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Old 08-16-2016, 10:18 AM   #1
Theodora
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Default What were your first symptoms?

How did TN present for you initially? I am sure everyone is different especially based on the nerve branches that cause problems but I'm trying to get an idea of what it looks like.

About 3 years ago I had 6 months of intense face pain, driving down into my left eye, always in the left eye. I saw a neuro-opthamologist for a year for it. It came on at once and left at once. I had a root canal just prior of course and had it performed again during this span. I was sure that there was a bit of referred pain from the tooth but my dentist assured me that my root is dead, dead and no pain is coming from there. The pain in my eye/face has been good for 2.5 years but this month has come back with a vengeance. MRI was clean 3 years ago, but there was inflammation in the eye that the Doctor could see. We treated with Presnisone and Indomethicin then. I'm on Prednisone now for something else so that doesn't help. I had a 2 year follow up with neuro-opthmalogy in May and she was convinced it was TN because I already have other nerve issues but to me seems like a bit of a lazy diagnosis. I'm on 29/30 of the last days being in some level of pain. To me, this isn't as zappy/shocking painful as other neuropathies are, but maybe it doesn't need to be? My Grandmother had TN very badly and I recall wind hurting her face and you couldn't touch her face without causing her pain. My pain is not on my skin. Does it have to be? It's more of a boring pain deep in my face. I can rub my face when it hurts without causing like neuropathy shocks which I wouldn't think you could do with TN but I am ignorant here.

You can read all the publications in the world that describe it but no one describes the pain from a first person perspective. Anything would be helpful - I'm wondering if I should pursue this further. Please tell me what your pain is like, when it comes on, what it feels like, if it is skin or deeper. If eye/cheek/forehead/top teeth are involved. Does anything relieve the pain and can the type of relief help to be diagnostic? When does it come on and does it come and go? Anything else I'm missing? Any links or publications to share? Thank you!
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Old 08-28-2016, 07:32 AM   #2
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My pain started as one stabbing pain like an electrical shock one morning when I was eating breakfast. The pain was on the lower left. Over the next few days I would get an occasional jolt when eating. Then came an evening when I started having multiple stabs like a flickering light. (I realize now that it was moving air from the AC that caused it.) My dentist was sure it wasn't tooth related (turns out he knew nothing about TN and wasn't interested in learning, but at least he was right about it not being a tooth problem). My internist sent me for an MRI which showed nothing (that was back in the 90s). Before he put me on Tegretol one night I got solid excruciating pain. I went to the emergency room, got a shot of Demerol (after waiting in pain for 90 minutes) and got some relief but by morning the intense pain was back. I started on Tegretol the next morning. I would get almost immediate relief, but by evening it would wear off and instantly the solid pain would be back so bad that I couldn't even finish what I was doing, I just had to go to bed and breathe deeply and amazingly I could sleep. After increasing the meds till I was pain free and increasing the daily dose whenever the pain would come back I never had the solid pain again. I used Tegretol for the pain and when I could no longer increase the dose, I would have surgery. 7 years ago I had a MVD and have been pain free since then. The main triggers for me were talking and eating and a breeze occasionally.

Tegretol is an anti convulsant medication and the fact that it took away the pain was what confirmed the diagnosis.

I know others here have had different kinds of pain, but that was my experience. I hope you find some solutions. Living in pain is so hard.
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Old 08-31-2016, 02:17 PM   #3
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Hi Jean -

Thank you for your response. I don't think my pain sounds like yours. Yours sounds like my Grandma's was (and quite intolerable also, at least at its worst). I am leaning towards this being something else for me and really appreciate you sharing your details.

I have an appointment with my pain Doctor tomorrow for this and general weird nerve stuff I have had going on so I'm hoping they can shed some light on it. Something widespread has a hold on me right now and this is a part of it. I'm a bit worried about finding an answer actually, it seems like they always just say it's autoimmune and idiopathic for like - everything.
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Old 09-01-2016, 09:54 PM   #4
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Mine also started with a severe shocking pain across my right cheek from my ear to my jaw including my tongue and lips. I was standing in the kitchen on Saturday afternoon and the pain was so bad it took me to my knees. It lasted about 10 seconds but WOW. I then had one the next morning while getting out of bed. Damn! Went to the my doctor the following day - sent to have MRI - looked normal but that's not unusual. I spent the next 18 months in pure hell. I was moved from one anti-seizure drug to another. Triliptal, Gaba, Tegretol and a host of other drugs. Nothing worked. Ended up having to quit work and I Had been there for 14 years. I lost 35 year working career because of TN. I Had to stop driving because the maximum dosage of the drugs had me like a zombie plus I didn't want to have an "episode" while behind the wheel. Neurologist sent me to a Neurosurgeon. Scheduled for MVD surgery 2 weeks later. The surgery gave me my life back literally. The Surgeon found multiple blood vessels "tangled" (his word) with the nerve. That was 6 years ago and I have been fine since.

I have NEVER felt pain like this before.....
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Old 09-05-2016, 10:06 PM   #5
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Went to dentist for relatively simple procedure.
I had NO pain at all.
After several visits that were rather peculiar, I developed horrible pain.
Hard to describe, but it's like a horrible pressure, boring, pain in my right ear (near where the dental work was done). Sometimes hot pain. For me, rarely sharp. "Just" heavy, boring, severe, painful, unrelenting pressure. Sometimes I describe it as a giant, hot potato being shoved into my ear and getting stuck in there festering. Sometimes the pain is so severe it causes nausea.
I'm on a specially made cream with three meds in it that I rub on my face and right now, am taking one medication by mouth. Technically, this would be four medications I take regularly for this and have been doing this for approximately four years.
I have two additional meds for emergencies only (extreme pain).

PS To whomever stumbles across this post, PLEASE make sure you always see a highly qualified, experienced, recommended dentist. And, if you have any unanswered questions, seriously consider getting a second opinion. AND if you experience what looks like nerve damage, you very likely will need to see a NEUROLOGIST. And if you strongly suspect malpractice, seriously consider a consultation with an attorney as well. Trust your instincts! Be well.
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Old 09-06-2016, 10:49 AM   #6
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Default So ... it is TN?

I went to the pain Doctor last week and he thought this was TN after all. There were some pressure points that he checked after I explained the pain. I wasn't having any issues when I went in but he nearly set them off with the pressure points, only on the left side. I'm having some weird autoimmune neuropathy flare up right now that has been around the same time of the facial pain. He wanted to treat everything together - Gabapentin which I don't like, Cymbalta which hasn't helped in the past to my knowledge and then we were looking at some type of opiate that I didn't agree to. He said they usually do a Lidocaine infusion, but I'm severely allergic to Lidocaine, and it's a real allergy (I hear all the time that most people don't have the "real" allergies to it, they just don't like it). Nothing that I want to or can do. I needed to know what it was and what would help but I don't want to be on any of those meds. Gabapentin did not agree with me - hallucinations and loss of cognitive function. So I don't really know where that leaves me.

In any case, it is a deep boring pain that doesn't stop, but also may be TN which seems off to me. I wish there were better diagnostic criteria that he could have used but he thought it was TN set off by an autoimmune flare.

In my case, I had the dental stuff, but I don't know what the dentist could have done better. With my allergies, we were experimenting with alternatives to the local anesthetics and it was my idea so I surely wouldn't be upset with him. I'm a problem patient and I know it. I have RSD/CRPS and I think my body just attacks anything it doesn't like. I think a picture perfect dental procedure could have set me off. I was under general anesthesia for the second, and third round because the experiments didn't work. I don't think he did anything wrong -- and my tooth was infected it had to be done. My jaw was locked shut for 2 weeks afterward because of the alternative block, but steroids opened it up so I think again that it was my body reacting and a different person wouldn't have reacted that way. I'm grateful to him for trying every time I see him. I think it's just a risk and not a malpractice in every situation. There was definitely no negligence for mine.
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Old 09-07-2016, 06:33 PM   #7
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I have a friend with RSD. Been in a wheelchair for many years... Couldn't your problem just be the RSD. Seems like that can affect a lot of the body. I had many food and chemical sensitivities years ago. Getting treated for that might help. Most doctors don't do much with that except for those trained in "clinical ecology."

I hope you find some help!!!
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Old 09-13-2016, 09:50 AM   #8
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Default RSD/Facial Pain

Thanks Jean!

I liken it to one in the same with RSD. I have Autoimmune Severe Small Nerve Fiber Neuropathy that was diagnosed the same time as the RSD. Something is moving into my muscles as well. There are other large motor nerve issues occasionally. I feel like this could be one idiopathic giant thing rather than a single person "lucky" enough to have 20 different disorders. Despite the labels I am fairly high functioning and I don't complain much but I am always seeking answers to this because the treatment can't be right if you don't know the enemy.

Yes, I believe it is RSD and neuropathy and TN, but I believe they could just be symptoms and not their own disorders. Does that make sense? It's hard to tell where one ends and another begins. I know with certainty that I have RSD flaring when my limbs turn colors but without that symptom, the pain can be neuropathies or who knows what. It's been 10 days since I have had face pain!! I don't know what brings it on or what takes it away, but likely something flaring up. I don't know why the Trigeminal Nerve wants to flare right now but damage from anything I already have could be the culprit. The pain Doctors shrugged their shoulders and said it can be all of the things or none of them so who knows. I guess we go with our gut instincts. I'm wondering if a dose of Prednisone I'm on took it away, which would be more in line with autoimmune - then I would blame the neuropathy. I should go to med school so I can learn the difference.
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Old 04-22-2017, 01:20 AM   #9
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Quote:
Originally Posted by Theodora View Post
How did TN present for you initially? I am sure everyone is different especially based on the nerve branches that cause problems but I'm trying to get an idea of what it looks like.

About 3 years ago I had 6 months of intense face pain, driving down into my left eye, always in the left eye. I saw a neuro-opthamologist for a year for it. It came on at once and left at once. I had a root canal just prior of course and had it performed again during this span. I was sure that there was a bit of referred pain from the tooth but my dentist assured me that my root is dead, dead and no pain is coming from there. The pain in my eye/face has been good for 2.5 years but this month has come back with a vengeance. MRI was clean 3 years ago, but there was inflammation in the eye that the Doctor could see. We treated with Presnisone and Indomethicin then. I'm on Prednisone now for something else so that doesn't help. I had a 2 year follow up with neuro-opthmalogy in May and she was convinced it was TN because I already have other nerve issues but to me seems like a bit of a lazy diagnosis. I'm on 29/30 of the last days being in some level of pain. To me, this isn't as zappy/shocking painful as other neuropathies are, but maybe it doesn't need to be? My Grandmother had TN very badly and I recall wind hurting her face and you couldn't touch her face without causing her pain. My pain is not on my skin. Does it have to be? It's more of a boring pain deep in my face. I can rub my face when it hurts without causing like neuropathy shocks which I wouldn't think you could do with TN but I am ignorant here.

You can read all the publications in the world that describe it but no one describes the pain from a first person perspective. Anything would be helpful - I'm wondering if I should pursue this further. Please tell me what your pain is like, when it comes on, what it feels like, if it is skin or deeper. If eye/cheek/forehead/top teeth are involved. Does anything relieve the pain and can the type of relief help to be diagnostic? When does it come on and does it come and go? Anything else I'm missing? Any links or publications to share? Thank you!
Hello, I have TN and was diagnosed 3 year ago. I'm 26 now. Mine started when I was 22 and I blamed it on my wisdom teeth because that's where the pain would always start but then travel up through my temple, eye, and forehead. The pain was always on the left side of my face, never the right. I was convinced it was my wisdom teeth so I had them removed and the pain went away. I was pain free for a year and a half before the same exact pain came back just as bad. It will cause terrible pain for about 3-4 weeks at a time and then disappear like nothing was ever wrong. I'm currently on the fourth week of an episode right now so hopefully it will go away again soon. The pain is never on my skin, it always feels deep. As far as I know, nothing triggers mine. It can come and go randomly by just sitting down watching TV.

Hope this helps
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