Trigeminal Neuralgia

[dtaylor1101]

Has anyone had Trigeminal Neuralgia that is more of an annoyance rather than debilitating pain?

[football-mom]

Not quite, but the gabapentin I am on generally keeps it at a dull rumble. I say generally because the pain can and does break through to the blinding, can't move, can't think, can't breathe type of pain.

[limppy]

me too

I also have TN and I used ice at first to numb the whole side of my face now I'm on Gabapenten ( 600mg/day) and it's really helping pain is managable can even chew again but still sensitive to cold good luck...

[marti]

I know what you mean. My case is light. I get occasional stings in my face and eyes. Sometimes my jaw goes a little numb and I get some pain in my temples. I don't usually have to treat it, but when I do I take Neurontin. I guess some of us are lucky to have mild TN.

[BethM]

I'm on 600mg Neurontin every day for my TN (and other pains), and it generally keeps the TN at an "annoyance" level. It does start to 'break through' sometimes and get worse, but I can tell when it's coming on because I always get a dull ache on that side of my face first. If I take the "PRN" dose of Neurontin the doctor ordered as soon as I feel it getting worse, I can usually keep it from becoming debilitating.

[aspen]

I had the lightning bolt trigeminal neuragia a year ago for a while ... but since have had facial numbness and sometimes pain at some points. It was blamed on sinus, but ENT has ruled out sinus. I read somewhere that there is also trigeminal neuropathy, which is a different type of pain -- and more low key, in the same area.

The neurologists I saw were quite clear that TN was brief duration (30 seconds - 2 minutes) lightning bolt/hit the floor kind of pain with specific triggers, and were very slow to dx me until they were confident of this.

[marti]

I meant to mention that I've had a change in my TN. It used to be only on the right side of my head and face but now I feel it on both sides. But, it's still mild.

[minnie76]

Hi,

In Limbo for MS, but I do have a TN diagnosis.

Yes I do get more "annoying" TN pain, started on right side, now its bilateral ( left is worse).

However I have had 2 episodes of extreme pain both on left side, like someone is stabbing my face 6-7 times, the other one was a burning sensation in my cheeks that made my eye water. As painful as they are, they didn't last very long.

I will say that the "annoying" sensations, like I have a feather tickling my face drives be "BONKERS". I happens so often throughout the day, and I find I'm really cranky on those days.

MS neuro said TN can have a nagging nerve pain. I feel all I do is scratch my face or rub where it bothers me.

Aspen...I had it really bad last winter too...I think the cold breeze really triggers mine!

Compared to some stories, I feel like I have a mild case.

Wish you luck with TN,

I do have carbamazepine, but don't use it very often.

Minnie76

[Arthur Spooner]

I think when TN is only an annoyance there is no need to do anything about it.

I always saw my TN as only an annoyance, even though the pain was debilitating. I say this because it used to be so infrequent, sometimes going more than a month between episodes.

Since the 19th Dec I have had it every day but two, and the episodes are longer and more extreme. I actually woke up in the middle of the night last night feeling I was being tasered in the face. Absolute agony, yet the second it was over I was able to go back to sleep like nothing had happened. Weird.

I have always told my ms neuro that I don't need anything for it, but I think the time has come to try the medication. My concern is the side effects of the medication.

[tambrown]

Are the lighting bolts to forehead tn or something else ?They don't last long but surprise me with the intensity and suddeness .

That's the only problem I can think of involving my face but the cold does seem to cause it to happen more often.

[purpleivy]

I have always had some some facial numbness and tingling, was part of my flare at diagnosis and one of the things that never went away.
Recently I had another flare that intensified the TN and I began getting the lightning bolt pain and pain across my teeth. My doctor put me on Neurontin 300mg 3x day. As the flare subsided he suggested I try going off of it. I did that and it was successful.

I still have constant numbness and tingling/burning down the whole left side of my face and some intermittent jaw and tooth pain. Definitely annoying, but not necessary to medicate. Saving the neurontin for the unmanageable stuff!

[danintheden]

My TN appeared the first time three winters ago, left side only. It shows up when the real cold of the season gets here and ramps up and down with temperature change trends. Right now we are in a mild period and the TN has eased, but is always there in the background when I yawn or brush my teeth, i.e. moving jaw muscles.

It has been both more frequent and more painful this winter. I too told the doctor last time in that I could live with it, but next winter will probably check into some treatment options. Acting tough doesn't take you far against TN.
Dan

[Allieh59]

Before I was correctly diagnosed in 2008 I had such a pain in the side of my face. I couldn't stand it. THe pain brought me to tears. I was popping tylenol like candy. It lasted 3 days and I haven't had it again, thank god.

[venice]

My TN started out on the right side of my jaw/ear as intermittent (about once a week), then moved to almost constant, felt as the shocking pain that is considered a hallmark of TN.

I am now on 1800 mg/day of gabapentin, and while I still get some breakthrough pain, it helps a lot, though I have noticed some pains starting to come through on the left side every now and again.

What is not typical is that I still feel a duller ache that is almost always there. I'm not sure if this is TN, perhaps just atypical, or something else. I am to get an MRI soon, as the diagnosis was a clinical one, so this may shed light there.