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Recently Diagnosed trigeminal neuralgia, advise/tips! Help Please

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michele82354
michele82354

I am 26 years old and was just diagnosed with Trigeminal Neuralgia. I have never followed or participated in a blog before so I am hoping I am doing this correctly. I just really need help, tips or anything at this time would be very helpful and much appreciated.

I was diagnosed with Trigeminal Neuralgia a few weeks ago. To keep it short, I had horrific (the most unbearable pain) I have ever felt on the right side of my face. I thought it was a cavity and after Xrays and exams I was referred to a Neurologist where I was diagnosed with TN.

I am having a very hard time comprehending how/ why I got this and although my family is supportive I feel no one understands what I’m going through and how horrible the pain can be.

One of my concerns is now the right side of my neck, back and arm are stiff on in addition to right side of my face having TN. The neurologist said it’s just my nerves acting up and there is nothing they can do. I really can’t live like this and was just curious if anyone else has had the back and neck pain on one half of their body and does anyone know the likelihood everything will just go away? Thank you for your help in advance.

Michele

7 likes, 33 replies

33 Replies

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  • maggie80535
    maggie80535 michele82354

    Posted

    Hi Michele  Yes it's horrendous.But you must keep mentally on top of this,Your dr will have given you medication.Keep a diary showing time taken,strength of mess and times Pain bursts through,keep body and mind well by seeing a physio weekly and doing exercises at home.Dr will want to know all so show him the diary ,.Last of all remove all clocks,radios and phones from bedside cabinet and put on a table or cupboard away.Read all you can on factual websites,Knowledge is power.
    • karen25221
      karen25221 dick_00331

      Posted

      Yes I would ask the same I find it a bit odd and makes no difference I don't need to.log stuff apart from. When it's bad what might trigger and make it worse but don't know what causes it that's down to doctor, I can give him info what makes the pain worse like cold, he knows what meds I take
    • em_x
      em_x karen25221

      Posted

      hi!I don't keep a diary ov pain coz I av it constantly & I no wen I stress about sumat it sets it off even worse than wot it already is.I also wondered about the clocks etc....bit aswell? em x
    • maggie80535
      maggie80535 dick_00331

      Posted

      Hi Dick.when I went to bed I would get electric shocks so bad I would take an endone 5mg to get to sleep.doc said go back to position in before and pain went away.Also stand straight and still and hold breath.pain away in 10 secs.               I was getting into my shocks from any thing electrical near my head.My clever son worked this out.Proved correct once we moved items.
  • Glor888
    Glor888 michele82354

    Posted

    Hi Michelle

    Sorry you have had to endure this horrid TN. Out of all the medical painful problems people have my Dr said TN is the worst pain anyone can have. All my Drs that I have spoken to over the years regarding this pain have all been sympathetic.

    It does help if other people are knowledgeable about your TN. Ask them to read up on it and maybe they will have more understanding of the pain you're going through.

    Good luck with all of your trials and I hope you find something that will finally resolve your pain.

    Everyone is different, no matter how severe one persons pain is to another, TN is the worst pain any individual can have.

    Gloriana

  • maryam20950
    maryam20950 michele82354

    Posted

    Hello Michele:

    I have TN since 1996, and I've got that thru, wrong and unnesseties surgery, since then I am living in hell. I have this  on the right side of my face, half of my head, and all I can say half of my right of my body. the only thing you can do, you should see pain management center, who are specialist in controling different pain as well as TN.

    do not go to nuero-surgen, or neuralgist , they can not do anything.

    the nuero-surgen, might be, give suggestion surgery , do not do it at all, the pain gets worse, I've done two occipital crianotomy C1-C2, TWO STUPID SURGERY, (SORRY ABOUT MY LANGUAGE)THAT I Wish never done that. if I want to tell you my story,is going to be a book so please listen to me, not ACUPUNCTURE, NOT ANY ONE ELSE CAN HELP YOU.

    Just go to pain especialist, and few medication can help you , they will help you.

    if you have any question you can e-mail me. GOOD LUCK. I WISH THE BEST FOR YOU.

  • maryam20950
    maryam20950 michele82354

    Posted

    Hello again:

    after all, if you or any one else, find something ,please help me, every day, my pain, gets worse and i can not breath because of pain, and i do not know , what i have to do , even with breath, the pain gets more power and having sharp pain. let me know if you find something, please, i am begging ??????

    • je01880
      je01880 maryam20950

      Posted

      Ask your neurologist to allow you to try Lyrica (pregabilin) or gabapentin.  I couldn't not tolerate gabapentin, but Lyrica has saved my life.

  • missy1990
    missy1990 michele82354

    Posted

    Hello, I am also 26 an was also diagnosed TN. It started when I felt pain in my ear one day. And upon examination everything seemed to be normal but the pain was telling me something was wrong. I was diagnosed 2 months ago and have been on Nortriptyline since. Since day one of taking it I feel a bit better. But I feel like I may need my dose upped. The pain I feel is only in my ear, behind it, and the back of neck. I am now recently experiencing neck pain like what you have mentioned. My ear also feels very full and I have to wear ear plugs in the shower because any amount of water in them is tremendously painful. It just feels like I am constantly walking around with the world's worst swimmer's ear ever.

    • maryam20950
      maryam20950 missy1990

      Posted

      Hi; missy1990

      I have TN since 1996 about 21 years and I had two neurosurgery over that. The pain that you have, I have to tell you is not TN, based on my experience, the Doctor when they can not diagnose, what really cause your pain, say something, TNpain start from the face then goes under the cheek and lip on side always , and the pain is always very bad and is horrible and the worst ever . You better go to see, ENT especialtist instead of Neurologist.

      And do not go up on the Medication.

      I am sure is not TN.

      If you have any questions just let me know

  • ibrahim57343
    ibrahim57343 michele82354

    Posted

    Hi michele iam 29 just had my first tn attack 4 weeks ago

    I need some advice from you guys please

    I have ATN ,type 2 TN

    My pain is mild during the day until bed time , have panic attacks with tn really puts me down i faint to sleep and wake up with mild pain all day throw , havent taken meds make me scary puts me down low energy i think ill rather have the pain then feeling like a zombie ,

    Does anyone have constant pain on there left tempel , burning cheecks like as if someone has stuck a hook on your tempel and trying to pull it out ?

    Such a horrible think hope they find a cure , i heard researchers are looking for a cure by 2020 , lets cross fingers and wait , god give us strength 🙏

    • dona40912
      dona40912 ibrahim57343

      Posted

      Hi Ibrahim,

      I have ATN and I am only 27. It started as a toothache Dec 2015. My pain is also better during the day (but it is still pain) and gets much worse when I go to bed. I too have panic attacks as the future feels scary. I wish I could give you advice but I am still looking a way to live with it myself.

      I feel that you should take medicines. Don't be scared of taking them. Usually doctors give you epilepsi medicine or antidepressant. I have been against taking medicines all my life and when doctors in the hospital told me to take the medicine, then I totally freaked out and got panic. It took me a year to accept taking the medicines, but I just had no other way. The pain without the medicines was so strong that I was thinking about taking my life as I couldn't take the pain anymore.  In the beginning these medicines make you very tired and you might feel drowsy, but it gets much better. When I started with the medicines, then I was so dizzy that I couldn't get up from a sofa. But every week it got better and better. So don't be scared. Antidepressants and epilepsi medicines are not addictive like opioids are. I accepted taking the medicines after I understood that even some kids with epilepsi have to take these. If kids can do it, then I can do it too.

    • maryam20950
      maryam20950 dona40912

      Posted

      Hi Dona40912; I am agree with you my Tn started when I had Dental work and I think is the worst and horrible pain is ever in the world . I have Tn since 1996 and I always miserable and with out the medications I can not live I think Ibrahim has to see ENT especialtist and his symptoms are not look like person has Tn . Anyways Good luck
    • maryam20950
      maryam20950 ibrahim57343

      Posted

      Hi ibrahim57343

      I have TN for about 21 years, and I am seeing pain clinic since 1997 and after trying bunch of and different medication finally I am on LYRICA 200 mg 4 times a day and Baclofen 20mg 4times a day, I still have so much pain , sometimes I am unable to talk, and the pain looks like something very sharp pull my face towards my ear, and is very very Bad. I hope I can get rid of this pain and all of you too. Good luck.

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