You know what I wish? I wish that my ATN would just stay the way it is and stop moving around and morphing into other painful sensations all over my face...
I have bilateral ATN that has stayed pretty much in the bottom two branches. I am getting some symptoms into the top branch now. This past week I had the worst flare up that I've had in about six months. So I had the good old teeth, jaw and ear pain. But now it is around my eye. It felt like a headache on the side of my face. These little dancy jumpy nervy feelings on my temple like a herd of ants running around and twitches under my eye. What was new was that my eye felt swollen and a bit blurry. It kept watering and just felt irritated. Do others experience this? The eye and temple are new for me. I have also had a couple of pretty intense twitching experiences under and above my eye. It has just felt like the entire left side of my face was punched.
Yes, I have had this...it lasted awhile...then it went away....then it came back for a period of time...then it went away...I currently haven't had it...for well, I don't maybe a year or so now.. but yeh it was pretty much like how you described it. LOL
I do the same things along with the “burning knife” feeling inside my eye. I tell the girls I work with I feel like I need a pirate’s patch for my right eye. I actually started with the pain in my eye brow and eye and moved down to jaw areas. Good luck. I am sorry for your pain but, it really does help to know that I/we aren’t alone in this.
Yes! exactly as you described, every minute of everyday, month after month, year after year.
It does go away for minutes, hours, days, and sometimes even weeks.
Depending on what side I have the pain, my eye L/R just wants to close, I have to force myself to keep my eyes open at times. It doesn't always work as my eye will just start to close itself or twitch as you say, even when I turn my head I can get sharp pain shoot though my head around my eye.
My pain moved all over my head from in my eye to my temple to my teeth constantly something was hurting was making me seriously crazy the temple pain was the worse for me cuz it felt like someone was crushing my skull in. Are you in pain then? are u on meds?
Thanks for the replies. Yeah TN does have a mind of its. own. Seems every few months I have something else going on.
Yeah I am on meds--Nortriptyline. Switched recently from Amitriptyline. I do have pain free days, sometimes a week. But then I get flare ups. I'm trying to deal with it without increasing my med for now. Learning my triggers and recognizing patterns. But it keeps changing! This past week was especially bad.
It does help to know I am not alone. Though I wish none of us had to deal with this.
may I ask how many mgs of nortriptyline ur on? I am on the same med I take 75 mgs a day. This pill has saved my life I know nothing will be the same ever again but ive come a long way from being bedridden cause the pain was so severe I couldn''t do anything.
I know what you mean. I was on Amitriptyline 60mgs and switched to Nortriptyline 50mgs a month ago. The side effects are definitely less. Both medications seem to help me which I am so grateful for. I have had to increase doses every few months though. Just going slow with that bc I don't want to max out dosages. And here again I am starting to experience more pain again and now around my left eye. I am already bilateral. Trying to maintain a balance with things so that I can function properly. It's not easy.
Do you still have pain? How often? Do you have triggers?
got ya I understand my pain started out bad on my right and after time moved to my left but wud never hurt at the same time like some one was playing that game simon with my pain. I dont' have triggers you could touch my face and It feels normal the only trigger for me I believe is intense stress.. which lights me up bad. I don't really have too much pain but I know its still there waiting..In the begginging I had intense headaches that were constant. Maybe once a month I get a bad headache like I used to but If I do I make myself go running or just change up what im doing to get rid of it.This is a very tricky disease but u start to learn ur own little tricks to dodge it. Feel free to write me anytime. When I was at 50 mg I was still very scared because I still had a lot of weird pains and they were changing with the pill which was scary too But a few girls on here told me to stick with it and I did and upped my med with the doctors go ahead ofcoarse to 75 world of difference just know that if its helping some... your in the right direction :)
got ya I understand my pain started out bad on my right and after time moved to my left but wud never hurt at the same time like some one was playing that game simon with my pain. I dont' have triggers you could touch my face and It feels normal the only trigger for me I believe is intense stress.. which lights me up bad. I don't really have too much pain but I know its still there waiting..In the begginging I had intense headaches that were constant. Maybe once a month I get a bad headache like I used to but If I do I make myself go running or just change up what im doing to get rid of it.This is a very tricky disease but u start to learn ur own little tricks to dodge it. Feel free to write me anytime. When I was at 50 mg I was still very scared because I still had a lot of weird pains and they were changing with the pill which was scary too But a few girls on here told me to stick with it and I did and upped my med with the doctors go ahead ofcoarse to 75 world of difference just know that if its helping some... your in the right direction :)
jstagrl29,
You mentioned running…does this seem to help. I have recently checked out a book call Striking Back, which is all about TN and it mentions exercise as helping some people? I was wondering if this is effective for you? Just always looking for other avenues…
Yes I do have weight gain…one of nortriptyline s side effects is craving sweet things but I blame myself mostly. Lol after u have been through something like this you tend to live it up.
I do run 3 times a week for the most part …exercise always been an outlet for me since my first disease is anxiety disorder it calms me down. In the beg. My head hurt way to bad for exercise but when the pills started helping a little I pushed my self to run a little and as time went on and I upped my med to where it is now I went further it took my mind off the pain to be doing something else besides thinking of the pain. So yes it def helps me.
I never had a problem with eating sweets before I was on Amitriptyline. I was hoping Nortriptyline would be better but so far definitely not. I think about food a lot. It's very strange. If I can ignore the cravings I think I would be fine.
Has running helped you to counterbalance the weight gain? Can I ask if and how much weight you have gained altogether? Message me if that is too private.
I've gained about 10 lbs from Amitriptyline and I think I've gained about five more in the past month or so. I am getting back into running. It's been awhile so lots of walking for now. I have never been one to diet but I think I may have to start counting calories and having smaller portions. Being out of pain is more important to me than the weight but I would be a lot happier if I could lose those pounds I have gained.
jstagrl29 said:
Yes I do have weight gain..one of nortriptyline s side effects is craving sweet things but I blame myself mostly. Lol after u have been through something like this you tend to live it up.
I do run 3 times a week for the most part ...exercise always been an outlet for me since my first disease is anxiety disorder it calms me down. In the beg. My head hurt way to bad for exercise but when the pills started helping a little I pushed my self to run a little and as time went on and I upped my med to where it is now I went further it took my mind off the pain to be doing something else besides thinking of the pain. So yes it def helps me.
Running makes my ATN/TN worst, any energetic exercise will increase my TN pain. It seems like anything that gets my blood pressure up will increase my pain, you would think that would indicate compression on the nerve (but my MRI came back normal).
hi JustJane37,
I feel for you…I too have the exact same symptoms, the intense pain can hang around for hours, days, weeks and then let up a bit but it’s always there waiting for the next time to strike. My ATN is left side only, and yes my left eye starts to hurt, twitch and water and it feels like I have to strain to keep it open. Also, the teeth, cheek, ear and jaw. Very irritating!
I take Baclofen when this is acting up and that seems to help. I also try and shut my eye as much as I can and put heat or ice over my eye, rest and get enough sleep. As Jstagrl29 mentioned running to help block out the pain, I do hot yoga to block out the pain. It really helps me, I love the workout and its a great stress reliever!
I hope you start to feel better soon, hang in there!
~Erica
Thanks Erica. You have the same types of pain that I do. I just can't believe it is in my eye now too! And yes keeping stress out of my life and lots of rest are always at the top of my list! I know what Baclofen is and I will talk to my neuro about it. Nortriptyline is working pretty well for me but maybe I should look into something that will help during a flare up.
Erica328 said:
hi JustJane37, I feel for you...I too have the exact same symptoms, the intense pain can hang around for hours, days, weeks and then let up a bit but it's always there waiting for the next time to strike. My ATN is left side only, and yes my left eye starts to hurt, twitch and water and it feels like I have to strain to keep it open. Also, the teeth, cheek, ear and jaw. Very irritating! I take Baclofen when this is acting up and that seems to help. I also try and shut my eye as much as I can and put heat or ice over my eye, rest and get enough sleep. As Jstagrl29 mentioned running to help block out the pain, I do hot yoga to block out the pain. It really helps me, I love the workout and its a great stress reliever! I hope you start to feel better soon, hang in there! ~Erica