What the hell is trigeminal neuralgia?

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HI! I posted part of this under discussions too but I've decided to post it here too. Truth be told, I'M DESPRATE FOR ANSWERS. I'm not afraid to admit it. I'm desperate. And all wikipedia and other googling leads me too is that one line that says:

"It has been described as among the most painful conditions known to humankind"

Great. JUST F***ING GREAT.

Lemme back up a little... err....10 years even.


I'm a wife, mommy to a 3 year old girl, and a 1 year old boy, Photography lover (esp macro), animal lover, and a neurosurg RN.

It all started with some numbness/tingling/decreased sensation with intermittent twinges of pain that Iv'e had for approx 10 years. I have never made a huge stink about it so pretty much every dr I've ever had just blows it off. Then in feb 2014 I had a sinus surgery for a deviated septum. Then one month later underwent a second surgery to remove infected packing from the previous surgery. Everything was going really well on surgery day after surgery. I was getting ready to go home, they were getting ready to take my iv out when I suddenly experienced 10/10 left facial pain. (my left cheek) It was like I was being electrocuted. My doctor did a stat head CT, thinking I may have a post op hematoma. Turns out I didn't, but with my history, my ENT suspected TN and referred me to a neurologist. He also put me on neurontin, and a medrol dose pack. On monday march 17th I was at work (i work eve shift) when I had 10/10 left facial pain again. I went to the ER which lead to a 4 day hospital admission. I screamed and cried like a terrible patient nearly the whole time. I went between wishing I was dead to being convinced I was going to die from pain. I'm a nurse. I know better then to act like that but all rational thinking when straight out the window while the pain was happening. The neurologist told me it was rare for people my age to get TN without MS or a brain tumor so he did MRI's To test for both. Also, I had recently been having numbnes, tingling, and weakness to both arms. PS: an MRI During a flare up was absolutely awful. I was so lucky that the MRI said NO MS, and NO BRAIN TUMORS! Thank. God. (I do however have bulging discs from c3-c7 that do not require surgery at this time). The neurologist put me on tegratol and titrated me up to 400mg TID. They let me go home from the hospital on Thursday because my pain was doing MUCH better. I was having quite a bit of dizziness but I could tolerate that compared to the pain. On friday 3/21 I had extreme dizziness. It was so bad that I couldn't even walk without holding on to furniture and my speech was impaired. I called my neurologist who told me how to taper off of the tegratol. While I was on tegratol, I had very little pain, now that I'm off it I'm having very constant 7-8/10 pain. GREAT So, now what??

So my questions are:

[1] What can I do to have less pain??

[2] Am I doomed to just keep trying medicine after medicine to see what works and what has intolerable side effects?

[3] What surgical options are there?

Thank you so much for reading all of this! I feel lost and stranded on a desert island. Does that sound crazy?? I'd love to get to know you and navigate this TN world together. I'm sorry that any of you are dealing with this. Man you all are TOUGH!!!!

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Facebook:
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Hi,

I’m so sorry to hear that you have been diagnosed with TN and are suffering. This is a truly horrible life changing disease, but I learned that you have to take it one day at a time. I starting experiencing pain at 17 and am now 24 and those of have been some of the longest years of my life. Just last night, I work up at 3:30 am and didn’t go to bed until 7 am as I was in so much pain. Some people are blessed and find a combination of medications that work, but for me I never have. Now that you are off the Tegretol, are you starting on another medication? I am no longer on it, but I was on Lamitical and it was a game changer for me. I was on it in addition to Trileptal and Clonidine patch and was pain was 2-4 compared to 6-8 when I started the medication. That was the best pain relief since I was diagnosed. Unfortunately, I started experiencing side effects that prevented me from staying on Lamictal. When I had surgery a few years ago, the anesthesiologist recommended clonidine patch and it has really helped. Those are my two best medication recommendations. Trileptal is the sister drug to Tegretol, so people who cannot take Tegretol are able to tolerate Trileptal. Also, it just came out in extended relief. I don’t think you’re doomed to going from one medication to another, but you may have to go through multiple medications before you find one that provides relief. Many times that means a long road, but sometimes you get lucky and find one right away. I know there are many people who have success with surgery, but I cannot tolerate anesthesia and have a really bad reaction to a nerve block, so surgery isn’t in my near future.

If you ever need anyone to talk, just message me. I just sent you a friend request.

Have a good week

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Megan, such a sad and very personal tale. I couldn’t stop reading it, even though I could figure out what was next :frowning:

First I want to implore you to purchase Stricking Back from the Facial Pain Association’s website. This book at a lot of information you need right now, and as a nurse will appreciate.
Medication alternatives, all of the surgery types detailed, etc. it is the facial pain bible and well worth the donation.

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Sorry for my typos hon. It’s 2am, I’m tired, and yes painful today, was all day yesterday and my iPhone really sticks for viewing and posting on these boards :(. ( is there a mobile app that anyone is aware of?) Anyway, above all Megan it looks like you really need some people that understand; You have found those people, that group. We totally understand unfortunately. All kinds of people are stricken with this disease. I was a lead security supervisor at a nuclear power generating station. Professional, highly trained and educated. My back took my job from me, TN took my life :frowning:

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Megan I am also a photography bug :slight_smile: I absolutely love macro as well but admit I haven’t taken many macro shots. I especially love macro of flowers, just beautiful. I have an online album I could share if you’re interested in looking ( it does not have all of my best stuff) Depression has really taken my joy of hobbies from me as well. Maybe we could both work at that together? :slight_smile:

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Find a good neurosurgeon there are options. Ballon decompression burning the nerve in some cases surgery although from what you’ve said that may not be an option for you. I haven’t read the book Cherri is talking about but I’m going to try and find it as I’m starting to have my TN increase again and I would love to read something that’s helpful. Also different meds are available or a combination of them. I’ve found gabapentin is the best so far but have, at my worst pain, been on tegretol and clomezapam as well as gabapentin on daily doses. You need to find what works for you also you may have different meds available to you in your country. Take care of yourself.