Trigeminal Neuralgia on 3 different medicines still hurting. Any suggestions?
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After seeing 4 Dr.'s, 3 emergency room visits, one of the ER Dr.'s said it was parotitis, a visit to an ENT who said it was TMJ, a dentist who said it wasn't TMJ, an oral surgeon who finally told me it was trigeminal neuralgia and referred me to a Neurologist. I was already taking neurotin for nerve pain. The neurologist put me on tegretol. Started at 100mg twice a day then went up to 200mg xr twice a day. I had really bad side effects. I couldn't concentrate, it was hard for me to think of what word I wanted to say. I had loss of cordination. I fell down the stairs. Luckily I was only 3 steps from the bottom when I fell. I passed out in the bathroom, hit my head on the wall and hit the toilet paper holder with my arm. Got a really big bruise. Fell at my son's football game busted my knee and got a few more bruises and scrapes on my arm. Had hand tremors and was not able to hold on to anything without dropping it. I called the neurologist. He changed my medicine to lamactil 25 MG and a week later went up to 50 mg. I was still hurting so today he also added Dilantin 100mg twice a day. So now I take 300 mg of neurotin twice a day 50 mg of Lamictal twice a day and 100g of Dilantin twice a day. As of right now I am still hurting in my ear and jaw. My ear feels like someone is stabbing it with an ice pick. My neurologist has ordered a MRI and a MRA. But my insurance is denying it. Had to have the Neurologist call and talk to the pre authorization department. They approved the MRI but not the MRA, so am waiting for the MRI appointment. I also have had low vitamin D for the past year, am anemic, and just had a blood test and tested positive for the Epstein Barr virus. I was told all of these things could be MS. I am lost as to what to do next. I am 38 yrs old and am still hurting. Any suggestions?
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susan33651 Em0701
Posted
You must be terrified, but you need to take a breath and wait for the MRI, in the meantime persevere with the medication. Once you have had the MRI the Neurologist will be able to get a clear picture of what is going on with you. Then you can get to grips with treatment and prognosis.
Wishing you all the best.
Em0701 susan33651
Posted
Hi susan33651
Thanks for replying. I hope the MRI will be able to give the neurologist more information. It's hard being patient but I'm trying. I have researched different treatments and hope the neurologist will be able to recommend something when he gets the results of the MRI. All of this is new and frustrating and terrifying. Thanks for your wishes!
susan33651 Em0701
Posted
You're welcome, and good luck!