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trigeminal neuralgia, seriously cant cope anymore, tips please

Posted , 86 users are following.

laura19209
laura19209

So I'm 24 and since Friday have been in agony, sunday the doctor said it was trigeminal neuralgia, after reading info on it, as I had never heard of it, its left me pretty depressed, I can't face doing any house hold chores, I've literally just lay on sofa, with my scarf wrapped round my head, feel like little red ridding hood! Not good when I have a 4 And 2 year old to look after, is there any tips on getting through this? I'll be honest early hours Sunday when it felt like my face was being stabbed with electric rods, I considerd taking all the tramadol I had, I was prepared to take that risk just to feel no pain, anyway I didn't the thought of the kids stopped me, I'm taking that anti convulseant tablets and so far provides some relive, although I feel rotten for taking them, is there any tips for getting through this? Since Friday its as though its ruled my life, would rather go through labour than this, never ever known a pain like this.

7 likes, 208 replies

208 Replies

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  • donna86115
    donna86115 laura19209

    Posted

    Thank you so very much! -Donna
    • stephen16460
      stephen16460 donna86115

      Posted

      My dad has TN and it's become very severe in the last weeks with spikes every other minute.

      I just started him on vaporizer Marijuana and will report back with the results.   Hope it helps...  We're looking into surgery.   He has had gamma knife surgery and another surgery with a plastic sheet between his nerve and vessel but nothing has worked yet.

    • alicot
      alicot stephen16460

      Posted

      What is vaporizer marijuana?  I am going to a marijuana clinic here to get help for when the pain comes back.  I hate the drugs the docs offer soooooo much. Need an alternative solution between surgeries.  Thank goodness for these surgeries.  They help but TN comes back so need an ongoing solution. Medical marijuana might be a possible solution?

       

    • stephen16460
      stephen16460 alicot

      Posted

      The vaporizer is a tool that heats up the Marijuana and turns it into a vapor that can be inhaled.   It's an alternative to rolling a joint and smoking it which is much more harsh due to the fire and smoke. 

      Vapor is also more fast acting.   It also leaves less odor around the house if smoking indoors. 

      So far no positive results after 2 days.   Going to keep him on it twice a day for the next week.   Have also an appointment with a Marijuana clinic. 

    • alicot
      alicot stephen16460

      Posted

      Keep us informed. And thanks for the explanation and good luck with your dad, poor guy!
    • robert27307
      robert27307 stephen16460

      Posted

      Hello. Sorry to hear about your dad.  Has the vaporized MMJ helped?  I would appreciate any feedback/input.  THank you
    • Tnhurtsme
      Tnhurtsme stephen16460

      Posted

      How has that worked for your dad on the vapor marijuana does that help your dad with tn

  • patricia64722
    patricia64722 laura19209

    Posted

    I had TN for 14 years. I am 71 years old. In April 2013 I had a balloon compression. I was an  outpatient for this proceedure.I have been free of pain for 16 months and its wonderfull. I was told it could last for 3 months or 3 years, so Im doing ok at the moment. Also if it returns I can have the proceedure done again. I was refered to tthe pain clinic for this .I live in England.  I can now hold my head under the shower which to me now is wonderful. If it comes back (perish the thought) I will definately have it done again,  Ive got my life back.

    Good luck with whatever decission you make.

    Patricia

    • alicot
      alicot patricia64722

      Posted

      Hi Patricia,

      Finally good news!  Thanks!  I am 63 and have had it for about 10 years but only got horrible a year ago.  I had a radiofrequency surgery  (they burn the nerve) which worked for 7 months, then the doc did the surgery again but burned the nerve more. So far so good.  I love not having the pain and having my life back too.  I know TN can come back but they just do the surgery again.  This is our life now with moments here and there of pain but mostly we are painfree!  Thanks for chiming in and letting us know your good news.  I am sad about all the bad news I have been reading on here..feeling hopeless.  It is important that we here the bood news items too!

      May we all find freedom from pain!

    • RachisCool
      RachisCool

      Posted

      I too suffer this since last May and I'd like the MVD op rather than years of unnecessary pain. Do you know anyone who's had this procedure? Anyone had the op?
    • rosemary24038
      rosemary24038 patricia64722

      Posted

      Hi Patricia ,I had an M.V.D February  then the pain returned with a ferocity .I had the balloon compression three weeks ago but still have several pains a day but not as bad as before.Did you have any pain after your balloon compression \/ I was told in hospital that these should settle down but I feel as though I'm going backwards.Thankyou.

    • helena31305
      helena31305 patricia64722

      Posted

      Patricia who is the doctor in the UK who performed your balloon compression? my mother suffers terribly and has been on medication for years without success. i think we have to go for baloon compression now.

       

    • patricia64722
      patricia64722 rosemary24038

      Posted

      Hi Rosemary the dr who did my balloon compresion was Dr Armstrong in York I have now been free from pain since 28th April 2013. I have now got my life back.I hope this helps you 
    • ibrahim57343
      ibrahim57343 patricia64722

      Posted

      Hi patricia very happy that you ate feeling better and hope the best of my hart that you would feel much better in a long term 😊

      Its 3 weeks iam suffering from tn type1 iam also in england , london , where did you get your treatment done i need help to speak to someone has gone throw this i feel alone and scared

    • patricia64722
      patricia64722 ibrahim57343

      Posted

      Hi ibrahim

      i went to the pain management clinic in york North Yorkshire. I saw a dr called dr Armstrong It was her that said I should have a ballon compresion I had it done in April 2013 It is now May 2017 so I have been free from pain for 4 years and it is wonderful 

      I hope you get your self sorted soon and wish you all the best

      Patricia

    • ibrahim57343
      ibrahim57343 patricia64722

      Posted

      Thank you very much patricia , i would get in contact monday , this is something the most uncomfortable painful situation i have been into , i have got it afer getting hair implants that makes it worst becouse i was 100% perfect i have given money to risk my life iam probly the second person on earth to have it after a hair transplant , the surgery was done perfectly but everyones diffrent it triggerd it iam in so much pain and so upset i just want to feel better again

      Ibrahim

    • patricia64722
      patricia64722 ibrahim57343

      Posted

      Hi ibrahim

      The pain is horrendous so I feel for you

      Are you going to get in touch with pain clinic 

      When I had my balloon compresion they knocked me out so I didn't know anything about it Icame home the same day So I have had 4 years pain free

      Good luck and let me know how you have got on

      Patricia

    • ibrahim57343
      ibrahim57343 patricia64722

      Posted

      Hi patricia

      Iam in london i have made a appointment with the pain clinic in london on friday its my first visit my pains gone away for couple of day with no med now iam geting it constant this is bad havent eaten much slept much its so bad

      Thanks for your support

      Is the baloon treatment long term treatment ? Hiw long have you sufferd and what was pains felt like the first days when it started becouse iam on my eatly stage been 3 weeks now

    • gill32586
      gill32586 patricia64722

      Posted

      Hi Patricia, I'm also in Yorkshire and have been a sufferer for over 20 years. Attacks gave been so dreadful and I'm currentky on Tegretol and Gabapentin- high dosages and no help at all after years of usage (Beware Tegretol can affect blood sodium so constant checking should be made)  I've had Themocoagulation 4 times which offered temporary relief but the dratted thing always comes back.. Could you tell me about balloon decompression please and what it entails. My Neurologist is at Leeds General and after many years he now seems to have given me. I do hope you have continued rekief up as all avenues have been exausted. I cant have MVD because of my age, 74, and general health.. I do hope you have continued relief, 

      Gill

    • patricia64722
      patricia64722 gill32586

      Posted

      Hi

      Iam also 74 Gill I suffered for 16 years 4 years ago i went to pain management clinic in York. I saw Dr Armstrong who suggested I have a balloon compression. I went in hospital for the day. Knocked me out  and then inserted a needle at the side of my mouth which was pushed up to gangloin nerve behind my ear. Then they put another needle inside the exsisting needle which has a balloon in it. When they can see where the needle is in the correct place they blow the balloon up to disturb the gangloin nerve.. It worked for me .I had this proceedure done 23rd April 2013. I am still free of pain which is now 4 years. Dr Armstrong said .If it comes back again(touch wood it wont) I can have the proceedure done again.

      I hope this discription is helpful to you.

      Regards

      Patricia

    • gill32586
      gill32586 patricia64722

      Posted

      Hi Patricia, It's a great help. I've heard and read about this but although I've had my consultant for many years and he seems to have tried everything ( including tooth extraction at one point at the  dental hospital although not usually advised) he's never considered or suggested balloon compression and I've wondered why. Getting an appointment with him is so difficult  as he's very busy but I'm going to try although I know it will probably take months. Not much help is it.? He isn't private and i'm loath to ask for a second opinion but I will definately ask him about balloon compression. Thanks so much for your reply and I hope you get continued relief. God Bless, Gill

    • patricia64722
      patricia64722 gill32586

      Posted

      Hi Gill

      I went to my gp who referred me to pain management clinic at York hospital  

      I saw dr Armstrong who suggested a balloon compresion She is also a lovely dr

      I hope this information helps you

      God bless

    • ernestine_93088
      ernestine_93088 RachisCool

      Posted

      I had the MVD twice finally pain is gone this far it’s been a year. I use CBD to keep the nerves relaxed. So far so good, better than the meds. Dr.gives me.
    • hsisk24
      hsisk24 ernestine_93088

      Posted

      I had the MVD last year! So far so good. May I ask why you had to have this surgery twice? Since I’m approaching that year mark it makes me really nervous about the pain returning!
    • ernestine_93088
      ernestine_93088 hsisk24

      Posted

      The pain returned 6 months later. So my Dr. said something was going on because I should be pain free for a longer period. 

      So he thought having the surgery again would relieve the pain. I decided to have the surgery again and the problem was I had a lot of scar tissue compressing the nerve.

      The scar tissue was removed and a smaller plate put in. I have now been pain free for a year and my triggers have disappeared. Best of Luck

    • hsisk24
      hsisk24 ernestine_93088

      Posted

      I’m so glad your pain is gone!! Thank you for replying back to me and giving me some insight. I hope your pain never returns! Best of luck!
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