Tuesday, 26 April 2016

Trigeminal Neuralgia Hell.

Unfortunately, I have no good news. I have seen both my Neurosurgeon and Radiologist in the past couple of weeks, and more radiation off the table. My Neurosurgeon was so nice. He is a gentleman and he was completely straight with me. No bullshit. He told me that I may never find any solutions, and I have to make peace with that. I couldn't be angry with him, because I could see the empathy and sincerity on his face. I guess a successful treatment is not in my immediate future. 

I was very deflated coming home from the hospital. A small part of me hoped that my doctors were going to come up with something that will definitely help me. Trigeminal Neuralgia is hell, and it is so tricky to treat. It could take years!! 

At the moment, my pain is off the charts. My left side is between 8-10/10 and my right is between 6-9/10. Both sides are constantly painful, but the pain is more intense in my left side. It is unnerving how painful the right side has become since Christmas. It is slowly getting worse and worse. It is so hard to cope now. 

Simple activities that most people take for granted is virtual impossible for me now. I hate brushing my hair, washing my face and cleaning my teeth. It leaves me with intense zaps and burning pain, and sometimes it makes me cry. Imagine the tears falling down your face when you have TN. It is like acid trickling down your face with constant stabbing pain. It sucks.

The weather is great now, except for the fecking wind. The sun shines, although it's still cold. I could cope with that, wrapping myself up like an onion. The wind is a no go. I can't go outside, and if I do it's just inviting a 10/10 pain level for a day or two. 

My mood has been dark, there are other factors that are contributing to my well-being too, and I can tell you, I am at breaking point. Trying to keep a smile on my face for those around me is exhausting, and I just can't do it anymore. I have a great circle of people around me who try their best to understand. They don't, and it's not their fault, so I don't blame them. I am encouraged to get out and about, as if that will make a difference. 

When you have serious pain, especially Trigeminal Neuralgia pain, there is nothing anyone can do to make it better. That must be so upsetting and frustrating to our families and friends. 

I am also slowly coming off Tegretol. My Pain Specialist wants me to come off it and start on another drug. I reckon that my pain is so much worse lately due to the Tegretol leaving my system. I am going to my GP, and I will tell him I am going back onto my regular dose of Tegretol. I have called and emailed my Pain Specialist's office, asking for a cancellation. 

So much is happening now, and most of it just sucks. We have to keep going though. Don't we? 



11 comments:

  1. I'm so sorry you're in pain and despair! Can I ask why you're being taken off Tegretol? Has it become less effective for you? That is my fear. I've been taking it for a few years now and it works wonders for my pain, but I still have daily breakthrough pain.

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    1. Hi Krista, My pain specialist is weaning me off tegretol, as it seems to be doing little, if anything for my pain. I am on a huge dose of it, so it can't be increased anymore. I am also on gabapentin, baclofen, and amytriptaline. I also take oxynorm when my pain is unbearable. As my pain levels are slowly increasing, he wants to try me on some other medications. I am so glad that tegretol is helping you. If it stops being effective, ask your doctors to increase it. From all that I have researched, there are dozens of different medications that can be prescribed to tackle trigeminal neuralgia.

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  2. I'm so sorry you are dealing with this. My left side is my bad side too, but for the last 3-4 months I have been getting twinges on the right side. I tried to explain it away, telling myself it was probably just muscle tension, or whatever, because of the pain on the left, but this last week it has moved into my teeth, and is undeniably similar to the left pain. I am terrified. For nearly two years I have been eating and drinking using the right side of my mouth to protect the left from temperature changes. If I loose this one thing that makes eating bearable I don't know what I will do.
    I don't dare tell my doctors, I don't trust them. No doctor I have met, here in the US, knows anything significant about this disease, and I have seen MANY doctors. The general belief is that TN only happens on one side. I don't think my sanity can take one more doctor suggesting that I am making things up, or lying to get drugs. WHO IN THEIR RIGHT MIND WOULD WANT TO BE ON THESE DRUGS IF THEY DIDN'T HAVE A REAL PROBLEM. The side effects suck and they are not always cheap. Any way, sorry to loose it here, I didn't realize how freaked out I was by this until I started writing. I wish you the best!
    -Erika

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    1. Erika, I live in the US (North Carolina). Dr. Liedtke at Duke is great. While he hasn't been able to "fix" me, I would recommend him!! Kimberly

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  3. What ever you do, do not do the Gamma Knife. It will leave you permanetly damaged.
    Go for an MVD with a good Dr. Do lots of checking to find the right one.

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    1. I had an MVD, never was "pain free" and now I have TN2 and Anesthesia Dolorosa 🤕

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  4. My neurologist prescribe me the lidocaine nose spray that is supposed numb your cheek, ive yet to use it but thought i would pass that along to you

    *hoping for some pain free days for you*

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