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

just need to know im not the only one

Posted , 5 users are following.

bonnie_27099
bonnie_27099

Hey im Bonnie, im 25. I've had a problem for 10 years that doctors are just now saying is unclassic TN. My pain is literally debilitating and breathtaking and absolutely nothing helps. Everything i do causes short lasting spasms of sharp, stabbing and twisting, crippling pain that shoots out of my left ear. It used to be both ears until i was 3 months pregnant with my daughter, the pain completely went away, then came back about 3 months after she was born, worse than ever and only on the left side. The chronic pain lasts about 20 seconds straight then fades to a more dull but still debilitating pain that lasts 3-4 minutes. After the pain stops, it takes a couple minutes to be able to think clearly and see straight again only for all of it to happen all over again... this happens at least 10 times every hour of everyday. I am exhausted because i cant sleep and I'm always grumpy because i cant ever even sit long enough to relax. The past 3 months have been challenging, its gettimg worse. I can feel myself getting slower, my words are slurring my reaction time is a fraction of what it should be. i cant drive, i cant work, and i cant play with my 2 year old daughter. I dont know what to do with myself anymore, i dont like to go out in public because i look crazy when i have to stop right where i am and put my head down to hold my ear. Im truely ready to give up if i cant find relief. i hope that someone out there can relate and help because im out of options and im tired of suffering

1 like, 11 replies

11 Replies

  • wanganui
    wanganui bonnie_27099

    Posted

    Oh Bonnie you poor girl my heart reaches out to you! You do not mention doctors ,medication,support.....are you under the care of a doctor? You have just had a baby what about your health visitor?Your partner/ husband? You must seek help if you haven't done so( apart from here.)Is there anyone who can give you some respite from baby care?And someone who can be by your side,go to doctor with you ,just be there for you.You sound desperate and of course you are....I'm so glad you posted here...now you will not be alone.There is help out there for you,you will improve.
  • wanganui
    wanganui bonnie_27099

    Posted

    Sorry I see you have seen doctors....read your post early this morning very quickly and your despair leapt out at me! Do please go back to your doctor and ask for more help...show him your posting here if neccessary ! Hugs,you are not alone!

     

    • bonnie_27099
      bonnie_27099 wanganui

      Posted

      Wow thanks! didnt expect an answer back so soon. I am prescribed medicine in which the lowest dose practically paralizes me and it doesn't take away the pain, im a stay at home mom so i choose not to take it. Im actually scheduled for an MRI later today but my doctor says there isnt much they can do about it no matter what the results are. My pain is ONLY in my ear with very mild numbness in my right cheek and the left side of my forehead, whitch is why she called it an unclassic case. My next doctor appointment is in a couple weeks tho, im gonna ask if they can just clip the nerve and be done with it if theres no other way to get relief. I am just scared of the risks involved in that procedure.
    • bonnie_27099
      bonnie_27099

      Posted

      Has anybody here had that procedure done? If so can you tell me what the results were please? I could lose all feeling in that side of my face or be deaf in my left ear
    • wanganui
      wanganui bonnie_27099

      Posted

      I think anyone thinking of having any invasive treatment for facial pain is scared ,goes along with the choice.I too cannot take the meds as the side effects are too great.I am now awaiting a neurologists appointment.Id questioned as to whether nothing can be done for ATN or type 2!!Research and be your own advocate ,I know that is so hard when you are in pain and have a little one to look after...good luck with MRI today! 
  • Glor888
    Glor888 bonnie_27099

    Posted

    Hi Bonnie

    Im so sorry you're suffering. I agree with Wanganui that you must seek help. Ask your doctor to refer you for an MRI scan, see an ENT specialist etc. You don't say if your on any medication now, or if you've had medication but it didn't help. If so which medication have you tried?

    I really do hope you get some relief asap. And yes stay in touch we are all hear for you.

    kind regards

    Gloriana

    • bonnie_27099
      bonnie_27099 Glor888

      Posted

      Thank you, it really is comforting knowing it isnt just me. ENTs dont know whats wrong and i got everything in my mouth fixed when i was 17. Ive been searching for help this whole time and until recently, i couldnt find it anywhere... i went all the way to the Cleveland clinic because i heard they were the best and the would find the problem, ive been to TMJ specialists, ENTs countless ERs and even had a doctor tell me i was lying to try to get drugs.. i stopped looking for help and just dealt with it day by day for the past 8 years, But like i said, these past few months have been different. Like i feel like im slowly losing myself it is scaring me.
    • bonnie_27099
      bonnie_27099

      Posted

      When i was 15 is when it started, i was in a youth program and i was dropped on my head durring a trust fall off of a 6 foot platform. They only caught my feet whitch made the back of my head and neck slam to the ground... I've told everybody this and it seems they disregard that even though the pain started the next day and the pain has only gotten worse over the years
    • wanganui
      wanganui bonnie_27099

      Posted

      Snap Bonnie I am like you...I also have been dealing with the pain on a day to day basis the best I can and getting on with life..it has been hard but I have done it.But these last three months my reserves of resilience have been rapidly depleted .! I think your body says enough you can't do this alone,seek help.....and yes it is kind if scary this loss of control over your pain.But you have this community here ....post whenever...
  • eddie13
    eddie13 bonnie_27099

    Posted

    Hi Bonnie27099,

    Not fair that you're so young. Have you seen a neurologist? If so, what is your plan of attack? If not, you need an appointment asap.

    As outrageous as it is, try to remember it will not be all the time; and when it subsides, you will feel like nothing ever happened. No permanent damage. The condition can be controlled to the point where outrageous out breaks are very rare.

    eddie13

  • bonnie_27099
    bonnie_27099

    Posted

    Bad news for me, MRI came back normal. Idk what to do now, that was my last chance to pinpoint the problem... im so upset, i can only cry and feel bad for myself... i really thought they would be able to tell me exactly whats wrong. Guess I'll continue smoking pot and taking way too much ibuprofen until somthing terrible happens or until they commit me to a mental hospital because they think im lying... im stuck and more depressed than ever.
Back to top

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.