[dmplaura]

Briefly... I was told I had TMJ (definitely the lesser of all evils) and had an EMG at the time, with a nice 12 page report from the dentist, explaining that Trigeminal Neuralgia was also a part of this.

I had what I suspect Trigeminal Neuralgia 'attacks' a few years ago, possibly my first symptom linked to my MS? (it's seen in a percentage of cases that TN attack is the onset symptom for MS... followed by a year approx. of no symptoms, and then further symptoms... which is exactly what I experienced).

I now, day to day, in my 'bad' times with MS, suffer mostly left sided dull or burning pain, from the top of the scalp to the cheekbone/cheek. Occasionally, I also get twinges of burning pain in my right cheek as well.

Some know my mouth history. I got that mostly cleared up. I was avoiding irritants as well and decided in the past couple of days I'd reintroduce them (namely ketchup and tomatoes). Well, the burning mouth returned with a vengence, but at the same time, my burning head pain did as well on the left side.

I'm so frustrated at this point. I hold a 12 page dental specialist report stating that I have trigeminal neuralgia (or highly suspected, I don't know if he can truly dx through an EMG in his work). I fully believe this is what I'm dealing with. I've been told by many that it certainly sounds like TN, over and over again.

How do I get a definitive diagnosis of trigeminal neuralgia? To complicate matters, I believe it's atypical trigeminal neuralgia (my pain pattern fits this much more so than the traditional quick jab and stab... which I DID experience years back, but not in recent years).

My neuro's just stuck on me doing my DMD and getting regular blood work taken to ensure my body's running up to snuff. My GP wasn't keen on prescribing me Clonazepam for my burning mouth to begin, but it turns out that this drug does help my suspected TN or ATN to a large degree. Problem is? She wants me off it. Bigger problem? I've failed both Carbamazepine and Neurontin due to side effects. How else am I going to control what I believe is TN or ATN, let alone find a doctor that believes that I have EITHER condition that my dentist has already, in my opinion, found for them?

It's this alone that's causing my pain misery. My other MS symptoms are almost dormant at this point. The TN or ATN is just unreal when it acts up, as it has done today.

I just needed a nice big long rant. After reading an article in the paper recently regarding how doctors find 1 major illness and ignore the others when 1 is located, I'm certainly seeing it for myself. Grr.

As an offside, would asking about Nortriptyline even be worthwhile do you think if I'm facing TN or ATN? I kinda think yes... that at this point, ANYTHING that I can tolerate and could help is worth trying.

To think I've told them I'm going back to work Nov. 24th. Sigh. If I tell my neuro all this mess on the 17th, maybe he'll reverse that decision on me.

[Desinie]

Hi Laura,
Yes, I think anything is worth a try. It does sound like trigeminal neuralgia to me. Is it atypical because it's not there all the time and certain foods or things trigger it?
Hang in there. Eventually I feel sure you'll find something that works. Nerve pain is I think one of the worst pains.

[bombi]

Sorry about your pain and frustration. It's so annoying when doctors don't hear what you are saying. It sounds like you done enough research to have a good idea of what's up. My only advise is to be assertive and demand answers.

Before being dx'd with ms I was sent all over the place and told things that I knew were't true. I knew something was wrong with me but I couldn't make anyone believe me. I stayed with it for 2+ years and finally found a neuro who dx'd and helped me.

Pain is terrible. It takes away the joy of life. Keep doing the research and keep trying standard and alternative relief. There has to be something that can help. Positive healing vibe coming at you.

[hollym]

I think it is time to put your foot down with the neuro. The pain is travelling along the exact pathway of the trigeminal nerve and the dentist is backing this up with a report and an EMG. Pain deserves treatment, period.

I don't know if it is different in Canada, but here in the US, dentists can rx drugs. Can't your dentist get you an rx for the nortriptilene?

[lady_express_44]

Laura, it is my (personal) experience that the doctors and neuros here are generally extremely conservative about dishing out meds, unless ABSOLUTELY necessary. They will encourage us to try to find ways to manage without putting more chemicals in our bodies, including using change of diet, natural methods, etc. before resorting to an "easy fix".

Fortunately that happens to agree with my philosophy anyway, but there have been times that I have heard about something that I think might be helpful and have approached my doc/neuro. 9 times out of 10, they will suggest everything else they can think of for me to try before they "give in" and rx a med.

This was true with leaving my job too. My doc spent two years encouraging me to "hang on" to see what would happen, as he knew there was no turning back once I admitted defeat (the system is too rigid to be whimsical about such a decision). Since then, they have both supported me 100% with that decision and would FIGHT on my behalf if there was any question of whether I can or can't work.

HOWEVER, when I have given an honest try to manage a problem through their suggestions, and it still doesn't work . . . or when something they have suggested actually makes another problem that is less bearable . . . they always back down.

There are no easy fixes to what we experience with MS. Even if we can find a med to "help" with some of our problems, often it has to be increased to remain effective, or it loses it's effectiveness over time anyway, or the med itself causes other problems, or a few months later we appear at their door with another problem that is equally troubling.

I have heard of so many people who are so "super-drugged", no one can figure out what is even causing or fixing problems any more.

Someone once told me that "change will occur when things get BAD enough", and I have found this to be true. Once you REALLY believe there is no way to manage this problem so that it's bearable for you, you will stand your ground very firmly, and your doc/neuro will back down.

Cherie

[dmplaura]

Well, I wonder if Nortriptyline will help. It's an anti depressant, so this would be an off label use. And I hope to heck I can tolerate the side effects from the medication.

If this is TN or ATN (I say ATN because... it doesn't come in short episodes of stabbing pain now. That happened several years ago. Now it's a dull or burning pain that is constantly on the left side, until it decides to let up for a month or 2... and then it's back again full force) it's usually treated by using anti convulsants. What happens when the patient can't tolerate the medication type typically prescribed for this?

I'm almost tempted to say, "Ok if this is TN let's try a 3rd anti convulsant, risk the side effects, and see what becomes of it". Not all drugs are alike, but I can understand why they'd be hesitant to rx another.

And then I had a dream last night I was smoking some MJ for my pain and I was feeling so much better. Go figure.

It's like my neurologist wants to dismiss my dentist's EMG work completely.

[bombi]

Try the weed. You guys in Canada have a Medical Marijuana proram. It can't hurt......Might help. Feel better.

[dmplaura]

Originally Posted by bombi

Try the weed. You guys in Canada have a Medical Marijuana proram. It can't hurt......Might help. Feel better.

If ONLY it were this easy. I am going to mention it to my neurologist, but I have obvious concerns about marijuana and it as a treatment option.

Can I still perform my job as normal while using marijuana medicinally (for example)?

Also, I'm not sure the amount of red tape involved here in Canada to become approved for medical marijuana.

[Gazelle]

Can you still perform your job as normal with the pain the way it is? Maybe that is the BETTER question you should be asking right now.

[dmplaura]

Originally Posted by Gazelle

Can you still perform your job as normal with the pain the way it is? Maybe that is the BETTER question you should be asking right now.

This is very true Gaztastic! No, I would not have been able to perform my job in that pain. I'd have gone immediately to our 'quiet room' to lie down and sleep. Sleep when I get into such a state, seems to be the ONLY thing that brings me crawling out of it.

I'm actually feeling a lot better today. Sure I still have some burning pain and I'm not 100%, but I was relieved to wake up today and have lessened pain.

Now we're dealing with 3 days of buckets of rain. Which sucks, but at the same time, it's consistent weather. No pressure changes. That means, no weather influencing my head pains, so hopefully a little break in the chaos.