Ok, so I am starting to really feel like a hypochondriac here. And I am pretty sure that my doctor thinks that I am nuts by now!
I was dxed with Type II TN a couple of months ago. My symptoms were all on my left side-pain in top and bottom molars, into the jaw, cheek and even my ear sometimes. I am on 40mgs of Amitriptyline and have been pain free for almost two months now. Thank goodness for that!!
My newest symptom is strange tongue sensations on the opposite side of my TN. The right side of my tongue feels foreign in my mouth. It has a tingling, almost itchy feeling to it. So much, that I have developed weird habits of rubbing the right side of my tongue against my teeth and it is always smushed up against the right side. I am doing it a lot, especially in my sleep. I wake up in the morning and the right side of my tongue hurts! I also think I started doing it while I was in so much pain on the left side so that my tongue wouldn't touch that side of my jaw.This is driving me nuts.
I went to the doctor again. Everything is fine. She said the right side looks inflamed and red (yeah, from the self-inflicted rubbing and biting). I told her about this and she agrees that I am probably making my own tongue hurt.
Does anyone else have any experience with this sort of thing? I am worried that I am developing TN symptoms on the right side now, but just in the tongue?? Or has my traumatic medical experiences, and the never-ending anxiety I have acquired about all of these invisible, phantom symptoms accumulated itself into an actually physical symptom?
I feel a bit nuts for even posting this because it seems rather insane. I don't have anyone else to talk about this with. No one understands at all.
Funny it’s me again to reply. When my symptoms first started, back when I thought I was having invisible inflammation the right side of my tongue had a weird sensation. Not painful but just weird and I would do weird things with it just to try to make the feeling go away like I’d turn the side of my tongue down toward my lower gums and I’d even just try to pull it away from touching anything but that was hard to do all the time. It almost felt like that weird feeling you get when you sip something too hot but it didn’t feel burned. Anyways I had that particular symptom for quite a long time. My tongue stopped hurting when the pain spread to other places like my cheek and teeth. However it was all on the same side so I’m hoping that you’re not developing any bilateral issues. You aren’t a hypochondriac though. Now anytime something doesn’t feel right I wonder but I spent so long thinking that I was crazy because none could tell me anything that now I trust myself to know when something isn’t right.
Thanks for your replies. And thanks for reassuring me that I am not crazy.
Bells--it sounds like we have had a lot in common through our journeys with TN. Your description about sipping something too hot is exactly what it feels like. I am also really hoping that it isn't a symptom of TN on the other side :(
And dealing with these invisible and varying symptoms does lead to thinking way too much about every little twinge and new sensation. It is hard to stay out of my head sometimes-literally!
Not sure about this Justjane, but I am down-playing in my own mind all but my really clear cut pain symptoms and give myself plenty of leeway before I jump to horrible conclusions about the spreading of pain. My mind can really rocket to horrible scenarios. One thing I have noticed with myself is that as soon as I see the Doctor my symptoms resides. Not during my full-blown TN but in other situations. It is as if my body REALLY wants to be sure it is being taken care of and as soon as I take the symptoms seriously it seems it can just mellow out.
You are still fairly new to your reoccuring TN and it must be incredible stress!!! All kind of questions swirl in my own head and I am sure yours. Can we support our families, our career, our lifestyle and the stress of unknown amount of medical expenses? And all the questions about what decisions to take as far a surgery and medications.
I think practicing some relaxation. Taking little steps to be sure all is aligned and safe in your life. (As much as possible). Seeking out some relaxing fun. Take little steps to help others maybe to get your mind off yourself. And so many things other than TN can be causing that. I mean if it is TN you will eventually come to that conclusion but so many more benign things seem possible. And could the pain be really more of a discomfort at this point then the roaring pain of TN? I find for myself that I am really susceptible to stress. Just meandering --and hoping that this is just something that will pass for you. Keep us posted. Sending you healing and peace. I don't want to down-play your tongue pain but just want to generate options. Smiles, Tina
Hey Jane-- Don't feel nuts!! The pain/wierd sensations jump all over. Eventhough the tegretol stopped the worst of the pain for me--it didn't stop the nerves from firing completely... sometimes it still hurts behind my left nostril (does that place have a name??) sometimes my eye tingles, feels very dry, or feels droopy-- sometimes I feel an ache in the joint--all on my left--then sometimes I have a kind of shooting very quick jab on the right...it is ridiculous how it jumps all over... I do think the anxiety can make us super sensitive to any little feeling we get...I mean maybe some of those feelings were always there but now we notice them b/c we are hypervigilant. Who knows??? But you are not alone....
All of what you said makes sense. Compared to the actual "pain" of what I was feeling before my medication started working for me, this really is nothing but an annoyance. I am also susceptible to letting stress catch up with me, and it usually shows itself as anxiety. I think this tongue thing has more to do with anxiety and stress for sure. That is what I meant when I said that all of my anxiety over the past few months of unknown pain, and stress over the TN is showing up in a physical form. This whole experience has been incredibly frightening and stressful. It is difficult, day to day, to process everything on my own. My health and well being are very important. I am only 37, I am a single mom of a beautiful 5 year old girl, I own my own house and work two jobs so I definitely don't have time to be sick!
I can also relate to what you said about your symptoms subsiding after you see your doctor. I am prone to anxiety in general, so given something actual to worry about my mind races and I fixate on it.
I do need to relax! And I will. This has actually been a bit of a wake up call to get myself back on track. Slow down, take care of myself and be thankful that I am not in dire pain each day like so many that are going through much worse than I. This website and everyone on it have honestly been detrimental in my understanding TN and working through accepting it.
I am so glad you mentioned the tongue--except I hate you feel this way. I actually laughed through my tears. My tongue feels like it does when I have had my mouth numbed for dental work. I have only had the TN symptoms for about three months. Mine are so strange. I have seen 3 neurologists and one neurosurgeon. I have been diagnosed with TN and Hemifacial neuralgia by two of them. I also have ear pain and my speech is slurred. My pain is not extremely intense. This is probably because I had a pain block for other pain in July and also take other pain meds for other pains. However, I am still in a lot of pain. I am also just so upset from going to doctors and am so anxious about all of this. I cannot talk and do either my job at my practice or my job as a professor. My eye twitches, my mouth twitches. Nothing so far that I have been given has helped me. You are not imagining what you have! If you are, so am I.
Linda
I am a psychologist and I have worked for over 20 years with people who chronic pain. I actually thought maybe I was taking on all their symptoms--except for the fact that none of them have any of my symptoms.
the right side of my tongue had a weird sensation. Not painful but just weird and I would do weird things with it just to try to make the feeling go away like I’d turn the side of my tongue down toward my lower gums and I’d even just try to pull it away from touching anything but that was hard to do all the time. It almost felt like that weird feeling you get when you sip something too hot but it didn’t feel burned. Anyways I had that particular symptom for quite a long time. My tongue stopped hurting when the pain spread to other places like my cheek and teeth. However it was all on the same side so I’m hoping that you’re not developing any bilateral issues. You aren’t a hypochondriac though. Now anytime something doesn’t feel right I wonder but I spent so long thinking that I was crazy because none could tell me anything that now I trust myself to know when something isn’t right.