Need some help

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I habe been suffering from TN since 2 -17 of this year. Mine is the upper part of the nerve that any touch to my forhead or hair even causes horrible pain. I am currently on Carbamazepine 400mg 2 xs a day and it is not helping. I am expericing migraines on top like 3 times a week. My question is do any of you still work or have you taken a leave of absense? I work at a call center. I have a MRI scheduled for the 17th of this month.

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  • Posted

    Hi Melissa! I’m sorry you got diagnosed with this. It’s awful. I had TN for 6 years and had the MVD surgery done in August of 2017. I was on around 1800-2000 mg of Carbamazepine a day on top of several other medications. Have you tried Lyrica? Carbamazepine and Lyrica were a great drug combo for me that worked fairly well. I ended up having surgery because I was maxed out on all medication and it wasn’t helping anymore. I’m a server and there were several times I had to go home early because I couldn’t physically talk and I just cried because the pain was so bad. At the end of my 6 years I ended up quitting my job about a month before my surgery because I couldn’t physically do it anymore. I’m back at work now though and pain free. Definitely talk to your neurologist about adding another medication with the carbamazepine! 
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    • Posted

      Thank you so much fpr your reply. He did just give me Baclofen, but is concerned with taking both together due to side effects. I will mention the Lyrica. I dont want to stop working out right. Just take time to get tghe pain under control. I am all for the surgery. My Dr wants to keep trying all this medicine. I have changed my diet and started taking some viatimins that have said they will help. Whay was ur experience with the surgery?
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    • Posted

      You will be fine taking the Tegretol with the Baclofen. I did that for years. At one point I was taking Tegretol, Lyrica, Baclofen and Gabapentin.  I had the most success with Tegretol and Lyrica together. It’s hard living your every day life being in constant pain.  Usually they make you take all the medications until medicine doesn’t work anymore. I suffered for 6 years before my neurologist signed off on the MVD surgery. She told me there was nothing else she could do so surgery was my next step. The surgery wasn’t bad at all. The worst part was being nauseous for about month because of the cerebrospinal fluid was all out of whack so that made me sick. I also had muffled hearing in my right ear for about 2 months. It was fluid so it dried up and now I’m 100% back to normal.  I’ve been pain free for almost 8 months and I hope it continues! I have been off all the medication for a little over 6 months. If you end up going the surgery route my advice is to get someone who has done MVD before and has a good success rate. My neurosurgeon had done over 200 of these surgeries with an 85% success rate. He’s actually the only one in my area that does them so i was fortunate not to have to travel. I was 24 when i had the surgery so he wasn’t thrilled on operating on me since I’m so young. But it was so worth it. I feel like he gave me my life back. I still come on this page to give other people hope and to encourage people that you don’t have to live like this forever. It’s a long, hard and painful journey but it’s made me who I am today. I truly hope you find what medications work the best for you! 
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  • Posted

    Hi Melissa ,you may not have TN most symptoms of TN starts on top of your head but the pain goes down the left or right side of your face and gets very painful almost as painful as a brain freeze from eating ice cream. well That’s my experience....maybe your mri will show something different. At any rate please let me know if you find out anything and feel free to ask me any questions you might have. Wish you well. .Al
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    • Posted

      Yes it is diffently TN the pain is on the top right side of my face. Showering, brushing my hair even the wind causes a sharp pain beind my right eye. My neurologist said that the top part of the 3 nerves is the rarest. I can not do hats or beanies make up is a real challenge. I get pressure on the top of my head down to the base of the skull only on the right side. Yesterday I started getting this wierd pains in my right ear like I was being poked with a needle. Hopefully this forum will help. I have written some suggestions for my Dr and looking forward to my MRI.
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  • Posted

    Hi Melissa,

    Sorry to hear about your pain.

    Try hot tub or a warm shower (make sure you use a scarf and warm bath robe after to stay warm). This helps release tension. Avoid cold drinks etc.

    If it is not too cold out, a 30 min brisk walk warms up the body. I find that staying home and not doing anything worsens the pain - activity helps.

    Lastly, do try to find a good acupunturist (my pain went away after a series of treatments - I had TN for 3 years) and stop whatever is causing you stress (not an easy task but worth looking into). Avoid foods that spikes you blood sugar levels (leads to neuropathy).

    Get well soon,

    H.O.P.E. Hold On, Pain Ends

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  • Posted

    Melissa I've gotten temperary relief (12-14 hours) taking 800 mg of Turmeric in the am. Then at night I take the Carbamazapine. 

    For some reason the Turmeric doesn't work at night. Talk to your Dr. You may have to either increase or decrease the dose of Carbamazapine to work

    Hope this helps! Have a pain free day! 

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  • Posted

    Turmeric is a spice you can buy in a pill any were. It doesn't have any side effects & it's all natural.

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  • Posted

    Hi Melissa. Sorry to hear you are suffering. I’ve been dealing with it for over 5 years now. Have been through gabapentin & carbamazepine, both which helped in high doses, but dropped my white blood cell counts way low, so had to stop. Neuro moved me on to amitriptyline about 18

    months ago, which also helps dull the pain in higher doses. But it has some undesirable side effects as well (e.g. significant memory loss.) Then about 1 year ago I found cannabidiol (aka CBD), and it truly changed my life! In high doses, it completely eliminates the neuralgia in my mouth with no negative side effects. I’ve been able to cut my amitriptyline in half, and feel extremely confident I’ll

    be able to stop the pills altogether as cannabidiol becomes more recognized & prescribed in the medical (esp neurological) disciplines. I highly recommend to do your research and decide for yourself; I know for me it has improved my quality of life beyond what I thought would ever be possible. Please feel free to let me know if you want any additional guidance.

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  • Posted

    Hi Melissa,

    Don't be discouraged if your MRI does not show anything. I know someone who got an MRI. Three doctor's looked at it. One didn't see anything. The other barely saw maybe something. The third saw exactly what he needed to see and did the MVD. But... often TN does not show up on a MRI. Mine has not. But I definitely have it. And you may have a rare form but still have it. Exercise helps. I did the elliptical bike (without using the arms portion, instead playing with my phone while I pedal). And this actually helps the pain immediately. I have heard this from others as well: physical activity gets the blood flowing (even light activity) and seems to help the pain immediately and in the time afterwards for awhile. So now I go to the gym regularly as it is one of my pain coping mechanisms. I use Lyrica and it has helped. I would use more meds but need a sharp mind for my job and can't afford any mental impairment. Try downloading an app to help you with breathing. Most people don't realize they breath shallow when in constant pain and/or stress. And then that's just a vicious cycle because that makes the pain worse. If you can find a few minutes each day to just concentrate on breathing (there are great free breathing apps, let me know if you want me to recommend any), it will help with the pain and with easing overall stress and lowering cortisone in your body. Sleep cannot be recommended enough. Whenever possible, get sleep. Sleep in and grab extra hours when possible as well. A doctor once said that when you are in constant pain 1/3 of your brain is used up by dealing with the constant pain, thus exhausting you. Then it makes it harder for you to concentrate, to remember things, to handle things emotionally, everything. Because now you have less brain capacity to live life. And 1/3 of the other part of your brain is for autopilot. So now your down to only 1/3 left to actually actively live life where, without the constant pain, you would normally have 2/3's of your brain to do so. So rest when you can to help out the 1/3 of your brain that is trying to do all that multi-tasking!

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