Thursday, August 17, 2017

ER Update

I live my life with pain. That's just how it is. I've learned to deal with it and sometimes it's unbearable but I always make it through. I've learned what my pain means and I accept it completely but sometimes I experience a new kind of pain and it scares me. I can do the same old pain day after day but when it's something new it takes me by surprise and makes me really nervous.

On Monday morning I was struck with a pain so intense and violent I actually screamed out loud. I was in the produce department at my local grocery store and it terrified me. It came out of nowhere and I didn't know what to do. It was in my head but it wasn't a migraine or a headache or something that I could understand. I went about my day with it continuing every 5 to 10 minutes. I thought it was just something new that I would have to get used it. When I got home I took a Percocet and tried to rest but it didn't help. The pain continued and it just kept getting worse and worse.

I actually told Hunter goodbye that night and I left my parents a note telling them how much I love them. I was so scared. I thought my brain was bleeding or that I was about to die at any moment. The pain didn't stop. It was still there in the morning when I woke up. I was still alive so I figured I could just deal with it. If it didn't kill me I could recover from it. I've never known when the pain is enough to make me go to the ER. I have pain every single day of my life so what makes it bad enough or different enough to warrant a trip to the hospital? Well, I actually turned to Dr. Google for the answer. Don't ever google head pain. Trust me. It will make you think you're dying. Although, I guess since I already thought I was dying it just confirmed my fears. I was so scared I decided to go.

You guys know what a big deal going to the doctor or the hospital is for me. My anxiety is such an immense force in my life that it prevents me from doing a lot of things but as scared as I was, I did it. I had to wait in the waiting room for over 2 hours and they took everyone else before me, even the ones that had just arrived. That just reaffirmed my fears of medical professionals not believing me. I've had so many bad experiences with doctors and that just made me feel all of those horrible emotions again. However, when I finally got called back I was pleasantly surprised with my doctor. The nurse was also really concerned and was very kind.

The doctor was a young woman who sat beside me and really talked to me about my medical history and what was going on. She apologized for my pain several times and was very gentle. She diagnosed me so quickly and gave me meds to help. She diagnosed me with Trigeminal Neuralgia, which makes so much sense. She also talked to me a bit about my previous diagnoses and my likely MS.

I was scared and anxious but I did it. I got help and I now have another diagnosis to add to my pile, and it's one that actually explains a lot of other things. It's best described as a chronic pain condition affecting the trigeminal nerve in the face and head. On paper it doesn't sound that bad but it's actually known as the Suicide Disease because it's the worst pain known to man. I'm not sure how they can say that because any pain is bad pain.

I've always had a lot of face and head pain, all on the right side, but I always attributed it to migraine. I do still have migraines but now I know this pain isn't just a prodrome.

You guys, I think this pain is what my lightning bolt attacks are. How amazing is it that I finally have an answer? It's a relief knowing this. I have a newfound sense of peace. It still hurts like crazy but knowing what it is makes me feel so much better.

Funny enough, TN is often an early sign of MS. I guess I'm getting that much closer to a diagnosis for that as well. I was hoping it would show up in my scans but I only had a CT so it wouldn't have shown up anyway.

I'll actually be seeing a doctor very soon. I have an ER follow up tomorrow and then I'll be seeing my new doctor soon. I already have a new primary care physician, who is also my Dad's and my parents both adore her, and I feel so proud of myself for being on this path now. I feel like I've done something I didn't think I could do. I know it sounds silly but if you've been following my blog for any length of time you know how difficult all of this is for me.

I started a new medication yesterday. I'm not sure I like it but I'll be patient and give it more time before I made a real judgment about it.

This website has a lot of great information about TN if you're curious.

I'm feeling hopeful. And I'm so happy about it. I'll update again soon with more.


  1. I feel so happy for you the you are close to getting a diagnosis <3 I know it sounds weird but finally putting a name on wht is troubling you is such a relief ! I know hoe you feel as I have been there
    A famous actor here called Salman Kahn also has TN & so I know a bit abt it
    Wish your pain subsides
    Keep us posted abt how things turn out
    Will pray for you <3

    1. Thank you so much, Jayanthi. I want you to know that I appreciate your comments and kind words so much. Every time I get a notice that you've commented I get so excited because you're so nice and I am just so thankful that you follow my story.

      Thank you for telling me about Salman Kahn. I always think it's nice to hear about people who are successful sharing the same disease that you do. Even though I would never wish for anyone else to be sick.

      I will definitely keep you posted. Thank you, again!

  2. I do hope the medication works for you and you will be feeling better. Best wishes to you.
    twinkle at optonline dot net

    1. Thank you very much, Maryann. I appreciate it!

  3. Sounds rough! I'm also not a big fan of doctors -- good for you for persevering all the same. I hope things will turn around quickly with the new medication!❤