For those of you who REALLY know my mother, you know how incredibly sweet, open hearted, giving, loving, and self-less of a person she is. All her life she has always given (ALWAYS) and rarely if yet ever took for herself. She is also the strongest person I know. I have never seen her cry or complain about anything! She raised three children all on her own, even working three jobs at one point, and always did whatever was necessary. Through it all, she always had a positive, vibrate outlook on life.
Now, she’s in desperate need to be given to. About three years ago, my mother started to have a strange pain in the lower left mandible area of her face. Naturally she went to a dentist, and then to a dental surgeon, who unnecessarily pulled out healthy teeth believing that this was the problem. The pain continued, at first surfacing for only a few moments a day, but always there and building up slowly over time.
This pain most recently (right before the holidays) escalated to the point where my mother was rushed to the ER. The pain can be unbearable for one person to handle. She’s since been to the ER three times, and we’re afraid it’s far from over. She has been diagnosed with what is called Trigeminal Neuralgia. Tri-what?! As with most people, we had no idea what this is, and have since been trying to educate ourselves about this disease. Let me try to explain as best as I can.
Trigeminal Neuralgia is a very rare condition. Some articles say as few as 1 out of 15,000 people have it. It is called the suicide disease because of the severity of the pain, and the little relief that individuals get with today’s medicine. There is very little research, let alone clear answers on how to treat this. From what I have read, and based off my mom’s reaction to the pain, it is an excruciating pain that affects the entire body. It begins with a sharp, jarring pain that is focused in the jaw area – as if being stabbed by a knife and then having electricity run through the wound. It can last for seconds, minutes, even an hour. The pain can completely debilitate you, as it works its way through the entire nervous system leading to convulsions. After each episode, my mom is left in shock and completely drained of all energy, as if she ran a marathon. Most people who have this live in constant fear, never knowing when it will strike. My mom has said she would prefer to give birth ten times over than to experience another episode.
· The attacks are said to feel like stabbing electric shocks, burning, sharp, pressing, crushing, exploding or shooting pain that becomes intractable
· Pain may be triggered by everyday activities such as eating, brushing teeth, talking, head movement, breeze, air conditioning, hot or cold food, or may come up spontaneously without any trigger.
· Pain can last for a few seconds or up to a few minutes. For some, the pain is constant.
· The pain can range from mild to excruciating
· In some people pain attacks are known to worsen in frequency or severity over time
· The pain has a significant impact on activities of daily living especially as people live in fear of when they are going to get their next attack of pain and how severe it will be. It can lead to severe depression and anxiety.
· Cysts, Tumors, Blood vessel compressing on the nerve
· Damage to the myelin sheath that protects the nerve
What answers does Conventional Medicine have?
· Carbamazepine, an anticonvulsant drug, is the most common medication that doctors use to treat trigeminal neuralgia. In the early stages of the disease, carbamazepine controls pain for most people. However, the effectiveness of carbamazepine decreases over time. Possible side effects include dizziness, double vision, drowsiness and nausea.
· Other types of Antiseizure medications like gabapentin, clonazepam, sodium valporate, lamotrigine and topiramate.
· Surgery: can be very risky potentially causing paralysis to the face or other health risks. If there is a cyst or blood vessel compressing on the nerve that surgery is a clearer solution. In my mom’s case, she had an MRI/MRA done and everything came back ‘normal’ and no cyst, tumor, or blood vessel was detected.
Side Effects to Medications
There are drawbacks to these medications other than side effects. Some patients may need relatively high doses to alleviate the pain, and the side effects can become more pronounced at higher doses. Anticonvulsant drugs may lose their effectiveness over time. Some patients may need a higher dose to reduce the pain or a second anticonvulsant, which can lead to adverse drug reactions. Many of these drugs can have a toxic effect on some patients, particularly people with a history of bone marrow suppression and kidney and liver toxicity.
After consulting with a neurologist, my mom was put off work for the time being. The pain is unpredictable and her medication causes her to be dizzy, tired, and not quite her ‘Jola’ self. She’s not able to drive as a result. We brought my mom down to Florida to live with us (yes we moved to Florida for those of you who didn’t know). The weather has been making her feel better, as for any nerve problems, heat is better than cold. There are good days, where she is lively, feels better, and we pretend for a few hours that there never existed such a thing like TN in our lives. And then there are days where I watch her helplessly as some entity takes over my mother and she suffers away.
We are frustrated and angry. But more importantly, we are hopeful that there is a solution, and that this all is happening for a greater purpose. Where this is leading us, we have no idea. All we know is that conventional medicine has no further protocols/answers for my mother and we now want to seek alternative treatments and medicine. We’ve already had some initial successes taking this route. However, this is where we need your help as this route can get very expensive and is out of scope of regular health insurance. My mom has no idea I put this page up for her, let alone I don’t think she knows a site like this exists. I would like to surprise her because I know she would never let me do something like this for her. I hope with your help we can raise enough money where we can take her to treatments and help her without worrying about finances because worrying is the last thing someone with nerve problems needs.
Whether you believe in alternative forms of medicine or not, we are at a point where we will try anything just to help relieve my mom from any pain. Several doctors told my mom that they feel so bad for her and what she is going through, unfortunately there is just no clear treatment for this. If anyone has any useful information about the topic or a person they can direct us to, we would be more than grateful! With the money we can raise, we plan to take the following steps outside the conventional medical realm:
· Ayurvedic Treatments such as Panchakarma, shirodhara, abhyanga, etc.
· CranioSacral Therapy
· Myotherapy/Myofascial release therapy
· Chinese Medicine
· Sanatorium facilities specialized for nerve problems in Poland that we would love to take her once it starts getting warmer in Poland
· Other specialized Neurologist within the country or Europe that will be out of pocket pay
I can’t thank you all enough. Even if you’re not able to donate, but took the time to read this to learn about this condition and my mother’s situation. There needs to be more awareness and research about this unfortunate and awful disease.
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