zipping

Posted , 5 users are following.

Why is it that I can zip around town, do the chores and go to work but as soon as I sit down and, God forbid, ly down, I am suddenly in agony? What's that all about.

3 likes, 32 replies

32 Replies

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  • Posted

    I am 47 and mine kicks in with my monthly menstrual cycles. I've had three week's happy almost pain free month... woop de doo.. Now my face is killing today. I've upped my lamotrigine and took a couple of pain killers so see what happens.
  • Posted

    oh, i am the opposite. I lie down to ease the pain. Sometimes on the left and sometimes on the right will do it. Gravity moving the stuff in the head around?

    Cant be blood pressure. very strange indeed.

  • Posted

    Mine starts after doing a lot of leaning forward, like weeding in the garden or after a day of hard work. i find I can do very little if I want to stay pain free. The shocks are unbareable .  But its hard to give up so easy. There are times I can feel strange sensations across my cheek bone or popping nerve feeling above my ear , both pain free. Its very hard to relax and enjoy normal life now. I am awaiting an MRI which I hope will help find the cause. Simple things like going for a fast walk are a thing of the past as that will set it off. Strangely this all started after I was diagnoised with high bloodpressure and started on medication for the same. 
    • Posted

      Awful feeling isn't it Yvonne and I am hoping I'll go into remission but nothing since last May. Do you get remissions or does anyone else?
    • Posted

      I try stay as stress free as possible but finding that hard as the condition itself stresses me. When I am stressed out I like to do some vegetable gardening as I find the hard work is very rewarding. But for the minute I am unable to do that as it brings on the attacks. I do have remissions as long as I dont over do things. But I will have painless nerve hopping to remind me. But I would do anything to be able to do normal every day things. I have not long been diagnoised . But for years before I was getting stabbing pains in my eyes and all my teeth were giving me a lot of eletric like shocks. I was over doing it in my vegetable garden as I was behind on digging it after the winter months and thats when I first experienced the true shock like pain in the face in the evenings . I would be fine most of the day times but by evenings it always came. afer a while it decided to stay with me all day. then started the visits to my nuroligist . I was put on lycira which helped greatly but I quickly had very bad side effects. I weened myself off those. and learned if i didnt do the digging in the garden I wasnt so bad. So now I am living the life of a couch potato until I have my MRI. I find this site brilliant as I find it great for information and to hear what everyone else is going through. My family and friends are great but do not understand how it feels or how to understand how I feel. It is a lonely condition which I am greatful to have everyone on here to talk to. smile
  • Posted

    Hey Rach,

    What do you do for work? I am so lucky to have fallen into computer programming with a flexible employer long ago. Blue collar would have been tough now.

    eddie13

    • Posted

      I was office based but lost my job due to TN couple of weeks ago So now looking in agony and thinking who's gunna employ me with this horrendous illness now. It's ruined my live basically. Sounds depressing but I am not a depressive person at all. I have to push for an op or go private. What will you do in the long-term eddie?
    • Posted

      Rach,

      It is all scary and unknown when you are in the throws of it. Answer is simply get it under control. You CAN get it under control. I think I remember you not in favor of going to the neurologist, but that is where you get the correct medication! If can't get to the neurologist, the ER will get you the medication to start.

      Have you tried Tegretol ? (up to doctor of course)

      You are stuck TEMPORARILY until you come out on the right treatment. Once out, managing is not that bad relatively. I'm out and intend to stay out.

      eddie13

    • Posted

      I've had the MRI and nothing shown and I am totally in favour of the neurologist but my Doctors holding me up to be referred. I'll have another go at him tomorrow. Tregretol didn't work initially but I should give it another go.
    • Posted

      hmm, Had MRI so likely no lesions or compression. Teg may be the wrong thing. Wonder what condition you have dear. Report back. (sorry)
    • Posted

      It's to prove their no other causes like MS or tumours etc. Unless it's more operation exploratory or obvious nerves crossing causing the pain it's can't be seen.
    • Posted

      MS, as I have, would show lesions on the sheath that surounds the brain.
    • Posted

      I had 2 sets of MRIs, one was a general scan to rule out tumors/MS and then the other was a specific scan of just the trigeminal nerve. I had an MRA (to look at arteries) also. The first scan didn't show anything, but the second scan showed a blood vessel pressing on the nerve. Did you have both kinds of MRIs?

      If so, it isn't uncommon to not find a cause for the TN. I can't think of anything more frustrating! Tegretol didn't work for me either. I'm on gabapentin and baclofen now and it works ok, but not great. I hope you can find something that works for you!

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