Amitrityline and trigeminal neuralgia

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I was diagnosed with hashimotos thyroidosis last year and have suffered all the standard serious and non serious symptoms that have affected my life. Ontop of that, i was diagnosed with trigeminal neuralgia back in June after suffering for numerous months. I've now been in extreme pain every day, for a year this month! I'm 24 but feel like I've missed out on so many years thanks to all of this. I get pain in my eye, my nose, my ear, my jaw, my temple, my teeth, the bass of my skull, my neck, my shoulder, all the way down my arm and sometimes get shocks down the spine. I struggle to work or do basic daily things because the pain is just too much when it happens. Attacks originally lasted anything from 2 minutes - 10. How they last an hour and I'm left with constant throbs for the rest of the day, until the next attack happens and so on so forth. Pain is always worse in the morning and at night. I'm currently on 110mg of amitriptyline, have increased 10mg each week. I have one week left until I've hit the max dose my neurologist said to hit. So far no side effects - but I still can't sleep un interrupted from pain. It's definitely helped the intensity and duration of attacks, but it's still so bad i can't move for an hour and am left feeling exhausted. I also have extreme muscle fatigue, I'm assuming from hashimotos. My legs feel like led almost all of the time! I'm so sick of not be able to get on with my life like I used to. A light breeze can trigger pain, brushing my teeth, smiling, taking to long, simply touching my face at the wrong time!! I feel like there maybe more to the picture than just trigeminal neuralgia...anyone else been this high on amitriptyline and still suffered? Should I be expecting pain to go? Or am I stuck like this forever until it decides to go into remission? Feeling lost, down and ready to give up.

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  • Posted

    My dad had a neurological disprder called spasmodic torticolis, his doctor had him on amtripyline for years but he never got complete relief from the pain, he was also depressed and tired. I hope you get back into health! I am going to try omega 3 (ALA) and thiamine, along with upping my b complex....after reading the posts I saw when I googled "How to get off Lyrica" I will not take any more of those!! I have been on those for 13 days so I will keep posting how I do. Some have side effects they say the pain was better than the side effects and that after coming off lyrica they are still battling withdrawals!! People are so concerned with drug addicts getting opioids that people who need them cant get them. I just heard yesterday that there will be another crackdown on prescribing opioids, and the exceptions are if you have cancer, are in hospice, etc, but what struck me is drug addicts in recovery is also an exception!! So if you are a recovering drug addict you can get what you need but not if you are just a regular person not addicted that is in pain? We are in for a ride folks!

     

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  • Posted

    I am so sorry to hear about all your pain. It does not sound like that medicine is working for you. I took the maximum amount of gabapentin and carbamazepine. It left me felling brain dead. My memory was getting bad. Maybe you should talk to your Dr about gamma knife or MVD surgery. I hope you get some relief. Do not give up hope. You could see a pain specialist also. Good luck. Kathy
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    • Posted

      Thank you Kathy! I will look into those options and go through it with my neurologist on the 14th. Fingers crossed for something hopeful. 

      Sorry to hear about your experience with gapapentin. Did it help the pain at all despite the side effects? 

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    • Posted

      The both medicines helped at first but it quit working a month before surgery. I am taking 300 mg. of carbamazepine now to help with the facial numbness. Best wishes to you. Keep fighting. Kathy
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  • Posted

    So sorry to hear all that you are going through...I have had TN for just over 7 years (it took 6 months to diagnose!) . My medication was oxycarbazepine and I was up to 600mg 4xs a day on the worse days. Lots of side effects - I felt drunk (dizzy, foggy memory, forgetful, unsteady, fatiqued etc) until the dose would "settle in" for max relief. My episodes lasted anywhere from frequent shocks to constant pain - eating, chewing, brushing my teeth, gentle touch, wind etc were triggers. I might have these from 2-6 months then go into remission for 2-3 months before it returned - sometimes with a vengence.   I finally had MVD suregery 5/2/17 and have not had any shocks since. Lots of numbness and tingling and I had double vision for several months after but that is slowly resolving and I was able to go back to work last month. I am a lot older (64yrs) and can only hope and pray that a cure will be found soon - esp for sufferers as young as you. : ( 

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