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Just been diagnosed

Posted , 5 users are following.

RachRoux
RachRoux

Hi everyone I was diagnosed with Trigeminal Neuralgia this week after pain suddenly started in march after dental work. My neurologist is sending me for scans to try and see if there is any underlying cause and I have been started on Lyrica 100mg a day which I am not really happy about as I've been on these before for chronic migraines and cluster headaches and the side effects of them are nasty. =(

I'm just really wondering what to expect in terms of this illness although I know everyone is different i just feel a bit in the dark here i really wasnt expecting a bew diagnosis. I'm 27 and I have a lot of health problems as it is so it would be good to have an idea of what to expect as I don't know much about this illness. Thank you and I hope you are all doing okay today. Xx

2 likes, 12 replies

12 Replies

  • valerie17599
    valerie17599 RachRoux

    Posted

    Hi RachRoux, I am so sorry you are going through this. I have had this for a  yr now, but i dont have the electrical shocks that the first type of trigeminal neuralgia has i have the 2nd type, where i have contant pain in and on my left side of my nose and gums where they took my molar out, and cheek and jaw. Mine like yours started after dental work. I googled everyday still do somedays all the info i can, not that it has done any good or that i have found a cure but just for info, and in hopes of finding something that will help. I take tramadol a pain med, and gabbapentin a anticonvulsant and ativan a anti anxiety med. The last yr has been really hard. I have alot of anxiety from the pain. You just have to hang on to hope that it will get better, because everyone is different, and yours might just get better on its own. My Pain is better on somedays and worse on others. It helps to have support.
    • RachRoux
      RachRoux valerie17599

      Posted

      Thank you for your reply Valerie I too also have the constant pain in the left side of my face but also experience the sudden stabbing electrical like pains with certain triggers. Are you finding the meds you are on helpful? I can only take paracetamol for pain relief which do nothing!

      I guess I will just see how things go, so far things seem to get worse as the days go on.

  • john02420
    john02420 RachRoux

    Posted

    What kind of dental work did you have done?  Is your pain on the side you had the work done on?  I know a guy that was having a tooth pulled and the tooth broke off and caused TN.  What kind of scan are you going to have?  Hope you can find out something.
    • RachRoux
      RachRoux john02420

      Posted

      Hi John I just had a filling that seemed to go okay other than the tooth being very sensitive after. I just thought it would take time to settle but the sensitivity got worse and spread to all my teeth on the side I had the filling and then the pain in my face started. The pain in my face is all on the side I had the filling which is the left. I am having an MRI to look specifically at the Trigeminal nerve to see if there is anything that could be causing the pain. We shall see I guess. RR xx
    • marlene36342
      marlene36342 RachRoux

      Posted

      Hi - just read your post to John.  I also had MRI done and was told by a neurologist that an MRI would not pick up nerve issues or blood vessel issues.  MRI's will pick up masses, tumors.  MY MRI came back negative but when I had the surgery had many blood vessel problems even to the extent of one blood vessel growing and wrapping itself around my trigeminsl nerve.

    • marlene36342
      marlene36342 RachRoux

      Posted

      Hi - this may be a duplicate reply.  I just found out how to send a private message.  So if you feel comfortable enough, you can ask me anything.  I have much experience with this disease.  Best wishes
    • RachRoux
      RachRoux marlene36342

      Posted

      I was told that this will be an in depth MRI that is set to specific setting to look at the blood vessels and nerves. It is not like the standard mri you receive that as you say pick up tumors etc this one apparently works at a higher frequency or something.
    • marlene36342
      marlene36342 RachRoux

      Posted

      Hi - this is wonderful news - wow.  When I had my MRi perhaps the hospital where I had it done was not able to go to this extreme.  I do remember the MRI though, it was a very old and small piece of equipment.  I am happy for you.  Best wishes and would love to know your results.
  • marlene36342
    marlene36342 RachRoux

    Posted

    Hi - first of all, I feel much compassion for you.  I was diagnosed with TN in 2006 and had MVD surgery in 2009.  Unfortunately, the surgery was unsuccessful.  I have much information to share - could write a chapter on my experiences.  Will mention that after my surgery, was no longer able to work and had to go on disability.  I have a suggestion - I can go into much more detailed info but feel uncomfortable sharing on this post.  If you would like, perhaps we could become fb friends and I can try and answer all your questions as well as offer what I've been dealing with.  This is only a thought.  Let me know what you think.

    • army183
      army183 marlene36342

      Posted

      Hello Marlene

      You can send private messages to anyone on this forum by clicking the little envelope icon on the top right of the message headers. I'll send you a one-liner to demonstrate.

      Cheers

      Big D

    • RachRoux
      RachRoux marlene36342

      Posted

      Hi Marlene I'm sorry to hear you have been struggling with this a long time and the surgery has not been successful. I can imagine you can write so much on your experiences with this illness. I don't have fb but you could private message me on here if that would be okay for you? Maybe speak soon RR Xx

    • marlene36342
      marlene36342

      Posted

      Hi - just found out by a group member on how to send a private message.  So, if you have questions, can answer you through private messge.  
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