RX 2 days ago. Three months of pain finally easing. Questions.

Posted , 5 users are following.

New to the board. Maybe not so new to TN but recently diagnosed. Just wondering if other sufferers have had to deal with similar issues and how did you do it?

One. How common is ear pain, tinnitus, Temple pain even to the touch, and horrible pain on the roof of the mouth. All on the same side.

Two. How are you able to work? Im missing so much work that I cannot possibly see my employer keeping me on beyond what is legally required. The Tegretol has been a miracle. I have only had it for 2 days and it has not stopped the attacks nor the tinnitus but it has turned them down from 9 or at 10 to a one or two. But, it makes me so, so, so dizzy. Not a problem now as I will do anything to relieve pain but I can't imagine managing a large maintenance department on this drug. How do you guys deal with the anxiety of how this is going to affect our future?

Thanks in advance, as you guys all know it's kind of scary and it sure is nice to know someone is it least or has at least have the same symptoms and or thoughts.

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  • Posted

    You will probably get used to the worst of the side effects, but you will always have "reduced brain function". I took 1200 mg of Tegretol every day for years, and experienced poor short term memory, sluggishness...just not as sharp in general which affected my confidence in a detail-oriented job, which only compounded the problem. I chose to have MVD surgery last August and it was 100% effective. Getting off all meds has had as big an impact as getting rid of the pain. Meds are a bandaid that likely wont work forever. I highly recommend looking into more permanent treatment options. 

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  • Posted

    Hi Eric

    From what I have read the symptoms you mention are quite common. I have all of them and more; although not to the intensity that you are experiencing them.

    I have been off work since the 13 December as I had a bad experience with Tegretol as the GP advised me to take a high dose and I could not function at all. On advice from a Neurologist I have since introduced it at a smaller dose and am increasing it gradually until I feel that I can cope with the pain and also cope with the side effects. I'm hoping to go back to work in 2 weeks but am concerned I will not be able to do my current job. This all adds to the anxiety that I'm suffering whilst also trying to acknowledge the changes in my life.

    It seems like we are all scrambling around for answers but it's really good that we can share on here.

    Take care


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  • Posted

    Hi Eric,

    I'm glad to hear the RX is helping. Ear pain for me is one of the worst. It almost feels like someone is stabbing me inside of my ear and right under and above. I actually had a shot of Botox, and saw that helped A LOT. I would recommend trying Botox for TN treatment. I have only tried it once, but am going back. It truly helped a lot. I also am on Gabapentin (1800 mg) & that has helped.

    With work, I think it helps when I have an ice pack at work I can hold to the area that is having the worst pain. Also I've noticed that relieving stress in my neck and shoulder muscles seem to directly help my TN attacks. Not sure if anyone else has seen that make it worse / better(?).

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  • Posted

    Praying for you. My Neurosurgeon took me off work until I can have the MVD surgery. I couldn't drive well. I do have ear pain couple of days a week. I have had tinnitus 20 years bit don't know if related. I have severe roaring attacks. It changed and the pain moved. Crazy stuff here. May Jesus help you and answers be found for resilution.

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  • Posted

    Thanks for the replies. Sure good to know that your not the only person on Earth with a specific kind of pain. It doesn't make it go away, but somehow it does help. Thanks again.

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