I have had a very bad couple of days. I have now had ATN for almost two years am constantly surprised by how the pain can come and go and move around. I can go two weeks with no pain. I can have break through pain and full blown attacks that can last an hour, a day or a week. I am on Nortriptyline and think that it does help. I remember before being on medication that I was in pain every day. I can increase, and might if I have to endure this type of pain again. So far this morning is good but that is not unusual. My pain usually comes on late morning or early afternoon.
I guess I am looking for other people that have their pain come and go like this. I am so thankful that I am pain free sometimes and I am able to cope fairly well with breakthrough pain. The full blown attacks though send me right back into panic mode. My pain seems to go in cycles with my cycle. I am noticing that I always have terrible flair ups during the week before my period. Weather is another thing that seems to set my face on fire. I am in Ontario and we had our first wintery weather day yesterday. Coincidence? I don't think so.
What frightened me about this newest attack was the scope. Friday night all night was searing pain on my right side above my eye. I could feel it deep, deep into my head and sinuses too. Saturday morning was the right side tongue and the jaw and cheek. Last night was the left side. It started in my eye (blurry and irritated with spasms-I can't seem to see very well out of my left eye when this happens-does that happen to other people?), then it went down my cheek, across my jaw and into my ear. So intense. I wrapped a scarf around my entire head. And I had a couple of lightening bolts last night. I have only ever had a few of these. Well, one went through my tongue last night that made me jump off my chair. I hear people discuss other neuralgias such as ON, GN, GPN. I seem to have symptoms of all of them. Is that possible?
I am also starting to notice a correlation with cold sores. I don't often get cold sores. I have had two break outs this year-one on my left side lip and right now on the right side roof of my mouth. Now I know that the jury is out with herpes simplex but it really makes me wonder. The attacks I have had with my TN while I have a cold sore seem very,very intense and tied into the area of the coldsore. I am going to speak to my neuro next time I see him and ask if he would consider trying an anti-viral next time this happens.
Sorry, I am rambling...just looking for others that experience these things. It really helps me feel a bit more normal.
Thanks all :)
I'm so sorry - it sounds like you're really having a rough time. I also have ATN and my pain comes and goes too. Mine started in 2012 on the right side but over time it's jumped around a lot and it's highly unpredictable. Weather changes, wind, lack of sleep and stress will escalate it, but many times I've had days of constant pain for no obvious reason. I guess I'll never understand how this works.
For the first year, my ATN was hovering around one area - right side of nose, cheek and upper lip, but over time has gradually morphed into all over the place. I've had it on the left side too, plus periods of severe burning on the right side. You also mentioned your blurry irritated eye - I have blurry vision in my right eye now, and I had my eyes checked twice this year by 2 different eye specialists and neither could find anything wrong. My right eye has also developed a permanent slight droop which was never there before the ATN started. I've also had lightening bolts go through my tongue which has sent me into panic mode every time. I'm relieved I'm not the only one but I'm so sorry you're going through all this right now.
You're in my thoughts and I hope things calm down for you very soon. Just wanted you to know I have very similar symptoms.
Thank you for telling me about your experience with this. The eye thing is relatively new and progressing. So the eye DR couldn't see anything wrong with your eye? When I am having pain around my eye it is very blurry. If I put my hand over my other eye I actually cannot see clearly with the effected eye. You have that? And there is nothing actually physically wrong? It shouldn't surprise me I guess. This TN is sure strange. All of these invisible symptoms!
I am bilateral too. My worst original side is noticeably a tad bit droopy. Not drastic. I can notice it in photos. When I am having an attack that eye seems almost a bit swollen.
And it is so relieving to have others to talk to that experience the same symptoms.
Do you mind me asking what medication you are on?
Yes, me too - when I'm having pain in the area of my right eye, the vision can be very blurry. I've worn glasses for 40 years, so I know the difference between "normal" blurry vision and something else going on. Neither eye doctor I saw found anything abnormal. I was convinced I had a cataract but no ... nothing. The second eye doctor ventured a guess that it might be related somehow to the TN. He knew about TN and his guess was that the trigeminal nerves triggered some sort of disturbance to the optic nerves? It hasn't got worse at least but when I'm having a lot of pain in that area, the vision in that eye is very affected. If you haven't seen an eye doctor yet maybe you should think about getting it checked out anyway.
So you have some drooping on the original side too? It certainly is a relief to talk to someone else that has similar symptoms. If I remember correctly, you have a family history of it too? I think we chatted a while ago about that. I've been told my grandmother suffered from "facial neuralgia" but she passed away years ago so I don't know any details.
I don't take much in the way of medication because I have a history of extreme medication sensitivity. I had a prescription for tegretol from the neurologist last year but I was too afraid to take it because of side effects. I tried tramadol a couple times last winter which didn't help with the pain much and caused other problems. Since then I've muddled along, I take extra strength Tylenol which doesn't do anything really, use a heating pad sometimes, and try to stay quiet as much as possible. Last winter was awful and after that was when the ATN really started spreading. My doctor recently gave me a prescription for nortriptyline so if things deteriorate over this winter, at least I can give that a shot I guess. I take care of my grandchild several days a week but I do get time to rest which I am very thankful for.
Sorry I didn't respond earlier. I have really had a rough few days with my pain. It seems to have moved out of my eye for now. Thank goodness. It is back down in my teeth. Crazy how that is good news for me! Lol. I am used to having it in my teeth. I know what is feels like very well and what it will do. The eye thing was pretty intense. My whole eye was swollen at one point. Have you had that? But now it is gone again. Just like that. That is how I am fairly comfortable saying it is part of my ATN. I wish it would just all stay the same and stop moving around!
We have chatted before. I do have TN in my family as well.
Bless your heart that you are not on medication. How in the world do you deal with it? It sounds like our experiences are somewhat similar with this. The progression of it is what scares me. Sometimes I wonder how much my medication is really helping bc when it decides to freak out it just goes right ahead and does it. And when it does there is nothing I can do to stop it. I am generally pain free in the morning and it just gets worse as the day goes on.
I do have drooping. My original left side is the worst side. When it gets going the entire side of my face can hurt. My teeth, jaw, ear, cheek, temple and now my eye. I am really noticing it in pictures. And when I am in a lot of pain that whole side of my face is a bit puffy. I think anyways. It really starts to make me feel a bit nuts after awhile.
And yes, thank goodness that it comes and goes. I am able to live my life pretty normally and happily. I am noticing a pattern though. There tends to be one week a month where things are really not good. And that is just before or during my cycle.
Good for you that you take care of your grandchild. Boy or girl and how old? I have a six year old daughter. She is the light of my life and keeps me moving everyday. It is difficult to be around kids when in pain though. Last winter is when mine really freaked out for the first time too. This past summer was pretty great and now things seem to be gearing up again. A lot of people talk about winter being terrible for their ATN. I am pretty frightened of what this winter will bring. If I have to start enduring this pain every day I will most definitely increase my medication or try another one if I have to. It truly robs me of my life. I am miserable and depressed and just want to go to bed because being asleep is the only pain free time.
Advil will help a wee bit. I find heat helps too. I sleep with a heating pad under my face. I also find Voltaren Emugel will help with jaw and cheek pain. Beyond that nothing helps.
Message me any time you want to chat or are having a bad day. If that eye pain comes back I will probably be messaging you asking questions again!!!
I'm glad your eye pain has subsided! Yeah, last winter was when my ATN freaked out so I'm dreading the coming winter too:(
The past couple days have been bearable but today not so great. Anyway, hang in there ... and feel free to message me anytime too.