NCDs : How Trigeminal Neuralgia Took Over My Life
- 8 Posts
- Age 14
Have you ever heard of Trigeminal Neuralgia? It's very likely you haven't.
"It is estimated that 1 in 15,000 or 20,000 people suffer from TN" (Wikipedia.org)
So what is Trigeminal Neuralgia? It is a rare neuropathic disorder that affects the side of the face with stabbing electric shocks that come from the Trigeminal nerve which is a nerve consisting of 3 branches that is located on the side of the face.
It affects the jaw, mouth, ear, scalp, teeth, the ocular nerves and the side of the face. It is a very rare disease which is why it is commonly misdiagnosed.
Trigeminal Neuralgia is also called the suicide disease because many of the affected end up committing suicide due to the extreme pain that the disease causes. It is known to be one of the most painful conditions known to man kind.
Although there are other causes that lead to Trigeminal Neuralgia one of the most common causes is when the Trigeminal nerve is compressed by a brain artery in the affected side. When it's compressed the nerve reacts and sends the pain which is described as shocks, burning, prickling.
This disease has no cure other than surgery and it's not always recommendable due to the dramatic side effects. It can be treated by medicine which sleeps the nerve. This disease never goes away it's always there and it's something you have to live with.
It is most common in females than males over 50, and sadly my mom at 36 years old was affected with it.
At the end of January 2014 it all started as a common tooth ache. My mom would complain, and she would not be able to eat due to the pain. She went to 3 dentists and 2 endodontists. A month had passed and she was desperate and every day the pain would get worse and worse. It was so frustrating to see your mom in so much pain, and have no doctor tell you what is going on. It was so much harder for me because I lived with my mom and brother in the Dominican Republic and my dad due to his work wasn't with us when it all happened.
One day, I asked my mom to give me the most detailed explanation about what she was feeling and where it was. When my mom explained what she felt, and I wrote it down, I took it upon myself to find out what was going on! Everyday her pain was worse, and everyday, she couldn't do anything. She couldn't eat because chewing made her pain get worse, and something so slight as a current of air would make her cry.
It took me 3-4 days of intense research and looking at so many
neurological disorders, that I thought if I cross referenced the
symptoms I might be able to find something. On the fourth day I
showed a picture of the Trigeminal nerve and asked my mom if that
is where she felt the pain, and indeed it was. I had, at 13 years
old found out that Trigeminal Neuralgia was what was stealing my
Now you might be wondering, how could a kid find that out?! Since I've been about 6 I have known that I wanted to be a doctor. That lead to watching everything I could find in TV about medicine, and reading countless books about the human body and diseases, reading articles, biographies of remarkable doctors. It is a hobby of mine to reaserch about diseases, conditions, anything that has it do with medicine. So you could say that I have and had some background knowledge on neurological disorders.
The minute I found out it was TM I told my mom what she had. She went to her internist and told him what she had. When I knew what she had I educated my self on everything about it, I would spend hours researching about it.
Every time I finished my work at school, I asked to be excused to the library so I could continue studying about Trigeminal Neuralgia, I would spend my lunch studying. I would come home and after I helped in the house, and do my homework I studied. As I continued reading I knew it wasn't going to be easy. At that moment my mom was my responsibility and so was my brother.
There was a day when the pain got so bad that my mom said all she wanted in life was to die and begged God to take her away. It was the end of the second month and my mom had a few weeks earlier called my grandma so she could stay with her while me and my brother were at school.
I had just gotten home from school when it started. My mom said that the pain was getting really bad and after 2 minutes she stated crying and screaming, and saying that if our apartment windows didn't have bars out side she would jump out of the window because the pain was so horrible. I was there with my brother, grandma and mom. My brother and grandma stated panicking and praying.
I tried telling her to breathe, but she wouldn't respond, the pain was too much. In the 3rd minute I had called my moms neurologist and specialist and asked them "where do I take my mom?! She's suicidal due to the pain! TELL ME WHAT TO DO!"
They told me to take her to the ER. Within less than 8 minutes I had taken a cab and had gotten her in the ER for treatment. The doctors were surprised at how "brave" I was, but I wasn't brave, I was acting out of fear because I thought my mom was going to die.
Having this disease is very hard and painful and having someone so close to you suffering from it is the worst thing ever, because you can't do anything to stop the pain. She would spend the whole day in pain,and the medicine would only relieve only a bit of the pain. She spent 2 moths of extreme suffering, 2 months of only having a bite or two because it was so painful.
It was very hard for me, because it's so scary to know that your mom is in excruciating pain 24 hours a day. It is still so hard for me to remember, I'm crying writing this because it's something that you and I would never ever in my life wish to my worst enemy. She would also have more pain because she had previously last year had 2 strokes which left her with a permanent headache that wouldn't go away. She would have the pain all day and have "episodes" of 30-60 mins when the pain would be unbearable.
She for 2 months, everyday, 3 times a day, had to inject herself in the belly, with "Tramal" so she could with stand the pain. She's taken one-and-a half-months of learning how to live with Trigeminal Neuralgia. To this day when she gets too much pain she has to inject herself. This made me realize how lucky I was, to live without pain,and to have my mother by my side.
NCDs are dangerous and the major 4 kill over millions of people a
year. Some NCDs have very similar symptoms as other health
problems, which is why they are misdiagnosed often and lead to
deaths. Also NCDs are NON-COMMUNICABLE which means you can't get
them from someone. When you go to the doctor with with a
communicable disease it's easier to diagnose because you often
know the cause, but finding the cause for NCDs is very tricky and
often some don't even have a known cause, which makes them harder
to diagnose which makes them deadly. NCDs are unconvicted
killers, that we should all know about, so that if you ever
encounter one, you see it coming.