This pain is out of control. I needs remedies to try at home. Drugs aren't working.

Posted , 9 users are following.

I'm on the max amount of neurontin 1200 mg three times a day, tegretol at 200mg three times a day, butabutal x 2 every four hours for pain and amitryptiline at night. You would think I'd be knocked out but I can't sleep thru it.I have the TN that can go on for hours at a time. It's the worst pain ive ever had. I feel like banging my head into the wall. It rarely eases. Ive tried ice, heat, teas, vitamins, chiropractor. I don't know what else to do. What triggers it? Sugar? Caffeine? Smoking? I need to know. It's keeping me awake at night

I'm crying alot. I can't work. Somebody please give me something to hang onto. I don't see a neurologist until the 9th which seems like a lifetime away. Thank you

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10 Replies

  • Posted

    I am afraid Leslie you are at a stage where there is no option left except surgery, a good neurosurgen will fix the problem no other medication will work chemical or natural, have been there, the operation is servere but it works as long as you can take the headaches after for about 2 months. I have bee pain free for 4 years now and hopeing it stays.
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  • Posted

    I am so sorry that you are in pain. I feel for you...

    I have atypical facial pain, it is a true nightmare. Been off work for months. Cannot do a thing, just coping with the constant pain. Taking LYRICA at the moment. Feel drunk most of the day but hope it is working eventually. I am a 21 yo male from Austria/Europe. In your case I really would consider balloon surgery! It might be the only way to get final relief.

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  • Posted

    I'm so sorry to hear that you in so much pain. My heart goes out to you. I just wish I had the answers but I dont.  

    No one knows what triggers it but I would certaintly try giving up the caffeine, smoking and sugar if you can. Easier said than done when you have nothing else to make you feel better. I agree surgery sounds like the best option. I stopped everything and basically only put healthy things in my mouth and went from there but my pain is nothing compared to what you saying. its trial and error. What worked for me one week never did the next. You on alot of medication so that must be a struggle in itself.  

    Have you tried to reduce some of your anxiety by listening to mindfulness sessions. Stress really adds to this condition in my case and if you can find some time to just calm yourself mentally and not be so anxious it might help.

    Best of luck and you not alone and trust me we all feel your pain through our computer screens.

    Roll on the 9th :o)

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  • Posted

    you didnt say anything about a surgery option or where you are geographically.I tried acupuncture also which did nothing for me. Then I tried a wheatbag (reasonable help) and warm peppermint tea (reasonable help) Lysine (reasonable help but took many days) Sensodyne toothpaste on my inner cheek (sometimes helps a bit) High strength teething liquid from childrens hospital (somes seems to help a bit) The cold makes mine far far worse. Have you tried going directly to a hospitals Emergency Section (I have heard some people say they they got admitted for surgery that way. But really, surgery is the answer.
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  • Posted

    I had it for seven years until I was told by a neurosurgen that a microvascular decompression was the only cure, I  am in Australia and I am sure there should be doctors over there that know about the procedure.
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  • Posted

    Sorry to hear how your pain is so bad like you I am on the maximum of neurotin my neurologist said to spread the dose out to 900 4 times a day and he put me on trileptal (oxcarbazepine) which I find helps a great deal my dose of amitripyline was 50mg at night but I had the option to increase to 75mg when the pain was bad. I fully understand how the worry of it causes a lot of stress to you.
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  • Posted

    HI Leslie, We`re All Sad With You Having `Joined Our Club` Less Members The Better !! So Maybe Try A Bag Of Frozen Peas Held To The Side Hurting And Try And COOLING Your  complete head down. Paramedic`s Told Me 25 Years Ago It May Help. Good Luck. ps a lot of tablets  .  I Use ! Co-codamol Under Tongue If No good ! 1 tramadol 20 mins clear.
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  • Posted

    Hi,My daughter is taking 400 mg of tegretol(2 tablets) 3x daily plus 300 mg gabapentin(1 tablet) 4xdaily and 10 mg amitryptiline at night and it *just* controls her pain.You can try raising the dose of tegretol for a few days to see if it works for you.A consultant neurologist told us you can take 12 x200 mg tegretol daily,but you have to ask your own doc for these.I don't know if diet affects neuralgia,but I know the nightshade family(potatoes,tomatoes,aubergines) does cause my daughters face and ear to go suddenly red and hot.Strawberries and vinegar do it too.My daughter doesn't smoke,drink or take sugar ,but every now and then has flare-ups that are more related to her immune system (trigeminal probably caused by exposure to chicken pox in her case).

    Hope this helps.x Beth

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  • Posted

    Butalbital is a barbiturate that probably does nothing to alleviate trigeminal pain, but it is addictive. 3,600 mg is the max of neurontin(gabapentin) my daughter is allowed, but as she increased the tegretol, she reduced the gabapentin.Slowly,of course.You must alter doses gradually with all these drugs.

    X Beth

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  • Posted

    I have had ongoing problems with a deep routed pain which starts in my ear and goes down my face into my jaw.  My MRI has been clear, so noone knows what is wrong with me.  I am a medical mystery.

    I have been on all the drugs, carbamazepine, gabapentin, pregabalin, and amitrypline.  I am so fed up, that I have started acupmuncture.  I had the first session last week and feel like a different person.  I am going for my second session tonight, and can not wait.  Fingers crossed!

    May be worth pursuing!

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