I honestly have just lived through the most painful weekend of my life. I was diagnosed last week with tn. I have been experiencing pain for the last couple months. Just started getting severe in the last couple weeks. I have been taking 1800 mgs of gabapentin a day and am now being switched to carbamazepine. My ear and my jaw have been killing me. My teeth can't be touched even with my tongue. That was just a brief history I guess. My question is this. Is this something that will occur? I mean am I going to be OK one day and feel like its the end for me another day? I'm scared to do anything. I'm just really scared. I feel like no one understands this. How could they, I don't. I am scheduled for an MRI Friday with a follow up Monday.
Hi Jessie and welcometo this site. Have you looked at the Face pain info tab at the top of the page, you will get a lot of information from there about face pain etc. It seems as though it is still early days for you on the medication and this does take time to kick in properly. Once the carbamazepine begins to work you may start finding some relief in your symptoms although I am sorry if this did-heartens you but initially it can be trial and error with the meds until they find one that suits you! The good thing is that once the medication starts to work it usually does give a lot of relief to the pain. I wish i could say that one day you willbe okay but everyone is different and reacts differently to the meds which we are given. However, it sounds as though you are in good hands with been sent for an MRI so early as many people wait so long to be referred for an MRI.
Good luck with the MRI and I hope that the medication soon relieves you from some of this pain and hang on in there as things will start to improve for you.
Best wishes
Mandy
I am so sorry that you are in so much pain. This is a site where we wll understand your pain and fears. We share the load we all bear. You will be okay. Things will get better. It may not be soon enough but they will eventually get better. I responded quickly to the Carbamazapine when I started it in spring. I have been experiencing more pain now. This is the nature of the beast we fight. I know that I will feel better eventually and so will you. You have to keep the hope alive. In the meantime try a warm compress on your face. Drinking warm water rather than cold helps a bit too. Hang in there.
Thank you both. I feel so lucky that I found this site. It truly has given me some hope. Thank you so much!!
You can ask for LIDOCAINE mouthwash prescription - it will numb inside your mouth and maybe take some pain away?
Keep Posting!
Hi Jessie, I am so sorry that your in pain, but don't be afraid. I can't make promises, but I am pretty sure you will find some relief eventually with one of the many meds. Just like Jackie said, there is a lot of trial and error, but don't give up hope (ever). I am not pain free, but I can get through the day. We all want to be pain free, and hopefully we will all get there. I have been on this site for a while and have seen a lot of success stories! I have also received incredible support from others here. I know it is scary at first, but with this site you will gain a lot of knowledge and become an expert. Just be patient, and come to the site when you need support.
Wishing you pain free days
I am trying to stay positive. Yesterday and today haven't been terrible, but still sore. I don't know what happened tonight but as I'm laying here it started to hurt a little up by my ear and now it's been pretty intense pain for the last fifteen minutes. I`m trying to understand what caused it to flare up but I've done nothing different....
Hi Jessie,
I completely understand where you are coming from. I was diagnosed 3 months ago and this has turned my life upsides down. I’m so very sorry for what you are going thru and may continue to go thru. I’m on 1800mg and the carbamezapine. It does has strong effects on me, butveveryone is different. I have been writing down all my attacks, how intense they are, how long they’ve lasted and what i was doing at the time. Maybe you should do this, incase your attacks get worse,vthen you can show your neuroligist. I’m glad your getting your MRI. Let us know what the outcome is. It does sound like your Dr’s are moving on this quickly. Let us know how it goes. Many prayers to you
Melissa
Hi Jessie, I am so sorry that you are in so much pain. With some luck you can get the right combo of medicines in the shortest time and be relieved of pain. Hang in there…
Warmest regards.
Hey Jesse,
What's with all the younger people getting TN these days? It used to be a problem associated with the elderly. Perhaps there is something wrong in the foods and waters. Anyway, I feel for you and your situation, but have to promote Carbamazepine as I use it personally (400mg/day, 100mg every 6 hrs) and find it keeps most outbreaks away. From time to time I get a spike, but no long persistent sessions like I used to have pre-medicine. It did take about 2-3 weeks to become fully functioning in my system, but within a few days it started to lessen the pain.
Best of luck with the treatment, and remember to keep taking the pills without stop even if it doesn't seem to work. It has to build up in your blood levels, and to do that you need to keep taking the pills.
eric
Thanks everyone. The neurologist upped the dose of carbamazepine yesterday to 400 mg twice a day and I’m still on 300 mg of gabapentin three times a day…is that normal? They had me on 600mg three times a day when I started the carbamazepine, but ny body couldn’t handle that much. I was stumbling all over…i honestly feel as if I could fall asleep standing up. I guess I went through this when I started the gabapentin. Anyway, hopefully this is the right answer and the MRI can explain where this pain is coming from. Thanks again.
Hi Folks, I figured that it is about time to offer a bit of my history with TN, so here it is. Sometime around the end of last year into the beginning of this year, I was experiencing pain in the upper left jaw line, that would start as a burning sensation in the left side of the roof of my mouth and work its way forward to the gum line where pain hits and spreads across to the ear and up toward the eye. I have a history of dental problems, including multiple abscesses in the upper gums. It felt very much like another round of them. I remembered that ice gave me immediate, but short term relief so I did what I thought was the right thing and applied an ice pack. I found out instantly how wrong that was. The pain intensity shot through the roof. I reversed tracks and applied heat and was relieved to feel the pain subside. This continued for a couple more months. During that time I had about a half dozen severe episodes. The worst was on St. Pat"s day that lasted all night and kept me awake of about 40 hours. I also became aware that with each severe episode, they gained in intensity and duration. I was able to identify three levels of pain: Mild (sorta like an abscess type pain; Moderate (like when you have been beaten in the face with a hammer; And Severe (This is the one I refer to as my "Spiritual experience... It's when I am brought to my knees negotiating with God). Being a "man" I thought I could give it the ol' "take two aspiring and walk it off" response. Of course that didn't work. After my wife stayed on my back and fought her way through my stubborness, I went to my Primary Care Doctor. She at first treated like a sinus infection. But after x-rays and a couple rounds of antibiotics with no relief, she sent me to an ENT. He ordered an CT and Rx pain meds. The x-rays and CT was negative. He discussed the possiblity of TN with me and sent me back to my Primary with a recommedation for a referral to a Neurologist. My primary agreed, said that if it is TN it is beyond her training and experience and said the neurologist would be my best bet. I saw the neurologist who not only did a good exam but explained alot about TN to me. I was started on Dilantin and Tramadol. The dilantin lasted only a week because of skin rashes. He changed it to Tegretol and added hydrocodone to me mix. Since starting the meds, I have been very fortunate in that I haven't had much of the severe pain. Generally the worst it gets is Moderate. I truly believe that the meds are doing their job in managing the pain. I have an upcoming Dr. appointment on Dec 7 for a re-evaluation. Since the last Dr. visit, I have been having some mild pain on the right side. It is generally short term and comes on fast and lasts for about 15 minutes at the most, then stops. I'll discuss this with him as well. Since the weather has changed, I have found that the cold and wind triggers pain very quickly. Eating of course can be difficult, but I compensate for that during the good days by eating well. I have just received a couple scarves from my wife that I will be using. In as far as the meds go, I don't expect to be pain free. I do expect that it will assist in managing the pain. I also use a heat pack frequently (even have disposable ones in the glove box, just in case) and when the pain is real bad, I dim the lights, turn on some gentle background music. I even began using a warm saline sinus rinse at the onset of the pain. I'm not sure it helps, but I figured that the warm water gets into the sinus area near the nerve and maybe it helps soothe it. At any rate, my sinuses have certainly been cleaner lately. It has been difficult for my wife and son. She wants to rush me to the ER each time it happens. He is 17 and doesn't like to see his dad like this. It has been a gradual learning process for all of us. So that's it folks. I'm know that my experience doesn't measure up to what I have read about a lot of yours. So for that reason, I feel very fortunate. Until next time.... Best Wishes.
Jessie,
I’m so sorry you have TN. I know everyone here either has gone/is going through attacks like you are, or is watching someone they love go through it. We all hurt with you. First and foremost, know you are not alone.
Second, do not lose hope. Push your doctors, try new medications and combinations of medications. If your doctors get irritated when you push, find new doctors.
My 12 year old daughter was diagnosed with TN this past July, and I was terrified and hopeless at first. So few doctors are helpful. But we pushed, got two MRIs, tried drugs. Now, her pain is managed with Trileptal, even if math is really hard because of it. And in two weeks, she will be having the MVD surgery with Dr. Carson at Johns Hopkins. We have hope. Even better, I have a smiling, playful daughter back.
It doesn’t mean there won’t be challenges, and we don’t know if MVD will be a “fix”. But we are doing better.
You can get this under control. You will need to be strong and advocate for yourself - and see if there is someone who can go to doctors with you to help push. And know that there is a TON of advice and support here, too.
In our prayers.
Jesse, I added my history to this thread hoping that you will see that the may be some common ground there with my experiences and others, with your own. Please know YOU ARE NOT ALONE NOW. You will find understanding from these kind folks. I hope that you will continue to check in often and perhaps make new friends. Best Wishes.
LT Ron, just wanted to say thanks for sharing your story!
Your three levels of pain description resonated with me.
Hope you are well …
Mimi
Well I had my MRI Friday... had an appointment with my neurologist today. The MRI showed nothing. The doc upped my dose of carbamazepine to 1800 mg a day and kept the gabbapentin at 900 mg per day. I have started to feel a little better but unfortunately I believe because of the pain had a migraine this weekend. A terrible one. I hosted thanksgiving dinner this weekend and spent half of the day in my room. My doctor said that they won't do anything about until my face pain is managed. Does anyone else get migraines?
My migraines have been reduced. I am eating mostly gluten free since my diagnosis in spring. Gluten cause inflammation and I am trying to keep any cause of inflammation to a minimum. It, or perhaps the Carbamazapine, has also reduced the frequency of my migraines. I am so thankful for that. I feel so badly for how your weekend went. My doctor is a wonderfully compassionate man but he does not know very much about TN. We are learning together. I am learning to research and be an advocate for myself. I have had an MRI in spring which also did not show anything and will finally see a neurologist on the tenth of December. We are all in this together. Wishing you pain free days in the very near future.