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Unclear Diagnosis, Trigeminal?

I am in my second year at college and have recently been diagnosed with headaches. I have always had headaches, though they were infrequent and not at all severe. A nap would usually knock them out. However, about eight months ago, they started to become frequent enough that I began to notice a real change. They became once a week, and made me want to seek a dark room with a bed no matter how much fun I had been having before. My boyfriend and I theorized a thousand things-I must be dehydrated, or over tired, or hungry. Then we thought it might be wisdom teeth, or TMJ. None of these proved true.

Three months ago, I finally went to the doctor with my complaints. Almost every day, for a couple of hours, I had a constant facial ache that hovered around a 4/10. She prescribed to me Maxalt, which made me feel terrible. We tried Zomig and I actually went into pre-hypertension. The migraines became worse the entire time-facial pain mainly in the jaw and eyes, neck pain, nausea, fatigue, longer duration, more severe pain overall. I was prescribed Amitriptyline and Fioricet-only the fioricet helped in any way.

It kept getting worse in time and severity, until I was suffering all day, every day, minus the three hours post-fioricet that the pain was more or less negated. (around six hours a day total). The doctor spoke to my university and placed me in the Center for Students with Disabilities in order to prevent me from suffering academically.

I finally made it into a (long awaited) neurologist appointment, at which point the doctor fully examined me and BARELY gave me any sort of diagnosis. He explained that it was my trigeminal nerves, but did not specify which kind of migraine I suffered from, or what my condition might be called. He upped my Amitriptyline dose, gave me more fioricet, put me on Propranolol, and gave me two weeks of Prednisone. This was about a month ago.

In the last three weeks or so, my headaches seemed to be getting a little better. I only reeeally had to take the fioricet once a day, and things seemed to be looking up-until about a week ago. The migraines got right back into their routine and once again, they seem to get worse every day.

I am completely at a loss and feel like I don't have the right answers. I know the cause is my trigeminal nerves, but what does that mean I suffer from? Has anybody else experienced this?

Any input would be insanely helpful and at the very least, comforting!!

  1. Lottiemae12,
    I hate to hear that a neurologist wasn't helpful! So there is a branch of nerves that run under your scalp called Trigeminal Nerves. They branch out in different places along the side of your face- the jaw, your forehead, temples and eyes/ brow bone. The pain you describes seems to present in these places. There is another major nerve in your scalp called the Occipital Nerve that is used in diagnosing Migraines. That nerve runs in the back of the head- which doesn't sound like your case. So basically your doctor told you which nerve your Migraines stem from. Awesome, now what?

    The meds he put you on are often used first to see if they will lessen the frequency and severity of your Migraines. You should try them for at least 3 months before deciding whether or not they are helping (unless you experience bad side effects, then call your doctor!).

    Besides the preventative medications, there are other options for Migraines stemming from the trigeminal nerve. A nerve block could help manage the pain for a few weeks or even months. A nerve block is a serious of small injections of lidocaine in your scalp and around the trigeminal nerve that in essence numbs your pain receptors in this area. Medication should be the first line of defense, but if that's not helping a nerve block can be a good option.

    Your neuro explained where the headaches stem from but didn't diagnose the type of Migraine. I'm not a doctor so I can't diagnose it either. There are over 300 headache disorders and seeing a Headache Specialist is the best type of doctor to see to get a proper diagnosis. Basic neuros see patients other than Migraineurs (such as Alzheimer's and Parkinson's) and therefore are not always the best equipped to give the right diagnosis or find the right treatment. I suggest you try to get in to see a Headache Specialist. Here's more info:

    I hope this info helps and feel free to ask more questions.
    Best Wishes!
    -Katie Moderator

    1. Thank you so much for your response.

      I've looked into the links you sent me and they definitely cleared a few things up. I have only gone to said neurologist once and he put me on a new med, so I'm set to go back in january. The only thing that seemed to help at all was the prednisone, so I'm going back to the doctor on campus who originally helped me and sent me to said neuro to talk to her about getting back on it for a week or two to see if that's what helped, or if I was just experiencing a remission. I've basically had this migraine for going on three months straight now, with the only relief being the first two hours or so that I'm awake in the morning.

      What I'm trying to figure out is if he was telling me I have Trigeminal Neuralgia or if he wasn't quite saying that yet, because as far as I can tell it requires an MRI in order to really tell for sure if you do. I spoke to a man at a thanksgiving party who had a close friend with trigeminal neuralgia and he explained to me that the doctor was basically telling me that I'm in the early stages of just that.

      I'm really just sick of all the pain and the way that it's effecting my studies and daily life. My poor boyfriend has to deal with me in pain on a daily basis with the occasional emergency visit and I just want to go back to normal.

      Another question I have is this-I recently developed a new symptom (in the last week or so, as the migraines have been worse just about every single day) in which my ears are ringing when I'm getting the stabbing pains in my face. I'm just worried about what's going on and don't want to ignore anything potentially important.

      Again, thank you a thousand times for your help. This website was a gem to find and I'm so glad there's a community of people who I know are going through the same things that I am.

      Best wishes,

    2. Charlotte,
      Sorry for the delayed response (I was out of town). The ringing in your ears could be part of your Migraine. A lot of Migraineurs have this issue, which is also called Tinnitus. You should definitely mention it to your doctor and maybe go see an audiologist to make sure it's not caused by something else.


  2. Your neurologist has done very very well at being incredibly vague...Unfortunately there isnt much that can be done to help clarify things for you.

    The medications hes put you on would indicate (to me) towards treating migraine headaches more than trigeminal neuralgia. Prednisone to break a migraine cycle and the amitiyptyline and propranolol as preventatives.

    If I were you i'd attempt to make an earlier appointment if possible, grab yourself a pen and piece of paper and go in armed with as many questions as you can, written down ready. Failing that, make an appointment with your regular doctor to inform them of your new and worsening symptoms - dont be afraid of asking them as many questions as possible either!

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