In response to Brad's q to all about "remission" and pre-forehead electrical pain

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Hi Brad and all,

I didn't know where to respond to a question to the group so I"m making a discussion about it. Probably not the right thing, so hopefully someone will correct me.

I never heard the inbetween tn attack time referred to as remission...I had quite a long time between my first and second cluster of attacks and still didn't call it remission.

Like you Brad, my MRI was clear. My cause of TN is likely nerve damage from systemic lupus, which I was dx'd with in 2010. It also caused severe peripheral neuropathy so it's likely but not for sure. I have multiple cranial neuropathies. My TN is atypical, all 3 branches on the left, geniculate on the right, and others. I do get forehead pain on the left by itself sometimes so I hope it's ok that I joined the group.

Like you I get a bit of a warning..my forehead feels pinched on the left like in a vice. I get mainly stabbing aching in a vice that keeps getting worse pain, and not so much the zapping in my forehead although I do get that across my left side of my face during bad attacks.

My muscles pull terribly and twitch, even in the forehead a little. I can feel my upper cheek and eye pull a little right before the attack gets worse. It'll start earlier in the same day.

STRESS, oh yes, but I don't think it causes it. I think it makes it act up but it's not the cause. IMO This thing is way too physical to be caused by stress and I'm WAY too familiar and experienced with nerve pain and neuropathy to buy that argument.

Anyway, I'm sorry you have this nightmare. It's just awful.

HUGS, Julie

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Botox helps alot. Have you tried it? It stops the production of a substance that conducts a message from a nerve to the muscle. I swear by it. Although I recently started having insurance problems.

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I take tegretol and it has helped alot. Although my attacks are happening closer and closer together. Would you say that the botox is helpful for the forehead pain or for face pain as well?

I'm kind of scared of botox...????

HUGS, Julie

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It works for all of it. I get 50 units every 3 months in the jaw cheek and forehead. It wears off in exactly 2 months and 11 days. I can only receive it every 3 months for insurance coverage and also because it looses effectiveness if you take it more often. Yes, it works that well - I know exactly when it wears off. It stops some pain entirely and takes the edge off most all of it. I don't want to go without it. Side effects are... I look 10 years younger.

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From what I understand and what I have been told and read "Remission" is when the symptoms completely go away for a long period of time... sometimes a year or more. No pain, stabbings, shocks etc. it's as if you no longer have the ailment. I have corresponded with at least one person here on this support group who is currently in remission.