The Day of Reckoning for My Brain Hates Me- TN or Not TN?

Earlier this week, I discussed the “Suicide Disease” and why I hope I have it, and today I saw my beloved local neurologist and I was prepared to ask my questions.

Let me first say that I was there to receive a Botox treatment, something that I’ve had countless times, and something that has become old hat. It was something of a surprise when my doctor opened with, “some patients who have received Botox injections in their neck have died of pneumonia. I just wanted to let you know. No one with your condition has died, and we don’t know if it’s truly linked.”

When your medical appointments start off with needles in your face and your doctor telling you how other people have died from the thing that she is in the process of doing to you… you don’t have the warm fuzzies. But this is the sort of relationship my doctor and I have. There is no bullshit in the exam room.

Trigeminal Neuralgia – Check Yes or No

I let her know that I had two questions for her about some research I had done. Obviously, the huge question was, “can you rule out Trigeminal Neuralgia (TN)?”

The short answer is that my doctor can’t rule it out. The long answer is that if it is in fact an underlying cause for the pain I am in, I still have Status Migrainosus with refractory/intractable migraine and the TN doesn’t change that… merely gives us different treatment options. My MRIs have been clean, so I don’t have a trigeminal tumor. Therefore, the only course of action to determine if I have TN is to take the medication used primarily to treat TN, Oxcarbazepine.

Oxcarbazepine is an anti-seizure medication, like Topamax, and, like Topamax it is supposed to slow cognitive processing. It’s knon as a mood-stabilizer, however it has the standard suicidal-thought warnings as all anti-seizure medication. The really fun things about Oxcarbazepine are the dangerous side effects. It can cause bone marrow suppression and possibly a deadly rash! Exciting! Those side effects are rare. Medications are awful and to do good things for one part of your body they often have to destroy another part of your body. Topamax has been killing my kidneys for years. So far Oxcarbazepine makes me very, very dizzy (after two doses), but I’ve had no pain relief.

If the medication reduced my pain, then I have TN. If it doesn’t, well. I’ll stop taking it.

The Mother Fucker Gene

My second question had to do with the MTHFR gene, which I affectionately call the Mother Fucker gene. MTHFR, the methylenetetrahydrofolate reductase (MTHFR) gene, has been linked to a variety of medical disorders. A mutation in this gene causes vitamins not to be processed properly and then migraines can happen. I asked if I should be tested for the mutation and if there were any existing gene therapies worth exploring.

My doctor informed me that insurance typically doesn’t cover genetic testing of this nature, and that there aren’t existing therapies. I’ve done some reading, and there are specific supplements you can by that cater to the mutation, but there is little to no research speaking to there effectiveness. Most of the success stories are word-of-mouth. What did come out of this conversation with my doctor, and what I find most interesting and most terrifying, is the MTHFR’s link to PFO.

PFO, or patent foramen ovale, is a hole in the heart that didn’t close after birth. This defect in the heart is strongly linked to migraine, so much so that my doctor recommended an echocardiogram as soon as I brought up MTHFR. Her reasoning is that given my history and family history, it’s likely that I have the mutation, and that the echocardiogram is a painless stopgap. The worst case is that we discover the hole. If we do, she recommends the hole be closed because it might just help me feel better.

There are No Stupid Questions

I’m glad I asked my questions because there is now at least some momentum in my treatment. I can’t say whether it is forward momentum. My doctor also did a ton of blood work. I feel like this was the creative, out-of-the-box thinking she needed. I think she and I both admit that we’ve been stuck. We haven’t known what to do. There’s tons of new research, but what do you pick to try? And how do you broach the subject?

You ask questions.


5 thoughts on “The Day of Reckoning for My Brain Hates Me- TN or Not TN?

  1. “If the medication reduced my pain, then I have TN. If it doesn’t, well. I’ll stop taking it.”

    I’ve taken quite a few of the anti-seizure medications, but they did nothing for my pain. I read about TN, but since the meds didn’t help, I figured I didn’t have it. Plus, the descriptions I found for TN didn’t include the different symptoms that appear when the condition is caused by injury, so I thought they didn’t apply to me. I was wrong, but then none of my many doctors picked up on it either.

    I also don’t have a lot of faith in doctors — or the currently available treatments for TN. I suppose it wouldn’t hurt to add yet another medical condition to my list of those that cause me pain — pay for a proper diagnosis of TN. If there was a treatment I wanted to try, I might be interested in paying a doctor to give me access to it.

    But there’s no cure for any of the conditions I have, and if it’s true that I have TN, the same fact applies. Doctors don’t have any answers.


  2. Good luck with the Trileptal trial. While I certainly hope you do not have TN, I do hope that you find answers and relief. I am very surprised that your Neuro started with this medication instead of Tegretol. I can definitely sympathize with the terrible side effects that come with the anticonvulsant trials. I started with Tegretol, followed by Trileptal, and then Lyrica, and lastly Gabapentin (with a Nortriptyline thrown in to keep things interesting … 😉). Those were NOT fun times, despite feeling slightly drunk on a regular basis. The side effects were WAY too much for me. We started with the medication with the worst side effects but supposedly the most effective TN medication, so it was somewhere between Tegretol and Trileptal that I had to take a month long medical leave of absence from work. I truly could not function. It felt as if my thoughts would get stuck in between my brain and my mouth so conversations and any verbal communication was extremely difficult. Written communication wasn’t easy but at least I could take my time with it, so that has become a practice that I have continued long-term, because although I am no longer on the seizure meds that paralyzed my mind, I still feel somewhat cognitively challenged simply from the distraction of non-stop, never ending pain. Unfortunately I never experienced a great deal of relief from any of the traditional TN meds but my Neuro also never officially ruled it out (that we discussed anyway … I did notice that some of the Dx codes in my medical records were changed but who knows exactly what caused that to happen). We pretty much accepted that we may never know for sure what this monster is but it could be an atypical form of TN. I’m not sure that my Neuro was/is even aware of Type II or ATN, which clearly fits my symptoms. It’s such a long, painful, and frustrating journey of trying to find answers and a solution to the pain. Just reading about your appointment brought back a flood of memories of that first year or so after my facial pain arrived. I truly hope that you have better luck than I did at actually finding a concrete, definitive diagnosis and treatment. I still consider my situation a work in progress. I have tried most of what my previous and current doctors have the knowledge to suggest but there is still hope of finding a solution through my own research or finding a doctor who will think outside the box enough to figure this out. Good luck and I hope you have a low pain and side effect free day! 🌼

    Liked by 1 person

    • Thank you!

      You know, I was on Nortryptiline for a long time. The dreams were crazy. She didn’t start me on Tegretol (Carbaz…) because the Trileptal (Oxcarbaz…) is supposed to have a lower incidence of bone marrow degeneration. They are chemically similar enough, according to my doctor, that if it is TN I should see some kind of movement in a positive direction, even if it isn’t a sure fire fix.

      Three years in, I’m resigned to the fact that it could just be a weird, painful thing that’s happening to my body and will continue to happen to my body. I know for a fact that anti-convulsives help, because when I was weaned off of Topamax during a very failed experiment to cleanse my system, everything got much worse very fast. The idea was that since I am on the spectrum, perhaps they were over-medicating me. My doctors still try to keep my medication regimen much simpler now than they did prior to my ASD diagnosis. Yet I have to be on some kind of anti-convulsive. It’s a given.

      The thing that really bothers me is that the idea of calling it facial pain instead of head pain has never come up at any of my appointments. My pain has always been described in terms of migraine. When I brought it up to my doctor, she said that light sensitivity, nausea, and all of my other fun symptoms are not TN symptoms. I put forth that the trigeminal nerve is being discussed as an active player in migraines, that the Cefaly was created to work on that nerve, that most of my Botox injections center on that nerve, and that my pain is in the trigeminal area. Couldn’t ATN be an underlying cause that is making someone who is prone to chronic migraine just have constant flare ups? I, of course, wasn’t arguing to have ATN, I was making a scientific case that I wanted her to be able to completely rule it out. It should have been ruled out a year in.

      Facial pain, headache, and migraine should all have the same checklist.

      But this is the great thing about the internet, right? We get to trade stories, discuss medications and treatments candidly, and see what new research is out there. We can take all of that to our doctor. A lot of people have asked me why Lyrica hasn’t been tried on me yet. And that’s something I’ve been trying to build a case for. I hate playing musical chairs with my medication. I am always the one left without a seat. But if something will work, I have to be open to that possibility.

      Thank you for being so open about your experience. We’ll find something someday. Until then, keep plugging. I hope you have a great day and wish you the same!!! ❤

      Liked by 2 people

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