Hi! I’m a 35 yr old Mom from Oklahoma. I’m the CEO of a busy health center focused on the care of the uninsured and under-insured.
My experience with facial pain has been a very sudden onset. I’m currently being treated for lupus and dermatomyositis and take Methotrexate, prednisone and plaqunil to keep my disease in check. Late last week I began to have extreme and electirifying pain on the right side of my face. Given my medications and other dx’s I assumed the pain was a result of these ailments and did my best to just try to tolerate it in hopes it would resolve. On Thursday evening my pain was to the point that I couldn’t keep from crying and I was getting no relief so I called and left a message at my Rheumatologist’s Office. Fearing I wouldn’t hear back from them on Friday I went ahead and saw the MD at our offices. Within minutes of me explaining my pain and after an exam our physician said he felt like it was TN and took some time to explain the issue and the treatments. Ironically right as I walked out of the exam room my rheumy’s Office called and asked me a very similar line of questions and said she believed from the message I left what I was describing was TN. I’ve been started on baclofen and although it’s very early I’ve seen some relief from what had become a vicious cycle of pain. I’m very new to this, and after a post on FB I found another friend of mine also sufffers from TN and she suggested I join this community. I’m so sorry that you all have to suffer with this and I’m hopeful one day there will be a cure. After only a week I can understand why this condition earned its nickname.
bless you for your avocation!
it’s a long bumpy ride with this whole TN business, and you’ll get frustrated trying to find medication mixes that will help. I have found that people here are helpful reflecting on their own experiences and being a cheering section when you need it.
my recipe is a muscle relaxer, an anti-convulsant, gabapentin, and experimentation with a prescription compound pharmacy lidocaine spray.
I’d recommend not just relying on your doctor. this community is great for just ideas on what suggestions for treatment you can give to your doctors. that’s been the best thing this site has done for me.
I always tell everyone to try strips of lidocaine patch along the nerve branch that’s flaring. I started doing it abt a year ago for ATN (atypical TN, I have long low deep aching burn that never stops rather that a series of electric like shocks, it often feels like a red hot nail is being driven into my chin) and it changed my life.
You can get 4% patches OTC or 5% by prescription. SalonPas is the OTC name.
Hey Okie!
I’m from Oklahoma too, though I am currently working and studying in China. BUT I just had a great experience at the OU Medical Center. I highly recommend them for anyone in Oklahoma.
ANd yes, you will get frustrated searching for the right combination of medications. Try to remember to be patient. For help with that, I recommend Jon Kabit-Zinn’s book Full Catastrophe Living. This is a youtube version of one of his audio tapes from back in the day lol. https://www.youtube.com/watch?v=u4gZgnCy5ew. He has other guided meditations on youtube too, which just help you deal both emotionally and physically with the pain. It is important to remember you are not your pain, even though sometimes it feels like all you are is pain. Even the worst pains are temporary. He also helps you stay in touch with the parts of your body that are not in pain. So I try to meditate every single day.
As for doctors and medications, if possible and if you are willing, I recommend taking a little trip to Colorado or New Mexico for a cream called Charlotte’s Web that many sufferers find relief with. If you do not want to do that, then you will try some things like Tegretol or Trileptal. Sometimes these drugs have strong side effects. So unless you are wrenching after one dose, you really have to stick with the drugs for a while, because sometimes your body adjusts to the side effects and the drugs start to work. It really is a long process of trial and error. I currently am on Trileptal and Neurontin, and I take Oxycodone as needed (which is pretty much every morning). Opioids do work for some sufferers, but not all. They are also extremely addictive, and it takes a lot of my self-control to not take more. That’s why I wish I had access to the medical cannabis, but I do not in China.
I wish I could refer you to a specific doctor, but because I was only at OU for surgery and the cause of my pain was a tumor behind my eye, I actually didn’t meet the TN specialist at OU. Which reminds me, GET AN MRI and GET AT LEAST TWO OPINIONS. I had multiple MRIs over several years, and multiple doctors and radiologist missed my tumor until it was too big to miss. Hopefully you don’t have a tumor anywhere, and it is an easily identifiable situation like a compressed blood vessel. My eye doctor was Annie Moreau, and my neurosurgeon was Michael Sughrue. Both were excellent and some of the top in their field. Plus they are right there in OKC.
Keep coming back to the site for info and support. You are not alone.
Thank you so much Willimus798, your information is extremely helpful and timely as my doctor is working on my referral to neurology today. I have been very blessed to have people who have been put in my path to provide me with some much needed guidance we I am working through the early stages of this problem.
I am so sorry that you hurt.
A book called Striking Back is very helpful…
Goes through most of the drugs and surgeries.
Wishing you all the best
Of course! I have gone through so many different emotions and stages over this “journey”, which in my opinion, puts too good a word on this situation, but it is a journey nonetheless.
I hope you continue to receive good treatment, and if you don’t, do not be afraid to advocate for yourself. GET A SECOND OPINION! I don’t care how awesome your first doctor is, he or she is still a human being, and they miss things. And s/he will not be offended at all when you go see another neurologist.
I would also echo ellen5 and get Striking Back, which can give you a good, comprehensive overview of facial pain.
Stay strong!
First and foremost may I wish everyone a Merry Christmas and a healthy and Happy New Year. We are all survivors. Although a lot of days TN takes away a little bit from us. The most wonderful thing is we may not physically have met but we all share common ground and understand wglhat each and everyone of use experience. This has been a website for me personally that validated what I had and that people were listening. I suffered for 25 years of my life before I reached the proper diagnosis. I’ve had MVD and gamma knife this past Sept. unfortunately the gamma knife was unsuccessful for me. Living in New England doesn’t help with the bitter cold snaps. I’ve been having an exacerbation if my symptoms. But thank goodness I have great family support. So here I am putting it out there a 62 year old woman I’m here if you need to chat! 
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LacyLee,
Interestingly when I first started having the devistatingly painful shocks of TN that were so strong, they brought me to my knees literally and I almost passed out from pain. (I already had other never pain, horrible migraines, chronic back pain, so I was no stranger to pain; but this was at a whole other level.) I happen to already have my usual Rheumatologist appointment a day or so later and I went into his office a mess, crying about these new shocks off pain. He immediately said I had TN, Said to call my neurologist right away and tell him another Dr diagnosed me (and I should be seen within a few days because it is an emergency) and I was. I am immensely grateful to this Dr because I’ve heard so many horror stories about not being diagnosed for a long time. My pain level has waxed and wanted over the years, currently in having a hard time with the winds we’re having here plus the weather getting colder. I hope the winter season treats you ok, happy holidays! Krista
Tulips I have ATN and migraines and have been told the two are connected. Have you been told anything along those lines?