Hi
I have just been diagnosed with TN after thinking I was having sinus problems or ear issues. Started of I was getting flares of pain in my lower jaw and ear (right side) it would could and go. I was getting this pretty much for the last 7 months. It was painful but I was able to push through it. Three weeks ago I got hit with horrific pain in my jaw and ear. Bad enough to force me to the ER where I was told it was most likely an ear problem yet again. Two weeks later I got hit with the worst pain in my life. It was crippling. The ER doctor after looking at the ear and sinuses told me he was sure it was TN and prescribed me with Carbamazepine which has started working almost immediately. I get tired. Have dull headaches and even a bit of a cough that at times can cause me to throw up. Is that normal? And should I still ask to see a neurologist? Also I'm 32 so I know it's rare to get it at my age! Any advice would be greatly appreciated
Hi. I am so sorry you too experience the most awful pain this condition throws at us but pleased your medication seems to be helping. You are young to have TN, I was 30 when I first had electric shock pain along my lower jaw and I'm now 47. I would absolutely see a neurologist asap and would maybe ask your gp about the cough as I was on tegretol for a short period and didn't experience that or the headaches. As you are on this type of tablet I would also get regular blood tests to make sure you don't suffer from low sodium which was an issue for me. I wish you all the best and hope you feel much better soon. Paula
I honestly thought I was losing my mind for awhile or imagining it. I'm just glad that I have a diagnosis even if it's not something I would wish on anybody. So happy to have so many people to talk to about it all. At least I know I'm not alone. Since being on the meds I've had a couple of twinges but they were so brief and nothing compared to pain that sent me to the ER. Thanks for your advice. My doctor has sent me for blood tests which I have to have tomorrow as well as some tests with an optometrist to check my eyes as I have a hole in my optical nerve on the right side. I'm now wondering if that may have caused the TN. Crossed fingers everything goes ok
Good to hear you have a blood test tomorrow and good luck with the eye check. I hope it goes well! Just from doing years of research I take vitamin b12 and magnesium which helps with nerve pain. Might help you? Paula
That's great. Have heard some positive feedback about those. Is the B12 in injections?
Hi Wianette, I am no expert, but it seems that lots of people get "labelled" as having TN, when actually it is very difficult to diagnose. If you are still in pain and discomfort, I would advise you to go back to your dr and ask for a referral to a neurologist or Maxillofacial department, depending where the pain is. I have had pain in my face, but have also been diagnosed as having problems with my jaw. If your pain is mainly in your jaw area, taking into consideration how closely the jaw joint is to the ear, a Maxillofacial specialist may be best. I would do some research before going back to your GP so you can tell him, what referral you think you need! Good luck, it's terrible being in such awful debilitating pain. Louisa x
I just take the soluble form but I guess you could ask?
I was lucky in the ER that the doctor I got was willing to have a close look at all the symptoms and rule out what everyone else said I had. He even went and spoke to the head of the ER several times to discuss possible conditions. Not many doctors will keep looking or pay close attention to what you say. He was amazing. First episode was horrific but the second episode was like nothing I have ever experienced. The only reason he was able to come up with TN at the ER this time was because I was having an episode far worse than the previous one. Pain like electric shocks in my lower jaw which then moved to upper and lower as well as my ear and even chin area. Good thing was that he had heard of TN and one of the other doctors had actually treated someone with it. I was lucky. Apparently it's often misdiagnosed. I still feel little twinges on and off but they are nothing in comparison and still starting the anti-convulsion meds I haven't had a serious episode. Although the meds make me sick but I'm told that will most likely pass after awhile
Soluble would be best I think. I'm not a fan of needles! Am supposed to be up at the clinic to get blood drawn early in the morning but I have had a not so great night. No pain but the meds are making me vomit and I feel exhausted đ so I might try later on during the day or Tuesday morning. Have you found that the tablets make you sick and should I avoid certain foods?
Needles don't bother me, thankfully, but I take redoxon as it has everything in it. I was on Lyrica for a couple of years but it made me feel like I had dementia, then my hair started falling out and just recently the tablets started to give me an ulcer. I came off of all medication 5 weeks ago and last night I had the most awful night in years. Dreadful pain. I've cried all day but I'm not going back on tablets. Haven't found certain foods affect me, just pain when eating. I hope you have a better night and good luck this week! Paula x
Hi I agree the pain is like nothing else, I get the pains up into my head and it actually feels like my skull is going to crack open, it really is like lightening bolts through your face and head. But I never quite know where in my face or head the pain will strike or when. It is nice being able to speak to other people on this forum who understand the horror of it! As a matter of interest do you get the pains in your tongue? I do but haven't heared anyone else mention it. It seems the teeth and gums are common, which is where mine first started, but it now also affects my tongue too.
Hi. Mine started In January of this year. Like many people I first thought it was dental pain. I had 3 root canal procedures on a completely healthy tooth which was eventually removed. Great I thought there cannot be anymore pain as tooth has gone. How wrong was I it got worse. The dentist gave up on me and referred me to the hospital. It was me that googled my symptoms and found TN. I saw my doctor the next day and was started on carbmazepine. I was on it for a month or so, slowly came of it and amazingly no more pain. Felt confident enough to go back to dentist to get a tooth added to my plate, two days after dental work pain started
again! Back on carbmazepine and referred to hospital again. I didn't go to hospital the 1st time as pain went away, but what ever happens this time I am going to hospital. Very confused as my doctor firmly believes that TN is NOT brought on by dental work!! I am so confused. Has anyone else had a similar experience?
Sorry to hear that you have had a bad night. đ I had a kinda depressing night. Mostly because I felt sick and bad for my partner. He is wonderful and so supportive but I feel bad that he goes without sleep because he worries about me. Then I started thinking about the fact we have to put so many things on hold. Like having kids and our wedding until I am certain that things are settling down. It sucks. Feel better this morning after talking to my mother who has fibro and lupus so she understands how depressing it can be. One day at a time I guess.
It's great to be able to speak to people that understand what it's like. I'm doing well on the current meds although they make me sick and sometimes throw up. My doctor said that normal until my body adjusts to the meds. Haven't had any pain in my tongue although from what I understand there are many symptoms that can pop up in relation to TN. And even though I feel fairly good all things considering I still live in terror that I'm going to have an episode and so I'm careful to not spend to long away from the house just incase. đ hate feeling that way. But I'm hopeful that the meds will keep working and I'll get less paranoid about going out and doing normal things!
I've read that any kind of dental surgery can cause TN. My doctor believes that mine was caused by an ear infection at some point. Although I already have a hole in my optical nerve that may have also had some impact. I actually have a tooth that needs to be pulled and I thought maybe it was the reason I was getting pain in the first place. But the doctor in ER had a really good look at it and was able to touch it and even tap on it and found no signs of infection or abscess so he basically told me to worry about getting a handle on my facial pain and then worry about anything else. He said focus on one thing at a time which has helped me feel less crazy and more like I have some control over the situation. Does your doctor have a lot of knowledge of TN? Has he ever treated anyone with TN?
Hi
he has some knowledge although he did give me a fact sheet printed of the Internet, he doesn't see much people with it no.
Morning. Just had another awful night of agony. Shattered. Anyway, I too get pain in my tongue, very unpleasant. I haven't had it there for a few months though. Mine started in top jaw and had root canal treatment and no tablets for years as not initially diagnosed. More research and trials need to be done in the uk as for some reason a lot of the medical profession seem to think it's either all in our imagination or have scary surgery or toxic tablets!! Nothing in between!
My partners just found a London pain clinic at Harley street which deals in Botox and apparently are getting good results. Am waiting for a call back.
Hope you have a better day. Sorry to winge. Paula x
Sorry to hear you had another bad night. I had a restless night, as I find it difficult to find a postition that is comfortable. I don't think you are winging its just a horrid condition! There does seem to be a theme of dentist related stories on this forum. Mine started in my teeth and gums and sometime if I crash two of my back teeth together I get pain, but if I place them together and purposely bite hard there is no pain at all. Some days I feel as though my teeth are going to fall out, it's very peculiar!! Louisa x
Yes it does certainly help to share. I have my own business and haven't been to work since the 1st of June as I had a horrific attack of pain the last time I was there. The pain was terrible and scared my colleagues to see me in agony. I need to make myself go back tomorrow, but I am scared. I know it's sort of irrational, but I feel really nervous as part of me wants to stay cocooned at home, but the outgoing part of me wants to get back out there into the world. I have also fallen over several times recently..... A balance thing apparently and I am so scared of falling over again, at 55 I don't bounce like I used to! But I don't want to waist the last good years of my life being a victim of illness and I still feel to young to be getting old, but TN is making me feel trapped and old! So I agree I hate feeling like this âšī¸âšī¸âšī¸
Hi louisa
you are certainly not any where near the last years of your life, 55 your in your prime. If you feel you have the pain under control go to work don't let TN beat you. If you haven't got it under control speak to your doctor, there are many drugs out there and maybe the dosage can be amended so you feel confident. I know how you feel about the pain it's really is the worst thing I have had to deal with. But don't let it stop you living your life xxxx