TRIGEMINAL WHAT? IT CAN’T BE THAT BAD…..OH.

Well, I went to the emergency room earlier tonight to get to the bottom of some pretty intense stabbing pain in my ear that I’ve been feeling the last couple weeks. I thought it would go away but then my face and scalp started to hurt, on the right side of my head, the same side as the hurting ear. So I thought that was weird. So I went to St. Luke’s and they checked me out. All I can say is, dear Lord, please don’t let the doctor’s diagnosis be true.

Trigeminal Neuralgia

He said I could have a disease called Trigeminal Neuralgia. Turns out this disease is rare. Never thought I’d be diagnosed with a rare disease! I asked him if this could lead to nerve damage or something and he said – quote, “No. What it leads to is debilitating pain.” Wow, thanks doc. I thought that was a bit intense. Turns out he wasn’t telling me the half of it.

I came home and researched this disease. Just start praying for me now. Just kidding. I actually don’t really think I have this, mostly because Bob Powers, who kindly came with me, told me he didn’t think I had it. After reading the description of the disease, I will gladly believe anyone who tells me that I don’t have it, even if they are not a doctor, simply because I want to believe it so badly.

Here are some of the more choice quotes that I found…

TN (Trigeminal Neuralgia) is a pain that is described as among the most acute known to mankind. TN produces excruciating, lightning strikes of facial pain , typically near the nose, lips, eyes or ears. (This is the first sentence I read. My jaw dropped.)

TN is a disorder of the fifth cranial nerve that causes episodes of intense, stabbing, electric shock-like pain in the areas of the face. By many, it’s called the “suicide disease”. (Oh, that’s comforting. So, it probably won’t be that bad, eh?)

Something as simple and routine as brushing the teeth, putting on makeup or even a slight breeze can trigger an attack, resulting in sheer agony for the individual. (I don’t think I’ve ever read ‘sheer agony’ on a medical website before. Other sites include ‘eating, drinking, talking, or being exposed to the wind’ as possible triggers for an attack. Why don’t they just say ‘living’ could cause an attack?)

Trigeminal neuralgia (TN) is not fatal, but it is universally considered to be the most painful affliction known to medical practice. (Don’t worry, it’s not fatal! You will live a long life of continous, tortuous pain that will never kill you! Yay!)

Trigeminal neuralgia (TN), also called tic douloureux, is a chronic pain condition that causes extreme, sporadic, sudden burning or shock-like face pain that lasts anywhere from a few seconds to as long as 2 minutes per episode. The intensity of pain can be physically and mentally incapacitating. (most likely emotionally incapacitating as well.)

…successive recurrences may incapacitate the patient. Due to the intensity of the pain, even the fear of an impending attack may prevent activity. (The fear of the fear is bad enough.)

Unfortunately, over time the pain of Trigeminal Neuralgia usually becomes more severe and more frequent, requiring higher dosage and more continuous use of medications. As a result, many patients whose pain was initially well controlled with medication find over time that they must increase to toxic levels in order to control their pain. At this point, unless they are willing to exist with the pain or in a toxic state, they require surgical intervention. (Hmmmm. Most acute pain known to man, or toxic state, most acute pain known to man, or toxic state. I just can’t pick.)

Trigeminal Neuralgia (TN), also known as Tic Douloureux, is considered by many to be the “most terrible pain known to man.”

People who have experienced severe trigeminal neuralgia have described the pain as:

    Lightning-like or electric-shock-like
    Shooting
    Jabbing
    Like having live wires in your face
    (What in the world? This is just wrong.)

This isn’t Going to Work

Now, I have always had an extremely low tolerance for pain. Like, ridiculously, pathetically low. One time when I was younger, but still too old to pull off such behavior, I started yelling and kicking and punching my nurse when she tried to give me a booster shot. Two other nurses had to come and help the first nurse administer the shot. I don’t know what happened – I just snapped. It was like a gut reaction when she came at me with that needle.

Another time, I had to give a blood sample – just a tiny little vial full – and afterwards I drank my little cup of orange juice, trying to think happy thoughts, then got up, walked to the bathroom and passed out. It was too much for me to handle, and it was all in my head.

So, if this is true, it couldn’t have happened to a worse candidate. Although, obviously, there is no good candidate for eduring the worst pain known to mankind. Except maybe Jack Bauer. Or Chuck Norris. Or possibly David Hasselhoff. Oh, God, please don’t let this be true. I might pass out just thinking about the possibility of having TN. The Doc told me to take Ibuprofen for a week to see if that helps. If the Ibuprofen helps, then it’s not TN. If it doesn’t help, then the possibility of it being TN is higher.

So here’s to hoping the Ibuprofen helps!

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  1. May the Lord bless your body and be with you… and Lord, let the doctor be wrong.

    I’ll be praying for you, Ms. Mosack. The Lord is good, and mighty to save those who call on his name…

  2. “No. What it leads to is debilitating pain.”

    Way to break the news easy doc.

    Take from someone who has received a bad diagnosis in the past- get at least two more opinions. And make sure they aren’t emergency room doctors.

  3. jennerith

    Molly- I was once misdiagnosed with, of all things, a particularly atrocious STD. This particular one causes inoperable scarring of the reproductive system, pain, and other general awfulness. Turns out, after 3 very intrusive exams and the most painful shot I’ve ever had (and in my toosh no less), the doctors were completely and utterly wrong. I’d never had it. They’d misdiagnosed me after mixing my lab tests up with someone elses.
    I am praying for you right now, for either the doctor to have been totally wrong and it to be something easy to fix, or the God who heals to heal you completely as a testimony of his goodness. I love you! I’ll put you on my ‘speed walk at lunch’ intercession list!

  4. jennerith

    and always with something like this, get a second opinion from a specialist. I mean, I love E.R. people, but the last three times I’ve gone, they’ve handed me Vicodin and sent me home. Oh and by the way, it says RIGHT ON MY CHARTS that I am allergic to narcotics, including, especially vicodin.

  5. Molly,
    A “Diagnosis” is merely a man’s words spoken over a human body. You put that diagnosis away and remember WHO created you and WHO planned your life.
    You do not have this disease. Jesus died for every disease known to man.
    I encourage you to surround yourself with truth today and break off all curses spoken over your body in that ER!
    I’m praying for you!

  6. Mrs. I

    Molly, in Jesus’ mighty name, we bind the diagnosis that has been spoken over you. We speak and claim healing and health over your body and your life.

    Praying for you!

    P.S. A 2nd opinion is definitely in order!!

  7. Molly Mo,

    Four Words: Healing Jesus, Healing Rooms!Get in there fast! Repeat as often as necessary for relief of immediate symptoms and total healing of condition.

    Have a healing party…invite your friends over to fast and pray for you. They should fast first and pray and worship over you. Zachary, Sasha, Yvette, and ChriS will be praying for you!

    They shall lay hands upon Molly and she will recover!

  8. I ditto ChriS. Go to the healing rooms.

  9. jennerith

    I think blogging prayer buddies are awesome. I am sitting at work, so glad I am a part of this little community…

  10. Whew. I’ll be praying. And I’m with everyone who says to get over to the healing rooms!

  11. Praying for you, Molly … and I agree, get a second and third opinion not from an ER doc, and go to the healing rooms. And stand up every single freaking time the prayer leader announces ministry time.

  12. I will be praying for you, too. I feel for the emotional things you’re going through right now as well as the physical. I was diagnosed with fibromyalgia 14 years ago, and the medical opinion of “Don’t worry, it won’t kill you!” was NOT comforting! Everyone I’ve talked to that has gotten the same diagnosis says they felt the same way: The good news is, it won’t kill you. The bad news is, it won’t kill you.

    I’ll add my vote for the prescriptions others have posted: second (third and fourth, if need be) opinion, prayer rooms, ministry time. When you go for a second opinion, I wouldn’t start by telling them what the first diagnosis was. Sometimes that gets the doctor set up to believe that rather than looking at other possiblities (I had it happen last year and spent two more months dealing with something that was easily treatable.)

    I’m praying!

  13. Everyone – Thanks so much for your prayers and advice. I really don’t think I have this because the symptoms are not exactly the same and it’s such a rare disease. All the doctor did was look in my ear with that little thing, feel my face and head, and ask me a bunch of questions. So I didn’t feel like it was a very exhausitive search. Plus, I know a diagnosis is just an opinion. I’m not overly worried about this. The stuff I researched on it was just too much – it was so incredible that I wanted to share it. I couldn’t believe the doctor would say I might have something like this!

    I’m going to get a second opinion and thanks, Dorean, for the advice to not tell the doctor about the first diagnosis. I had thought about that and decided it wouldn’t be a good idea, so I appreciate that.

    And as long as the pain remains, I’ll be getting prayer for healing. Thanks again, all – I wasn’t expecting you all to take this so seriously, but I appreciate feeling loved! 🙂

  14. That is an insanely crazy disease. I’m with Tracie. The Lord’s report is true. Therefore, anything else is not. And I’m with Chris and everyone else about the healing rooms and stuff. Wow. You have way more than ‘two or three’ …

  15. Yes, praying for you as well!

    Even if you don’t have it, it’s always great to receive prayer huh?!

    Keep us updated on how you’re doing!

  16. Robin – thanks!

    Ruth – Absolutely! I totally appreciate it. This kind of concern and support is rare and I’m blessed to be surrounded by people who care. I will keep you updated!

  17. Again, I agree. Even if you don’t have this disease, you have SOMETHING causing you some intense pain. So, I’ll just keep praying for that (whatever it may be).

  18. Steven Chudy

    Mol,

    I am also praying for you dear.

  19. standonthewall

    Nope. You don’t have this disease because Jesus is not gonna let you have it!

    I’m praying for you Molly!!!

  20. kylegebhart

    we need to pray for the people who DO have this disease. talk about misery…they really call it the ‘suicide disease?’

  21. I know…actually, I have been praying for them ever since I read about it…I can’t believe that people actually go through this. Yes, they really call it the “suicide disease.” I will think about these people whenever I think I have a “problem.”

  22. I think facial pain is hilarious, it reminds me of my hockey days when I would start fights with the big fat stupid defensemen who was always three times my size. My coach would always say, “its not the size of the dog in the fight but its the size of the FIGHT in the dog!” This always motivated me to cause facial pain disease on hockey players. I have a facial pain scar on my chin, if you walk up to me and look really close you can see it, but you will have to get past my facial hair( or whatever you call it).

    May the Lord bless all the people who actually have TN( Totally Nuclear). That is my name for this disease and I Kyle just told me to stop making such a long comment cuz he’s sitting next to me and is annoyed that I am writing so much but I don’t really care CUZ its been a long while since I’ve commented on this blog.

    much love Molly Mo,
    Jared Diehl(Silverfox)

  23. Molly–

    My brother-in-law, who IS a doctor, told me that the first rule of diagnosing a patient is this:

    If you hear hoof beats, think horses, not zebras.

    The point is, that if you encounter a symptom, you begin by treating the most common and prosaic illness; you don’t immediately leap to the most exotic disease in the medical book.

    Sounds like the ER violated rule number one.

  24. Jared – nice. 🙂

    Bret – apparently there was nothing else he could match my symptoms with…

  25. Sam

    My mum hd it… It really upset me she woulnt talk to me sometimes… it hought Id done something wrong im only 12 now… she died last year

  26. Sam

    Apoligies for the typos

  27. Sam, I am so sorry about that. What a courageous woman she must’ve been. You must have had to have been strong a lot too – my heart goes out to you. God bless you.

  28. I had TN seven years and was healed through faith in God and prayer. God bless you.




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