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Confused is it to or post infected cranial neuropathy

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denise78365
denise78365

hi can anyone recognise these symptoms I had bad sinusitis March 2014 went to dentist got antibiotics didn't clear up went to Dr he said it was muscular! 2 days later I go for a routine eye exam the optician sent me straight to a&he with suspected swollen optic discs specialists put this down to infection in sinuses eventually after several weeks things settled but nasal passages were always stuffy and headaches. In June 2014 I banged my head badly right on the very top ended up having severe headaches 10 days later I woke up with top lip burning like crazy and marks in my mouth went to Dr gave my amitrypiline said she didn't know what it was took the tablets for 2 weeks completely knocked me out by this time my tongue started burning badly went back to the dr she sent me to maxillary facial who said it was geographical tongue I asked if it would go he replied no one has ever been back with it! Things got worse I ended up with anxiety and depression took an overdose ended up in a phsyciatric hospital for a week by then I was back at home I was getting electric waves coming from my forehead to the back of my ear lip was now totally numb and my tongue still burning I was put on pregablin I then started pain in my sinus more electric shock my teeth aching all on the right hand side of my face, I had to change Dr because mine was terrible wouldn't refer me to a neurologist nothing he told me it was anxiety! I changed Dr was put on mirtazipine for depression eventually had to pay private to see a neurologist paid over £1000 to see him got an mri which came back clear he said it was post infective cranial neuropathy and would settle down then discharged me, I have seen a chiropractic 26 times they were insistent it was musculoskeletal the pain is still here I'm now seeing a cranial osteopath who says it is trigeminal neuralgia the fifth cranial nerve is affected pain radiates into my eye my dingus my teeth the pain is constant with intermittent electric shocks it gas also affected my neck my shoulder and the top of my skull is so sore sensitive and burns it feels like someone pouring hot oil onto my head a bail driven into my eye and like having brain freeze after an ice cream with constant tooth ache do these symptoms sound familiar to those of you who have TN I insisted I go to the pain clinic I go 1st July but I would like info from anyone who can help me before I go, I cry everyday I tell my poor hubby everyday I want to die can anyone help please thanks

1 like, 9 replies

9 Replies

  • Glor888
    Glor888 denise78365

    Posted

    Hi Denise

    Im so sorry you've had to endure such a lot, I feel like I want to give you a big hug.

    I've not had some of what you went through but I have had other symptoms at first and along the way. But luckily it all settled down and I was just left with the electric shocks through my teeth and face burning and tingling. I've occasionally had stabbing pains in my right eye, the side of my head near the temple and slight burning feeling. I even had tingling in the side of my tongue.

    Luckily the Dr prescribed me the best medication and that is Tegretol. It doesn't suit everyone and I found the nausea the worst but after a short while it settles and you can get back to a normal life. But unfortunately after twenty years of TN the Tegretol didn't work for me so after a few trials of of different drugs this time around I was prescribed Pregabalin and it seems to be working ok for me at the moment.

    Also You may find counselling will help you. It's always good to talk to someone else who will listen. My daughter went through a bad time and she said the counselling helped big time.

    Im sorry I can't be of more help but if you are still in pain whilst your waiting for your appointment go back to your Dr and ask about Tegretol ok?

    Try not to worry and remember we are all here to help if you just want to talk to someone ok?

    Let us know how you get on. 

    Kind regards

    Gloriana

  • caryl33332
    caryl33332 denise78365

    Posted

     Denise,

    It does sound like trigeminal neuralgia.  The trigeminal nerve has three branches and usually only one is affected, but sometimes more than one can be affected.  There are various medications and treatments for TN.  The most effective drug is carbamazepine (Tegretol).  Treatment options include micro-vascular decompress, gamma knife, and other procedures.  You can find alot of information at the Facial Pain Association online.  With TN you generally want to be working with a neurologist and perhaps a neurosurgeon.  It is important for you to get as much information about TN and its treatments so you can make informed choices.  Take heart and if I can be of more help let me know.

    • denise78365
      denise78365 caryl33332

      Posted

      Thanks Carly I did true carbamazepine for 3 weeks and was constantly vomiting and burning stomach. I had to go back to pregablin but pain is horrific I have it 24/7 I had a look at the website you mentioned I spoke to a very nice lady who said its sounds like trigeminal but type 2 I have tingling tongue top lip numb my sinus is gnawing my forehead is tender and my scalp is burning but the lady said she wasn't sure about the neck pain I have had an mri which came back clear so my neurologist has discharged me into the Dr care I feel as if I have been abandoned I cannot get a control of the pain haven't since this started in June last year, I don't know if they would do surgery if there is nothing on the Mri showing clear or can they do surgery without having any pathology or blood vessel compressing the nerve I am sat here in tears I'm in agony x
    • caryl33332
      caryl33332 denise78365

      Posted

      Denise,

      The problem does not always show up on an MRI.  As a matter of fact I didn't have an MRI until the day of the surgery when they sedated me.  The second surgery I had we did the MRI a day or two before. Do you have someone who can advocate for you to help you get the medical care you need?  

    • denise78365
      denise78365 caryl33332

      Posted

      That's interesting to know my neurologist just said nothing on the Mri so basically gave me Meds and sent me packing got bad ear infection and sinus infection at the moment just rang the Dr for 2nd lots of antibiotics fed up
    • caryl33332
      caryl33332 denise78365

      Posted

      I spent years taking tegretol.  If I had it to do over again I would have opted for tthe MVD operation immediately.  But something I am learning is that the skill of the surgeon is critical in the overall success of eliminating pain.  I went through alot of misery when I could no longer take tegretol (remember this was several years ago).  What I am getting from this blog is that lots of doctors are prescribing Lyrica (pregabelin) now.  I think that is because of the known toxicity of tegretol...I could be wrong, but that is what I think.  But in terms of what you should do next is pretty simple...either through the use of drugs or through MVC you should be able to live without pain.  You will have to advocate for yourself.  As I advised before, be well researched so you know what you are talking about.
  • marielouise1966
    marielouise1966 denise78365

    Posted

    Hi Denise, Chin up!  You have quite a few symptoms but several are very TN.  Try reading about Atypical TN as well.  I apparently have a bit of both!  My top lip and cheeks are the electric shocks that knock you for 6, but the jawline is a sharp pain that can go right up to the ear and across the tongue and last for quite a while - makes you feel like having all your teeth pulled out.  When I just had the top lip one only, I swore blind it had something to do with my sinuses, but it doesn't.  My first 3 MRIs were clear, but the 4th the surgeon could see a shadow over the 5th cranial nerve hence waiting for MVD.  Get to see another Neurologist.  Phenytoin and Lamatrogine has helped me to a certain degree.  Take care x
    • denise78365
      denise78365 marielouise1966

      Posted

      Thanks for you kind words I'm going to the pain clinic and going to insist I see another neurologist or neurosurgeon who can reevaluate me 
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