New to TN...feeling hopeless

Posted , 10 users are following.

Last week I was diagnosed with TN in the ER. I went to the urgent care clinic where I work for what I thought was an ear infection that was out of control. They sent me to the ER where I was diagnosed with this horrible condition. I've been in constant pain, with no relief. They gave me Tegretol while I was in the ER to come home on but it makes me sick to my stomach. I went back to the ER yesterday for pain relief and the ER doctor made me feel like a drug seeker.

My boyfriend recently transferred to Maryland from Florida with the Navy and the stress from that isn't helping. The pain is horrific. My face is swollen and I haven't made it to work in 2 days. I want to bang my head against the wall from the pain.

I guess I just need some hope right now....

Thanks for listening,

Sarah

1 like, 11 replies

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11 Replies

  • Posted

    I would seek another opinion regarding your diagnosis. I don't think TN causes visible swelling. See a neurologist as soon as you can. Good luck to you.

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  • Posted

    it's not hopeless,i've lived with mine my whole adult life but thankfully mine doesn't occur all the time but like you when it does it's torture. forget about the painkillers they won't make, i've taking everything to try to get it to stop.ask your doc if there is anyway to compound the tegretol. when mine was bad my neurologist wanted to give me IV solumedrol for 5 days but it subsided. so i dunno if that would help with the swelling.

    try a heating pad on the side that hurts worse. what helped me one time whe it happened in the wintertime and going outside and wide open mouth breathing helped a lil bit. i know it sounds weird but it's true.

    please let me know how you're doing!

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  • Posted

    Hi Sarah,  my husband has TN and Tegretol is the only thing that does bring relief,  his Doctor told him to take it three times a day even when the pain disappears but he does get the odd relapse and he is sure that it is the Tegretol that really helps,  how many tablets are you taking and how often,  it will pay to use Tegretol if u can, would it help is you had some milk before u take the pills.  I hope that the pain goes away soon for u,  it really is a sod of an illness.

    Thinking of u,  Moira.

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  • Posted

    It sounds like an ear infection. I had the same problem years ago in my twenties. They kept saying I was imagining the pain until I collapsed and they found infection in the mastoid but I lost my hearing because of incompetance. See an ear specialist quick. I now have TN but that's another matter 

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  • Posted

    What dosage of tegretol are you taking and how often?  One of the key ways of diagnosing Tn is to give tegretol because it should take the pain away within 2 hours.  I also agree with the other comment about your swollen face.  I think you need to be seen again by another doctor.  Swollen face, ear problem.....tooth absess???  Good luck
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    • Posted

      I had dental xrays and there's no tooth abscess.

      I'm on 200 mg of Tegretol twice a day. I was on Skype with my boyfriend tonight and started throwing up. I'm in an area of Florida that doesn't have the best medical care known to man...my better half thinks I need to go to Mobile (AL) for better medical care. But that's over an hour away. The swelling has gone down but the pain is worse than kidney stones...

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    • Posted

      You didn't say where the pain is. If it's TN it's nearly always on the right side of the head near the temple, right eye, or on the head above the eyebrow. Only an MRI can determine the cause. 200mg twice a day is not much and it shouldn't make you sick. I've changed from Tegretol to Neurontin (1200mg per day) which is less invasive and, as long as I don't touch the area, it's okay.

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  • Posted

    Hi Sarah I took tegretol for my TN just be careful with this drug it made very ill had to be hospitalised with a severe drug hypersensitive syndrome the rash I had was horrendous , I had only been taking it 3 weeks hope your TN gets sorted I personally feel it's stress related

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  • Posted

    Hi Sarah, Tegrotol does sometimes take time to work, you have to take it at a low dose 3 times a day ? may be 100 mg or 200 mg each time and increase it by half a tablet at a time I had loads of side effects, I even got uo to taken it 4 times a day and dosege uo to 1200 1400 mg a day, You need to speak with your GP and keep hime updated on what meds your taking xx
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  • Posted

    Get to a Neurologist that KNOWS what TN is all about. Then start doing your own RESEARCH, RESEARCH, AND MORE RESEARCH, until you find the right treatment for you.

    I hope this helps.

    God Bless,

    Greg

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  • Posted

    Sarah,

    ?I think the first step is finding a good neurologist. My TN just started getting ugly because the meds are not working anymore. I feel like i'm walking on eggshells trying not to stress out, but, the truth is life is stressfull. i have three teenagers a job, a husband and a house to run. things go crazy if i'm just sick for one day. how am i supposed to live the rest of my life like this? I'm still trying to figure it all out. i saw a study that said acupuncture was helpful. i had a consult with one and he wanted me to clear it with my neurologist first. i hope that it will help but to be honest i'm terrified of the wind blowing against my face. i don't know how to deal with someone sticking needels in my face. i hope you find something that works for you.

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