going round in circles

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hey, I feel so low at the moment just constantly tired and have no energy just want to sleep 24/7. my Mri scan came back clear so my specialist is investigating further. He gave me two injections into my cheek to numb the pain for up to 16 hours, since that had weared off the pains in my face and teeth have just got worse. I'm still taking 1100mg of tegretol a day but that isn't enough. I've been in so much pain that they've also given me gabapentin to take 300mg a day. I was wondering if anyone else has took this medication, is it any good? does it create bad side effects along with tegretol?

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  • Posted

    Hi Katie, so sorry to hear that you're having such a bad time of it...I take gabapentin alongside tegretol. I don't tolerate tegretol well, so I'm only on 200mg three times per day, and 300mg of gabapentin three times per day, and then 50mg of amitriptyline at night. Getting the right medication and dosage takes time. I hope you get some more lasting relief soon.

    Take care

    Lynn x

     

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    • Posted

      Hey Hellsfairy,

      I am tapering off of Lamectal, so I can tolerate Gabby. Now, what do I have to look forward to in regards to kicking butt on the burning of the face pain, or the electrical jolts?...that NOBODY CAN FATHOM IT REALLY HAPPENS! I have researched that one med (Carb, or Oxcarb, and others, work for stabbing, and Gabby and others work on constant burning pain. Do you or anyone out in "monster" land have first hand knowledge of what needs to take place?

      God Bless,

      Greg

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    • Posted

      Hi Greg! Well, in my case Gabby did work initially quite well for the burning pain, but now unfortunately it isn't really doing much except making me feel even more zombified than I was on a lower dose. Having said that, it may work well for you, I sincerely hope so. 

      I was told by one 'doctor' that of course there actually was no pain, it was just my brain telling me there was!!! Well, I'm sorry but if my brain tells me I'm feeling pain, then I'm feeling pain....He is no longer my GP!!

      Warmest regards

      Lynn

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    • Posted

      Hi greg

      i had the stabbing for 15 years 3 years ago I had a balloon compresion done and I am now ok No nothing for just over 3 years . I have got my life back Hope you find a solution for your self Good Luck

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  • Posted

    Hi Katie

    I was on 4 x 600Mg oxcarbamazine (tegretol with lesser side effects 4 me at least) and and with that 3 x 200Mg of pregabalin(lyrica is another name) a day.

    That 'JUST' controlled my circumstances pain wise but just about made me the perfect zombie. Took best part of 12 months of trial and error of various medications to get to that stage.

    Surgery for a totally sepearate issue on my face somehow has reduced everything to just needing paracetemol backed up with oral morphine a few times a day.

    Keep at it WITH your GP and don't hesitate to suggest remedies you see here. GP is best person to asses what will suit you and monitor any side effects.

    I kept researching TN and when I found an interesting site I would pass the link onto him and he would investigated at his leisure. He was very happy to do that and we found the result that worked together.

    Most GP's don't see a TN case in a year so it is to be expected they need to brush up on it to give the best support.

    Good Luck and never give up!

     

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  • Posted

    Have you seen a neurosurgeon?  Is that your specialist?  The drugs can make you feel very low besides the pain.  Even on low doses I had reactions with the carbamapezin and the oxcarbazepine ....because the side  effects made with systemically sick, beside the rashes and mouth sores and crying.  I am now on a low dose of gabapentin and some norrtryptiline.  I am also using capsaicin cream....it does not hurt and I am giving it a try to numb the pain.  Good luck
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  • Posted

    Knowing what I know now, I would've had MVD surgery much sooner. It's the option most likely to permanently get rid of TN, and of course recovery is easier the younger you are. TN will not go away on its own. The pain may stop temporarily, but it always comes back, and it gets worse over time. The meds WILL stop working eventually. I don't see the value of getting by with medication for years, only to have surgery anyway.

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    • Posted

      Thank you Clint.  I am 67 and I have TN for just over 3 months.  It has been a rough haul.  The meds are horrible.  I am now on 7% of the meds I was on two weeks ago, I just can not tolerate the side effects.  I am on the list for MVD surgery in May or June???  I have atypical TN so the surgery outcome is questionable, but like you stated I think it is my only hope.
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  • Posted

    Hi there!

    Hope you are better with pain. I started out taking 900 mg a day of Gabapintin and now taking 1500 a day and hardly have much pain unless something sour or sweet,gotta be careful and always hurts alot when brushing my teeth. I did not like Tegratol at all. Gabapintin will make you a little dizzy but nonthing real major. Anyway let me know how you are doing. I will keep you in my prayers. God bless!

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