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Dramatic reduction of Pain and attacks

Posted , 8 users are following.

Christchild
Christchild

I've had Tn for about 2 years with only one remission that lasted 3 months.  I have been at every level of pain from bouts of stinging/burning like a 1 or 2 then weeks of stabbing, lightening bolts of pain.  Totally a ten.  No eating,talking,smiling, drinking,brushing hair or teeth, no wind, crying.......then out of necessity, last week I started an outside yard project that I thought would last about 5 minutes due to an episode or attack.  Five hours later! I went into the house amazed.  The physical exertion stopped all the pain.  I did the same thing for the next four days with the exact results!  What is this?  Has anyone had this happen?  I take no medications.  I've has such problems with them.  I'm trying to go with natural supplements and occasionally I'll take Tylenol or an aspirin.  The exercise pain block stops in a couple hours but has reduced it to stinging and burning.   MRI showed normal brain.

why is this helping?  

2 likes, 16 replies

16 Replies

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  • SE26
    SE26 Christchild

    Posted

    Hi Christchild, I’ve experienced something similar in that, when I’m home suffering with with TN then when I’m out and about shopping etc I experience much less attacks and can even speak to people and only have the fuzzy bearable pain when talking. It has made me think that perhaps distraction through doing a physical activity helps. I’ve had TN for about 2.5 years and have recently tried Botox to avoid surgery as medication is no longer effective in pain management.
    • Christchild
      Christchild SE26

      Posted

      Thank you for reply.  Has the Boxtox helped?
  • mark44210
    mark44210 Christchild

    Posted

    Hi Christchild,

    Sorry to hear about your pain.

    Try hot tub or a warm shower (make sure you use a scarf and warm bath robe after to stay warm. This helps release tension.

    If it is not too cold out, a 30 min brisk walk warms up the body. I find that staying home and not doing anything worsens the pain - activity helps.

    Lastly, do try to find a good acupunturist (my pain went away - I had TN for 3 years) and stop whatever is causing you stress (not an easy task but worth looking into.

    Get well soon,

    H.O.P.E. Hold On, Pain Ends

    • Christchild
      Christchild mark44210

      Posted

      Mark I have noticed that hot showers and baths help relax the body and lessen the pain/attacks.  How long since the acupuncture?  Do you have to keep going?  This is so hard to live with and function.  Just to lick my lips or touch my forehead is pure agony at times.  I cry so much when I read people's struggle or watch a YT video.  I also feel so alone because there seems to be very few that have this disease and few that have ever heard of it.  It breaks my heart!

      Sorry, I'm real sad and emotional today, other days I'm stronger and hopeful.  Trying to keep the faith.  Have a good day.

    • mark44210
      mark44210 Christchild

      Posted

      Hi Christchild,

      If you believe in tcm, the cause of TN is blocked “qi” (due to emotional issues such as over-thinking and diet loaded with salt, oil and sugar). When we engage in activities or take warm baths, we relax and the movement of the stagnant “qi” helps make us feel better (pain may even go away when qi is flowing). I have been painless for months but I understand that if I revert back to my former lifestyle (no exercise, stress and unhealthy diet), TN will come back - a visit/s to the acupuncturist will be necessary.

      Also, look at peer reviewed medical journals with successful treatment of TN with acupuncture. I have 20 sessions but you will have the pain go away by your 6th/7th session if your acupuncturist is legitimate.

      Get well soon!

  • al07085
    al07085 Christchild

    Posted

    I have had this TN for about ten years and I’ve had focal radiation to the trigeminal nerve .. supposed to shrink the nerve . And I’m on gabbapentin ,well the radiation helped for quite awhile  . But the last two weeks I’ve been suffering. But getting to your answer about staying active is true. My TN flares up right after a nice dinner and wine and then when I try to relax afterwards It starts up real bad for about 2 hours . Bottom line is stay active. It’s hard for me because I’m retired. Someone else told me activity helps So There is difinently something to it. So try to stay well Christchild. Thanks for your info.
    • Christchild
      Christchild al07085

      Posted

      hey, thanks for your reply.  I'm recently retired as well.  I'm just pushing it, haha!  Pulling weeds, spreading mulch but I can't work this hard all the time.  I worry about the prognosis that says the remissions will cease and the disease worsens as time goes by.  I've had this for two years and you for ten.  Has that been your experience?

    • mark44210
      mark44210 al07085

      Posted

      Hi Al07085,

      I hope you can try a simple experiment. If you have a vegan dinner that is gluten free and sugar free (with no alcohol) [option 1], and one with oily meat, sugar, wine etc [option 2], Option 2 kicks up the TN level of pain - used to keep me up all night. I also found out that even 2 pieces to toasted bread in the morning can bring about a spike in blood sugar -> neuropathy (ie, nerve damage/issues).

      I hope this helps.

    • al07085
      al07085 Christchild

      Posted

      Hi again Crhrstchild, I don’t think the TN worsens through the years but I’ve had a lot of ups and downs through the years the TN that I have had the last couple of weeks has been as bad as ever. Everybody finds their own way of coping with this dreadful thing. Good luck with your living with this thing. My neurologist tells me the only real cure for this is brain surgery. 70 percent effective. Not really a good deal. But I think it depends on how desperate one gets. But we all know that doctors don’t have all the answers.
    • vicki78970
      vicki78970 al07085

      Posted

      Sugar is a huge trigger for me. wine has a lot of sugar. I also have to stay free of acid foods such as tomato's. Hope this helps! confused 

  • mark44210
    mark44210 Christchild

    Posted

    Hi Christchild,

    As a follow up to my reply, I notice a few of our forum users swears by tumeric. I have not tried it but if you look up tumeric on google, it has the quoted effect of moving stagnant “qi” - very much like what you are doing in the yard when you exercise!

    Mark

  • H0C
    H0C Christchild

    Posted

    I have had it for nearly 5 years, and have had same experience with sustained physical activity.  Running, biking, swimming, hiking, digging... all make it nearly non-existent.  I've also had issues with medications, primarily with gabapentin and that category of drugs where my white blood cell counts dropped very low.  However, I started amitriptyline about 2 years ago, and that helps dull the pain to some degree in high doses.  Then, about a year ago, I tried cannabidiol (CBD), and it was a GAME-CHANGER! In the right dosage, it eliminates the pain on par with physical activity, and side effects are nil (unlike with pharmaceutical meds).  It has enabled me to cut my amitriptyline doses in half.  I'm confident I will be able to discontinue the pills altogether once it becomes more widely recognized & prescribed in the medical community.  I highly recommend to do your research & decide for yourself, but it has truly changed the life I live with TN!

  • joanne63973
    joanne63973 Christchild

    Posted

    That has happened to me too.  Previously I was a gym junky and very fit but due to family situation and an injury to my back I had to cease all physical activity.  I have only had this terrible condition for about 2 months but I have found that with tegretol, yoga, walking 4 kilometres every day and body balance I am managing quite well.  I do need to have a half hour sleep every afternoon and that helps a lot.  Also I try to avoid anything with sugar in it. 
  • erin97088
    erin97088 Christchild

    Posted

    Hi all. 

    I was wondering if anyone could help me. I haven’t been officially diagnosed with TN yet but I’m convinced its what I have and I’m really scared. It’s stressing me out. I have been to the dentist three times and he has ruled out any problems with my teeth (I did need a filling but it didn’t take he pain away and the pain doesn’t come directly from that tooth) I have seen the doctor this week and she has referred me...... who to I’m not sure. She prescribed me amitripiline and I have been taking them 3 days (10mg) I’ve still had the pains this evening, like an electric shock in my tooth. You see I’m getting married in 7 weeks, and I have a week away for my hen do in 3. It’s likely to take upto 6 weeks for an appointment. The medication doesn’t seem to have done anything yet. I know it’s early but what am I going to do. Did it take you long to get a diagnosis?  Any help would be greatly appreciated, I’m 28 and my pins always seem to be in the evening. Thanks so much Erin 

    • vicki78970
      vicki78970 erin97088

      Posted

      Erin I am so sorry for your pain & that it had to come at this important time in your life. They say stress & or injury to the mouth brings this on. Avoid tomato's any any & all acid foods & sugar. I found that if you take 800 mg of Turmeric (It's a spice you can buy in the pharmacy at any drug store. It doesn't have any side effects) in the am you're pain free for 12-14 hours. Being your pain is at night I would try it at night.

      Hopefully you can get into see the neurologist before the wedding.

      A lot of people can't handle cold or hot things to eat & drink. I find a warm cup of coffee calms the nerves in my mouth down. 

      I pray this helps. Just relax, take deep breaths. It helps!

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