I have had TN on left side for about a year... It has spread into the)) ear (geniculate neuralgia) and throat at times. Over the last week I have noticed little twinges of pain and tingle on my right cheek (in the same nerve zone) and deep ear pain beginning in right ear.
I know bilateral TN is rare, but I cannot figure out anything else that would mimic the same pain on both sides, esp when I know for sure my left side has been dx as TN. Maybe I am missing another possibility of something else for the right side?? Feeling a little panicked.
I head to Mayo in a few months for TN consult and to restest for MS. Thanks for any input. Hugs!
Bilateral TN isn't as rare as some of the professionals think it is. We have well over 100 bilateral patients in our membership approaching 2600. Likewise about 80% of our patient members are women, and the median age of our patient population is 43, not 50 to 60. There are quite a number of things that "everybody knows", which "ain't so", as Will Rogers phrased it a century ago.
If it will help your doctors to deliberate on this subject, feel free to refer them to our demographic studies, linked from below the Face Pain Info tab on our site menu.
I understand that in regards to the population here, yet it is still rare compared to other neurological pain disorders, hence the reason it is often dismissed- especially among my age group: 30 or younger.
I am more likely to be diagnosed with new developments in my migraine disorder than bilateral TN based upon the general population and their experiences. This makes diagnosis at my age a very frustrating process.
I'm looking for patterns among those with bilateral, to see if there is at least a bit of "what to expect" since at this point I have little faith in the medical community to even consider statistics of any sort other than the typical screening, which seems useless and outdated in almost all fields of medicine anyways. Not sure what Mayo will or won't say; I will point them towards the demographic studies.
I Classic TN 1 on my right side and TN2 bilateraly have that aching burning pain from ear to ear and in my throat as well and have pain on the out part of my ear it sucks Do you have a problem with excessive salive as well it happens when my throat is aching usually after I eat
I have TN2 on my left side, but occasionally I also have it on my right side into my ear. It is not as bad as the left. I also have an aching throat, roof of my mouth and tongue at times. I put it down to having a dry mouth as a side effect from my Endep tablet , but thought it strange that sometimes I have excess salivia and am always swallowing. This is really weird isn't it!
I have tn2 on my left side, was diagnosed in April. My left side cheek now feels like someone is squeezing it and sometimes quivers. I asked the neuro about it, he said its possible I have both sides, but does think it may be coming from the meds because I have no pain with it. I am scared I do have it on both sides, but right now its more annoying than anything on that side. It may be worth asking if the meds can cause this. Wendy
I had the aching and in my throat and face and excessive saliva before I got TN1 electrical shocking pain on my left side. It usually happend after eating so we thought it was some sort of food allergy gut testing said I was negative for all allergies. But after going on Gabapentin i noticed that it has helped this alot so I think it is related. I used to take 2-6 benedryl a day and now I may take 1 a week. So I defintaly think it is realated I just wanted to know if anyone else sufferd so when I talk the neurologist and she says I am crazy I can tell her I am not. LOL Thank you and have a blessed pain free day
Anne said:
I have TN2 on my left side, but occasionally I also have it on my right side into my ear. It is not as bad as the left. I also have an aching throat, roof of my mouth and tongue at times. I put it down to having a dry mouth as a side effect from my Endep tablet , but thought it strange that sometimes I have excess salivia and am always swallowing. This is really weird isn't it!
I have bi-lat pain. Constant type2. Doctor says I have a vein compressing the nerve. It may have never bothered me, but I believe it was brought on by dental cleaning. They clean below you teeth and irritate the nerves. Pain started in back molars and traveled all the way up. @ crashgirl I too have have tightness, or squeezing in my cheek, and quivering in above and below lips.
I was diagnosed with TN in 1998 on the right side. About one year or so later I got it on the left....Both sides, when active, are the shocks. I also have a neuromuscular disease since birth. My neurologist told me that it is not at all uncommon for people with pre-existiing nerve related disorders to have TN bilaterally. If you do have MS then Mayo will not be surprised....When I called there for an appt and said I had it bilaterally, their first question was "Do you have MS?" Believe your body....you know what you're feeling.
I have bilateral tn. My right side is much worse and harder to control than my left. It took some time before the doctors believed me that I was having pain on both sides. The left side started bugging me about 6 months after the start of the right side having pain. Some days can be really frustrating as the pain just switches from side to side, very rarely is it on both sides.
I have bilateral pain as well. TN started on right side and eventually I started having TN pain on left side.
I have never had pain on both sides at once. I don’t think bilateral TN pain is as rare as our doctors/neuro’s think!
((hugs))
I would agree with you, Mimi. Over a hundred of our 2600 members have reported bilateral pain. Likewise, more than a fifth of our members report Type II Atypical TN as one component of their face pain. See our Face Pain Info tab for the demographic studies I've done on the membership. Feel free to share with your doctors.