Atypical TN

General General TN & GPN (Old Site)
1

I am looking for other member's that suffer from Atypical TN. My pain symptoms do not seem to be the norm for TN and very thankfully do not seem to as intensely painful as other's describe. Or maybe I am just getting used to the pain after four months!

I am new on here and am so glad to find a community of other people that suffer from this horrible disease. Just getting to the point of a diagnosis is a very long, lonely and frightening road to go down. I had my first attack almost seven years ago. I am lucky to have gone so long before I have had to deal with TN again, but it is back in full force.

Just looking for others' experiences, descriptions of pain and what has worked for them. Thank you :)

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Go to the group tab above

There is a group to atypical TN !

3

Thank you! I am brand new on here and I did find the group. So amazing to find other people experiencing similar symptoms.

4

welcome to the group. You will et lots of good advice and everyone is so supportive.

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Hi, I have been living with ATN for about 3 years. It started with a burning sensation in my gums and tongue and an ache in my jaw on my right side. I went to my dentist who refered me to an oral surgeon who couldn’t tell me what was wrong so I just lived with this constant dull, achey, burning crap until this spring. It got bad. Moved to my teeth…oh my teeth. Some days the right side of my mouth feels like I chewed scolding hot rocks. I’ve wanted to rip all of my teeth out. But went to a new dentist and my teeth and gums are beautiful. He actually gave me my second TN diagnosis. This is the constant for me now but sometimes when it really gets bad it hits my cheekbone like someone is pressing a hot match into it and my ear, temple and jaw feel like I got punched, my nose feels like there are needles in it and it hurts to breath through the nostril and lips too. I pretty much wanna chop the right side off sometimes. It’s mostly my mouth and jaw though. I still can have a week here and there where it’s just in my jaw and lower gums with low pain and I embrace those days now. I’m sorry you have to deal with this, I commented on your other discussion about amitriptyline as well. Good luck, i hope this help you find something familiar.

6

This is the closest description anyone has had to my pain! Almost the exact same but on the left side. I was convinced mine was dental. I had two fillings, a root canal, was on anti-biotics three times and saw three different dentists.

Mine starts in my bottom molars, then the top joins. By the end of the day my jaw and cheek feel like I've been punched in the face. And my ear seems almost plugged. And the teeth! I am still convinced some days that there has to be something wrong with them. It feels like someone is pulling them out from the inside! Some days are not as bad as others but it is constant. Usually the morning isn't too bad. By the time supper time comes I wish I could just go to bed.

I am still working my dosage up with the Amitriptyline. Some days I feel that it is starting to help. Still in pain, but maybe not as much? Side effects so far is just being so tired. Sleeping like 10 hours a night and still feeling foggy during the day. Also the dry, dry mouth. Both are manageable so far and fine if it helps with the pain! I will let you know how it goes on a higher dose-starting tonight.

Thanks for your reply :)

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You’re welcome! I’m glad you were able to relate. One of the best things for me so far has been reading and learning here. I spent so long being frustrated, scared and thinking I was losing my mind that just reading stories and seeing similarities comforted me. Even after I finally was diagnosed all I was reading about was the excrucitaing electrical shocks and stabbing pain which I don’t have so I thought my doc had misdiagnosed until I found this place and learned about type 2. So now I can at least know what I’m dealing with for sure. I’m still not sure what is causing it and how I’m gong to treat it but I’m not crazy so yay!! I had a fairly mild week which was nice but tonight at my sons class the ceiling fans were going and I live in northern Utah so it was pretty cold today so now my top and bottom molars are throbbing and my jaw is quite sore…ugh. The good days make me think that I can do this without meds but then when I can feel it progressing and I get scared of how far it will spread I get to where I think I’ve got to have something. I’m leaning toward the Amitriptyline for a couple reasons but one is because I know it is a tricyclic antidepressant and I think I could benefit in the depression department. This condition is a total bummer and it can ruin my day just by being there, severe or not. I’ve been a lot more sad since it kicked up this year. And I’m starting to get pain wrinkles between my eyebrows and I can’t have those ha ha. So anyways I’m glad you found this place. I will look for your med updates and appreciate you sharing! I think I could handle sleepiness and dry mouth if it doen’t mess with my memory and speech or my organs (that worries me, I don’t want to create other health problems) maybe I’m overthinking the whole thing…Have a good night :slight_smile:

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Oh I should mention that I do use a viscous lidocaine solution to numb my mouth and it helps. I save it for bad flares because I always end up numbing more than I like but it’s better than the pain.

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I was on carbamezapine and neurontin for almost a year before I started amitriptyline the amittiptyline took my pain away I was almost fully functional except the neurontin kept me emotionally low. U should try the amiteiptyline

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I was confused at first too whether I had TN or not. I am still unsure sometimes!! I am convinced it is my teeth even though I have been told time and time again.

I will keep you updated about the Amitriptyline. It is definitely helping but I am still getting some pain pretty much every day. I am giving it some more time because I am still increasing the dosage. The sleepiness is a welcomed break from the pain. The daytime fogginess is not so good though. I am 37, have a five year old daughter and work two jobs so I need to be on top of things every day. It seems I am slowly getting used to it and feeling less tired.

If it doesn't get rid of the pain by next week I am going to look into additional treatments. This pain has terrible effects mentally for me. I can't stop thinking about it! Makes me feel anxious and depressed which is so unlike me. I just want to get on with it and enjoy my life.

It does help so much to find other people dealing with TN and to talk about it with people that truly understand :)

bells said:

You're welcome! I'm glad you were able to relate. One of the best things for me so far has been reading and learning here. I spent so long being frustrated, scared and thinking I was losing my mind that just reading stories and seeing similarities comforted me. Even after I finally was diagnosed all I was reading about was the excrucitaing electrical shocks and stabbing pain which I don't have so I thought my doc had misdiagnosed until I found this place and learned about type 2. So now I can at least know what I'm dealing with for sure. I'm still not sure what is causing it and how I'm gong to treat it but I'm not crazy so yay!! I had a fairly mild week which was nice but tonight at my sons class the ceiling fans were going and I live in northern Utah so it was pretty cold today so now my top and bottom molars are throbbing and my jaw is quite sore...ugh. The good days make me think that I can do this without meds but then when I can feel it progressing and I get scared of how far it will spread I get to where I think I've got to have something. I'm leaning toward the Amitriptyline for a couple reasons but one is because I know it is a tricyclic antidepressant and I think I could benefit in the depression department. This condition is a total bummer and it can ruin my day just by being there, severe or not. I've been a lot more sad since it kicked up this year. And I'm starting to get pain wrinkles between my eyebrows and I can't have those ha ha. So anyways I'm glad you found this place. I will look for your med updates and appreciate you sharing! I think I could handle sleepiness and dry mouth if it doen't mess with my memory and speech or my organs (that worries me, I don't want to create other health problems) maybe I'm overthinking the whole thing...Have a good night :)
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What dosage of Amitriptyline are on if you don't mind me asking???

seedmondson85 said:

I was on carbamezapine and neurontin for almost a year before I started amitriptyline the amittiptyline took my pain away I was almost fully functional except the neurontin kept me emotionally low. U should try the amiteiptyline
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My symptoms also do not seem to be the normal conversation I am hearing on here either. I do not get electrical pain when the wind blows, or if I brush my teeth or put on makeup. I have a constant feeling of cement in my chin. Like someone sewed me up from the inside and tangled up my nerves or muscle. My lips burn and throb constantly... and the a/c in the car makes it worse. I feel like I may have some neuropathy or partial paralization. I am three weeks post op wisdom tooth removal and this is the cause.

What is your pain like? Yes, It is very frightening because I feel I will be this way forever. If you have similar pain please let me know. I want to know if it will ever go away or into remission, like yours.

I am on very low dose of neurontin and amatriptalyne. Dr allows me .25 mg of clonazapam. Gee, thanks. (sarcasm). Also taking tramadol. Also, sublingual b 12 and will start magnesium soon. What do you think?

13

Everyone's situation is so different but there are common threads in every story. The pain I have is all in the left side. Bottom and top teeth vibrating with tight, pulling pain. It moves into my jaw, cheek and sometimes my ear. It feels like I've been punched in the face (or how I imagine it would feel if I did).

The first time I had TN was seven years ago. It was right in the middle of my chin, in and under the two bottom front teeth. I went through four months of excruciating and constant pain before being diagnosed. With Amitriptyline it went away. I stayed on that med for two years. When I went off the pain didn't return...until seven months ago and in a different place. Again months of pain and just starting get on the right track with medication.

I'm sorry you are in so much pain. It seems dental work is often part of the story. Your description of pain sounds like TN and there are many great people on here that will help you :)

14

I haven't been officially diagnosed, but I think it's atypical. It started in January with mild zaps and several visits to my dentist, but no dental problems. My neurologist then started me on a low dose of Neurontin, but I have slowly worked my way up to 3000/day, plus baclofen. No problems for a while, then the tingling started. At first it was just a nuisance, but in late September it got very intense. A week later I had a teeth cleaning, three days later I woke with a crushing pain around the corner of my mouth on my left side. It lasted about ten minutes. A week after that I got five shocks around my forehead, and although they were nothing like I had ever had before, they weren't like what I have seen described by TN sufferers. I was given tegretol, but haven't started it because of the side effects. I'm concerned that the traditional TN drugs will interfere with my antidepressant (Wellbutrin) I have been taking for years. I have requested an appointment with Johns Hopkins, but haven't heard anything yet. Can a dental cleaning cause an attack several days later? I know there's no cure, but I would like to find anything natural (creams, herbs) to keep it at bay as long as possible since I'm in the early stages.

15

Wow...I have those same symptoms that bells mentioned!! I started with TN and still have those pains in midst of the atypical pain and it is unbearable!! As I type this I am in the bed in pain that I've been in consistently since Sunday..I went to the grocery store yesterday and it was awful..so awful that I didn't think I would make it back home. I am scheduled for my MVD December 17th but I've already been told that the surgery may not stop the burning pain but I'm praying for complete resolution. I am currently taking 2700mg of Gabapentin and any pain medication I can get..my neurosurgeon wants to add lyrica but I'm not convenience that it will help! Praying for TN sufferers everywhere!

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Hi jj37,

I am sorry you have this situation but I am appreciative for a fellow atypical member.

I am also having atypical symptoms, though my neurologist codes me generically as TN.

My symptoms started 7-8 years ago, but I ignored them, or saw them as related to insignificant aches and pains.

About 5 years ago I sought an evaluation, and though I like my neurologist a great deal, he was not impressed when my MRI and other tests came back negative. I just moved on.

About 3 years ago it became more significant but didn't want drugs or surgery, since I felt diet and exercise should take care of the situation. I was wrong, obviously.

I was then tested for various autoimmune diseases because they are common in my family, and I hoped all the pain was due to inflammation. That also lead to an unclear situation. Ultimately I have been followed by neuro. and am on trileptal 1200mg/day.

I feel I have done well, but now am having a lot of pain due to the cold(?).

My symptom:

electric shocks, stabbing, crushing pains. pain travels from one site to another- maybe following nerve path,(?).

pain in nose, odd feeling in my right eye.

pressure at my temples and sometimes in the back of my head.

I feel like the pain cycles.

Interesting when I am outside it is less uncomfortable in the morning.

The pain does not last all day, but it can last in a way that it feels like a pain hangover.

Hope this helps.

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I was ready to die before I had an MVD. And the relief only lasted for 8 weeks from it, but it was a much needed jump start.

My pain is all on the left side, with a lot of pain behind my eye and nostril, back to my tonsil, then from the jaw joint forward across the cheek across all 3 branches.

Right now I take 100mg nortriptyline, 120mg cymbalta, two 15mg oxycontin, 5mg percocet, cannabis, and lidocaine.

18

Hi and welcome to the group. I have had TN about 5 years. It started out in what seemed to be one tooth, the pain was annoying and I went to the dentist, he took x-rays, nothing wrong with teeth. Went to ear, nose throat doc, had MRI nothing irregular there. Slowly pain went away. Six months returned more intense, went away for approx. yr. The last time I had it return, I was truly seeing stars, my eyes watered with pain, I could not even talk, eat at times or even brush teeth without screaming pain. I had physical therapy for my cervical spine and it really helped. I also read about magnesium and its relationship to nerve health. I take a supplement called Slo-mag now with calcitrate and have been pain free for about 5 months. I have been on Prilosec for 12 years and this can lead to poor absorption of calcium & magnesium. I cannot take most drugs, for some reason; I always have adverse reactions. I also read one of the members recommending a cervical chiropractor, which I will keep in mind if and when pain returns again. Lately I have been having twinges in one tooth area again. Maybe some of these things might help you. You found a great support group here. Lots of info and kind souls, who can relate.

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Hello justjane37. Your story sounds just like mine. I went to 4 dentists. Started with crown, then root canal, then pulling. Antibiotics twice. I also felt like my cheek was punched. Even though all the dentists said it’s not dental, it’s hard to accept something more serious. My pain is more constant after 3:00. I believe it has something to do with talking all day at work. I am currently on tegretol working my way up to 3 times a day.

20

Darlene, your pains sounds just like mine. I’ve had jaw surgery and on Monday a retreat of a very back root canal. The dental specialists all agree I have red and inflamed skin around where my pa