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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  • Posted

    As you have mentioned your insurance company denying an MRA can I assume you are in America? Has your Neurologist considered Lyrica? How long until you have your MRI and what happens if they decide they can operate? Does the low vitamin D reading mean they will or already have started you on Vitamin B12 injections?
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    • Posted

      Hi Valkyrie

      Thanks for replying. Yes I am in the US. No, the neurologist hasn't suggested Lyrica. I will ask him about it at my next appointment. 2 weeks to MRI, and not sure what they will do if they decide surgery is necessary. My neurologist also said he would refer me to a specialist in TN about an hour and a half away. No one has mentioned B 12 injections, but today my primary care dr took blood for some blood tests and he did mention checking my B 12 levels. It is just so frustrating trying to find something that works.

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    • Posted

      Hi Valkyrie

      Just heard from my neurologist and insurance that they approved the MRI &MRA. My appointment is Monday October 24th. Hopefully this will give me some kind of answers. Also, my primary care physician did blood work Friday and called today with the results. I have low iron and do have low vitamin b12. Have to go later this week for the first injection. The nurse said they would give me 3 injections over a 3 month period and then recheck my levels.

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  • Posted

    Hi Em0701

    Sorry to hear about your frustrations let alone the actual issues.

    The complaint can stem from so many different places is what makes it a minefield for all concerned. Medical professionals included.

    I have to assume you are in the USA so terms and brands will differ as will the available treatment.

    In my case I ended up on Lyrica and oxcarbamazine but when used in big doses they can be hard to handle. Immitating a 'zombie' is the closest I can relate the feeling to. Lethargic, no memory, words don't come out and so on.

    However please keep up your own RESEARCH. I am currently handling all of my issues with just paracetemol and the occassional swig of oral morphine (abt. 10Ml when needed)

    My good luck happened after a long series of tests and scans they identified a tumor in the PAROTID gland on the left (affected) side of the face. I had that removed and with it went most of the pain. I start some radio treatment (targetted x-rays) in a few weeks as they can see the tumor still creeping along the nerve itself. As that is blasted they expect my symptoms to reduce even further.

    The nerves that cause these terrible pains are all over the place and they go through a lot of little orifaces in the head so not all are aggravation caused by blood vessels pressing on the nerves anywhere.

    Unfortunately the process of finding the exact cause is usually long and complicated. I am in the UK, over 70, so my treatment even the prescribed medications are free. I have had multiple CT scans, MRI Scans, even a PET Scan and ultra sounds as well. Add a working group of over 10 specialists that have weekly discussions on line and I have been extremely lucky indeed.

    NEVER GIVE UP, research as much as is possible and never be afraid to put a new idea in front of your medical team. If they don't list then find someone that will.

    Good Luck


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    • Posted

      Hi Baudwalker

      Thanks for replying. Yes, I am in the US. Sorry you have gone thru so much trouble as well. Yes, it is very frustrating. I hope the MRI will provide some kind of answers, if not back to square 1 I guess. Yes, these medicines make me very tired and zombie like feeling as well. My kids don't understand as they can't see anything wrong with me physically to them. Have been researching different procedures and different surgeries online. Today my primary care Dr suggested a nerve block that they do at the pain clinic. Not sure about that. Haven't had tell to look up information about it yet. My neurologist has suggested referring me to a TN specialist about an hour and a half away. I think he does a lot of gamma knife procedures. But I will definitely keep researching. Thanks!

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