Returning TN

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I guess I've been having TN fir some months prior to getting it confirmed. Doctor put me on Tegeretol 2 x 100mg a day which took the pain away immediately, increasing to 2x 400gr a day as I was experiencing "breakthrough pain". This went well and the pain disappeared. Then it was suggested to reduce the meds and I had got down to 1 tablet every other day. Then, it came back! Tried the increasing the Tegretol (with Drs advise) but it ain't shifting!  Now my face is slightly swollen and I feel as if I've had an injection from dentistry in my gum. Pretty fed up. Any info would be most grateful. Sue. 

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  • Posted

    Hi Sue,

    has your doctor suggested a Neurologist visit to you at all? Also there are other meds available besides Tegretol that your doctor might try. Everyone is different so Tegretol is not the be all and end all. I am amazed that you managed to get down to even 1 Tegretol a day actually. I wish i could.

    I know what you mean about the swollen face feeling. I get that too.

     

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  • Posted

    Hi Valkryie.  Thanks for that.  I have just spoken to GP and he is sending me for a scan.  And he has also suggested I increase meds to 500 a day.  

    Because I guess I was doing so well on the intial round of Tegretol it was recommended I reduced it until eventually I would be off them. But my goodness, talk about come back with a vengeance?!  It's very depressing or is that me? 

    Does yours come and go? Sue. 

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    • Posted

      Yes, its less in the warm weather unless its windy. Lately i have had breakthrough pain and i am just now taking 600mg a day but i have to be careful because i also take Warfarin as i have a metal heart valve and Warfarin and Tegretol dont go together well. I am hoping to reduce the tegretol by 100mg maybe tomorrow or the next day and see how i go. I think its making me fatter also.  : (
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  • Posted

    Hi Valkryie. Oh yes!  It makes me so hungry!!  Difficult to eat things that are healty when your starving hungry smile have you had a scan? Sue . 
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    • Posted

      i have had a scan and it showed (oddly) a blood vessel pressing on a nerve but also two benign but slow growing "lesions". neurosurgeon has said i have to have another scan in March and see whether they have grown a lot (they are close to the brainstem)and also whether  m y symptoms indicate a need for surgery. (not yet they dont!) Um, if you are okay giving the info, what has made your breastbone and back sore?
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    • Posted

      I had Breast cancer 6 years ago. I had a maestectomy and 7 operations followed!  Apparently your body goes into protective mode after all those ops.  And I experienced a lot of pain in my ribs and Breast bone area. So Pregabalin was prescribed. It was a bit hit and miss.  But I have to say being on the Tetregol it did take the pain away!  Had to be some bonus I guess! 

      They can do what ever they want to me as long as I'm not conscious! I've read about some of the procedures and they are pretty gross.  But I guess if it takes the pain away. Hope your scan goes well. Off to take my tablets now lol! 

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  • Posted

    Hi Sue.  I know the pain you describe very well!  Ive had TN since I was 30 and Im now 46.  I was initially on Tegretol but the tablet didnt agree with me, even on a low dose.  My sodium level plummeted and I ended up in hospital.  I hope you are having regular blood tests to make sure your bloods are ok?  Im now on Pregabalin, 300mg am and pm and apparently this is a much better tablet as the side effects are "softer".  I tried to reduce my tablets a month ago and only managed to reduce by 100mg morning but then the pain came back worse. Im now taking 250mg morning and 300mg night-time and today Im not too bad.  At least I can speak and eat!! Still not sleeping well though as everytime I move my head I have pain.  I hope your tablets kick-in soon!   Paula
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  • Posted

    Hi Paula.  I'm on Pregablin for another part of my body (bloody hell!). I did ask if I could increase the Pregablin to deal with the TN but he wasn't for doing that.  I shall ask why next time.  But the Tegretol has helped the other part of my body (ribs and Breast bone) hah! I'm so disappointed that the Tegretol hasn't worked like it did the first time. But maybe that's how it goes. I wish you better. Sues 
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    • Posted

      Hi Sue,  I know a lady who has MS and she is taking Pregabalin for her condition and is on well over a 1000mg per day!  She said her words are slurred and she feels dizzy (me too sometimes) so I dont know why we cant go above 600mg on Pregabalin per day for TN?  Confused.  Maybe our bodies get used to certain tablets/limits and then we have to switch?  Oh for a magic wand.  Have a good day.  Paula
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  • Posted

    Hi Paula. To be honest with that's the one thing I worry that this might be the start of. I do have dizzy moments and get very tired.  Let's hope the head scan will be ok. You have a good day too. Sues 
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    • Posted

      Hi Sue.  So sorry I havent replied before now.  Youve certainly had more than your fair share of awful illnesses and youve done brilliantly to get through cancer!!  Anyway good luck with the scan Wednesday and lets hope something less invasive that MVD can become available to us all.  Have a good day! Paula
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  • Posted

    Hi I had TN for 12 years. I tried all meds and finally there were no other med to try. Tegretol along with other TN (or antiseizure) meds work well in the beginning, but they all stop working over time. Yes, it is very depressing. My TN pain came and went over a period of time. The remission period gets shorter and shorter as time goes on. I finally couldn't take the pain any longer since I was getting electrial shocks over 100 times a day and it doesn't stop. I finally decided to do the microvascular decompression surgery (MVD). Just knowing that the surgery is going to drill my skull open kept me from not wanting to do surgery, but it got to a point where I didn't care what happened to me. Anything is better than this horrific TN pain I was having. To make a long story short. I had the MVD surgery 8 months ago. Immediately following surgery I did not have the electrical shocks and I still don't. The downside to the MVD surgery was I woke up completely numb on the side of the surgery. It wasn't just numb, but I felt rock frozen hard like half side of my face was dead. It scared me. My surgeon said this will go away over time and I will get my feelings back. He was right, I did get most of my feelings back. Currently I'm only numb in my upper and lower lips and teeth. I also have these weird movements in those areas 24/7. Nerves are constantly moving, twisting, pulling which cause some level of pain and is very annoying. Hard to concentrate on anything because I can feel these nerve fibers twirling/twisting 24/7. My neurosurgeon said my nerves are waking up and it can take 12 to 18 months to get complete healing. I hope he is right. Anyway, would I do this surgery all over again? Absolutely. The TN shocking pain was one of the worse pain imaginable. I was so depressed and couldn't see myself living like this. The MVD surgery gave me my life back. By the way, the surgeon said I had two large blood vessels wrapped around my trigeminal nerve and that's what causing my TN pain. Interestingly, that did not show up in my  MRI. I took a risk and did the surgery anyway. I wish I had done this years ago. But again, people usually take this route when their TN pain is unbearable.
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  • Posted

    I have a CT scan booked for this Wednesday!  This is progress! It will be another few weeks before I get the results but that's better than waiting the 6 weeks I thought I would have. 

    Pain really has been coming and going in waves.  Inside of my cheek feels swollen and sore and so weird it's worse at night, what's that all about?!  Frozen pack of peas help. I would consider any further treatment to get rid of this pain.  If I thought I would have to live with this forever it doesn't bare thinking.  And, it can happen to anyone anytime. Thanks for infor on MVD and I hope your getting better each day, and at least without pain! 

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  • Posted

    Wow that's great! As you say, progress. Do you think the pain is worse at night because its colder? Mine is bad in the winter esp if its windy (dont know why) I have had no pain all month which is think it because its 40 degrees celsius and i am dreading the coming winter. I hope the CT scan gives you some answers that can help you. smile
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