I need help

Posted , 5 users are following.

Before I started oxcarbazepine my pain wasn't as bad as it is now my face is hurting way more I just got off of oxcarbazepine an back on gabapentin an i cant get relief now just from gabapentin for my tn 2 I need help please someone

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  • Posted

    You have to find a surgeon who can fix it at least get you off the drugs and out of pain for a while or for a long time.  This drug routine is a joke. I couldn't take it either. I had to do my own research to find the purge on in my area who is familiar with and treats TN. Now I am off drugs but it comes back and so he does it again and said they could keep doing it whenever It comes back. My procedure was called a radio frequency surgery but there are a number of othersa as well. Research the surgeries and the surgeons in your area, make an appt or get a referral and get out of pain and off these awful drugs! Good luck!

     

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  • Posted

    Try 1200 mg (400mg 3x a day) of Magnesium glyconate or aspartate everyday. You can also get dextrose injections. Its called prolotherapy to the face. Shop around though.
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  • Posted

    Hi,

    Gabapentin is designed specifically to combat neuropathic pain - pan affecting the nerves - Oxcarbazepine and similar anticonvulsants are designed to interrupt the nerve impulses in Epilepsy, but they do the same thing for TN thereby reducing the signals that then trigger the pain of TN. You have two drugs therefore that can work together to combat the condition.

    My advice is this (it's something which many forum members do following advice from GPs or specialists): Continue with the Oxcarbazepine and add a lesser dose of the Gabapentin then try various combinations of doses of them both to find one which works best. It could take a while but the pay off is worth it. If your GP is unhelpful in this regard insist on seeing a Neurologist.

    Personally, I take Amitriptyline 50mg at night with the option of further doses of 10mg twice a day during a flare up, plus I am taking 100mg Carbamazepine three times a day with 200mg at night. Also, best advice I had was to set your phone alarm and take the medication at specific times to maintain serum levels in your blood. 

    Thankfully, my GP (and Dentist) are superb and I have an agreement with my GP to gradually increase the dose of Carbamazepine up to a maximum of 200mg four times a day, at which point I will be referred to a Neurologist if I am still experiencing attacks. Unfortunately I take other medications which can damage the liver, as does Carbamazepine, so I have to go slowly, as a result I still get attacks everyday at the moment, but they are far fewer in number and in intensity!

    Stick with the medication as it does help.

    Best wishes

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    • Posted

      Me too. I was stopped by the police because they thought I was drunk when on it. That told me it had to stop! But the surgery took care of it and I weaned off.
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    • Posted

      Hi,

      You could try Oxcarbazepine or one of the older anticonvulsants such as Phenytoin. Sadly all medications have potential side effects, and for some people they are worse than for others. Very often doctors try a variety until the right one comes along which does the job without affecting the patient too adversely. Much of medicine is trial and error along with a hefty dose of guesswork!!

      Part of my job is to make sure that our patients have understood the medications they go home with after surgery and that they read the enclosed leaflets. The lists of potential and scary side effects is quite daunting but more often than not they are rare, but they have to be listed by law. There will be something out there which will work for you without the worst of the side effects, trust me, I'm a nurse!

      Best wishes.

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    • Posted

      You could perhaps try an old generation medication for the neuropathic pain, some of the newer ones have much worse side effects. I take Amitriptyline which has been very effective and with no side effects, unless of course I have had side effects and can't tell the difference between them and the actual signs and symptoms of the autoimmune disease for which it was initially prescribed!! Ho hum!

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  • Posted

    You can also try acupuncture. This sustained the pain a lot, but because I had TN for so 19 years and didn't do much to address the pain, it wasn't as effective as it could've been had I went sooner, Dr Ling said. Most insurance pay for this. Ask the acupuncturist if they can use the acupuncture stimulator along with the needles to the face. The vibration of the stimulator stimulates nerves pretty effectively. If been down this road for many years pal, I know exactly how it feels ?

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