When I first felt it, it was two years ago, and lasted 5 seconds of the worst kind of pain, I’d ever felt in my life. Back then it only happened a few times every few months, then it moved up to a few time a month. Now, its a constant burning in my temples, and surges of electrical shock like pains all through my face, no telling when they’ll happen, just randomly throughout the day. The kind of pain that brings you to grasp your head or if no ones around the kind that makes you lie down and cry in utter agony. Daily, I feel like I’m fighting a monster no one else can see. Being the only one that feels this monsters attacks , sees it coming, and fears it, can make for new anxieties because it’s takes all my energy to withstand it and I start fearing every day things that set it off like, showers, brushing hair, or teeth, and eating. I feel torn between two realities, the one you see, and the one we don’t want to talk about. But, I want you to know its okay to talk about it I have a degenerative illness, and you can ask questions about it that’s okay with me.
CAUSE
Trigeminal Neuralgia is considered to be a rare disorder as it effects 5 in 100,000 new patients every year and now I am one of them. It is a type of neurological condition that causes pain along the largest cranial nerve in the brain. It is both a sensory nerve meaning that it works at sensing sensations, as well as a motor nerve, that works at sending messages to the central nervous system. Its job is to run messages about sensations between the sinuses, tearing, saliva, and the ear. The Facial Pain Association stated on their website that, “Trigeminal neuralgia (TN) is so uncommon, with an estimated prevalence of 155 cases per million persons.” And, according to an article on medscape about the etiology, or cause of trigeminal neuralgia, “The current consensus is that TN is caused by demyelination of the trigeminal nerve. The trigeminal nerve can lose myelin in certain diseases such as multiple sclerosis or more commonly by constant pressure from an abnormally located artery.”
TYPES
The onset age usually comes after 40 and before that the development tells doctors of a possible indication of multiple sclerosis. There are different types of Trigeminal neuralgia. Type 1, 2, Atypical or symptomatic and possibly others I’m not aware of (I’ll post more on that later). My condition is presenting on both sides of my face, with constant pain everyday, and with flares. It effects all three branches on both sides. Which is unusual for this disorder, as most cases effect a couple branches, not all or both sides. It is not responding to any medical interventions, or medications, and so that leaves me with one last option brain surgery.
SYMPTOMS
The pain may cause those affected by TN to cringe, wince, or hold their head in response the pain. The skin on affected side(s) may appear flushed, ears often go red, and eyes may tear up when the pain hits. The pain experienced is neuropathic pain, which feels like a burning electric shock type of pain, caused as the nerve demyelinates. I have found that through practicing deep breathing exercises and meditating on trying to keep my face from contorting has helped slightly.
Constantly, I feel torn between two realities, the one you see, and the one we don’t talk about. In the one reality, I’m a wife and a mom. I go about my days trying to be brave, real and authentic. On a day-to-day basis, I do my best to push through the pain that no one sees to do house keeping, cooking, changing diapers, taking kids to the parks, exercising, teaching toddlers life skills, and potty training. On the inside, I feel the trigeminal neuralgia everyday as soon as I wake up in my temples and across my face. It’s triggered constantly, as Im brushing teeth, showering, eating, swallowing fluids, chewing foods, smiling, blinking, wind touching my face, and as kids are snuggling up against my cheeks…All hurt deeply and send me into waves of nauseous pain and if I can’t handle it at bay with deep breathing, I might need to run and vomit. Or lay down on the floor holding my head crying silently for a few minutes while kids crawl over top of me. This is the definition of an invisible illness, you can’t see it but these nerves are degenerating so badly that I need brain surgery, and the pain is held within me silently, as best as I can contain it because if I cry out as badly as I was to it’ll scare my toddlers and I can’t bear that. I try not to let the pain be noticeable and thanks to my other pain conditions I have 10 years experience in hiding it. I just don’t want the kids to grow up with an image of mom in pain all the time, so I try to shield everyone from seeing that. The provider of their comfort needs to be strong and so I am.
It has often been termed the “suicide disease” because 25 - 40% of people with the disorder are driven to suicide due to the severity of the pain as it is known to be one of the most painful disorders known to man. Another issue to be aware as with any pain disorder, is depression, as the amount of pain over longer periods of time ends up causing a chemical imbalance in serotonin, norepinephrine, and GABA levels. The depression is often secondary to TN as the pain is tough to bear.
I've tried medications for the TN, which had horrible side effects. Carbenzaprene suppressed my bone marrow, and gave me an allergic reaction, making me very sick and causing a trip to the ER. The rest just had no effect on the pain level that I’m fighting. I paid for expensive tDCS experimental treatments, and hauled my two babies and a driver, on 20 trips out to the treatment, all in hopes of resolving the TN but with no luck. My nerves seem to be degenerating quickly, on both sides. This disorder is progressing and my pain specialists only suggestion till I can see a neurosurgeon is taking more amounts of pain medications to keep me functional. Yet, the Dr.’s term for “functional” is kinda laughable as most of the medications cause short-term memory loss. Basically, the medications keeps you from screaming in agony all day long, and able to preform very basic tasks (unreliably). So, sometimes you can get things done and other times you can plan your own surprise party because your that forgetful.
The TN isn’t generally something that has a high mortality rate, and so it is usually that the death is caused by a complication or secondary syndrome. When the pain gets to be so bad that patients often can’t eat, chew, or drink fluids the results is weight loss and nutritional complications. In rare cases people end up starving and in need of permanent feeding tubes as a complication of TN.
SURGERY
In the healthcare community, the GP’s don’t seem to understand what to do with a rare neurological disorder. Thus they don't know what to do with you until you direct them as to please refer me to this specific specialist who I have researched and is a pain specialist. They then prefer that you follow up with the specialist for everything. Or give a lecture on how drugs are bad without understanding what your daily life or pain levels are like. The Pain specialist is intrigued by having a rare case but doesn’t necessarily know the best way of managing it, but enjoys putting you in his research studies like a Genia pig. when you run out of options, and thus it is left to the patient to research their options. I am the only one who sees my monsters daily, the only one who researches my options, the only one coming into the office with drug options and stating which have and haven’t worked as the Dr’s do not look at the file, and the only one convincing others, its real and needs a cure. There’s something deeply wrong with our health care system when the patient gets all the info, drug info, specialists names, numbers, numbers, fax numbers.
After many visits, to ER’s, GP’s, and specialists, I found I could only find true answers about this new rare disorder online. The GP, and ER doctors knew what the disorder was from small portions of old textbooks, but just wanted to up the medications which sent me back to the ER in pain. The pain specialist knew the most about it, but his treatment options were limited to drugs and research studies that were experimental and did not workout. The drug options he tried, I was allergic too, or were ineffective as my trigeminal nerve stopped responding to them. And so, we now know I have limited options they are a variety of brain surgery choices, but all begin and end in brain surgery. It seems I can avoid it no longer.
There seems to always be three options for those with TN the very rare no treatment, medication, and surgery. Yet, overtime the drugs used to treat TN often lose their effectiveness, thus more than 50% of people with TN eventually get multiple surgical procedures. Often surgery is considered to be suggested earlier when medications fail. So now I know I need surgery, the trouble is which one…?
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