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S U N A and Trigeminal neuralgia

Posted , 5 users are following.

angiegirl
angiegirl

I have Trigeminal Neuralgia or I thought I did after seeing several Doctors and being diagnosed with it.  Then I went to the UCLH and was re diagnosed by Mr Matharu, has anybody else seen him and been diagnosed with SUNA.      I am in the middle of a flare up and although I have had it from about 2004 I am all on edge and frightened as its pattern has changed.  Anybody else feeling like this at the moment as I could do with a pain buddy.       Now 2700 Gabapentine a day, 300 Carbamazepine,  500 Lamotridgene.      I can think ok and function ok but like everybody else it's the fear.  I have heard about a very exspensive honey called something like Hana ! anybody use it with the B12.           I also have to sleep sitting up in bed so I don't get much sleep as if I lay flatter as you go to get up you get a strike.       Can anyone chat 

1 like, 48 replies

48 Replies

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  • patricia_2468
    patricia_2468 angiegirl

    Posted

    Hi Angie,   While I'm good, I take 125mg Trileptal and 75mg Lyrica 4 times a day.  I set the alarm for when I'm asleep.  If I have a bad flare up I up the Trileptal by another 450mg and another 75mg Lyrica.  That usually does the trick.  It works quite quickly, usually 30 min to an hour.  If still not working, I might try more  Trileptal.  Then sleep!
  • Baudwalker
    Baudwalker angiegirl

    Posted

    These are tyhe drugs I am using as well. Just a bit heavier doses. I am on 600Mg x 4 times a day trying to halve that now. Sodium levels in the blood have dropped so that is one side effect. Lyrica I take 100Mg in the AM then 150Mg late afternoon and 200Mg before bed. This way I don;t get the stumbles during the day and am in bed when I enter the 'ZOMBIE' state.

    Lyrica is supposed to be a THREE A DAY drug according to my medico hence the levels I use.

    The main thing I need to control are the massive headaches I get right around the left eye. They are there every waking minute and vary from bearable to crippling depending on the day. Lyrica does that well but one wonders what it is doing to the kidneys!!

    Keep well and the TN under control

     

    • louisa55738
      louisa55738 Baudwalker

      Posted

      Reading your message to Angie, it seems you have been prescribed a mixture of drugs, was that through your GP or neurologist? I'm only on Gabapentin 900mg three times a day. This is helping, but I don't have anything to take when the neuralgia flares up, like last night. Over the counter pain killers don't touch the intense pain.

      like you though I am concerned about my poor liver and kidneys.

      Louisa

    • Baudwalker
      Baudwalker louisa55738

      Posted

      Medication was from GP with active prodding from me to read about them

      You are right the chemist stuff is useless

      Ray

    • Baudwalker
      Baudwalker angiegirl

      Posted

      Must be US spelling!

      My spell check says ' Neurologist'

      As long as we all understand who cares!

       

    • louisa55738
      louisa55738 angiegirl

      Posted

      The last one was over night .... But that is since I've been on Gabapentin. Prior to that I was is almost constant pain, although at varying levels for several months! I felt like I was going insane with it I could speak very well as I couldn't remember my words. 

      Im now much better but I have tingling and numbness in various parts of my face. I have swelling here and there and my left side of my face feels and looks different to my right side. Sometimes it's like wearing a mask........ All very strange! 

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