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Any Atypical Trigeminal Neuralgia out there?

Aug 17, 2017 11:21 PM

Hi, I'm new, I'm 26 and I am wondering if there are any of you who can share my expierience.

My "big one" is Atypical Trigeminal Neuralgia. I've had ATN for almost 3 years now. I have had roughly 10 days in 3 years were there was no crushing, aching, or burnt pain in my left mouth/face and the drug side effects were so bad on those days I still couldn't enjoy it.
I've never met anyone else with ATN or TN in person and I've only talked with 3 people online who had ATN. I'm curious to see if I am not alone I guess.

Don't feel put off if you have other chronic pain, I would still love to chat with you too. There are plenty of experiences and frustrations I know we all share.

In addition to ATN I have a 12 year history of Kindey stones (about 1 every 2 years if you average it.) and a variety of digestive problems, top to bottom. I deal with my face pain by painting it where it hurts, I don't really have touch triggers, so I can get away with it. You can see my face paintings on my blog. Maskingthepain.WordPress.com (I think that is the link I just changed the host so sorry if it doesn't work.)

Beyond my pain, I am a newly wed wife. We are coming up on our first aniversery this fall. I like to do art, but I don't have as much energy for it as I used to. I am currently working part time because full time is too much physically. My career plans were for Museum Exhibit designer/creator and I spent 2 years doing that before my health tore my life apart. I do like the life I've built back up but I miss working a fullfilling job I loved. We are moving into a house and I am praying I am healthy enough to finish the renovations before we move.

I am not a big beliver in naturopathic or typical medicine, you could say I've been let down a few too many times all around and developed some cynical attitudes. But I would rather live now with what pittiful medical knowledge we do have than in the past when my health would have killed me long before adulthood.

I'm glad to join the community.

Aug 18, 2017 6:23 AM

Hi 👋🏼 Welcome to the community! I don't have ATN but I know some people on here do, I have fibromyalgia and M.E and other things that I'm getting tested for so I know how you feel. If you ever want to have a chat about anything message me 😊 I love your face paintings!!

Aug 18, 2017 8:07 AM

Welcome to the community. I have fibro, osteoarthritis, among other related things. We are all supportive so ask questions, rant or whatever you want.

Aug 18, 2017 10:12 PM

Thanks, it's always good to have a place to vent, cry, or celebrate with people who understand.

Aug 18, 2017 10:24 PM

Hi Maskingthepain, what's the difference between atypical TN and TN?
I've had TN for 2 years now and in a flare it's still the worse pain I have over my fibro any day!!!
I've had 4 days where I was completely TN pain free and that was after getting a tattoo on my neck, on the left side which is the same side as my TN pain.
I have the pain in all 3 branches of the trigeminal nerve.....from my left ear to my chin, across my left cheek and left ear to just above and behind my left eye.

Aug 18, 2017 11:22 PM

Oh no way! I just went to ER because I thought I was having a stroke and was diagnosed yesterday with this...

Aug 18, 2017 11:24 PM

Sezzy, exactly how I described it to doctor...so what do you do for this?

Aug 18, 2017 11:47 PM

This is the reason I'm on 110mg of amitriptyline and now after reducing my slow release morphine I'm on 10mg am & 15mg pm and I'm also on duloxitine 90mg (this was prescribed for depression as nothing else worked and my Dr said it could also help the fibro pain. If the pain is really bad I have lidocaine plasters which I put on my check to numb most of it. I wear it for 12 hours in the day and it makes the pain just about bearable.
I tried all the nerve pain meds like carbamezapine, pregabline and gabapentine but they made me sooooooo tired that I became more stressed which made the pain worse!!!
I still struggle a lot with the pain especially as I've had to reduce the morphine but I cope a lot better with it now as things like reiki helps relax me, adult colouring also distracts my mind from over thinking, I have one of them microwave bean bag things which also helps the side of my face and my neck from being tense with the pain all the time

Aug 19, 2017 10:36 AM

Has it ever effected your vision?

Aug 19, 2017 10:57 AM

@Maskingthepain.. welcome to our group. I am sorry to hear that your pain started up again. I pray your pain eases up for you soon .

Aug 19, 2017 1:07 PM

@sezzy the generally recognized difference between TN and ATN is in the type, frequency and triggers for pain. Regular TN is described as a "zapping" or Shock pain that is horrible but comes and goes in attacks. Usually linked to physical trigers like touch or eating. ATN is constant. There are no attacks and it doesn't zap, it just is aching crushing or burning 24/7. Also, the antisezure druggs like gabbapentin and others tend to work better on TN and the antidepressants like nortriptyline tend to work better for ATN. When I first got diagnosed doctors kept asking me about my "shocks" and "triggers" which I don't have. For a few weeks I was thinking I had another wrong diagnosis until I started doing some research and learned about ATN, which fits me perfectly. It took 3 doctors before I found a neurologist who knew about ATN and I am her only ATN patient. It is also possible to have both types of TN together, which just sounds double misserable.

Aug 19, 2017 1:17 PM

@spunky I've never had my vision effected, but my pain doesn't happen in my top nerve branch, just the lower 2. I've never heard of vision problems linked to TN but that doesn't mean it isn't possible. My understanding is that some people get cluster headaches (like a migrane in your face) and that can cause vision problems. Thoes headaches could be hard to diagnose if you do have TN as that area already hurts. Not being a doctor I can only really speak to my personal experience.

Aug 19, 2017 11:41 PM

Maskingthepain thank you for explaining, by the sound of it I have both kinds then because my pain is both as you explained and yes it can be doubly miserable!!!!

Aug 21, 2017 1:02 PM

Sorry to hear that, if you want a TN specific support group, and more information on it Livingwithfacialpain.com has a pretty good community and a lot of good information about the disease. It helped me a lot when I first started this mess.

Sep 05, 2017 9:16 PM

Hi, I was just diagnosed with it today. My doctor started me on Neurotin 100mg once daily and Baclofen 10mg 3 times daily. I have epilepsy and currently take Keppra so I'm not a candidate for many other treatments. I'm currently awaiting a neurology appointment. I hope you're doing well and are somewhat pain free today!

Sep 05, 2017 11:36 PM

Thanks TaylorNB, sorry you get to join the club. My pain is about 85% managed these days, so even though I hurt most the time, it is at a pretty low level more often than not. I've learned to ignore it mostly but it still makes me tired and grumpy easily. I probably only get bad pain days once a week on average, and even those are maybe 75% of what it was untreated. I pray I never build up a tolerance to the meds I am on. I had to try almost every medication for TN and it took 3 years to find ones that don't debilitate with side effects. I don't have any good options if these ones quit on me. I hope you find a drug cocktail that works for you faster than I did! Good luck and I'm happy to chat if you ever need to. :)

Mar 01, 2018 11:16 PM

I have both ATN with the attacks. I have MS and it seems to be common in people with MS. For me the constant pain isn’t that bad, it is an aching burning in my upper right jaw. But, then about 100x a day I get a stabbing pain that feels like someone is taking a burning screwdriver and pushing it deeper and deeper into my gums, sometimes multiple screwdrivers. The attacks last about three minutes.

My only triggers are talking which is hard with a 7 year old. It’s only been 4 months since I’ve had this but I can’t leave my houses except to go to doctors appointments, I can’t talk for very long, I don’t have people over. Sometimes the pain has gotten so bad, I just don’t know how I’m going to continue.

I miss life. I miss taking my daughter to the park and having play dates and going out with friends and volunteering- it’s changed everything.

I’m having my second and third trigeminal nerve block in a couple weeks. My pain doctor wants to do them right next to each other. But he told me today if it doesn’t work he thinks I should do the MVD surgery and I’m just not ready for that.

I know this post is old, but I found it and when I saw someone ask for a person with both atypical and typical I had to respond. Sorry it’s very late and I had a stellate ganglion block today so I pretty worn out so I apologize if it’s a little unclear.

Sorry to all my fellow TN sufferers, what can I say, it sucks.

Mar 05, 2018 6:17 PM

Hi darling! Welcome to the community, I really love you art. As a creative person myself I find it really inspiring.

I have fibromyalgia and I haven't been diagnosed with ATN or tengo but the pain in both sides is a constant, sometimes as part of the overall pain and some others by itself, but I believe most of the time is due to the tension I have by trying to stand the pain. I feel is such a shame that so many women are going through all this...

Someone sent me once a documentary about a girl with ATN or TN, not sure which one, she even had like 3 surgeries and she decided to try cannabis derived analgesics. She explained on camera the effects and how they helped...I don't know, I cannot try due to my medication but is worth at least to see it, maybe one day new products come to the market. Hugs

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