Can Atypical Trigeminal Neuralgia just go away one day? Having panic attacks.

[LittleLynnie]

The tegretol needs to have the dose monitored and adjusted, just taking it like a normal drug with a tablet a day won't necessarily work. The best thing is to start with 1, then 2 as close to 12 hours apart as possible and then 3 and so forth. It's not a "prescribe and forget" drug!

I really hope that her prescriber told her that already!

 

[Brendbaby]

Be@Bellablonde can you tell me if your a typical TN got better on medications or if you healed and was able to get off medications. I’m going through the same thing you were. Lots of anxiety can’t sleep or eat. I might need to get on medication. Pain in teeth and had a different tooth pulled that didn’t help and only made things worse.

 

[Turliuk]

@LittleLynnie, you mentioned you’ve been pain free. Did you stop taking the Tegretol, if so, when?

 

[LittleLynnie]

Yes, I took the drug for about two years from about 1980 until 1982, and the neuralgia has never returned. I still worry about it though (because it was so traumatizing!), and would never have allowed deep work to be done in that area again (such as an implant). I wear full dentures now, and actually waited until the teeth in that part of my mouth were hanging by a thread before doing so, because I couldn't risk extractions there. That gives you an idea of how unbearably painful the condition was! I still think about it (occasionally) all of these years later, and if you're experiencing this yourself, I hope that you are being treated effectively.

 

[Turliuk]

@LittleLynnie, I haven’t had it assessed by a specialist yet, can you give me any tips? I am afraid after hearing about the drugs. Did they affect you much?

 

[LittleLynnie]

The drugs were titrated up slowly, and I ended up with severe vomiting at the highest dose. I then walked that one back a notch and ended up having to balance the nausea with the pain. The dose I stayed with left me nauseous all day, but the pain became just a muted version of its original self. I would just feel a faint throb (not painful at all), and once that stopped happening completely, I felt brave enough to slowly titrate my dose down to nothing. I was kind of glad to have that muted version, because if I hadn't, I would never have been brave enough to stop the drugs, not knowing if the neuralgia was still there. And believe it or not, I was okay with the nausea, because as awful as it was, it was so much better than the random lightning bolts that shot through my face with the neuralgia.

 

[Turliuk]

@LittleLynnie May I ask what was the highest dose you took, and what area of Canada are you?

 

[LittleLynnie]

I am in Toronto, and because my neuralgia happened about 40 years ago, I have no recollection of the dose.

 

[Gordon]

The effective dosage can vary immensely between individuals, you can't really compare.

The highest dose I've seen was over 1.5g a day for one lady

You don't go to that level without very careful monitoring though, she was directly under the care of a Professor in a hospital setting and was being seen every 3 days... with blood tests twice a week.

 

[Turliuk]

@Gordon, my doctor gave me 200 mg for one week, then 200x 2 but I really don’t want to take it twice a day. When should I see some results with the one dose?

 

[Gordon]

Within 2-3 days it'll either work or you'll need to up the dose, sorry.

 

[Turliuk]

@Gordon hi, I’m worried because I have ventricular tachycardia and I don’t want to make it worse. Can you help me on that? Thank you

 

[Gordon]

You're going to be OK on 2x200mg, make sure you spread them 12hrs apart. It works better that way and it's better for your heart.
I'd check with your cardiac doc before going higher than 2x200mg though (albeit I've no idea how severe or not your VT is)

 

[Turliuk]

@Gordon, how often should your blood be checked and what exactly is checked? Thanks

 

[Gordon]

For low doses then it doesn't need to be done at all. The patient I was describing was on a massive dose. About 12 times higher than you... The blood tests were to check her liver function.

 

[Turliuk]

@Gordon, how high of a dose can someone like me with Vt ach take? I am 74. What’s the next step if carbamazepine doesn’t help?

 

[Gordon]

You'd need to ask your cardiologist.
Next step would vary depending on that. Either keep increasing the Carbamaz. till you get it stable, adding in something like a benzodiapine drug like Clonazepam or even permanently ablating (basically killing off) the nerve as a last resort.
If it gets to that kind of stage you need to see a facial pain specialist though.

 

[Turliuk]

@Gordon, hi again. Sorry to ask so many questions. What you said brought something to mind. I have tried to keep a log, and it seems like the pain comes and goes. There is the odd day when I don’t get much, or it’s faint. Other days it is like strong nerve pain. But touch wood, I haven’t had the lightning bolts for a while. Is this what you mean by getting it stabilized? It gradually fades? I’ve been taking the 2 a day for just about 2 weeks.
Clomazepan…is this a heavy drug, or safe for the heart? Something you can get off of later? Thanks

 

[Gordon]

@Gordon, hi again. Sorry to ask so many questions. What you said brought something to mind. I have tried to keep a log, and it seems like the pain comes and goes. There is the odd day when I don’t get much, or it’s faint. Other days it is like strong nerve pain. But touch wood, I haven’t had the lightning bolts for a while. Is this what you mean by getting it stabilized? It gradually fades? I’ve been taking the 2 a day for just about 2 weeks.

No problem with asking questions, it's why I'm on here.

Yes, think on this as being that the nerve is on a super-hair trigger, it's firing off without any real provocation. Or unstable to use the vernacular. The Carbamazepine seems to work by lowering the threshold for it firing off. So yes, hopefully your nerve is getting more stable.

Clomazepan…is this a heavy drug, or safe for the heart? Something you can get off of later? Thanks

It's safe for your heart. It's not commonly prescribed because it's one of the more addictive Benzos, but it seems to be less addictive when used in this way.

 

[Turliuk]

@Gordon, does it sometimes take longer than say, 3 weeks for this to calm down on 200x 2? Is it pretty sure that it will stay away?