Have TN bad.

Posted , 5 users are following.

Had for 2 years off and on. Neurologist has me on that nerve medicine everybody takes. Works during the day but makes me sick and tired. At night it fires up no matter how much I take and can't sleep. Can't take this much longer. I realize there are people with worse things but this is in the picture! Any advice would take. Thanks.

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  • Posted

    Hi AEP

    Have you had an MRI? Do they know you have compression of your Trigeminal nerve by a pesky artery? 

    You need to know this before your neurosurgeon (get referred to one as soon as you can, you won’t regret it) can list the options available to you for surgery etc and give you a good idea of the probable outcome in your personal case. 

    I was on industrial amounts of tegretol for a long time but MRI gave a neat diagnosis and MVD operation was a great success. I have a life now. 

    Good luck to you and let us know how you get on. 


    Big D

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    • Posted

      had MRI, take tegretol like candy. Want next step. what is MVD operation and can any neurosurgeon do it? worse thing I have ever had.
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  • Posted

    Hi - since I was diagnosed with TN, I have been prescribed several anti-seizure meds.  Like too, I did get sick,no appetite, etc.  I was also allergic to a couple of them.  I had to stop as the med made me worse.  Also, they did not help with nerve pain.  Not a good report.
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  • Posted

    We can all relate here to how incredibly awful TN pain is & the side effects/benefits/etc of meds.

    Your post struck me bc it reminded me of the early yrs of the TN journey....which is still going on....but the  beginning is rough. I sometimes focus so much on my current pain/procedure/etc I forgot how HARD it was to even get to this place, so thank you for humbling me there. Best thing I've learned is to be grateful for what you have & stay as positive as possible even when you want to commit murder. 

    Sounds like you've taken the first step. Your neurologist can help w/ info on options after reading your MRI.  I'd also recommend the Facial Pain Association for info/specialists/striking back for background info. 

    Meds: there are SO many & we all react differently so nobody can really recommend the "best"for you.  we all had to suffer through trial & error. It stinks,takes a long time, & you will prob never find one that doesn't have annoying side effects; but hopefully 1 that has the least/helps the most as you can pray for. Sorry this has happened to you. Stay positive & keep us posted. 

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    • Posted

      Thank you, going to acupuncture right now, not to high on results. This tegrinal or whatever it is is losing its effect. You say there are other meds? Hope to get neurologist to listen when I go back. I can live with it during the day. It is when I try to sleep it drives me nuts. 
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  • Posted

    Hi AEP, I have the same problem, once I'm in the middle of an attack sleep is impossible.  I was  on Carbamezapine which did help a little.  What it did was make the attacks less frequent.  Once I was having an attack taking more of the Carbamezapine  didn't do anything.  It helped me sleep pretty good but after about 8 months I started feeling nauseous all the time and stopped taking it.    I also take Lyrica on the day of an attack, it gives me some mild relief and does help with sleep as well.  I was asking the doctor about sleeping pills and that's what he prescribed.  I still think if I had a good sleeping pill I could just sleep through the attack but for some reason doctor's would rather not prescribe them.

    Good luck, I hope you can find some relief.

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