1. Community
  2. Brain and nerves
  3. Trigeminal Neuralgia

Newly diagnosed with Trigeminal Neuralgia

Posted , 4 users are following.

wianette_67373
wianette_67373

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

1 like, 34 replies

34 Replies

Next
  • paula76255
    paula76255 wianette_67373

    Posted

    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 
    • wianette_67373
      wianette_67373 paula76255

      Posted

      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
    • paula76255
      paula76255 wianette_67373

      Posted

      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
    • wianette_67373
      wianette_67373 paula76255

      Posted

      That's great. Have heard some positive feedback about those. Is the B12 in injections?
    • wianette_67373
      wianette_67373 paula76255

      Posted

      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 😞 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?
    • paula76255
      paula76255 wianette_67373

      Posted

      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
    • wianette_67373
      wianette_67373 paula76255

      Posted

      Sorry to hear that you have had a bad night. 😞 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.
  • louisa55738
    louisa55738 wianette_67373

    Posted

    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
    • wianette_67373
      wianette_67373 louisa55738

      Posted

      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
    • louisa55738
      louisa55738 wianette_67373

      Posted

      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. 
    • wianette_67373
      wianette_67373 louisa55738

      Posted

      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. 😞 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!
    • paula76255
      paula76255 louisa55738

      Posted

      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

    • louisa55738
      louisa55738 paula76255

      Posted

      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
    • louisa55738
      louisa55738 wianette_67373

      Posted

      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 ☹️☹️☹️
    • dawn66194
      dawn66194 louisa55738

      Posted

      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

    • louisa55738
      louisa55738 dawn66194

      Posted

      Thank you Dawn for the encouragement. I'm normally quite confident, but the pain seems to have drained me of it. Hey ho onwards and upwards! X 
    • dawn66194
      dawn66194 louisa55738

      Posted

      Hi louisa

      i totally understand what you are going through. As well as TN I suffer from chronic pain due to numerous back surgeries.  Just take baby steps and you will get there.  If your ever need a chat or need to vent I am here.

      dawn xx

    • louisa55738
      louisa55738 dawn66194

      Posted

      Thank you Dawn that is comforting. I am struggling with a bad back. Which both my Bowen Therapist an Chiropractor say won't be right until my jaw problem is sorted, which puts me firmly back waiting. But it sounds as though you've really been through it. Take care and no doubt we will speak again soon X
    • wianette_67373
      wianette_67373 paula76255

      Posted

      Sorry to hear you had another bad night. 😞 and there is no such thing as whinging here. We all know how horrible it is and we are all here to support each other by listening and offering advice. I heard that they are having some success with Botox I'm not sure if they are doing it here in Australia. But try anything that you think might help. I'm suffering at the moment with some pretty bad nausea so eating is a challenge. I've only been on the meds for about 5 days so I'm not sure how long before the side effects start to settle down. Anyone else suffered side effects from the tablets?
    • paula76255
      paula76255 wianette_67373

      Posted

      Would a ginger tea/ginger in hot water with some manuka honey help with the nausea? Horrible when you constantly feel sick. You have my sympathy! I'm sure the tablets should kick-in soon. When I went on tegretol it was almost instantaneous as I could brush my teeth without feeling like my heart would stop. I had to come off of them because of the sodium issue. Let's hope you can feel normal again real soon and you can plan your future. Sounds like you have a wonderful partner. It does help when people care. Hope you have a better day. Paula x
    • dawn66194
      dawn66194 louisa55738

      Posted

      Hi Louisa,  let me know if you manage to go out and take care.

      one last thing 55 is not in ok you are in you prime xx

    • wianette_67373
      wianette_67373 paula76255

      Posted

      Think I might try that. Good thing is that tonight I haven't had an episode where I feel like I want to be sick. But I now have an aching feeling behind my eyes and across my forehead. Not like a real headache just aching! Not sure if that because of the TN or just because I'm so tired all of the time. Everyone has been so supportive and that has helped me so much. I have little bouts where I feel kinda down about feeling like everything is on hold but I'm sure that everyone goes through that.
    • wianette_67373
      wianette_67373 dawn66194

      Posted

      The best thing that I have discovered so far is this forum. Being able to talk to and ask advice from other people that know what I'm going through has helped so much. I broke down and cried last night knowing that my partner and I can't try for a baby anytime soon due to the medication I'm on and having to rethink our wedding plans because I'm not sure how everything is going to go. Not to mention I just don't have the energy right now to plan anything. It's hard to think about normal right now!
Back to top
Next

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.