New here, have questions about TN - experiencing weird symptoms

General General TN & GPN (Old Site)
1

Alright so, I'm new here - hello all. I want to ask a few questions about something I recently experienced which I am really frightened that might be TN or onset of such. I am 20 years old and 2 weeks ago or so, I had a week during which I had random pains around my face with no particular localisation. Firstly it was the left side of the face, then it was the right one. The pains are brief and are more like a brief poke or a sting, even if sometimes I had pains lasting 40-50 seconds or so which were like a circular dot on my skin pulsating with stabbing pain (not severe, rather weak and simply annoying) - again, these had no particular localisation and appeared around the entire place. Previous to that, or together with it I am not very sure, I had/still have very annoying and persistant tingling in one side of my face, the teeth on that side and the tongue on that side, even if the tingling seems to move around and it's often down my neck and around my shoulder as well. What really worried me though (i of course obssessed and went to research on google), that after reading about TN and that the pains and provoked by wind, I felt that mine are aggrivated by wind/cold as well - there would be mild aches all around my face on both sides when I am exposed to wind outside.

Now, I was to the doctor for this, and it was diagnosed as a severe TMJ - they made a MRI of my jaw - closed/open, and saw that my right side (where the pain/tingling is most prominent), has a rather severe subluxation to which I was advised to go see an oral surgeon. I also noticed that by the time the pain moved to the other side, I had developed a pain and clicking/popping in taht side of the jaw (the TMJ) as well, which I hadn't had before. Basically I do have a lot of TMJ symptoms, especially on the side which is most affected, but I am very concerned that this might be some sort of TN which is starting. The pain disappeared after 1 week just like that - completely random, i was even outside in the wind during it. One second it was there, the next it wasn't - just the annoying tingling remained, which surprisingly enough- seems to go away if I don't focus on it. Together with this, strangely enough, I also had weird pains in both hands/arms - and I read that pain in index fingers can also be a symptom of TN, which really did it for me. :( - even if my pains were not strictly in the index fingers, they were in hands and arms, as well as tingling down the arms and in the hands - which I read that can also be a TMJ symptom. I also noticed that if I rub my face with hands intently, the side goes numb for a while and then recovers, I am not sure if this is connected in some way or not.

I am a long term severe health anxiety sufferer who has had a long-lasting fear (due to past events and several doctor mistakes) of Multiple Sclerosis, and ofc I read that TN can present as a MS symptom, and bilateral TN is a strong pointer towards it - so you can imagine how freaked out I am right about now. Namely, MS has been ruled out in my case with several MRI's (last one 8 months ago), and an examination of 5 neurologists, one of them which is a MS specialist. I read that bilateral TN doesn't usually develope at the same time, and one side is affected first and then after years the other side begins aching as well. I don't know what to think of this, can it be TMJ or something else? Or does it sound like TN? The fact that it responds to wind and cold is what worries me most, but could it just be in my head? Thank you all for any help.

2

No one has any thought or advice? :(

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Well all of those tingling and weird sensations you have in your face are all things that I have experienced before and still do with my TN.The neck and shoulder pain may be associated with a different health issue. There are times when I get some at the very top of my neck under my jaw, because I have jaw pain too. So I don't know. But yea, pains/symptoms can come and go when they want...it's the nature of the nerves... they do pretty much what they want to.. My neurologist told me once they can get better or stay the same or get worse...There is just no predicting with nerves.

Hang in there. Maybe talk with your doctor about your concerns if it is effecting your sleep patterns or eating habits. I do know that if a person has TN, stress is not a good thing and can intensify the pain symptoms.

I hope things get better for you dear... Min

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Thank you for the answer, Min. Does this overall sound (the type of pain i am experiencing, the kind, the location and the trigger), like it could be TN according to you? I am unsure of what to do to be honest, doctor said TMJ and that's that, even if I have my doubts..

5

I think I would wait it out, by that I mean, If.... it were me, I wouldn't do any TMJ surgery before consulting with a neurologist. I would also try to go to one who has experience with Trigeminal Neuralgia patients. In this way you can see what would be in your best interest from both perspectives. Does that make sense? Of course, you could just have TMJ or you could have both. If you have both... the TMJ is going to aggravate the TN. Everything aggravates TN.....(a little humor there) but unfortunately true....:(

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It's a neurologist who said I have TMJ, she sent me for an xray of the jaw and all that, saw there is a subluxation on that side and went from there. The main thing that worried me is that my random pains seem to have been provoked by the wind at times... but then again, it's far from the classical TN pain and seems to be much different both in severity, location and character.. different, and yet still the same - if you get me. I am wondering if TMJ can actually affect the Trigeminal nerve and irritate it..

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Is it possible for you to get a second opinion? I think over time TN will show you that it is there....you can read more about the symptoms under the Face Pain info tab. They are burning boring aching pain for type 2, and the pain is constant. You can look under the forum discussions and put in TMJ in the keyword and see if any of the other members with TMJ have experienced these symptoms??

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Don't think I'll be getting a second opinion too soon, I guess I'll need to wait this out and see what happens, although in the meantime I am very curious to hear from someone if TMJ can cause such things.. I researched so much about TN that now my head is literally blowing up with it. Not good.

9

No that is no gooda...You need to listen to some good soothing music, and take a hot bubble bath and maybe do some meditation and forget about all this. One day at a time dear...one moment at a time...

10

Vas,

I'm going to chime in here. First of all, I have to agree, try to relax. You are tensing up all your muscles so much that you will certainly cause more pain than you think. It is also quite possible that you are grinding your teeth while you sleep due to your anxiety over this. That can cause pain in your face and jaw, which can radiate to your shoulders and down your arms and into your hands.

I would say that for most of us, TN develops over time and can go for years without symptoms. Also, for most of us, it is also only on one side. I am not discounting the possibility, however, I think that it is important to be careful when doing research if you find that you might be suggestible. If it is TN, you will know in due time, I promise! I have had it for over 30 years with periods of having no symptoms at all, even during cold wind. I now deal with it daily - 24/7. This wonderful group will be right here to support you.

I'm so glad that you were able to see a neurologist and have an MRI done. Perhaps your next move should be with a dentist that treats TMJ.

In the meantime, try to relax. You are so young and it would be great for you to do some things that you enjoy. If you are in pain, try doing something to take your mind off of it and see if that helps. The brain can only focus 100% on one thing at a time. I'm not sure what that might be but perhaps reading a book, or taking a walk, playing with children, working on a project, etc. Frequently, just taking your mind to a different place can be very, very helpful.

Good Luck,

Cathy In MD

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Thank you for the answer, Cathy. It's true I'm very stressed over this, but this goes a long, long time back due to other Multiple Sclerosis problems - and things just seemed to tie up, with this persistant tinging and the triggered pain. Although I am not sure, maybe TMJ can affect the Trigeminal nerve in some way? Not sure.

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Vas,

I can certainly understand. My daughter has MS. She has found that living in fear takes away her ability to live. She has three young daughters and when she has good days, she takes advantage of them to the fullest.

Believe me, I have days when I want to scream from the rooftops because of the pain I am in. We also have a lot of auto-immune in my family, one daughter with MS, one with Lupus, and I have Undifferentiated Connective Tissue Disease and am a cancer survivor. We don't know what is going to happen from one day to the next and I haven't been able to work in over a year. I myself, am trying to learn how to live in the moment, to relax when I can, and realize that I have only some control over what comes next. I have come to realize that worry will not change the future.

Due to the relationship of the nerves, I can imagine that compression on one of the branches of the trigeminal nerve from TMJ could cause it to activate pain. It is not an unreasonable assumption. Discuss it with your doctor, make sure they HEAR your concerns. In time, you will know. I know, it is hard to wait and wonder. I have been there and I hated being told all the time that they didn't know what the problem was.

Like I said, we are right here for you,

Cathy In MD

13

Bumping in case anyone else has a clue or opinion.

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Don't get too hung up on this is my first advice. I was 20 and got it bilaterally almost immediately. No MS, or any other dangerous things. Life goes on, trust me! I have had obsessive anxiety too, in the form of eating disorder. It takes your life away. If 5 neuros have seen you, and you have had numerous MRI, you wont have MS. I would rather focus on the anxiety, if I were you. Sounds like you could benefit from some talking therapy. I know from personal experience that they can really help.

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Thanks for the answer Tineline, I'm trying not to worry too much, but it's sometimes out of your reach you know? I read around the internet and found out that bad TMJ can also irritate the trigeminal nerve, so that's something at least. I'll probably see if i can go to another neuro sometime soon and see what he thinks, in the meantime looking forward to hearing more opinions from you all, thanks for the help so far!

16

I'll weigh in if I may on several factoids.

(1) There seems to be a fair amount of evidence in your case that TMJ is involved in your facial parasthesia (the tingling or prickly sensations you describe). In fact, you have a lot more evidence in the clicking of your joints than many people do who receive a diagnosis of TMJ.

(2) Periodic numbness of one side of your face after mechanical stimulation is also unusual but not unheard of, both in TMJ and very occasionally in TN.

(3) While health anxiety may lead to grinding and thereafter to pain in your jaws, I would caution you strongly against accepting any psychosomatic diagnosis in your pain. That kind of diagnosis in your medical records can be a kiss of death for further neurological investigation and assessment, and it may cause some doctors to discount or disregard your own reports of your medical symptoms. That kind of crap is NEVER constructive or helpful. Seeing a psychologist who is trained in pain management for ancillary support may make sense for some people, some of the time. But if anybody uses the term "psychogenic", then confront them with the mythology they are preaching because that's exactly what it is. There is not ONE scrap of observational evidence that your emotional state can translate into actual physical pain, except through some intermediary process like sleep interruption or mechanical grinding, or adrenalin overload. For much more detail on this subject see Angela Kennedy's book, "Authors of Our Own Misfortune? Problems with Psychogenic Explanations for Physical Illnesses".

(4) For whatever it's worth, about 2-4% of patients with a confirmed diagnosis of classic Trigeminal Neuralgia (which it isn't clear that you actually have at this stage), are found to have MS, and thereafter diagnosed with "symptomatic trigeminal pain", attributed to nerve lesions from the MS. It's an even more rare variation on chronic neurological face pain than TN itself. If the group of doctors you've identified says you don't have MS, then most likely you don't.

(5) While TN may occasionally be accompanied by pain in your index finger, that is also very rare and unusual. I'd consider it a statistical outlier for which there are no reliable estimates of incidence rates. Bilateral face pain, on the other hand, is probably more common than reflected in the medical literature for TN. In the demographics study that I performed on over 1800 of our members, I found that up to 20% of the member profiles indicated pain on both sides. I've seen literally every pattern: pain on one side spreading to the other, pain that "switches" sides, and pain that develops simultaneously on both sides. While pain spreading between sides seems to be the most common pattern, simultaneous emergence on both sides DOES happen.

Bottom Line: I think TMJ is a better explanation for your patterns of discomfort than TN. And I don't often say that.

Go in Peace and Power

Red Lawhern, Ph.D.

Resident Research Analyst and Moderator, LWTN.

PS: be aware that although I've authored numerous publicly posted papers in the areas discussed above, and talked with thousands of patients, family members and doctors over a period of almost 20 years, I am not a licensed physician.

17

Thank you for the very informative answer, Red - it made me feel a ton better. The main thing that worries me in this is the fact that the pain (at least seemingly), reacted to wind and cold - I am not sure if this is possible in TMJ, but I reckon you are more knowing than I am about this.

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Dear Vas, please let me specify what I meant with my previous comment. First of all, I do not under any circumstance doubt that you are in pain, and this is the right place for that. I do not mean to dismiss you and your struggles. Everyone here knows what that is about. But I will say that I think anxiety is one of the worst things in the world to live with. I have suffered anxiety for many years, and I have suffered TN for many years. Anxiety is much worse.
I rarely share my story, but I will now, because I feel that it is called for.
I grew up under circumstances that lead me to feel a lot of insecurity. I have an abusive parent, and I after i became an adult, I ended up so afraid that I could barely sleep. I was so scared - really frightened - that someone would come and get me at night. I lived in a nice and safe little flat, but I ended up locking the door to my bedroom at night. I actually stood and watched the microscopic segment of the living room through the keyhole at night. Like I would finally see them passing by the one square yard I could see. I checked everything before going to bed, closets, DRAWERS...in case someone was there. I could not control it, nd I know exactly what you say with that it is out of your hands. It really is. At the same time, I developed an eating disorder that I struggled with for 8 years. Pretty obsessive girl, I was.
Thinking about the fear actually makes my heart pound now. I can still feel faint traces of it, and it can sometimes come back a little now, and I have to indulge myself and check the closet and under the bed. But don't tell anyone, hehe. Especially in times of stress, I can sometimes gt the old urge.
I finally got my act together and saw a therapist when I broke the parental ties a few years ago. One year, and I was a new person. No meds, just talking.
I realise my answer before may have sounded dismissive. I am from a different culture, and we communicate differently in the North of Europe, and that may come across as a bit short. But I mean it when I say the following: If you can get help with your anxiety (and completely independently of your TNor TMJ treatment,) your life is likely to become a lighter load.
We are in real pain, and it is enough without the chasm full of fear within. You just may need someone to help you traverse it. I believe that there are psychologists out there that very good at what they do, and that means - not doubting or dismissing you for one moment.

19

Don't worry, mate - I never got the impression that you are being dismissive or anything of the sort, I am well aware that anxiety and especially health anxiety can be as debilating (no clue how to spell it, pardon me) , as a real physical disease. I've gotten so many neurological symptoms due to anxiety that I've lost track by now, and they've all been proven to be from excessive stress. My story is somewhat similiar to yours, but still different - and I am impressed by how strong you've remained through all of this. I hope life treats you well from now on, bro.

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Thanks, and same to you!Good luck with all of it, and please take care of yourself. :)