Trigeminal neuralgia, trigeminal neuropathy and cluster headaches

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Hi. I was diagnosed with TN (atypical) in 2014. Since then I have developed numbness, pins and needles, and heaviness/squeezing pains in my fingers, toes, arm and leg. All symptoms are on my left side only like my TN pain. Does anyone share my story or clarify if these are MS symptoms please?

Thank you.

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10 Replies

  • Posted

    Hi Janine

    I have just started to feel some of these myself.

    Not confirmed but I understand it is more than likely Peripheral Neuropathy.

    Mine started after a series of chemo sessions. During the hemo I had the tingly fingers but a dose of hot water soon sorted them.

    Not now though, numb type feeling in the hands, oins and needles type feeling and can't do much with small things now as far as grasping them or picking them up.

    Not anywhere else but the hands but there is plenty of time (I hope) for that.

    Off to the GP as there are blood and other tests they can do to confirm or otherwise these conditions.

    Forum diagnosis is probably and bad as self diagnosis but it gives you somewhere to start.

    Good Luck

     

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    • Posted

      Thanks for sharing your story. I agree about self diagnosis as it becomes easy to look for symptoms you read about in yourself.

      I hope these forums help shed light on similar cases and natural remedies. I find consultants want to stick you on the meds too quickly.

      I have had 6 months in remission without meds, against my consultant's recommendations. However I have started to experience the return of pain again and I am willing to try anything before going back on the meds.

      I hope your symptoms don't get any worse and the blood tests get to the bottom of your problem.

      Good luck.

      Janine

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  • Posted

    Omg I just join this page to respond to this post. I'm right now Googling my hands fall asleep at night. plus I suffer from trigeminal neuralgia. Both of my hands fall asleep at night and my feet sometimes do during the day. My father has MS and my brother has Bell's palsy.
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    • Posted

      I have had MRIs done and the results always come back nothing is wrong but micro tumor on my pituitary gland. Are you on any antiepileptic drugs for your TN? Some have this side effect I believe Topamax is one.
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    • Posted

      Hi Christine. I was on carbamezepine (tegretol) and pregabalin but haven't taken anything since November 2015 when pain went into remission. My pain has started returning so it looks like remission over and need to go back on the meds. However because of the side affects my consultant wants me to take oxycarbamezepine this time.

      I am also waiting for a contrast MRI as like you all the others came back negative. Have you had one?

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    • Posted

      Hi Christine. I was on carbamezepine (tegretol) and pregabalin but haven't taken anything since November 2015 when pain went into remission. My pain has started returning so it looks like remission over and need to go back on the meds. However because of the side affects my consultant wants me to take oxycarbamezepine this time.

      I am also waiting for a contrast MRI as like you all the others came back negative. Have you had one?

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  • Posted

    Hi Janine
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  • Posted

    I was on Tegretol and I had to stop a few weeks ago because of side effects. I have had a few MRIs with contrast. sad
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