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TN - do your symptoms change?

Posted , 8 users are following.

karen36710
karen36710

I was diagnosed in June 2016, text book symptoms of the electric shock like pain, immediate relief with meds.  However the next 3 months were horrible, drugs at dosages too high for me, two bad allergic reactions during which my symptoms were more like atypical TN...burning, bruised like pain, constant pain, very very few electric shock like pain.  I went off everything for a few days to clear my system and then went back onto gabapentin 100 mg twice a day and nortriptline 10 mg at night.  Pain was tolerable but sometimes exhausting as it was fairly constant, like someone had hit me in the face.  After 6 weeks of this my pain has changed it is now intermittent "jabs" or mini electric shock like pain.  Has any one experienced this?  Does the characteristics of your pain change?  Thank you for sharing.

1 like, 9 replies

9 Replies

  • susan33651
    susan33651 karen36710

    Posted

    Hi,

    In my experience yes, but that was because I was in Oxford earleir this year during a particulary bad bout of extremely cold weather, rain/sleet, icy winds etc. Before this trip the majority of my pain was in my left eye, side of the nose and across the top teeth, with the occasional stab in the temple, and the odd stab on the right side of my scalp. BUT within a day of that visit it was as if my face had exploded! I have so much more pain, stabs, shocks, bolts of pain pretty much all over my face and scalp plus the sensation of a spikey-footed spider crawling over my left cheek, jaw, and ear. Since then I have had trouble getting the pain under control. If it's not the left side it's the right side causing me grief! Many visits to GP to adjust the medication and have now got an appointment with a Neurologist. 

    I find that the spider sensation becomes more obvious if I don't take the drugs on the dot and more often in the 30 minutes or so before they're due. I've also started to get electric shocks around my nose and upper lip whenever I sneeze. Not looking forward to winter at all. I have asked for a Balaclava for Christmas, LOL!

    Best wishes.

     

  • clint71
    clint71 karen36710

    Posted

    Oh yes, the pain can change and the trigger point can move. For me, it would move from one eyebrow to my upper lip, and anywhere in between. Have you had an MRI to rule out Multiple Sclerosis and/or a tumor? That's generally standard procedure with TN-like symptoms.

  • lee12629
    lee12629 karen36710

    Posted

    Have you tho7ght about treatments,gamma knife etc?
    • karen36710
      karen36710 lee12629

      Posted

      I saw a specialist, a neurosurgeon in Sept and supposedly I am on the list for MVD in May 2017.  I assume that I will have to have another MRI before the surgery and be reevaluated.  The diagnosis was atypical TN, but I seem to be more typical now....plus the MRI showed the artery and the nerve close together but no clear compression.
    • lee12629
      lee12629 karen36710

      Posted

      Thank you my friend has gamma knife procedure tomorrow, worried about her.
  • lhicks10
    lhicks10 karen36710

    Posted

    Mine changes all the time. The changes usually last for a while, a few weeks or so. It'll be tolerable for a while and then the electric shock pains will come in for a few weeks (currently my situation). It really sucks and makes things so much more difficult. I've missed two days of school this week and I'm a college student. I went all day Sunday without eating. Walking triggers pain at times and it's super exhausting, all I do is lay in bed and sleep. I can't even open my mouth most of the time, so meds are difficult to take.

  • Jewell
    Jewell karen36710

    Posted

    Yes. Appears you and I were diagnosed at about the same time. I have the same symptoms as you. Spoke to neurologist nurse practitioner today who has had TN for 15 years. After talking to her and reading posts from this site, I understand that this may be a forever thing, the goal being managing the pain, not a cure. Apparently the gamma knife procedure doesn't necessarily cure it. No guarantees. Apparently it reoccurs in many cases. So I guess I'll focus on pain management for now. Good luck to you and hang in there. 

    • karen36710
      karen36710 Jewell

      Posted

      The only "cure" is MVD surgery ....it has the best chance of removing the pain for the longest time.  What I read is that the surgery should be done within 2 years of the onset of symptoms.  And yes this is a reoccurring problem and only gets worse.

  • Stupid1
    Stupid1 karen36710

    Posted

    Karen36710,

    U may be the person that ur meds work on,

    I take (3 ) 300 mg @ bedtime andb (1 ) 150 mg; oxcarbazapine @ betime..

    I had MVD surgery and still take these pills. I was getting the shocking with pain in my gum really awful pain.

    Since surgery I have not had those shocks but sometime I get pain but not as bad as it was b4 surgery. I am happy that my shocks r gone so far, zi pray 2 God that I am cured.

    I guess those r my TN changes, but I really never had changes b4 surger.

    God bless

    us and keep is and give us peace.

    .

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