Let me explain my symptoms. I am a 27 year old wan from Canada. I started experiencing facial numbness in early May. I went to the hospital and was misdiagnosed with a pinched nerve. Fast forward to early November and my neurologist has diagnosed me with TN.
My symptoms are facial numbness akin to when the dental freezing is wearing off. My pain in the whole right side of my face can be described as an ache. It feels like a whole bunch of pressure is building up. My right eye has pain. It also feels like pressure is behind the eye. My right half of my lips feel like they are burning. It’s like someone is squeezing my face and cheeks. There’s tingling in my fore head close to the temple and hair line. I can sense this tingling goes under my hair and on my scalp.
Does this make any sense to anyone??? Please tell me I’m not crazy!
Dear Mallory. I hate to tell you this but you ARE crazy. I'm kidding, I'm sorry! I couldn't help myself!!
I have almost exactly the same sensations as you although mine doesn't extend as far as the eye. It stops below it but takes up most of the lower part of the right side of my face , mouth, lips and teeth. I describe my numbness the same way you do and got to the stage where I thought i was alone!! The numbness is mostly around the roof of my mouth ,lips and tongue whereas the aching and burning are around my jaw. It sucks!!!!! I usually feel as though I've got a hand pressing on it.
It's funny, when I first saw the Neuro he was months off retiring and the numbness had him fascinated! He kept sticking a pin in and saying " it's numb but you can still feel it! Amazing......"
I was also wrongly diagnosed many years ago with a form of painless migraine. It would come and go over the years but now it's hung around for a few years. Do you feel better now that you know you're not alone??
A properly trained neurologist would likely assign a diagnosis of "atypical trigeminal neuralgia" or "trigeminal neuropathic pain" with parasthesia. As catwoman outlined, your symptoms are quite common in people with face pain. You're not at all crazy, and your pain is by no means (except physically) "all in your head".
Thank you to you both for replying. The past two nights have been horrible for me. My symptoms just keep getting worse and I really needed to know I wasn’t alone. I appreciate beyond words that you took time to reply
Now I’m waiting for my MRI which is in early February. My neurologist is looking for signs of MS. I already have had a terrible reaction to carbamazepine. And I’m waiting for the Lyrica to start working.
I don’t know how people who have suffered with this for years has done it.
Lyrica can have some horrendous side effects too. Although no medication is free from this risk, the tri-cyclic antidepressant drugs are more often prescribed for facial neuropathic pain of types described as "atypical" TN. This class includes Amitriptyline, Nortriptyline, and about 10 others.
Mallory I tried Lyrica and I've now stopped because it did absolutely nothing for me. I have an appointment with my doctor next week to hopefully get something better!!
I had an MRI last year that showed nothing at all so based on my history and symptoms the Neuro diagnosed me as be Atypical.
Thanks Red for continually making me sound smarter than i am. You rock!!!
I don’t often get the numbness but the but the burning and the aching sure sound right up my tn alley. You aren’t alone welcome to the club. I’m 27 too.
I have that tingling in the hairline right where you do on the right side and a little further back, as well. I call it my hot spot. And it comes and goes now. Has a mind of its own it does.....I am numb on my right side as well. I also cannot taste on the right of my tongue either...
It’s funny that the majority of research I did says TN is uncommon in younger people but there are so many of us in our 20s dealing with this! Thank you again for everyone’s reply!
I do have another question… Why do people call atypical “boring”? It feels far from boring when experiencing it!
When I did a demographic analysis of LWTN membership a couple of years ago, I found that the median age at onset for chronic face pain among 1800+ members was 42, and nearly a third of the members were age 30 or younger. When I checked this outcome with Dr. Kim Burchiel on the Medical Advisory Board at the US TN Association, he told me that the typical new patient in his practice and that of others on the MAB is a woman in her 40s. Realize that our membership may include some out-liers that really aren't "TN" as such. But when I ran a significance check by doubling the number of people over age 60, the age median shifted upward by only two years. The age curve very closely approximates a Gaussian distribution.
Mallory, I've never seen stats on an association of TN as a "first sign of" any other disease. A small number of member records here on LWTN reflect MS, but the sample wasn't large enough or reliable enough to generalize. The new member questionnaire doesn't ask about medical issues other than face pain. I've heard figures from the US TN Association on the order of 2-4% of TN patients having what is called "symptomatic TN" from MS. I'm uncertain what methods were used to make that estimate, given that the question was also not a part of the international patient survey that TNA did in the late 1990s.
Yes, don't worry, these sensations, pains, are familiar to me too. Just a word from my experience with Lyrica. I was on Gabapentin (precursor to Lyrica), had a flare up and pain doctor tried Lyrica. It did not work for me at all so he switched me back to Gabapentin and added Amitryptiline at night so I could sleep. This combination, along with Oxycodone when the pain is worst, has been working for several years now. Good luck! I'm new to this forum, and it sure looks like a life saver for me. I'm so so grateful to be able to read other's experiences. It helps a lot not to feel so alone.
It's not boring, each day you think, 'what will it be like today, will a new place start to hurt, or go numb...!' I have aching along lower jaw, upper jaw, teeth, aching over my eye, and then I have two spots, one on my eyebrow and one on the left side near the top of my head which ache, burn, and feel 'boring', like someone is slowly drilling into my head, it's a strong pressure there. And sometimes for a change I get like a freezer burn sensation in that place, cold but burning at the same time!! Oh, and numbness and tingling on my cheek too... No, you're not alone!
You are not crazy!! I had very similar symptoms that I sometimes described as having lightning strike my face. I was initially diagnosed as having Shingles until a dentist told me I needed to see a Neurologist. The Neurologist had an MRI performed and it revealed I had enlarged blood vessels pressing against the trigeminal nerve. Sometimes, the pain would last for only a few seconds and at other times, the pain would be very intense and lasting for more than a minute or so. It had gotten to the point where I didn't want to eat, drink, talk or brush my teeth because any of the activities triggered a pain episode. Medication didn't work until I was given heavy dosages, but consequently, there were side effects. After trying medication (trileptal, gabapentin and baclophen) for about 6 months and still having at least 10 episodes per day, I decided to have the microvascular decompression 2 months ago. The moment I woke up after surgery, I knew the surgery was successful. The only downside was that I had a CSF leak within 2 weeks of the surgery and had to have another surgery to repair the leak. That too was successful and I am now pain free.
I have similar symptoms. My numbness encompasses all of the V2 and V3 nerve distributions. Although half my tongue is numb, it doesn’t affect the taste on that side . My cheek is very hypersensitive to an escaped hair from my ponytail touching my cheek. My numbness never goes away but other sensations are like flickering lightbulb shocks, knitting needle stabbing me in the face pain, itching, and acid rain drops spraying on my face :). My MRI was normal but my lab tests were positive for SS-A and SS-B antibodies, which are typically associated to Sjogren’s Syndrome. I read that 17 percent of people with Sjogrens will have trigeminal neuropathy, (although I can’t find them on any message boards!) and many times neuropathy precedes the classic symptoms normally associated with Sjogrens of dry eyes/dry mouth. I don’t know the percent of people with TN who have Sjogrens, but it’s probably pretty small. Not that it really matters, because so far the Plaquinel I’m taking to suppress my immune system hasn’t touched my TN. I’m on gabapentin, tolerating it ok-ish.
My pain started as a toothache, then progressed up the side of my nose, then progressed to my eyeball. My eyeball feels like it is in a clamp during an attack. When full-blown, I just lay in bed with an ice pack on my face until it passes. it is dreadful!
welcome to the club. I’m 27 too.