I have been reading about ATN...maybe too much! I'm newly diagnosed so I have only seen my neurologist once. Did anybody else start this with only one or two brief periods of pain and then get slammed with the agony, out of nowhere, that went on and on for months?
Hi Heather,
I am one of those people who began having this disease when I was a kid. It began with scalp pain only and was aggravated when I touched my hair. I would go months and even years without episodes. This continued until I was in my 20's when I was finally diagnosed because the pain moved to the left side of my face. I thought it was dental problems. Had a tooth pulled after root canal didn't work. Pain came and went-months or years before another attack. Then in my 40's pain starts to come more frequently. In my early 50's, I had episode lasting 3 months straight. Had to go back on meds and begin seeing neurologist again. I have TN in all 3 branches of the nerve, but only on one side of the face. I'm 56 now and yes for me as I get older the problem occurs more frequently and lasts longer. Sometimes I have 4 days of no pain and other times 1-2 weeks. Other than that, the pain is a daily thing. Without my meds, it would be unbearable, but with them I can deal with it. The wind is my worse enemy though and I still get electrical shocks even with meds. I do have times where I am in agony and cry a lot. I'm not sure, but I think it can get worse with stress. If you can control that somewhat then maybe it can get better (I don't know your situation). So, to answer your question, it can last for months, but there is help out there. This is a good place to talk with people who live with this disease. I'm sorry you are going through this. I hope you have family and friends to support you through this.
I am also newly diagnosed and havent yet seen the neurologist (appointment is in mid april). For several years at least I had less than 1 minute long lightning attacks in my face that were agonizing but they would pass and everything would be normal for a while (months) so I never even brought it up with my dr. In january I got sick with a really bad cold and thought i was getting better and then at the beginning of february this hit me, I would have several hour long to several day long attacks and it has been happening almost every day since. I was diagnosed with a bunch of different infections before this diagnosis. I have been on tegretol for a week it seems to be helping, as in i still have attacks almost every day several times a day but they have an end point, they are separate from each other and only last about 20 minutes each (assuming i can get away from my triggers which can be difficult since my major triggers right now are sound and vibration- so public places generally). I know i have several more weeks and several more increases until we know if the Tegretol is actually enough or doing its job. Its a hard road.
I’m new to this group, but I was diagnosed almost 10 years ago. I’m currently in remission. I take cymbalta 2 times a day and i take gabapentin 2 times a day also. I don’t remember the last time I had pain with TN. Have you tried different medications? This is what my neurologist prescribed for me. I pray u will find the medicine combination that will give you relief
I was misdiagnosed with TMJ for several years before getting a TN diagnosis. But the pain changed sometime in October. I had three episodes of fleeting pain spread over about 6 weeks, and then on November 16th I was hit by such pain as to be in agony. I was in fetal position and told my mom that she needed to take me to the ER because the pain was not stopping --- it had been constant for 6 or 7 hours. When I got to the ER my blood pressure was 185/79 and they took me right back because I was shaking uncontrollably and fighting not to pass out (Wish I would have now!). It was a smart ER doctor and a neuro that was on call in the ER that said, no TN is your issue.
So the long and short is that I had had some sort of pain for awhile, but NOTHING like what came out of seeming nowhere. I can tell you that I was in Blockbuster looking at renting a movie when the first shock hit and I literally thought my tooth had exploded out of my head. I have ATN, but when the pain is at it's worse, I have the classic TN shocks too.
Mine started out with tinnitus for about 2 days and then I began to feel pressure in my ear which lasted about a month, and then I got slammed. Within the next two months it spread from my right ear to my jaw and then around to my other ear and side of jaw. It has not quit since and for me it has only been 6 months, but I have not had one moments peace since it started. Hopefully you will find help soon and your case will be different.
Jolie & Heather,
I hope that you have had the tinnitus and the balance problems checked out by ENT/Neurologist. Both of these symptoms can be caused by other problems not related to TN. Having said that, I too had tinnitus of varying degrees and types. Usually always on the side of my TN. I take 5mg. diazepam daily. Believe it or not, diazepam is used to treat severe tinnitus. It is an addictive drug though, so you have to outweigh the risks. For me, it has been a godsend--definitely helped my tinnitus. Heather, could you have vertigo instead of dizziness? What you are describing sounds like it to me. Balance problems & falling should always be investigated. For my TN, I take 600mg of Tegetrol a day and 30mg of Baclofen a day. Drowsiness is the only side effect I have, so I had to adjust the times to take it so that I could go to school, do homework, etc. The two meds seem to control the pain in my face (most of the time), but I still have problems with my temple area. Has anyone ever experienced that? Having meds work for one section but not another.
I too am recently diagnosed although I'm the one who thinks it's atypical. The neurologist said it's too soon to really call it either (6 weeks of pain). Started after a serious sinus infection, and started in the left cheek and ear (sometimes it does go to the temple), over to the left nostril with a feeling the nasal passage is swollen but it's not. The pain can be incapacitating. My pain doesn't go away, it just lessens and increases. I have been started on gabapentin for now. I'm up to 600 mg a day, and will go up to 900 mg a day next week. If that doesn't help, they will switch me to Tegretol. I just want it to be gone. This website has been a wealth of information for me.
Absolutely Heather. Over seven years my TN was typically three months of agony followed by 2 of nothing over and over. Each year the periods of attack got longer, but I still had the brief couple months of relief in between. The last two years however, it had grown to full attack as the 2 month breaks were gone, and I was dealing with it 24 hours a day forever intil I reecently had surgery. For some, the disorder worsens and becomes more and more severe over time.
Yes Heather. The tip of my tongue and the inside of my upper lip tingle as well. I have also experienced the same thing with the swallowing. To me it feels like I become paralyzed and can't swallow, almost like I forgot how to swallow. It is a scary feeling. It is like trying to teach yourself to swallow. What kind of helps me through it is this--while it happens try breathing in through your nose and then try taking a breath afterwards--repeat until the episode subsides. I don't know what causes that. I often wondered if it was an MS symptom. I would love to hear from others too if they have experienced this and what their neurologist says. I use to smell "something burning" but think that was related to my auras with psychomotor epilepsy. I do get wierd tastes though. Sometimes things taste like fish to me or mold (like moldy bread). No one else tastes that either, so I do know what you're going through. Isn't it wonderful to have all these wierd things that are probably related to TN, but no one can explain?
The surgery, for me was only almost four weeks ago. I awoke immediately with zero TN pain which was evident because by that point after seven years I was already at 24 hour pain and could not even speak anymore. To be honest I had put off the surgery for a few years when I found that the mix of medications I was on made the pain tolerable back when it wasnt so bad, after learning of the risks involved with the surgery. This was because of my work , but mainly because I was also raising a small child on my own and felt the surgery could wait if I could live thru with the meds. It was only because my TN had become so severe the last two years that i could no longer function in my life that I made the decision to have the surgery. Yes, thus far as I recover, I am thrilled with my decision, but I recommend that everyone really look at all options to decide what is right for them. Having an excellent doctor who understands, a good medication regimen, plus other life considerations can help decide if you are able to live without the surgery or not. Its a very personal decision, since everyone suffers differently, reacts differently, and have varied life situations.
Heather said:
has the surgery helped? I dont want to live my life in painor have to take medicine that makes me drop out of my life. The pain does that, as well.
Nikki Anderson said:Absolutely Heather. Over seven years my TN was typically three months of agony followed by 2 of nothing over and over. Each year the periods of attack got longer, but I still had the brief couple months of relief in between. The last two years however, it had grown to full attack as the 2 month breaks were gone, and I was dealing with it 24 hours a day forever intil I reecently had surgery. For some, the disorder worsens and becomes more and more severe over time.