I may have successfully treated my TN!!

Posted , 7 users are following.

Hi everyone, i was diagnosed with TN in 2011 at the age of 25. It went away for 3 years then cme back in march this year. It kept getting worse over the last couple of months that i couldn't eat, talk etc without getting painful shocks to my face, i lost weight because of this. I kept increasing my tegretol until it no longer worked. Last wednesday i was taken to the hospital by ambulance because i kept getting stabbing pains over and over and over in my face. i was just screaming. i was scared to talk, lick my lips, eat etc that i had to communicate with the doctors and nurses with pen and paper. i was given an iv because i had not eaten or drank anything in days. i was given morphine shots for the pain but that barley helped. i had an mri done 3 days ago but it came back clear so there is no known cause for my TN. I had enough. i started b complex pills at one a day 3 days ago, i also drink ensure, lots of water and naturally made fruit and vegetable smoothies. to my suprise my shocking attacks got less and the pain was not as intense. i last took one 200 mg tegretol almost 24 hours ago compared to 4 just a week ago. i have had no attacks all day and i was able to eat without any problems. i feel like crying considering what i have been through. so please guys try vitamin b complex, lots of water and a healthy diet and it may work for you too. no harm in trying.  relief wouldn't come over night so don't give up!!!

4 likes, 17 replies

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17 Replies

  • Posted

    Thanks Patrice,

    My pharmacist mentioned b complex, yesterday. 

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    • Posted

      my doctor also told me to throw in an ensure for the extra nutrition. i noticed mines got worse when i started to stay hungry from fear of attacks and i think the fact that my body wasn't getting proper nutrients and hydration caused my hospitalisation fron TN pain last week. I can now eat without attacks. 
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  • Posted

    All,

    I have had TN for 13 years.  It is seasonal and responds to barometric pressure.  The only thing that has partially worked for me is sterotactic radiosurgery, aka as Gamma Knife. This  is a form of radiation treatment.  I have had all of the other treaments, (MVD, gycerol, drugs, etc.)  The glycerol worked for about 6 months and tegretol almost killed me as my liver shut down.  This a disease that will not go away and one that you will have live with until better cures are found.  Stay tuned and I hope you are in remission.

     

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  • Posted

    About the only thing i am sure of with TN is that its a complex condition and is different in everyone. What causes yours may also cause mine or it might be something totally different. I hope you have found the fix for yours but if not, keep trying different things. That's what i am doing because each time mine comes back its different to the time before. I think I caused my own TN by damaging the nerve years ago when i stupidly used a piece of cotton between my teeth instead of dental floss and it slipped and cut my gum so deep i fainted. I had never felt paid like that in my life but now i have, over and over. Currently i am in some kind of remission but terrified it will come back suddenly again. I think i will try vitamin B complex. Why not>

     

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    • Posted

      yup try it why not also a healthy diet is key as well. i read some people had relief from eating healthy aand natural foods free of chemicals/processing. just keep searching for what works for you. 
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  • Posted

    Hello Patrice

    Can you be more specific  about the vitamin b complex. I've seen references to trials with B12. Can you mention a brand/type please. Glad to hear your in better control. Thanks for the messages.

    Alan

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    • Posted

      GNC B-COMPLEX Big 100, i also drink an ensure or 2 everyday. I honestly thought this was never going to stop and it just kept getting  worse and worse. then suddenly i start taking the b complex and drinking ensure as suggested by my doctor and a couple dys later i can eat without any shocking pains. i lost 6 pounds from last week until now. i just want to eat everything now i am so happy! 
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  • Posted

    Hi

    I will definatly try B complex on my Daniel who has TN an c if it has any positive effects, how did you hear about this. Pleased to hear it has helped you hope that contiues. TN though is so different on individuals what seems to work on one has no effect on another but i think it is important to try everything as a life on drugs is no life at all. Many thanx for advice keep us posted on how it is going

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    • Posted

      my doctor advised me along with ensure. i cannot believe i can now eat without pain. i lost 6 pounds in a week. i would be starving and i wouldn't eat because of the attacks. i have had no attacks all day and i just want to eat everything. i hope your son finds relief but everyone's TN is caused by different reasons so keep trying different and natural rememdies. i also read that some of our baths soaps and stuff contain triclosan/ triclocarban which causes neurological disorders. we have since stopped using those soaps. 
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  • Edited

    I saw the mention of B12 earlier in this discussion. I tried that myself a couple of years ago and it worked very well for a time, then not anymore. I am now using L-lysine which is supposed to act on the trigeminal nerve if its being excited by the cold sore virus (which i get from time to time) It seems to be working at present...I notice mine is worse in the winter than in the summer
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  • Posted

    Hi

    I',m trying to help my sister. She has suffered really bad for at least the last 3 years.

    She went through Chemo & radiation. Survived breast cancer but this TN is driving her crazy. What you have described is everything she is going through.

    I'm very concerned about her. It breaks my heart to see her in this kind of pain.

    Tuesday she is going to a pain management Dr. We have been to so many Dr.

    Thanks for th info on vitamin B & water. She will try anything.

    I will be praying  for you too.

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    • Posted

      hi dawn so sorry to hear that. remember it's b complex gnc big 100 to be specific. i also include an ensure in my diet (its costly but i am only doing it for now until it's gone for a while) i also read some persons had relief with healthy eating so try that as well. she should try to avoid chemically processed foods as much as possible. she should do a trial for  week or two on the things i am using and let me know if it's helping
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    • Posted

      I agree with everything in this discussion. TN is a very strange ailment/condition. I can not eat chocolate although other sweet things including lollies do not affect my TN. I think the more suggestions and information we can get from this discussion the better so that we can all keep trying. I also read recently that in some people with TN oats give them grief and many have said online that too much saturated fat adds to their pain levels. At least we have the internet as most of us could not get the info anywhere else or help either. The local TN support group where i live has disbanded presumably because no-one could get there due to their pain and the distance they had to travel.
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    • Posted

      i did not have any shocks to my face for almost two days then this morning i had a soda when i told myself i wouldn't (stupid on my part) now this evening i got about two faint ones that caused no pain or discomfort and i think its because of that junk drink. i know better now. 
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    • Posted

      Hi i was really sorry to hear your sisters story, i really pray she finds somthing that helps and gives her some relief, i have seen so many doctors with Dan and some of them not always, that helpfull, and they try make Dan out to be a difficult case but coming on here makes me realise he is no more complicated than anyone suffering TN, who have tryed many treatments and still suffering it saddens me to say that seems to be the norm with this terrible condition. I will definatly be putting Dan on B complex like everyone else you have to try anything to beat this condition. please keep us posted on how your sister is doing
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