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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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  • laura19209
    laura19209

    Posted

    Oooh bless you, that's so similar to me, i was meant to have a tooth out or root canal i went for the extraction but when i was meant to go i had bad tonsillitis, so i never had it out, i understand completely the night it was at its worst i took 30 tramadol and it never touched the pain next day i was diagnosed, i was on tegretol, bur then went onto 500mg gabapentin 3 times a day, tramadol and amitriptiline at night if your in fb there's a good group called trigeminal neuralgia uk group i recently found loads of friendly people on there smile i too were a scarf round me face feel stupid but too scared not to were it hope your okay x
  • joanie1958
    joanie1958

    Posted

    Hi, have just been diagnosed with Trigeminal Neuralgia and am in constant pain, I cannot eat anything

    without my cheek feeling like it is on fire and it makes me either cry out or scream and the pain from the

    right hand side of my skull,ear,cheek and neck constantly throbbing has been going on since 23rd Dec

    when it felt like I had lock jaw, my doctor has subscribed Gabapentin 10mg and is slowly increasing it

    each week now, but I am getting no pain relief at all, I also take Morphine, Zomorph, Baclofen,Arthrotec

    due to spinal problems and was also on Amitriptyline but was taken off that. I am very confused as my

    Doctor has told me nothing about this problem apart from what I have been given and although I have

    trawled the internet can find nothing about what help there is, it seems like there is very little known as to how this is treated. I am already under the pain clinic for my spinal problem and constant pain with that

    as it affects the nerve system already down my right side and now this. Is there anybody out there

    that can give me any information regarding this problem I would be so grateful.

    • gill32586
      gill32586 joanie1958

      Posted

      Hi Joanie, Oh, my darling. How I feel for you. Like others on this forum , I too suffer from this and I know how difficult it is to cope. I feel for you so much. I don't think you have got through to your docter. Unless he is a specialist neurologist he just will not undestand what you're going through. You must insist on seeing an experienced specialist who can try various treaments or procedures. I have been helped by my man and have been seeing him for over 20 years. There is help which you can try. Please do so Love and prayers to you. Gill

    • colleen90451
      colleen90451 joanie1958

      Posted

      I know how u feel, I was in constant pain for 5 months, I could not take it any longer, surgery made me feel so much better.
  • chrisw10
    chrisw10

    Posted

    That sounds really painful, hope you get it sorted soon. Just thought I would share a story about a friend of mine. She was diagnosed initially with Trigeminal Neuralgia and given very strong medication but it did not resolve the problem. Her symptoms were not typical in that stroking of the face and brushing her teeth did not bring on the pain. In the end it was found that she had a tooth abscess which the Dentist had missed, so for anyone else out there if you find you are getting jaw pain but the symptoms are not typical make sure you have your teeth checked, and not all abscesses show up on a tooth x-ray unfortunately!
  • patricia64722
    patricia64722

    Posted

    I have TN for 16 years. Last april I had a balloon compression and for 9 glorious months my pain was gone. Sadly this past week it has come back. I will if I can have the balloon treatment again. 9 months of free

    pain will be worth it. After 16

    years of trying different drugs (which don't work).

    I was very interested in the result for trying marijuana ,but where do you get it from ?

    • osur_raghu
      osur_raghu patricia64722

      Posted

      After 30years of suffering, I have found out that an effective remedy for TN is just two pills of anti varicose vein tablets twice a day for two days.

      Use alternative herbal tablets which cause minimum side effects

    • BigM
      BigM osur_raghu

      Posted

      What is the name of the varicose wein tablets? This could help alot of people here! Is this by perscription only? What are the herbal tablets?
    • rosemary24038
      rosemary24038 osur_raghu

      Posted

      Hi ..I've just seen your post re varicose vein tablets for T.G.N ..were you taking any medication alongside these ?I have had an M.V.D & balloon compression this year and am on Gabapentin ,Phenytoin , Baclofen & Lamotrigine .Thankyou.

  • alicot
    alicot

    Posted

    I, too, was put on these drugs and I felt so awful. Warning...neurologists tend to want you to stay on drugs ( it is not that way in other countries unless you want to try drugs first. They seem to either not work for long or the side effects are too awful. I couldn't function at all. The neurologist was not helpful in getting me off the drugs, so researched the surgery options. There are about five or six. I started visiting a few docs who had various offerings until I found THE doc in Portland, OR that is an expert in TN. He has done thousands of TN surgeries. We opted for radio frequency thermal surgery because I might have MS. If I didn't he would have done the decompression surgery. I am off the drugs tho it took a week or two to wean off, have no more TN pain and am thrilled!

    Do the research and find the surgery that will work for you and get off those stupid drugs unless, of course, you are satisfied with them. They say you want a surgeon who has done a lot of these surgeries. Who really know what they are doing! Good luck!

    • bill56363
      bill56363 alicot

      Posted

      Any chance you'd share the doctor's name?

      Bill, in Atlanta

    • donna86115
      donna86115 bill56363

      Posted

      I, too, would be interested in the name of the doctor, or at least his/her hospital there he/she practices. Thanks so much! Don
    • alicot
      alicot donna86115

      Posted

      Dr Kim Burchiel in the neurological surgery dept. at OHSU.  I had to have my regular doc refer me (that is require at OHSU).  But he has done thousands of these surgeries.
    • alicot
      alicot bill56363

      Posted

      Dr. Kim Burchiel at OHSU in Oregon.  He is a neurological surgeon at Oregon Health Sciences University.  You need a referral to go.  I got one from my regular doc.  He was a good find.
    • sandi47268
      sandi47268 alicot

      Posted

      So happy to see your post.  My daughter was just diagnosed with TN yesterday and is in constant pain.  She lives just outside Portland, OR; please tell me which doctor you are seeing so we can get some help with this!
    • alicot
      alicot sandi47268

      Posted

      Find Dr. Kim Burchiel at OHSU.  He is the guy to go to.  Up until I found him I suffered on drugs that didn't work.  He will continue to work with me if I have problems or it comes back which it often does.  In order to get in I had to have a reference from my regular doc. But that was easy.
    • luke46182
      luke46182 alicot

      Posted

      Who is the Dr. in Portland toy used.  I live in South East Wa. and have just been diagnosed with TN.
    • fred10352
      fred10352 alicot

      Posted

      I have suffered with TGN for 5 years. Ii just heard about Quell Pain Relief device that you wear on your calf. It fires electrical shock at the intensity controlled by the wearer. Has anyone had any experience with this device for TGN pain relief? Thanks

    • Stupid1
      Stupid1 sandi47268

      Posted

      I am curious as 2 how a neuralagist can find TN in 2 ppl in the same family. Can u explain what ur neuralagist told u.

      God Bless Us And Keep Us And Give Us Peace

    • gill32586
      gill32586 Stupid1

      Posted

      Hi, You ask sandi how t.n. can be found by two members of the same family. I can only tell you that my mother suffered with this and I also have had it for many years. Also I have a friend who has this awful thing who had an uncle who also suffered from it. My neurologist told me that there is no family link !. There such be more research into this.I draw my own conclusion.

       Stlll praying for all the T.N. community.. God Bless.

       Gill

    • patricia64722
      patricia64722 Stupid1

      Posted

      Hi . It was so long ago I barely remember. I do know he spoke about  the invasive one which I refused. So I kept taking gabapentin at first then pregabalin. It just kept the edge off. Then 5 yrs ago I was asked to try a balloon compresion. I accepted. Went in for a day surgery. So glad I did.

       I wonder in your case if it’s hereditary. I don’t know.

      god bless

       Patricia 

    • Stupid1
      Stupid1 gill32586

      Posted

      If this is found in 2 ppl in the same family, I just wonder if there I something in the food or water in that house or the community. I was in the military at Ft. McClandland All, a lot of chemicals have been found at that place.

      Just my opinion. I can't niece all of this has bN hoing on for more than over 20 years and there is no cute found. I tell all the ppl I Come in.Contact with about this dredged up disease, no one has ever heard about it. I tell doctors about it and they have never heard of it. I am going 2 get a license plate made up, How I Survived TN and is hear to tell about it.

      That statement is what brought me 2 this site in 2016.

      God bless us and keep us and give us peace

    • Aleitrafromcali
      Aleitrafromcali Stupid1

      Posted

      I suffer from TN & also my Aunt ( my Mom sister) Doctor said it can be in the genes.

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