I thought I would have shared this a few weeks ago, but it’s been a lot to process. It’s been weeks of back and forth, from diagnosis, to other possible diagnoses, to being diagnosed with something three times and then removing each of those. It’s been a lot to handle. So much back and forth.
A few weeks ago I had a headache. It was more severe than the headaches I occasionally get, but I didn’t think much of it, and figured it was because I forgot my beta blocker the night before.
The following day the pain spread to my cheek.
The next day my ear.
And then my jaw.
It became excruciating. I had pain behind my left eye, and my vision was slowly going out. It would last for a few minutes and then fade away. The best way to describe it was like a contraction. I was fearful for when it would come back around. It was waves of pain.
All while my left ear felt like the eardrum was going to burst at any moment.
I tried to ignore it, but the pain became unbearable. I went to the urgent care.
They took one quick look at my ear, and said “ear infection”. But also said the pain did not typically happen in those areas with a general ear infection, but that if the pain got worse to go back to the doctor.
I was content with the diagnosis. Now I can have medication to clear this up, and the pain will be gone. I felt relieved.
The next day, I tried to deal with the pain. The medication should be working soon. Everything will be fine.
The medication did not help. I was in the most pain I had ever been in. I’ve given birth twice, and this pain far surpassed birth. I felt like I was dying. There was so much pressure in my face, ear, and behind my eyes. I could not eat, and I could barely move.
I made the decision to go to the emergency room. I sat in my car, contemplating if I should go or not. I really did not want to, because I felt like an ear infection was not a good enough reason, but I knew I could not physically handle the pain anymore.
When I checked in at the ER, and explained my pain, they said that the pain I was describing was definitely not simply an ear infection.
I sat in the waiting room, in agonizing pain. I was thankful they got me back quickly.
When I saw the doctor, he said the same thing. Not simply an ear infection. He told me by a quick glance, it seemed like a stroke, but the closer he examined, he said it seemed like bells palsy. My left side of my face was very weak. I was sure it was just because of the pain.
But then he threw other possible diagnoses my way.
He said he did not see an ear infection, but that it could be the beginning of one, and told me I could continue the medication the urgent care gave me, but he did not think it was really from an ear infection. He said bells palsy looked like the culprit, and that it might never get better.
I was shattered. How could this pain possibly never go away.
He also suggested possible Trigeminal Neuralgia, but because of my age, he said it was highly unlikely.
I thought to myself, “when has my body ever cared about statistics?”
He said to follow up with an ENT or a Neurologist, and to google the possible diagnoses.
Worst thing to ever tell a patient.
The following day I decided to schedule an appointment with a neurologist. I got an appointment for the next day.
When I went, I explained everything, and they said it was textbook Trigeminal Neuralgia. I did not want that diagnosis, especially after googling it.
I could hear them in the hallway discussing my case, and saying how they could not believe I had gone this long without medication, and how they believe the ER should have given me medication (that’s a whole other issue/topic).
Trigeminal Neuralgia is also known as the “suicide disease” because you want to die.
Which honestly was very accurate that week. There are no words to describe the pain I was in.
I was given a pamphlet on the condition, and sent home with an anticonvulsant medication, which honestly was a little scary having to add that to my collection. But I was happy. I had a diagnosis. I had a reason for the pain. We now could make it better. If you are a part of the chronic illness community, you understand how huge this is. To have a diagnosis that quickly. I felt so much relief.
I had an MRI scheduled for the end of the month, but as the days went on, I had numbness spreading throughout my body. My tongue, shoulders, legs, hands, and even my spine. The vision in my left eye was going out, and I was losing hearing in my right ear. Symptoms were progressing very quickly.
It was honestly kind of alarming, so I called the nurse and they immediately got me in for an MRI.
I was shocked by the results. It came back showing nothing affecting my Trigeminal nerves in my face. Meaning, Trigeminal Neuralgia was most likely not the correct diagnosis.
But it also showed a lesion on my brain. Which can mean many different things.
Now we have to cross out other possible diagnoses- like multiple sclerosis.
I did another MRI, and I am currently waiting on the results. I have them, but I need the nurse to explain them so I know where we go from here.
The doctor has been amazing, and they talked me through everything. We talked about possible other diagnoses, like fibromyalgia.
Knowing we might finally get to the bottom of my chronic pain makes me feel like I can finally breathe. Like I might not have to live my entire life in pain.
Although the facial pain literally has been the worst experience in my entire life, I am seeing it as possibly being a positive thing. It has led me to a great neurology group.
I have had extreme chronic leg pain since I was 14. It has gotten worse over the years, and has affected my daily life in so many ways, especially as a mom. Since starting the medication for the facial pain, the leg pain has gone away almost completely. Great news, but that also suggests it was in fact nerve damage causing it.
I cannot explain how much taking away that pain has changed my life in such a short amount of time!
I have unfortunately had to up the medication to maximum dose, and the facial pain still seeps through, but it’s manageable.
I am trying to patiently wait for the neurologist to call with my results, and if they don’t call, I’ll receive them at my follow up appointment at the end of the month, and we will discuss where to go next as far as treatment, and further testing.
Writing all this is hard, because I never want to relive that pain again. I feel stupid some days because I’m sure people think it’s just face pain. But when I say that I wanted to die, I mean it. And I have so much to live for on this Earth, but that pain made me forget all the amazing things I have to live for. It put me in a really dark place I never want to go back to.
This is why chronic illness/pain is hard. It’s hard to navigate. It’s hard to speak your real feelings. It’s hard to ask for help, because sometimes you don’t get a nice reaction from people, even doctors.
I am here to say- do not let other people downplay your pain. If you’re in pain, then you are in pain. Period.
I am so thankful I went to the urgent care, ER and then neurologist. Because after 12 YEARS, I have finally had pain free days with my legs.
I do not know if there’s nerve damage causing it all, or if I have an autoimmune condition. The next few weeks will tell. But I am thankful I listened to my body and knew something wasn’t right. I knew that the pain I was feeling could not possibly be an ear infection.
I am happy I listened to my gut. But I am also scared for what the future entails. After going through the up and down roller coasters for a diagnosis many times before, I am worried this process will not be short, or it will end with my body rejecting all treatment, like my heart has. I am terrified of the pain coming back in my face full force again. I am scared the medication will stop working. I am worried that the off and on again, full body numbness, will being sticking around. I am scared of my vision in my left eye to completely go away. I am not looking forward to the rapidly progressing symptoms.
But I am prepared. Prepared for a long journey ahead.
That’s what chronic illness prepares you for.