working right now.  I also think the occipital neuralgia is worse.  I don't want to take more because I'm already having side effects from the amount I'm on, but I don't know what else I can do.

My optometrist (haven't seen an opthamologist) said my tears were of good quality.  I've tried the eye drops anyway.  They can't hurt, but they also don't seem to help.  I'm wondering if it's a side effect of the gabapentin.

[rendean]

I know how painful and irritating the TN and occipital neuralgia can be. I think the occipital neuralgia (in my case) was more annoying and painful than my TN.

But , I do/did get the lightening bolt zaps to scalp and head that literally caused me to jump.  Are you taking anything for it?

For the blurry vision...Have you tried lubricating eye drops? The neuro-opthamologist I saw said that insufficient tear film over the cornea of the eye can cause blurry vision. I use Natural Tears and others like it when I do a lot of computer work.

I hope these neuralgias settle down quickly for you.

Take care,
Ren