Hello from Texas

General General TN & GPN (Old Site)
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Hello. I'm very OCD about organizing so my post is bulleted. lol.

Diagnosis - I was diagnosed yesterday 4-5-16 with TN. I know after reading up that I am lucky to have had such a quick diagnosis from onset of pain. It took 2 weeks, and probably would have been quicker if I had gone to my primary care doctor rather than to my dentist. My diagnosis is post dental work and I am following up to see if there is any reason this was brought on by the dentist. It was a bad dental experience to begin with.

Meds - Started meds yesterday. 10 mg prednisone in decreasing doses starting at 60mg/day for the next 3 weeks, nortriptyline 25mg at night. Ibuprofen 800mg 4 x/day, tylenol 1000mg 3 x/day and a round of antibiotics 300mg clindamycin 4 x/day for 10 days.

Symptoms - For the first time in weeks I actually slept 6 hours. That was awesome. I normally get sleep in 30 minutes to 2 hour increments from the pain. I get about 30 attacks/hour with a pain scale of a 7. Still learning my triggers. I do have a constant pain threshold of 3 on the left side in between the attacks.

Life - Still learning my triggers. So far my known triggers are - brushing and flossing my teeth as well as using mouthwash, turning my head to far to the right, my hair hitting my face, putting my hair in a ponytail, touching the left side of my face, and chewing on the left side. At the worst points, I was literally sobbing in a ball on my bed and praying to God to make it stop.

My fiance (Robert) is in shock and I am still coming to grips with everything. I can't quite seem to accept and wrap my head around it. Looking at the various treatment options and side effects of the treatment and my fiance is freaking out. He does not like to take any non natural medications, and despises doctors. We are getting married May 7th of this year, so to be hit with this one month before the wedding is alot for both of us. We've been through alot already. The loss of his father, subsequent fall out between him and his brother; a surgery on my hand to repair a torn UCL that had me out of work for 3 months; possibility that I may need a hysterectomy; he is graduating college end of this year which means his student loans are going to be coming due...

Robert has taken most of this in stride, but this is a bit much for him. I try to hide my pain to shield him from it as much as I can, but there are times when it breaks past and he's here and feels helpless.

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I feel for you. Any movement can set mine off so I would have a long list of triggers. But any thing that touches my left cheek. I have noticed most say they have it on the right side. My dentist also referred me to specialist but my doctor said it was not necessary as she could tell me the problem . She was no help as she did not recommend the meds or surgery. She gave me no solutions and little information. I sent off for the book several recommended, thank you all very much. So I am considering cannabis, medical marijuana. At 68 I have never used it but after that breath taking pain and crying for 20 min I would try just about any thing. Even talking is painful haven't tried kissing. I hope you have a free period for your wedding. I am living with my daughter and she, like your fiance is in confusion as what to do. She keeps wanting to take me to emergency when I have a bad spell.

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Sure wish I could obtain that here in Virginia ... It's not legal, although I think I read that it may have passed our General Assembly for treatment of epilepsy. My argument is ... If anti-convulsants typically prescribed for epilepsy are also prescribed for TN patients, then why shouldn't cannabis be available to us as well as epileptics?

Margie Dunn said:

I feel for you. Any movement can set mine off so I would have a long list of triggers. But any thing that touches my left cheek. I have noticed most say they have it on the right side. My dentist also referred me to specialist but my doctor said it was not necessary as she could tell me the problem . She was no help as she did not recommend the meds or surgery. She gave me no solutions and little information. I sent off for the book several recommended, thank you all very much. So I am considering cannabis, medical marijuana. At 68 I have never used it but after that breath taking pain and crying for 20 min I would try just about any thing. Even talking is painful haven't tried kissing. I hope you have a free period for your wedding. I am living with my daughter and she, like your fiance is in confusion as what to do. She keeps wanting to take me to emergency when I have a bad spell.

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Someone mentioned B12 vitamin. I take it for restless leg which is a nerve problem so I am goinging to increase the dose and see if it helps. When my legs jerk I take 1000 mg and it stops within a few minutes. Will post when I see results,or not.

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Hi there, I live in New Mexico so not that far from you, have had mine for almost 9 years, married with 2 kids, diagnosed after kids were born but they were both elementary. Triggers in beginning were anything that touched my right side, cold air or drinks or brushing teeth or hair on that side, eating anything chewy or hard. Things that make my TN worse are weather changes, menstrual cycles, stress and inflammation (ear infections on that side etc). Have had gamma knife twice and mvd once, after surgery triggers such as cold air seemed to not effect me as much. I take 4500 gabapentin and 250 Keppra daily, but also trying to add massage which seems to help . I am currently able to work but not able to do much in the evening tired and meds combo. I found covering face with warm cloth would help also sometimes. I have also found eating organically and natural foods seemed to help. Also getting enough sleep which is hard when in pain. My husband wakes me to take pill at night so I can sleep. I find my husband helping around house gives him something to do to help since not much else he can do.Hope you get some relief soon!!

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Thanks every one.

Medical Marijuana - I'm for it being legalized, but honestly I don't like the taste. I guess taking it would depend on how bad my pain is and if it actually helped.

Work - I started back to work this past week. I work at UPS loading the trucks in the morning. There are a few challenges in that. Not being able to sleep and being wired from the steroids make it hard to focus sometimes. My supervisors and coworkers keep asking me how I am doing, am I feeling better etc... I just respond with Same as usual, it's not going to get better. Some supervisors can't seem to understand that this is not something that can be fixed with a magic pill. I had to explain to my boss that I am on tons of meds, but none of them are narcotic as narcotics do not affect nerve pain. He had a hard time understanding. He always thought that narcotics could help any pain. (He is one of those who believe doctors can fix anything except death.) I outgrew that opinion when I was in 2nd grade. hehe.

I have one coworker who says he is inspired by my tenacity to work such a physical job and be in that much pain all the time. I figure I'm going to hurt no matter what, so I may as well continue on with my life while I'm at it. I did have to talk to HR at one point because some new person was making fun of the way my face twitches when the attacks hit, and I have to stop and take a few deep breaths now and then. Insensitive damn kids! For the most part my job is understanding and my coworkers are very supportive.

Medical - I found out that alot of my pain is triggered randomly from an infection in my last molar, so next wednesday I get to have a root canal. I almost hit the tech when she took the xray because she touched my face without telling me what she was going to do, and it hurt so bad I was crying. I had to explain to the endodontist what TN is so he could educate his staff as to how to handle my procedure. Having never had a root canal and hating the dentist, I am nervous about it. Not sure if the novacain or whatever they use will numb my face or not, so I am terrified of it being the worst pain ever. It's the very back molar too, so I will have to use a bite block to keep my mouth open for the procedure. (Though it would be equally terrifying and hilarious if I accidentally bite the dentist!)

Medication wise, I have had to drop my dose of Ibuprofen down as I was getting pains in my liver. I also take sublingual B drops for energy and have not really noticed a difference in pain levels. But I've been using them for years. I swear there are times when there are more meds in my system than food.

Life - The wedding is still on, and Robert continues to be supportive as he can be. Even if he does not fully understand what I am going through and is concerned about all the meds I am on. He is a big supporter of alternative medicine and herbal therapy, so he suggested acupuncture. Which I am afraid to try. I still feel as if I am torturing myself everyday when I get ready for work. It takes me an hour now to get ready in the morning whereas before it took me about 5 minutes. I carry visine around now because after I brush/floss my teeth, wash my face and pull my hair up, my eyes are red from sobbing.

I feel like a wimp some days because I always thought of myself as having a fairly high pain tolerance. I've had 4 kids, dealt with kidney stones, a ruptured appendix, gallstones, multiple broken bones, etc... but this pain has me like no other. It has affected me in ways I never thought possible. I've changed my eating habits so I don't have to chew as much, I'm considering chopping my hair short (and I am VERY vain about my hair!), I'm irritable and very moody. I never really liked to wear makeup, but was going to get a professional to do it on my wedding day. Now I'm afraid to get it done as I know it will hurt to have it put on.

I think the hardest thing for me right now is the emotional toll it's taking. I found myself getting irritated by something at work that I normally would have just shrugged off as that person's problem not mine. But I took it personally. I've always struggled with bipolar, so I tend to be hyper aware of my moods and normally will catch myself when I get irrational. When the depression hits, I let myself cry it out and tell my friends to check on me and get me out of the house now and then when I can't motivate myself. I'm used to being down, but not used to the sudden bursts of outright anger for little to no reason. I suspect the meds are behind it, or possibly the sleep deprivation.

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ALL Dentists know what TN is whether they admit it or not.They know because they can cause it and they also know that no one person can pin it on them because of all the other causes. Was your TN caused by the dentist probably but you will never be able to prove it and i'm sorry. The IBuProfen is crap it will not touch the pain. You have to get on Gabapentin (nuerontin or lyrica) This will take a huge chunk of the pain. You have to start on 100mgs and work your way up to at least 1800mgs it will take time to work but it WORKS better than any pain meds I take 3600mgs and it's non-narcotic. If you get prescribed the narcotic pain meds- Lortab, percocet, oxycodone, Keep it you WILL need it Save up while your trying to build a tolerance for gabapentin. Absolutely STOP hiding the pain from friends, family, and especially the Fiance, we all try and hide the pain to spare our loved ones of pain but you have to say how you feel because it is a progressive disease I hate to remind you of that in two years you could have twice the symptoms so be honest or people might think you complain because you want pain meds or attention it was such a problem for me My sister thought I was faking this disease for 7 years. She's a special type of asshole though.I Will answer any Q you or your family has to the best to my ability I am a 31 female in Atlanta Ga I've had Tn going on 8 years. If you need my phone number ask for it I don't mind talking on the phone.

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You have got to go to a neurologist or an Internal Medicen DR is best.Your meds don't make sense the only thing that is right is the nortriptyline and that is a 50/50 shot for most people.

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Do you think the prednisone has helped you any?