I think I am going insane. I keep asking questions to which there seems to be no answers from doctors.
After my first initial TN attack in which I thankfully got diagnosed very quickly and thanks to private medical insurance I had an MRI scan which seems to have come back normal. Thankfully the agonising pain has subsided, but I am left with a strange sensation in my face, exactly where the TN was. Is this normal? It doesn't seem to be getting any worse or better and I can live with it, but it is annoying. Doctors are saying things like residual pain after the TN but are not sure.
Has anyone else experienced this? Does it eventually go? Any help would be appreciated.
I am not sure what you are feeling, but I often have a feeling of numbness and pressure in my TN region. I also had a the sensation of constantly “feeling” my eye. TN affects us all differently, and doctors don’t always get it.
I hope things get better for you!
Christine
That is exactly it. Numbness and pressure. If I press on the area it feels like something should pop, but there is nothing tangible to feel.
Thank you. Does this last forever or does it go away? This is all new to me and finding it all very difficult. I was worried about flying, does the pain intensify with flying?
It could be ATN. I have ATN and my pain ranges from slight discomfort, pins and needles, numbness to bolts, burning, sharp and deep. It can last one second or all day.
I have had this now for 2 months! It's not getting better or worse. Just uncomfortable numbness and pressure.
justjane37 said:
It could be ATN. I have ATN and my pain ranges from slight discomfort, pins and needles, numbness to bolts, burning, sharp and deep. It can last one second or all day.
I have had pain that has lasted for months. When this started it was in one tooth for six months. Also last year I had constant tongue pain for three months. Every single day all day. And numbness and pressure is a good description of it. It did eventually move into another area. I have been dealing with this for two years.
Also I have flown four times in the past two years and it did not affect my TN
Poppy said:
That is exactly it. Numbness and pressure. If I press on the area it feels like something should pop, but there is nothing tangible to feel.
Thank you. Does this last forever or does it go away? This is all new to me and finding it all very difficult. I was worried about flying, does the pain intensify with flying?
This is a very strange disease - everyone feels' it differently yet there are commonalities to it as well.
I too am worried about flying , most of my problems occur during barometric pressure changes . Flying will have a sure effect on pressures . I am planning a trip this spring so I will find out for sure. The recent weather fronts have been wreaking havick on my TN symptoms and though I can tell the Meds are helping to reduce the problems and hold back the pain (some) as well as end attacks faster , nothing seems like a sure fire cure.
I don't always have the 'pressure' on the spot that drives my attacks , but sometimes it seems like the 'Dragon' is always waiting there to bite me !
Do some research and reading up on this disease , there are no easy answers , but information will help you better understand what you are dealing with .
I am very sensitive to changes in weather too. Last winter was horrible and this winter is proving to be the same. I think my med. helps me a lot but some days that pain just charges right through the medication. And even on days that the pain isn't there I feel the same as you--that it's just sitting there waiting to freak out again. I don't have any completely pain free days anymore.
VeteranInPain said:
This is a very strange disease - everyone feels' it differently yet there are commonalities to it as well.
I too am worried about flying , most of my problems occur during barometric pressure changes . Flying will have a sure effect on pressures . I am planning a trip this spring so I will find out for sure. The recent weather fronts have been wreaking havick on my TN symptoms and though I can tell the Meds are helping to reduce the problems and hold back the pain (some) as well as end attacks faster , nothing seems like a sure fire cure.
I don't always have the 'pressure' on the spot that drives my attacks , but sometimes it seems like the 'Dragon' is always waiting there to bite me !
Thanks everyone for helping me. It seems like nobody else really understands, even doctors.
Justjane 37 - The pain is in my left side just under my cheek. It is not the agonising pain I had and it is just so confusing as the MRI scan showed as normal.
I have pain in that location. Sometimes I find it helps if I look at a diagram of the trigeminal nerves when I am having a new or incessant symptom. From my teeth up to my ear. Sometimes it feels like a was punched in the face or like a deep ache. I have all sorts of weird symptoms and strange sensations on my face.
I have bilateral ATN in all three branches. Two years now. I have had two MRI/MRAs come back normal. A lot of us have clear MRIs. They are used more for ruling out other causes, such as MS or a tumor, more so then to diagnose TN. A diagnosis is often times just on descriptions and a history of your symptoms.
And you are right that no one understands. Most Drs have no idea what is going on with us. It took me a year and a half to find a neurologist that even understands and knows what I am dealing with. That's why these forums are so important. I find that all of these invisible symptoms give me anxiety. Finding other people that deal with the same thing is calming and comforting.
For me the pain is worst in my temple area when I get an attack , on my left side only - Triggers are mostly weather - and unfortunately when I lay down - Hard to sleep thru the night without an issue . Also stress has triggered it and laughing a lot . I have been dealing with this for 3 years now and just got diagnosed before Christmas . That is how strange and misunderstood this can be.
Mine's very much like those already mentioned. My right cheek, jaw, roof of the mouth and tongue mostly. Everyday is something new and exciting! Yesterday it was 4 of my top teeth aching in the morning and bolts of ache ( for want of a better description) that took me through the rest of the day. This morning it's my tongue and cheek.
I have ATN as well and have had something going on every day for months too. I also had a normal MRI. Sometimes i think that without this condition my life would be so ordinary and boring. Can you imagine not having the excitement of waking up every morning wondering what your face has in store for you today??
my right side of my face (TN side) always feels different to my left, when you touch it and then move away from it it still feels like the touch lingers, almost like when you press into putty and it takes a few minutes for it to return to its original shape, always have a tingling sensation on that side. its just different, i dont know how else to explain it. the doctors just look at me like im making it up, i cant put it into words. my pain is also made worse by laughing and smiling, eating and drinking if its to hot or cold, biscuits and crisps, crunchy foods, driving seems to trigger an attack. justjane, my pain is almost identical to yours, do you find yours moves around a lot? i get a flash of pain in my temple maybe and then it will move to my eye brow and then down to my cheek then onto my teeth. can almost track it as it moves. catwoman - i honestly cant imagine not having some sort of weird feeling in my face now, it would be strange not having anything there, i cant imagine having a day without any pain at all and find it strange that other people have no pain unless they do something that will cause them pain. its weird how quickly we adapt.
My pain moves around way more then it used to. I have started getting more single bolts of pain--its like a fireworks show. I started having bilateral symptoms a year ago. And it is now in my eye, on my temple and down my nose too. It's all over my face. It is up on my left side eye one minute then down in my right side ear the next. And I have so many different sensations, levels of pain, locations and durations of attacks that I can't keep track of it anymore. It drives me insane. Every single day is different. I find that I don't even wish it would go away any more but just stay the same!
Jane
borris said:
my right side of my face (TN side) always feels different to my left, when you touch it and then move away from it it still feels like the touch lingers, almost like when you press into putty and it takes a few minutes for it to return to its original shape, always have a tingling sensation on that side. its just different, i dont know how else to explain it. the doctors just look at me like im making it up, i cant put it into words. my pain is also made worse by laughing and smiling, eating and drinking if its to hot or cold, biscuits and crisps, crunchy foods, driving seems to trigger an attack. justjane, my pain is almost identical to yours, do you find yours moves around a lot? i get a flash of pain in my temple maybe and then it will move to my eye brow and then down to my cheek then onto my teeth. can almost track it as it moves. catwoman - i honestly cant imagine not having some sort of weird feeling in my face now, it would be strange not having anything there, i cant imagine having a day without any pain at all and find it strange that other people have no pain unless they do something that will cause them pain. its weird how quickly we adapt.
I have said it before - After coming here I felt hopeless - Now I feel lucky . My problems pale in comparison , not that they are easy to deal with . Only 10-12 , 30-45 min episodes a day at worst. I do get breaks in between.
I received My copy of 'Striking Back' last night . And I see why you say it is a must have. Without stretching symptoms to fit , I have all the hallmarks. Read the first 20 pages.
Hooray !! While writing this I got a call from VA for an MRI appointment - Bout time.
Back on topic - LOL @ catwoman , good outlook when you have pain that moves around like this .
I don't look forward to issues or new sensations . I have had my share of migrations and new things Pop up from time to time. For me the 'burning' is the worst . I told my brother once during a bad period that I wanted to just punch a spicket into the side of my head and drain off the pressure. (was having a bad day)
We do have to adapt , and keeping a sense of humor when faced with adversity keeps us sane , somewhat :)
This diagram is awesome, thanks for posting it! I've studied other pics of the trigeminal nerves but this one makes it all very clear how the different branches are connected. A couple days ago I carefully scratched an itch on my chin and instantly had a burning lightening bolt shoot above my right eye. I have ATN on the right side, my symptoms are similar to what others have said already - burning, numbness, aching, shocks and it moves around ... different every day etc.
Sometimes I think I'm losing it because you wonder to yourself ... how can I have sudden extreme pain over my right eye when all I did was touch my chin, it makes no sense but it definitely happened ...
For me the pain is worst in my temple area when I get an attack , on my left side only - Triggers are mostly weather - and unfortunately when I lay down - Hard to sleep thru the night without an issue . Also stress has triggered it and laughing a lot . I have been dealing with this for 3 years now and just got diagnosed before Christmas . That is how strange and misunderstood this can be.