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Welcome to NeuroTalk. I am so sorry to hear about the trouble you are having. I don't have a lot of suggestions for you at the moment but hope someone else will comment. Try not to dwell too much on the idea of TN as the suicide disease. There are medicines and surgeries that can help. Take it day by day and keep searching for help. Make sure your docs know the severity of what you are experiencing.
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Thanks guys, i certainly do keep my consultant well informed.. i write down whenever i have attacks and the pains i'm experiencing etc.
My occassional attacks seem to have been replaced by a constant burning/ numbing sensation in my lower lip. However i can seem to eat normally now.. it's very strange how this has progressed in as little as 2 months. I guess what i'm concerned about is how it will progress further. Fortunately my scan didn't show the presence of a tumour or 'anything sinister' according to my consultant. They seem to think it will clear up through medication alone.. not much of what i have read on the internet seems to suggest that is the case though. And i'm aware this can't be cured, so like you say.. i can learn to live with this.. as i think i am starting to do already :) |
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I went to the dentist last week. Around part of my jaw that was hurting, a tooth broke. It turns out that that tooth and the one directly above it are really messed up, the broken one even has an infection in the jawbone! I'm getting the broken one pulled tomorrow. (I'm going to get an implant in a few months, luckily it's a lower bicuspid so I won't look all toothless.) Then I have to get a root canal and a crown on the top one. It was all secondary tooth decay from under fillings. The dentist was like "Didn't this hurt a lot?" Well, yeah, but I assumed it was the nerve. The dentist was really nice, too, and didn't act like I was stupid for assuming that. He just said "Yeah, it's hard to tell things like that apart from tooth pain." So maybe my teeth are irritating my nerve? The teeth both had decay down to the nerve. I don't know. I'll try to hope that fixing my teeth will fix my nerve, but not get disappointed if it doesn't. I hope you guys don't get bored with me posting all the things that happen to me here. I hope someone else can read this thread and get some kind of information. (I guess if people talking about their medical issues is boring to someone, they should probably read a different forum! :p) |
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I hope getting your tooth fixed clears up all your pain. That would be great! |
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The constant numb pain i had now appears to have gone and i'd say i'm relatively pain free at the moment.. probably about 90% normal. However, I am still on 3x 300mg Gabapentin and 4x 150mg Pregabalin to maintain my current pain free state, until i see my consultant again towards the end of the month. I was supposed to be coming off the gabapentin! As to whether the constant numb/burning sensation i had last week was better than the attacks.. for me, i'd say: yes.. definitely! I too have been told that the pain can go dormant (or into remission, as they say) for a period of time, or go away completely. However, from what i have researched.. the latter is unlikely! The cause for mine is unknown.. scans and xrays did not show anything dental to be the cause.. nor was there evidence of anything pressing on the nerve. I guess for you it could be the fact you have decay to the root of your nerve.. but i'm not sure whether this can be a cause of TN. Maybe something less serious. I actually really hoped i had an absess or something! lol. So in the nicest possible way.. i hope you have bad tooth decay and that your implant fixes the issue!:) Let me know how you get on! |
ENTs seem to be well known for dx-ING odd facial pains as TMJ or having large turbinates. Be careful.
I have atypical trigeminal neuralgia on my right side after dental procedures. It's been a year. Hideous pain. Cold wind REALLY bothers me. My meds have been helpful. Recently, I have some TMJ symptoms on the left side. Doesn't surprise me. I lost a tooth in the above mess, I'm often in pain, I sleep funny due to pain and its hard to relax because this has been a horrible horrible frightening situation. I'm now doing some things related to TMJ disorder (for left side) and meds for nerve pain (right side). Doing my best. Hang in there! |
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Oh and listen to your mom your neurologist sucks and moms know best |
I'm so sorry you are suffering with this pain. Like I said earlier, I have TMJ on one side, and ATN, on the other.
ENTs do not know about this disorder. Stick with a good neuro. Perhaps you should get an MRI with contrast relatively soon and an MRA as well. See if your neuro is willing to order these. If not, it might be a good idea to get another one. My neuro ordered two MRIs with contrast and an MRA. I understand if medication can't get it under control Microvascular Decompression Surgery, also known as MVD surgery, often works very well. Some people get TOTAL relief!!!! I have also heard of people getting better over time and it changing to more like an atypical trigeminal neuralgia (which is what I have). I use various medications...one is a cream I put on my face. The Gabapentin is in the cream, so the side effects are a little less. It still does negatively influence my memory. Check out the useful sites thread. I go to a TN group on line and have gotten some really helpful information talking with others with ATN. Good luck. |
My case sounds a bit similar to yours...
I had my first TN attack 7 years ago, when I was 30. I was convinced it was dental and after four months of severe pain I was diagnosed with TN. I was put on Amitriptyline and stayed on it for two years until I wanted to get pregnant. I went off of it and the pain never came back... Until this year. Now I am trying Amitriptyline again and it seems to be working. I am still in the process of increasing it. TN is a progressive disease so it does not just go away. It does go into remission though. My mother has it as well and she has long periods of remission. It seems that when it does come back it gets worse, which is what I am experiencing now. There are also different types of TN. I was quite confused because my TN does not come in short bursts of excruciating electric-like shocks. Mine always come on slowly early in the day and by the end of the day my entire left side is killing me, like I got punched in the face. It starts in my bottom and top molars and radiates to my jaw, cheek and ear all on the left side. Once I discovered Atypical TN I was like that's me!!! So everyone is different and everyone's pain is different. And for me there wasn't a definitive diagnosis. First a dental cause was ruled out by several dentists. Next I went to a TMJ specialist who said I have TMD and was given a night guard. My MRI was completely fine. No amount of pain medication would touch it though. Amitriptyline has worked for me but it doesn't seem to be a common medication for TN and I do not think it works all of the time. These are some of the reasons this disease is difficult to pinpoint though. It just seems to be more of a process of elimination. Good luck to you :) |
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