First I’d like to introduce myself and tell you my story…
A little over a week ago I kept having this sharp, mild pain in my chin. To me it felt like a monster pimple was trying to work it’s way out. The next day I had a raging toothache. I tried to wait and see if it would go away on its own, but after two days I couldn’t handle the excruciating pain anymore so I went to my dentist. He did a thorough exam, including several xrays, and concluded that this was not a dental issue. He suggested that I should give it a few days and go to my GP if needed. After 2 more days the pain was now all along my jaw, and all along my to teeth; all on my right side. I was on the verge of a nervous breakdown because of the pain, so I went to the ER. There they said I had TMJ or TN, gave me a prescription for hydrocodone and sent me home. The pain pills did NOTHING!! First thing Monday morning I saw my GP. The pain was now also into my cheek, roof of my mouth, and my tongue; also ask on my right side. The right side of my face is also noticeable swollen, especially in my top lip My GP preliminarily diagnosed me with TN and is referring me to a neurologist. She gave me a prescription for Neurontin, which has helped tremendously!! I’ve only been taking the Neurotin (600mg 3x a day) but I can say my pain is now tolerable!!! Yesterday, day one of taking Neurotin, I was like a zombie. I could hardly walk or talk. Today I woke up and felt much better, but still a little unsteady. As the day has progressed I’m feeling more and more “normal”. I’ll continue taking Neurotin while I await my appointment with the neurologist. Hopefully the neurologist will be able to definitively tell me if this is TN or not… So that’s my story thus far
Now for my questions… And I know no one here can diagnose me over the internet, I’m just looking for general opinions.
Does this sound like TN?
Has anyone had facial pain, taken Neurotin and had relief, and NOT have TN?
THANK YOU to anyone who has taken the time to read this! This is all very new to me, and kind of scary, so I greatly appreciate any support that’s given! And I’m very thankful that I’ve found this site!
I’m pretty swollen today. I’m going to call my GP and update her. I’ve been reading tons on the internet and from what I’ve read this can be normal but I’d feel better hearing it from her. With the insurance I have referrals take forever so hopefully this can speed up the referral process too.
Glad you found this site! It has helped me tremendously & given me comfort on bad days.
I, too, take 600mg of Neurontin TID along with Oxycodone 5mg twice daily for excellent relief (I have Atypical Trigeminal Neuralgia). I have a fantastic Neurologist (who is also a Pain Management doctor), who has worked with me through pregnancy and depression and everything in between. I also use the Lido patches that KC mentioned above. Your symptoms are very similar to mine. I suffer more when the barometric pressure changes. I try to stay on top of the pain and do other things such as chiropractor, relaxation, Biofeedback, etc. Please keep us posted on how your apt with the Neurologist goes. It's so important to have a doctor with a good understanding of TN and who is willing to work with YOU throughout the process of getting properly diagnosed. The people on this site are well educated on this disease and FANTASTIC! Good luck sweetie....
Glad you found this support group! It has helped me so much! It’s my “Hope” Group I ditto PackerRN. It does sound like ATN. Pain is more constant. I’m a young 52, have had since my 20’s but diagnosed at 50. I’m trying to help raise awareness since it took that long. I had much unnecessary dental work. I have a hard time believing they did not know about TN. You will find great help with this group. If Neuron-tin helped you, probably a sign you have it. I’m glad it gave you relief. There are many meds to help. keep positive if you can. D
Thanks y’all!!! I really appreciate all the support! This has all been so sudden and so strange. Just knowing there are others like me is kind of comforting, and sad at the same time. I hate that so many are going through this. I wouldn’t wish this pain on my worst enemy
My GP wants to see me this afternoon because of the swelling. Hopefully she will realize how serious this is and can speed up the referral process so I can see a neurologist soon! The last time I had a referral it took almost a month to see the specialist! I definitely don’t want to wait that long. I hate not knowing exactly what’s going on. I want a definitive answer, saying yes this is what you have and we know that because of this.
So I saw my GP and I’m pretty frustrated. She’s putting me on steroids and an antibiotic for the swelling, and she said it might be from a clogged sinus. She said swelling is not a symptom of TN. I told her ice read that many people have had swelling with TN and she said “that’s just not possible” I asked for a cream or a lidoderm patch and she said that wouldn’t help at all and there’s no such thing as a lidoderm patch that can be used on your face. So she gave me hydrocodone for the breakthrough pain. I’d rather just use a cream or patch than a narcotic!! I can’t wait to get to a neurologist, I’m sure they’d help much more
It totally sounds like TN. I had the exact same symptoms and three doctors have dxed me with TN. I'm sleepy as all get out on the carbamazopin. I'm surprised they went straight to neurontin. I don't know if I can stay awake on this med I'm on now- I feel drunk. Ugh! I hope you find relief soon.
Well first I was given hydrocodone, but only a few days later I got the Neurontin… But I’m SO glad I have it!! I couldn’t function with the horrible pain. But with the Neurontin I feel almost normal. The breakthrough pain sucks, but it only happens a few times a day… MUCH better than the 24/7 debilitating pain I had.
Welcome to the group, glad you did find us, but also sorry you have to be here. But it is such a great place for support! I hope you get into Neuro soon and just my opinion, would find another GP. The problem with TN is it effects us all so differently, some so much the same, but there is so much unknown. I have had swelling, just on occassion, but no other issues were found. When first diagnosed many years ago, I started on Neurotin, and it has indeed for me, been a life saver. My side effects are minimal and like you, have those break through moments, but much more liveable than the years I went without diagnosis. Hats off to your dentist, my dentist just kept pulling teeth, even tho appeared no problem and I always agreed because I wanted the pain to stop! There are days, but we can go on with TN and we are all here for you always!
