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It gets worse - get seen!

Posted , 4 users are following.

marielouise1966
marielouise1966

Hi, I’m a 48 year old female with TN and a first time blogger!  I was diagnosed about 8 years ago.  When I first had TN the attacks were not very frequent.  Unfortunately 8 years down the line this current episode has been constant for 2 years.  I have been told the attacks get more frequent and more painful so please, if you are new to TN, make sure you are under a good Consultant.  GPs are RUBBISH.  We are 1:200,000 so most GPs don't know a thing about TN!  I have tried all meds under the sun, some of which worked (especially Tegretol) but then I quickly realised I was allergic to the best of them!  Currently I take Phenytoin which gives me some relief, but a dose higher than 250mg a day makes me very toxic.  Please ensure you have regular blood tests and know what your levels should be!  Last March they added Lamotrigine to the equation, so I now take 8 tablets a day. Very soon after adding Lamotrigine I suffered memory loss and confusion amongst other things and was diagnosed folate deficient and then treated (more tablets).  With the addition of Lamotrigine the pain got better.  However, why oh why does medication sometimes seem to NOT work??  I’m having for the last few weeks what I call my ‘medium’ pains and can just about function, but it makes you so miserable especially as I have a 10 year old son to care for.  I also work full time and hate to be off work.  It is a pain that no one can see (unless you're on your knees screaming).  I have found no magic cure unfortunately apart from don't talk, don't cry and brush your teeth after the attack has just started (bite down on the brush if it is too much).  As the meds are obviously unsuitable for me I have asked for microvascular decompression (MVD).  This I have at Kings, London in May.  I CANNOT WAIT.    Marie smile

1 like, 8 replies

8 Replies

  • eddie13
    eddie13 marielouise1966

    Posted

    Hi marielouise1966,

    That makes me Eddie13-1960. Allergic to Tegretol, what a bad break. Good luck with MVD. Let us know. :D

    eddie13

  • dick_00331
    dick_00331 marielouise1966

    Posted

    Hi Marie ,sorry you are having such a bad go of it.Hang in there it has to get better   yea yea heard that before but when? I'm doing all the right things as near as i can determine and if you are following this discussion you know that.Hope things get better for you in some way, shape or form.

    dick

  • Valkyrie
    Valkyrie marielouise1966

    Posted

    So happy for you that you have the MVD coming up soon. I am seeing my surgeon on the 16th April and i think he will recommend the same op to me. Please get back to us on how it all goes. They say only a couple of days to get out of hospital for that op. (i get out as soon as they let me because i know people sometimes get cross infection from other patients and i am a bit paranoid about that)
    • marielouise1966
      marielouise1966 Valkyrie

      Posted

      Hi, isn't it funny how we all get so pleased about brain surgery!  At Kings they say 2 days high dependancy then 3-5 days on the general ward.  I'm expecting to have at least 3 weeks off work depending on how it goes.  96% success, but I have TN in 2 areas (jaw and top lip) and if it is atypical it may not work.  Going to give it a go though as the outcome is better than anything else.  My head and neck consultant once told me that people who have been numbed via injection return to him in tears after about one month - don't wan't to be numb!  Especially in both areas - will be dribbling my food onto my chin!
  • RachisCool
    RachisCool marielouise1966

    Posted

    Please update us the operation. wouldn't bother me if it was a cure.

    Can the NHS do the op, I am hoping my GP will stop giving me meds and refer me.

    Does the pain clinic refer you yo a consultant? I am due to visit them soon and what can they offer?

    • marielouise1966
      marielouise1966 RachisCool

      Posted

      Hi,  Ask your GP to be refer you to a Neurologist.  The pain clinic will talk you through the pros and cons (as some will be anti surgery).  Always good to see a Neurologist to ensure you have no other neurological problems that can cause facial pain.  Have you had an MRI yet? They didn't see anything on my first 3 at my local Trust, but I think Kings scanner had a higher resolution and the surgeon showed me the 'shadow' on mine that he assumes is the artery laying across the nerve root.
  • Valkyrie
    Valkyrie marielouise1966

    Posted

    If you're not squeamish watch the op on youtube. I did the other day and it was very informative actually. I always thought the brain was a bit like a cauliflower with spaces they could go through to operate but its a bit different to that.haha
    • RachisCool
      RachisCool Valkyrie

      Posted

      Omg no way I am not iinterested the nitty gritty just put me to sleep and wake up cured. :-)
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