First blog

Hi to all!

Let me settle in for the short version of my TN story. In 2006 I began experiencing an odd sensation of heat in my left face. Sometimes it would seem like the liquid in my eye was hot or like my left nostril was blowing out hot air. I am a dragon, rawr! Ok half a dragon. I ignored it for the most part. At a routine visit I mentioned to my primary care and he immediately told me that was TN. I went home and looked it up and thought “no way”. I was sent for an MRI to rule out an Acoustic Neuroma as I have hearing loss as well. My MRI was beautiful.

The next few years I experienced the heat sensation more and more often and occasional numbness and tingling was added. Still not a big deal, odd, but not painful. I got a little scared when I started getting the tingling and numbness on the right side. I have fibromyalgia and was worried when I started getting nerve pain in my limbs. Another MRI was done in November of 2010 to check for MS. Once again, my brain is gorgeous.

Then the real trouble began. After several years with no dental insurance, I was able to go for a cleaning and found out I had 10 cavities. That is not sexy, people. I had no affects from the dental cleaning or x-rays. I also had to have a biopsy to remove a strange thing from above my left eyebrow to check for skin cancer. I had a cavity filled on Tuesday and the biopsy taken on Friday. The following Tuesday I experienced the beginnings of real pain. Hot, shockwave pain in my left cheekbone. The corner of my bottom left lip as well as the left side of my tongue were going numb. I got truly scared.

I won’t go into the frustration with my primary care doc, but I had to FIND the medications I could take and that were covered by insurance for her. She put me on 7 days of Prednisone and Lyrica. I was high as a kite for two days, but then had 2 pain free days. Lyrica is the bomb! I would tell anyone who would sit still. By the third day the left side facial pain was back. Bummer. I had 9 days of horror and hell. Pain every few minutes. I know y’all understand. I finally got into the Neurologist last week and began taking Tegretol on Thursday.

Friday I noticed swelling in my feet, not that uncommon when the weather is hot. By Saturday morning my face and hands were swollen and I was short of breath. Dang it! I was sent to the ER (3rd time in 2 weeks) and was checked for all kinds of unnecessary things. Just give me a lasix or something, why do I need a chest CT?? More sighing.

I am on my 3rd round of steroids and taking Lyrica, Paxil, Trazadone, Ibuprofen, Flexeril, and Tagemet.

So today, I am sitting waiting for 8am when the Neurologist office opens to find out what to do next. While writing this I had 7 attacks. The kind that make you grimace and contort your neck and perhaps growl like an animal.

Or wait, is that just me?

The paxil is newish to me, about three months.

You have no idea how much I appreciate the input. I am actually not taking the tegretol anymore. I plan to blog about my interesting day and the new drugs they are trying later tonight.

Although not all of the features of your pain track unambiguously to trigeminal neuralgia or neuropathic pain, several of them do pretty well match up.

I'm amazed that anybody with real neurology knowledge wouldn't at least try Tegretol, Oxcarbamazepine, or Neurontin, in about that order. Flexeril is a muscle relaxant. Tagamet is normally used to treat for ulcers. Ibuprofen is a basic anti-inflammatory that almost never works on face pain of neuropathic origin. Paxil is an anti-depressant and suppressant for panic attacks. Trazedone is another anti-depressant.

What the SAM HILL were these people thinking? The short of breath thing could actually have been a reaction to steroids , I suspect. If the neurologist doesn't immediately talk to you about facial neuropathic pain and trigeminal neuralgia, then you may need to talk with somebody who has more current or deeper training.

Come back and talk to us about your latest treatment plan...

Regards and best,

Red Lawhern, ph.D.
LwTN Research Analyst

Hola Moberrios,

When I was first examined by the neurologist, I was prescribed Tegretol. By the next day, I had a 104 degree temperature and a total body rash. Then, we tried lamectil/gabapentin ( neurontin). That has worked very well for me. " different strokes for different folks" So keep searching..

Sorry for the confusion with my meds. Not all of those were prescribed for the TN. I have fibromyalgia so the ibuprofen and flexeril are foe that. I take the paxil and trazadone are for depression. The tagemet is because I am on my 3rd round of prednisone for the TN flare up. My primary care doc gave me the Lyrica for the TN and the neurologist is keeping me on it because it is helping with the fibromyalgia.

The neurologist ( who I have been seeing for a week now) had me go in to outpatient care yesterday for a Dilantin infusion which has drastically reduced the shocks and has helped some with the numbness and tingling. She stopped the tegretol and put me on trileptol and baclofen. I am feeling at least 50% better already. Thanks so much for all the input!! It helps so much to know you guys are sharing your valuable experience with me!

Thanks for the update, moberrios. It helps to get the context accurately. Glad you're having some improvement in pain.

Regards, Red

The numbness in my lip and tongue is intermittent and is still occurring.

Thanks for the input. I actually had the numbness in my lip and tongue before my dental visit as well as the tingling and numbness across my cheekbone. I DO feel like the dental injection of anesthetic aggravated it. It was the farthest back tooth on my lower right side.

I have been on some form of SSRI for about ten years for depression. The Trazadone was added in the last year for sleep problems. I am hoping to remove that from my med list soon. With the addition of all the new meds for the TN, I am feeling like I am taking WAY too much and want to pare down into a more manageable regimen to reduce side effects as much as possible.

I can honestly say that I have searched my memory for a trigger of the earlier heat sensations, but can find none. At the time, it seems like such a small thing that I also didn't try to link up an event with the beginnings of the heat. My skin cancer biopsy was negative! Great news in an otherwise crazy month.

I truly thought I had MS for quite some time. I thought many of my fibromyalgia pains, muscle weakness, and shock pains in my body could be attributed to that. I also have hearing loss in both ears. The sudden onset of the truly painful shock pains of TN really had me thinking. But, my MRI shows no lesions.

I often wonder why I have so many things wrong with me. Are they all from one cause? Am I just built wrong? Am I a hypochondriac? It's really frustrating to feel this way when all I want to do is enjoy my life watching my sons grow up.

Moberrios, it is frequently the case that MRI doesn't reveal lesions or nerve compressions. But that cannot eliminate typical or atypical trigeminal neuralgia as a diagnosis. If somebody told you that it does, then they were wrong and need retraining in neurology.

Go in Peace and Power