Monday, June 23, 2014
How would you like being told by your neurologist that you are the first case of trigeminal neuralgia he's seen in 30 years?
We all know the throbbing, the ice pick stabbing or electric shock that comes from nowhere, that wave of intense pain that literally knocks you off your feet. The pain cycle is inevitable and so are the feelings of anger, fear, and depression. We all know the feeling when we get to the end of the painkiller bottle, have a month before our doctor can see us, the painkiller makes us a zombie and unable to function, or worse, the painkiller no longer works and the doctor refuses to prescribe anything stronger for fear of drug seeking.
It's important to try and understand this disease and learn what our triggers are. I learned the hard way that powerade is one of my triggers. Every sip caused unbearable pain to the point where remission was a foreign word, but something longed for like a pot of gold at the end of a rainbow. I also had a crap job as a customer service representative where I had to give misleading information to less than intelligent customers, so you can imagine I got cursed at a lot, plus the management allowed the customers to verbally abuse us and paid us virtually nothing, so of course that caused a significant amount of stress. In addition to the verbal abuse, they had the thermostat on sub arctic temperatures, which coupled with my topamax and tegretol made me even colder, which also triggered numerous attacks. Talking on the phone for 8 hours daily triggered attacks, smiling sometimes triggered attacks, as well as chewing. Naturally, this leads to a deep fear of dentists and any dental work, which isn't a good thing because that will lead to massive tooth decay and tooth loss and cause more facial pain in the long run, which also increases stress.
I have Atypical Bilateral Trigeminal Neuralgia, meaning it's on both sides, but the pain presents primarily on the left side of my face. When I sleep on the left side, that can trigger an attack, and I have to sleep on my right side all night, which causes my entire right side to be sore.
Never a day goes by without my maintenance meds and my rescue meds and rarely is there a day without some type of pain, even if it's a level 1. With this disorder, we learn how to cope and function with different levels of pain and if we aren't completely debilitated, then it's a good day.
There are some natural pain relief that I use that seem to help a little and takes the edge off of the pain when I have an attack. Of course there's Orajel which numbs the gums quite nicely, but my new favorite is a few drops of tea tree oil directly on the tooth above the nerve. Or, put a few drops in some warm water and use it as a rinse, just make sure you don't swallow. I have heard that peppermint oil and oil of oregano has some healing properties as well, but haven't used either.
Every day in remission or pain level 3 and lower is a good day!
Saturday, June 21, 2014
OK...so the nightmare begins right? This pain overwhelms you on one side or worse both sides of your face, (like me). You have either spent tons of money going to the dentist, been accused of drug seeking by the e.r. or insane by your general practitioner before someone advised you to see a neurologist.
At this point, the drug cocktail, "wait and see" what works, because they really don't know what will respond game begins. Usually the first drug that is prescribed is Tegretol, (carbamazepine), an anti convulsant, 100 mg and gradually increase your dosage. When we begin with neurological meds, there is a litany of side effects that enter our world of suck, such as behavior changes, mood changes, anxiety, depression, restlessness, difficulty breathing, difficulty sleeping, swelling of face tongue and throat and my personal favorite, low white white count, i.e. compromised immune system.
I was initially put on 50 mg Topamax, lovingly called "dopamax" because I also have classic migraine without aura. With that dosage, it was just inert materials, no medicine. The only plus with topamax is that when you initially take it, you lose weight. The negative and it's a MAJOR NEGATIVE, is that it makes you stupid and I mean incredibly stupid. Like Beyonce on Final Jeopardy stupid. You're incapable of intelligently expressing a thought because you can't find the words you should know. There is such a physical and mental slowing that it causes a depression almost as bad as the neuralgia the drugs are trying to help. The dumbing down goes away in a few weeks to a few months, but the process is soul crushing. Topamax is usually used "in addition to" other drugs. So, this is like the gateway drug for most people and they go from here. The side effects in addition to gross stupidity are constant numbness and tingling in the hands and feet that never goes away and I mean never. This is called parathesia, the pins and needles feeling when your hands and feet fall asleep. Even when you discontinue the drug for a few days, the numbness is still there. Even your neuro will tell you to "Just get used to it". Lesser known side effects are cataracts and liver damage.
During the early stages of the disorder, learning what trigger the disorder is tantamount, and there are more triggers than things that can sooth the pain. Family and friends will not understand the crippling pain and trying to explain will become extremely frustrating simply because they haven't heard of the disorder and to them, it's not real yet. What's important at this stage is getting a handle emotionally on the disease, because emotional well being is a trigger point along with diet, exercise, caffeine, artificial sweeteners, heat, cold, hormones and barometric changes in temperature.
I started Project Haven as a resource for anyone diagnosed with the condition or any friends or family members of loved ones that suffer from Trigeminal Neuralgia or facial pain.
So what is Trigeminal Neuralgia or (tic douloureux)? It's a disorder of the 5th cranial nerve that causes episodes of intense, stabbing, electric shock like pain in the areas of the face where the branches of the nerve are distributed. So that's the lips, eyes, nose, forehead, upper and lower jaw.
So you feel this intense pain and you were diagnosed as having trigeminal neuralgia. Now what? Well...there is good news and bad news.
First the good. You are not alone, and the disorder is in fact real. You can and will find a physician that will take you seriously and the pain eventually will become manageable.
The bad news is: You will take several medications that will give you several side effects and the meds may or may not help you. There will be daily cocktails of anti seizure medications, Prepare for tingling hands and feet, forgetfulness, unusual coldness from the medication, drowsiness, crankiness, and doctors treating you like a drug addict when you ask for narcotic pain meds because that is the only thing that helps during attacks. Be prepared to attempt to explain your disorder to friends and family and only get blank stares because they can't possibly understand your pain level. Be prepared to fear brushing your teeth, brushing your hair, washing your face, chewing on a particular side of your face, sleeping on a side of your face, a burst of cold air, kissing, certain types of foods and the numerous medical tests that await us.
No one really knows how we got this disease. Some say dentistry work, some say stress. I believe mine came from significant work stress, which is in fact my trigger. My suffering began in 2009 and only recently have my triggers been identified and avoided as much as possible.
But now we must all get together support one another, exchange information, and concerns so that no one feels like they are never alone.
Welcome to Project Haven!