I'm new here and already found this site so helpful. I would be grateful for advice on this. Yesterday evening I suddenly got a sharp "ice pick" stabbing type pain that starts just behind my left ear and shoots up that side of my head. My atypical TN has always been on the right side of my face. I'm scared that this is a new manifestation of TN - it's still firing off every couple minutes and this has been constant since yesterday. My right side is burning, numb and aching as usual, but I've had this stabbing pain on the right side of my nose on bad days. Can this happen? Does it sometimes spread to other areas or jump around to the other side of your head? Anyone else had this happen? I'm close to tears right now, just sick of dealing with it all. I try to stay positive but living with the fear of what my body might throw at me next can be too much at times.
Does TN get progressively worse? I was afraid to ask the doctor that question. Kind of didn't want to know. I was told I would not get better, but no more than that.
Welcome! I’m new to the group as well, and was diagnosed only a few months ago. My pain started in my teeth, and now I have varying places that hurt. The pain goes from my right eye, to the ear, and my chin, jaw & cheek. The worst is the stabbing pain up my nostril. I think it’s getting worse. I would love to hear feedback on if this gets progressively worse.
Hi-- I was diagnosed in June after my first bad attack (had tooth pain for a year off and on) and the meds helped quickly--am currently in a remission. When I first got on this site I was so upset because of some of what I read...it can be a very horrible disease for some people. Other people are helped so much by medications and have long remissions--from months to years-- they say it gets worse overtime--but it is very very unpredictable. I have read about some people who only have "flares" in the winter..and the rest of the year they are painfree... so I guess the answer is...no one knows what the future will bring...but we are so much more fortunate than people who had the disease in the old days where there were no treatments... as for the pain jumping around... yes it can be on both sides..it can move all over the place...it can jab you for a few seconds, minutes, hours and then stop for no apparent reason... it can feel like a headache sometimes (behind the eye) a toothache other times, a sinus infection..etc... it is a crazy thing... thank goodness for this site so we don't feel so alone..pain can be scary and isolating... hope you have many many painfree days in 2014!!
Hi! I'm in remission too at the moment, although my face has a dull ache on the right, almost like someone is pressing their hand on it and I have some numbness in my mouth and chin. This I know means fun times ahead! I've been diagnosed for about 20 months and in that time have had two periods of fun and games. The second time was in many ways different to the first. It involved my toungue and I experienced the joy of shocks when the wind blew, which I never had the first time. My cat brushing his tail across my face made me scream like a banshee!!! Can't wait to see what next time brings.
Thank you guys for replying so quickly. I've been feeling a little panicked. This morning the pain is still there coming about every 30 seconds now especially if I move my head. I did manage to sleep last night but that seems to be how it goes for me. Unless I get woken up in the middle of the night with a full blown attack (which I dread the most, it happens sometimes) I can usually get some sleep.
So I guess the answer is - this is how it goes. Tacocat your pain sounds similar to what I get. It's different everyday - but I always have the deep burning/numb/aching on the right side of my nose and in my mouth. Some days certain teeth are agony and then other days it changes to other teeth. Sometimes my gums burn, sometimes not. I get the pain behind my right eye, my cheek - you're right it does jump around all over. It stays in one area for a few days and then hits another. But this is the first time I've had it jump over to the left side of my head. I have to say I'm feeling pretty discouraged right now ....
I can't imagine how people coped with this years ago. Probably just getting a diagnosis was difficult - it's hard enough now even with modern medicine!
Hi Obsidian
You need to document what’s happening to the other side of your face now. It’s one thing for TN to jump around on the “bad” side, but it’s something else to show up on the other. So keep a journal of what the pain is and frequency, etc. you will need to have a discussion with your doctor about this. Do you have a good neurologist?
Yes I like my neurologist. Thanks for the pain journal idea, I'll start doing that. I've had fleeting pains on the left side before but never behind my ear. I wish it would go away :(
The nerves in my head are just generally have a party all the time these days. Thanks for your support! Joining this site has been so, so helpful!
Yes I’ve had that behind the ear pain too and it is confounding. When you start your journal, also note any foods you were eating or drinking. Whether or not you were exposed to cold or loud sound, stress, that kind of thing. Then you can track triggers. Not only is this helpful for you, but your neurologist as well. And I’m afraid that wishing the pain away will not be helpful. Unfortunately you really need to get to know it. You need to be the expert on it. This will give you some measure of control…sometimes you can even talk it down when you feel a flare coming on. A quiet, darkened room can sometimes ward off the worst or help you at least “face” (sorry for the bad pun- it down.
My pain has also jumped around but it has remained on one side of my head. Sometimes it's in my mouth, others it's in my nostrils, behind my eye, on the surface of my face. So much to choose from! I have had very bad attacks for 3 days now. For two of them they were the kind where I could only drop to the floor and put my face in a pillow to stifle the moans and cries. Now that I have increased my medication level, they are still happening but they are more of a burning pain rather than sharp stabbing. The frequency and duration seem to be the same though. I am very anxious because I feel like I can't function in my daily life like this. I'm still on vacation, but, I'm supposed to start a new placement on Monday and I don't know if I'll be able to. What do some of you do when you are having attacks?..stay home and wait it out, or go about your business and try hide the pain when it hits hard. I don't want to end up in an embarassing situation on my first day!
Maybe the cold weather triggered this left side ear pain. It's a little better tonight, not as frequent. Thanks Bellalarke for all your advice :)
Hi AMOD - I wish I had some useful tips for you when you get an attack. I do function in daily life but not like I used to. My situation is that when I'm having a really bad time I don't go out, except to pick up my grandson from school. I had a full time job I loved but got laid off a while ago. My daughter needed daycare for my grandson so I started taking care of him 3 days a week so she wouldn't have to spend the money (she's a single mom). I'd hoped to find a part time job when he started school but then the TN started. I've had chronic fatigue on and off for years after I got sick from the Epstein Barr virus and then I had cancer 11 years ago. TN has just added too much into the mix. I feel like a wimp sometimes for not working, but I know that I wouldn't be able to cope now so that was the decision I had to make. My husband has come to understand over time what I'm dealing with - he's seen me too many times in a pretty bad state so he's had to accept this is the new "normal".
I hope you are able to start your new job Monday AMOD - I'm so sorry that you've been suffering such bad attacks and hope you get relief very soon.
Thanks for your reply. I'm sorry to hear that you have suffered so many health problems. I don't think you are a wimp at all for not working. I think it's best to know your limitations and work within them. No point going out to work if your not going to be able to do a good job and call in sick a lot. If you are able to do it financially, then I don't see why not. The concern I have for me, especially in the last week, is that if I stay home in bed, it's actually worse. Does the pain feel worse because that's all I'm focusing on? Is it better to get out socially and push through the pain just to have a life? These are rhetorical questions, of course, but something I've been thinking about. Now that my pain has turned to a more burning sensation as opposed to sharp stabbing, I"m getting up and trying to see what it will be like as I go about my day. If I make it through today, then I will go to my placement tomorrow. Wish me luck!! All the best to you with your ear pain.
Obsidian13 said:
Maybe the cold weather triggered this left side ear pain. It's a little better tonight, not as frequent. Thanks Bellalarke for all your advice :)
Hi AMOD - I wish I had some useful tips for you when you get an attack. I do function in daily life but not like I used to. My situation is that when I'm having a really bad time I don't go out, except to pick up my grandson from school. I had a full time job I loved but got laid off a while ago. My daughter needed daycare for my grandson so I started taking care of him 3 days a week so she wouldn't have to spend the money (she's a single mom). I'd hoped to find a part time job when he started school but then the TN started. I've had chronic fatigue on and off for years after I got sick from the Epstein Barr virus and then I had cancer 11 years ago. TN has just added too much into the mix. I feel like a wimp sometimes for not working, but I know that I wouldn't be able to cope now so that was the decision I had to make. My husband has come to understand over time what I'm dealing with - he's seen me too many times in a pretty bad state so he's had to accept this is the new "normal".
I hope you are able to start your new job Monday AMOD - I'm so sorry that you've been suffering such bad attacks and hope you get relief very soon.
Thank you for your response. It means so much to have found people that truly understand what we are going through! Usually I don't talk about or dwell on my past health issues - but when it comes to not working I still feel guilty so sometimes need to justify why. I'm 53 and had planned to work as long as I could, never expected to end up in this situation! But I agree with you - no point in finding a job and then calling out sick every week. Financially it's tough, but this is our reality now.
For me personally, staying in bed is a big no-no. It makes me feel sad for one thing and I focus on the pain more, which is never good for me. But what helps one person may not help someone else, you have to do what works best for you. Some days are harder than others because some of the ATN is in my mouth and it hurts to talk. I do try to push through the pain, but I've also learned to be mindful of how much I push. Having a life outside of my home in limited quantities is the balance I've found that works for me right now.
By the way, my left ear pain has subsided - only a couple bursts this morning. What a relief!! I hope you're doing better today and good luck for tomorrow - you're in my prayers.
Well, we both have had good days today. Yay for us! I have been pain-free so far, but, am feeling the side effects of the drugs. It's the lesser of two evils so I can't complain. I will make it to my placement after all! By placement I mean I am a student teacher in a grade 3 classroom. I went back to school and am in Teacher's College right now. It's one year and I have to get through until May. My workload is about to increase exponentially so I likely wont be on the forum very much for awhile. I will check in to see how you are doing when I can.
Glad to hear pain has subsided Obsidian and AMOD, mine has too. I didn't want to say anything because I didn't want to acknowledge it in hopes I was dreaming and that would be that. Just before Christmas I noticed while brushing my teeth that somewhere in the back of the upper right side of my mouth a tooth was zinging, you know how it goes, brush brush zing, brush brush zing, etc. Either a cavity or something worse....it went like this for a few days and then on Christmas day I got the jabs in the right ear (my pain is on the left side) but this is exactly how my left side started. Dr's said nothing wrong but otc ear drops helped before so I'll have to get some more again. Then it stopped and then Friday night I went to lay down on my right side and WHOOSH went my head down to my ear and then the pain jabs. Had to sleep on the other side, then the next night was moderate but still couldn't sleep on my right side. Oh please I pray that TN doesn't morph over to the other side. As I sit here with my old buddy the heating pad I am procrastinating going to bed.
The really scary thing is that I just brushed my teeth and no zing on the upper right side, that means there probably isn't a cavity. That's what my left side did until it went full blown.
I pray that God gives us all strength and peace and all the pain to subside! Yes please! Thank you!
it down.