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.