Trigeminal Neuralgia diagnosis that would change life
A scary & painful nerve disease called Trigeminal Neuralgia diagnosis that would change my life forever.
It started with some uncomfortable pain, tolerable but uncomfortable pain on the side of the face. It had been going off & on for about 6 months before I was diagnosed. I went to the dentist thinking I had a broken tooth or maybe it was a cavity. The dentist did some x-rays with nothing showing. My teeth were fine! My dentist suggested not to eat on the left side, thinking maybe I bit something that irritated my teeth, so he prescribed me antibiotics just in case of an infection. I never thought I would have a Trigeminal Neuralgia diagnosis that would change my life forever.
Six months later, then BAM!
On an early Saturday morning, I woke up in extreme pain along the left side of my face with a migraine. It was like I had an electric shock-like pain. So, I went downstairs and took some Motrin and tried to cope. I made my coffee and fed the cats as I usually do. I cannot express the pain that I was in; it was so bad I just wanted to stop. The pain was excruciating. All I could do was cry. I mean, I was sobbing. And I didn’t know what to do because I wasn’t getting any pain relief whatsoever.
I scared my husband.
I managed to go upstairs to wake up my husband. As I was waking him up, I was hyperventilating and sobbing because, at this point, the intensity of the pain was so severe. He jumped up. He was scared and didn’t know what was happening because I was struggling to tell him with words what was happening to me. I struggled to get the words out of my mouth to say to him; the pain was so bad in my head and my face. I didn’t know what to do. Motrin just was simply not working. The things that I enjoyed most were coffee in the early mornings and my devotions. But I couldn’t even do that because it hurt so bad.
I was begging God to help me!
I Prayed & prayed for God to spare me from this intense pain. But, God, Why is this happening to me? Please, God, I beg you to please take this awful pain away from me. Why God, Why?
Headed to the Hospital
As I was lying there, I was sobbing; the pain was the worst I ever felt in my life, worst than giving birth! Finally, my husband said that’s it, we are going to the hospital. Once we got there, they took me back, and I was surprised we were going back to the room so fast. More than likely, my heart rate was elevated from being in so much pain.
The nurse inserted the IV and gave me pain meds to help with the pain. Thank God for pain meds! It took the migraine away but only took the edge off my side of the face. I was absolutely miserable and tired.
For six hours, we were in the hospital.
The doctor ordered the age of a bunch of laboratory tests and a CAT scan to ensure I didn’t have an infection. At this point, I was already on an antibiotic the dentist had prescribed a week earlier just in case; that’s why I have been having pain in my mouth. We waited what seemed forever for the results. Finally, the scan came back normal. Relief, right? Not exactly. Then why am I having severe facial pain?
Trigeminal Neuralgia diagnosis that would change my life
The doctor came in, and she believed that the apparent cause of the pain I was experiencing was a rare nerve disease called Trigeminal Neuralgia. I was like, What is it, and how did I get it? She explained that a compression of the Trigeminal nerve causes severe pain and is a chronic pain condition common in women over 50. What do you mean? How did this happen?
As you can imagine, my head is spinning with all these thoughts.
Now I am scared. I mean, really scared. What does this mean for me, my quality of life? I am in good health.
Am I going to have pain for the rest of my life? I mean, all these questions I have, and I have no idea how this is going to affect me.
I asked her if this was curable. She said I think so, but it’s rare, and I will need to follow up with a Neurologist to get an MRI Scan and pain management. Those who have it are women over 50. I am only 51. In rare cases, men developed TN as well. So how could this happen to me? She persisted with questions like, did you have dental work, a viral infection, or have any facial trauma & so on? I was like, no, not at all. I had dental work many years ago, but that’s it.
Then she sent a Neurologist in to come to talk with me. At this point, I am over it. I just want to go home. We had already been in the hospital for over six hours at this point, and my poor husband was in pain himself. Sitting in hospital chairs is not exactly comfortable, and we haven’t eaten. He also believes what I am experiencing are symptoms of Trigeminal Neuralgia. However, I need an MRI to see where or what part of the nerve is being compressed to get an accurate diagnosis. This will determine if any surgical procedures need to be done. The doctor didn’t want to tell me that this Trigeminal Neuralgia diagnosis that would change my life.
Finally, getting discharged.
I am given a prescription for a medication called Carbamazepine to help with the symptoms of TN pain and follow up with a Neurologist & my primary care physician as recommended.
So, I went to get my prescription filled, only to find out they were out of stock. I mean, seriously, I could have just cried. But, I was like, What am I going to do now? So I headed home to make calls to see which pharmacy in my network had it. Finally found one! Thank God! Even with the fiasco, I was dealing with getting my medication, it all worked out.
Fast forward, I met my Neurologist.
Finally, after waiting for 3 weeks, I met with the Neurologist after my emergency visit to the hospital. She confirmed the diagnosis of trigeminal neuralgia and really helped me to understand what this disease is. My main concern was my quality of life and what this would do for me. She also believed I would recover from this, more than likely with surgery. First, I will have to get MRI To see where the compression is on the nerve. Followed by blood work, then we can determine what needs to be done. But for now, her main concern was to get the trigeminal neuralgia pain managed, so I could still enjoy my daily activities. The doctor upped my Carbamazepine & also prescribed me Baclofen to take as needed.
As she explained, with the medication, it’s just all about adjusting the cocktail to see what will work for me for this nerve pain. I will need to wait a week or so for the medication to get into my body to start doing the work, and I have been on the medication for almost 2 months now and have minimal pain. I struggle with some discomfort, like an electrical current every now and then, but it is tolerable.
The side effects of Carbamazepine & Baclofen
It was a struggle for the first two-week on this medication. I was constantly light-headed, and there were times I felt like I was losing it. Not to mention, I was so exhausted. No matter how long I slept, I was exhausted. I also cried alot! These were some really tough moments the first couple of weeks being on low doses of medication that I was struggling with. However, my family stepped in to help me through the tough times. I thank God every day for them.
It has been an adjustment.
It has been four months since the diagnosis, and the medication has helped tremendously. Every now & then, I have some pain, but it is nowhere near what I had felt. Every now and then, some pain feels like they need to come out, whether it’s my jaw, around the eye, or my upper teeth. But, it has been tolerable where I can enjoy everyday activities.
Trigger Zones
There are certain things I cannot eat. But all the things that can trigger the pain are part of my daily life as anybody else’s is smiling, talking, laughing, Brushing teeth, eating, and Everything that is just part of our daily lives. I’m also conscientious about which foods I eat. Even flossing my teeth hurts.
Some other triggers could cause the pain, for instance, putting my makeup on, wind on my face, or even just a kiss and a hug from my husband on the left side of my cheek. I am learning to adapt to these triggers; however, some days are harder than others, but by the grace of God, I will get through it.
I will never know the underlying cause, but I will tell you that I pray no one else has to deal with this awful nerve disease like I will for the rest of my life. This has definitely affected my quality of life and how I do things. Still, I am doing well and learning how to deal with certain things, so it doesn’t take control over my life. Now, I have fewer side effects from the medication. The medication did cause me to gain weight, but with the doctor’s recommendation, I am on a low-carb diet and trying to find a workout routine that will fit into my schedule; hey, I already lost 10 lbs 🙂 Woot woot. It took me a month, but at least I am moving in the right direction.
FAQ
Can Trigeminal Neuralgia go away?
Usually, Trigeminal neuralgia is a long-term condition, and remission time often gets shorter. However, effective treatment
can control most cases to at least some degree.
Main Symptom of Trigeminal Neuralgia
Sudden attacks of severe, sharp, shooting facial pain last from a few seconds to about 2 minutes. The pain is often described as excruciating, like an electric shock. The attacks of pain can be so severe that you’re unable to do anything while they’re happening and affects the person’s quality
of life
Triggers that can cause Trigeminal Neuralgia to flare up?
- Brushing your teeth
- Flossing your teeth
- Putting Make-up on
- Breeze/Wind/Air on the face
- Touching the face
- Chewing/Eating
- Talking or Laughing
- Change of Temperature
What are the leading causes of Trigeminal Neuralgia?
Trigeminal neuralgia is caused by pressure on the trigeminal nerve close to where it enters the brain stem; the lowest part of the brain merges with the spinal cord. This type of trigeminal neuralgia is known as primary Trigeminal Neuralgia.
Where would you feel the pain of Trigeminal Neuralgia?
Trigeminal neuralgia (TN), also known as tic douloureux, is sometimes described as the most excruciating pain known to humanity. The pain typically involves the lower side of your face and jaw. However, sometimes, it affects the area around the nose and above the eye. You may also experience facial numbness, upper lip, pain, and/or numbness on the left side of your tongue.
How do you know if you have Trigeminal Neuralgia?
The pain is often described as excruciating, like an electric shock. The attacks can be so severe that you cannot do anything while they’re happening. You would need a confirmed diagnosis to meet the diagnostic criteria.
Can Trigeminal Nueralgia be cured?
No, this is a life-long disease; however, it can go into remission. In addition, there are surgical treatment options that may help.
Trigeminal Neuralgia diagnosis that would change my life
I pray that I never experience this debilitating pain again. Added to my life, I will have to have years of follow-up visits to the Neurologist to keep the pain manageable. As long as I am taking the medications, I should be ok unless it gets worst; then, we will discuss other options such as increasing the meds or surgery.
Conclusion
Life has a funny way of revealing itself. You never know if it is going to be good or bad. Although I haven’t come to fully accept being diagnosed with the awful painful disease, I am taking it one day at a time, so I have a tight grip on it so it doesn’t interfere with my quality of life. I don’t know what I would have done if my family wasn’t by my side, helping me get through it all! I am so blessed!
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