I was just diagnosed this week with TN. I was in so much pain at the time the doctor shared the news, I couldn't begin to wrap my brain around what I was hearing nor could I think of any good questions to ask. (those started pouring into my head in the hours that followed.) I was shocked that I went from perfectly fine two days ago to such pain and agony - and a diagnosis of TN. So I hit the internet to get some information and found this site. I have read many of the blogs and discussions, and found your insights to be helpful.
I have all of the classic symptoms of TN; the stabbing and searing pain that comes and goes across the right side of my face, the severe pain in my teeth and jaw and the sensivity to touch on the skin. But the one thing I noticed that was different from most of your experiences is that I do in fact have pain at night. It tends to be more of a constant pain than the 1 to 5 minute episodes of searing pain that I get during the day. Is this a sign that I have been mis-diagnosed, or that perhaps I have a secondary condition? I am also very concerned about the advice to avoid dental procedures. I have a history of some very painful experiences at the dentist because they often can't get me numb - even after 6 to 8 injections. I can't help but wonder if that is somehow connected. Is it possible that I have an injury to this nerve as a result of one of these dental procedures, and not TN? Could that kind of injury cause the kind of pain episodes similar to TN?
I have so many questions. I guess the first place to start is with confirmation (or maybe just a personal comfort level). I am new. I am scared. And frankly I just haven't wrapped my head around this yet. Your advice please.
It seems, sometimes, that we are all as different as snowflakes in all of our specific symptoms.
I have pain at night. Of course, I have constant pain during the day, as well. But, I have now begun having to take something to help me sleep, or I am unable to do so because of nagging Atypical Trigeminal Neuralgia symptoms of one type or another.
I am wondering if your pain wakes you once you are asleep. That doesn't happen to me, typically.
I hope you find relief from this symptom. I have to take meds, which sometimes, can leave me feeling tired in the morning.
Best of luck.
A very warm Welcome, Leslie! I’m Bob, I have TN1.
So nice to see a ‘newbie’ jumping into the frey.
Good you are here, and I am hoping you don’t Internet “TN” too hard - you’ll find “Tennessee”
I have more of an acute painful insomnia. Whereas, I appreciate most any sleep over 3 hours and 48 minutes; a slight exaggeration, though, I have been know to ‘crash’ for 6 hours, every 3rd week, or so.
My advice is to seek a Neurologist who will do something about YOUR diagnosis.
I hear you on the dental issues, although I have not had any problems with my teeth, per se.
: ) bob
Leslie: Mine came on "sudden" as well, however, looking back it was most likley building for over two years. I have constant pain in the right cheek and heavy pressure on the right temple. I had all of my upper teeth and most of my lower teeth removed about 6 weeks before the major attack. It may have been the straw that broke the camels back, but I would not say that is what caused it. I lost the vision in my left eye 20 years ago and my right eye has been going down hill quickly. That is why I suspect I have had this for a while. My eye is getting worse by the day, and at first the pain in the cheek and temple were only when I stressed the eye. With full blown TN, it has gotten much worse, and that pain is constant. I also beleive that I have ATN or TN2 as it is called. Since my major attack (that sent me to the ER in so much pain I wanted to die), I have had lower level attacks 2 to 3 times a week (a cold breeze is a killer, I have to wear a ski mask to go any where). Oxycodone keeps me out of the ER but I have to take them as soon as I feel the pain coming on. The constant pain is handled by a warm rice bag and asprine (do not know how much longer that will work). Due to the vision problems, most medications and other procedures are out unless I am willing to lose most of what vision I have left. I too have the pressure and pain in the cheek and at times, when I roll over and touch the side of my face wrong, it will wake me up. When they say we don't have the pain when we sleep, I think they are talking about the heavy "spikes" that send us of the deep end, but TN2 is still one of the "undiscovered countries".
My first thought was that I had to have something else, I just could not have TN. However, after all the tests, and all of the reading, I have finally come to grips with it. I hope to move to Florida soon, and reduce the amount of time I have to wear the ski mask just to get a loaf of bread. My wife and I are talking ab
Thank you for your thoughts and advice. To answer the questions, yes I do wake up from pain in the middle of the night. I take a Tylenlol PM around 9pm and then wake up between 1 and 2am with pain. So I take an extra strength Tylenlol and finally settle back into sleep 1-3 hours later. And then I wake up around 6am in pain again, so it's another extra strength Tylenlol to start my day. I have a perscription for Lortab, but it make me really sick to my stomach so I can't take it unless I eat a ton of food (which isn't going to happen in the middle of the night). The pain I have at night is primarily in my lower jaw and right in front of my ear. But if I lay my head down in the wrong spot (which can be a moving target), it sends pain everywhere. Very different than what I feel during the day. Yesterday was my best day yet since the diagnosis. I only had about a dozen episodes of searing pain. The rest of the time, I little to no pain at all. I supposed keeping a Lortab down helped.
I am hoping that the steroids are helping and that I can get back to "normal" this week. I plan to visit the dentist to be sure that I don't need a filling or Heaven forbid, a root canal. I suppose it is possible that one of those conditions could be causing the night time pain, and perhaps could have triggered the typical searing TN pain I have during the day. I am reaching for straws here...this is all so new to me and it's hard to know what to expect...or how to interpret what is happening to my body.
A visit to the neurologist is probably another good next step, but I have to admit that I am holding out hope that this condition will subside this week and not come back...or at least give me a significant reprieve. (I am likely being overly optimistic...and maybe a little unrealistic too, but right now I feel probably like Jerry did in the begining - this has got to be something else.)
In the meantime, I am reading through the blogs and discusions. I fin
Leslie: For the cheek, temple pain, try a warm rice bag and asprin, as asprin is a general purpose inflamation reducer. I only do this if I am not having spikes, with the spikes it is the Oxycodone (Percocet) or the ER if they don’t work. Lortab does not touch the spikes for me. I do take Tylenlol PM when I need to sleep but the pressure in the temple or cheek pain is too much other wise I ride this pony bare. They tryed me on Lyrica, turned me into a zombie, they wanted to give me a shot to the temple to deaden the nerve, but with my vision problems, I was scared that it would also affect my optic nerve so that was a no go. My Doctor is a GP, however he has several TN patients and being such a small town, I suspect that they are all sent to him for care, he knows what it is and how to treat it so I lucked out there. Done the Steroids and they helped for a day or two then right back. My doctor made sure that I understood that there is no cure for this. He can help with meds, he can send me to a Nero for surgery, he can send me to a pain management center for injections or stronger meds, but he can not cure me. As he said, I will have good days and bad days, he will do what he can for the bad days and I should enjoy life on the good days. So when it is good I give thanks, when it is bad I seek help, I just move on one day at a time.