Hi everyone, i just wanted to get some more veiws and peoples experiences with TN. I was diadnosed a year 1/2 ago with TN, by four different doctors. I have every symptom of TN in all three branches. I have pain 24/7 on my left side of my face which moves around to different spots on different days. I then have excrutiating cycles of pain that happen 1 or 2 times a day, maybe more, still on my left side of my face. I went to the university of miami to have a consoltation recently about getting the mvd surgery, because none of my meds seem to work, or i cant function on them. Tegetrol works but i have to be at a low dose because the side effects are horrible memory loss and i cant drive on it, and i need to take care of 2 small children. As i was at my consoltation my mri that I brought in showed no main artery pressing on the trigeminal nerve, so the surgeon said this operation may not be for me. Anyways, he also said something that has been really bothering me for a while. “He dosnt think I have TN because i am not over 50 years of age and my pain is 24/7 with excrutiating cycles of pain”. The fact that I have pain 24/7 did not make sense to him. Does anyone else have pain all the time in there face, maybe also cycles of excrutiating pain along with the 24/7 pain. With what i researched all my symptoms fit with TN, and it took every doctor 6 months to find my diagnosis and this one university doctor just wants to take it away in 5 mins. without even getting the special sequence mri back or an exam. I need help. Please anybody let me know if they have this 24/7 pain or have had experiences with doctors like this. I go back to the university of miami on Nov 8th for other options and I need to know as much as possible. thanks
Please Kristen do not give up, This condition I do not believe for one second is one that you get with age, when I think back over my life I was getting these pains on odd occassions from my twenties, but I had never heard of TN, when I was first told by my own GP, I had to ask him what it was. I really thought my teeth were the problem. Nothing showed up on my MRI scan before I had my operation, but the surgeon found the trouble, I lost my hearing, but it seemed worth it. What I did not know was that after 2 years TN would return. I intend now to try to find some relief I am due to see some one at Burton hospital in the UK on the 8th December. I hope he is more helpful than a professor I saw who stated that we all have pain. I am now 63 I don’t want to live the rest of my life like this, I have never seen a programme on television about it, it is not well known, people simply donot know what this condition is. We need to find a way of getting it noticed then perhaps people would understand us, and more research could be done to find a cure that lasts.
vein compressions are usually to blame for constant pain. arteries usually cause the come and go type pain. you may have both of these compressing your nerve, which could explain your symptoms.
what is most important at this time is you go to a neurologist, or even a neurosurgeon who deals almost exclusively with neuropathic facial pain. this doctor is diagnosing you based on outdated stereotypes. it is current knowledge that TN can occur in younger people. it is not an older person’s disease.
this doctor is presenting an obstacle between you and proper treatment for your pain. jannetta and sekula in pittsburgh are two neurosurgeons who are certainly not afraid to operate with symptoms of face pain. i sometimes find them a bit too aggressive, but in your case, this might be what you need; someone who has a gung ho attitude. these guys definitely have it.
get your new MRI and seek new care. jannetta’s nurse will get back to you pretty quickly for a consult. or you can come to boston where i live and see emad eskander at mass general, he is reportedly an excellent neurosurgeon for trigeminal neuralgia.
i am not a doctor, speak to your own about what i’ve said here.
vesper
Thankyou stephanie for replying and telling me all that. I am frustrated with this doctor. I thought the best doctors would be the ones practicing at the big university’s, but im finding out different. Your right I need a 2nd opinion! He asked my husband right in front of me if he thought there was any possibility of this pain being in my head! I am just so mad! Well, now I know that having pain 24/7 can be a symptom of TN through your testimony and many more. I think he was mad cause i did not have the exact textbook symptoms of TN. He was an older doctor too, so maybe he wasnt up on the new research they have found with TN. Thankyou for your support, cause your right , the pain is so excrutiating most all the time, i can feel like giving up. but i know i deffintely cant because of my beautiful children. Will go to a different doctor or University!
Stefanie said:
You must find a different MD! My neurosurgeons (I have two, one in Fort Worth and one in Toledo, OH) BOTH told me that TN is a clinical diagnosis. Not all TN is caused by an artery, and not all of the occlusions show up on an MRI even if you DO have one. I have had numerous CT scans, both with and without contrast. They are all normal, yet there is no doubt whatsoever that I have TN.
My right sided pain was constant. Twenty four hours a day of aching, pounding, and pressure, along with electrical shocks every 2 minutes. And this is NOT an exaggeration. I spent all of August and 3 weeks into September as an in- patient at a hospital here in Dallas, hooked up to a machine that gave me .5mg of dilaudid every 6 minutes, because my pain was so totally unbearable that I could not take it anymore.
I had to see 5 different neurosurgeons to find one that would help me, the rest told me "there is nothing I can do for you," and left me to suffer. I am 38 years old, I have a 10 year old daughter with no father, and the type of pain I was in was not compatible with life.
There are so many of us that are under 50, do not have MS, do not have a vessel pressing against our nerve, and still suffer from this horrible disease. It sounds like the MD you saw is very closed minded.
I had my right sided Balloon Compression on October 6th, and I have not had an attack since. I still have to tackle the left side, for which I am going to try the Cyber Knife. However, if I would've listened to the first neurosurgeon that I saw, I don't know where I would be today. Since he told me my pain was atypical (if it really existed at all, he said!) and he couldn't possibly help me. Besides that I was not a candidate for MVD, and Gamma Knife was out of the question in patients like myself with cardiac pacemakers.
My advice to you would be to get a second opinion, and a third and fourth if you need it, until you find a doc who is willing to help you.
And, as I stated in an earlier post, MVD is just one of many options. Not one medication I tried worked for me, so surgery was my only choice. Without MVD or Gamma Knife as an option, I still had many choices as to what I could do to help my pain. Don't give up!
Margret, I totally agree, there is not enough info out there for the public to see. I am so sorry about your hearing from your surgery.I cant imagine how that must feel like, hard im sure. You seem like a real trooper. but truthfully, thats why i am scared out of my mind to do a surgery, you just dont know what can happen, but i guess the alternative is excrutiating pain that I cannot live with that much longer. so, hopefully i will find the surgeon and surgery i need. thankyou for your encouraging words. i will pray for you that you will find something to help you when you go on dec 8th. thanks for your support!
Margaret Gladys Mills said:
Please Kristen do not give up, This condition I do not believe for one second is one that you get with age, when I think back over my life I was getting these pains on odd occassions from my twenties, but I had never heard of TN, when I was first told by my own GP, I had to ask him what it was. I really thought my teeth were the problem. Nothing showed up on my MRI scan before I had my operation, but the surgeon found the trouble, I lost my hearing, but it seemed worth it. What I did not know was that after 2 years TN would return. I intend now to try to find some relief I am due to see some one at Burton hospital in the UK on the 8th December. I hope he is more helpful than a professor I saw who stated that we all have pain. I am now 63 I don't want to live the rest of my life like this, I have never seen a programme on television about it, it is not well known, people simply donot know what this condition is. We need to find a way of getting it noticed then perhaps people would understand us, and more research could be done to find a cure that lasts.
Thanks Vesper for your advice. My next consultation is on Nov. 8th with a neurosurgeon at U.M. who just deals only with facial pain and TN, so hopefully that direction im going in is good. My husband and I have already said we will go where ever I will need to go to get the right help. So, we will see what happens after Nov. 8th. I am actually from MA and have lots of family who live there, so you never know, that might be an option, if florida cant provide me with the help I need. Thankyou for your info and support.
vesper venustas said:
vein compressions are usually to blame for constant pain. arteries usually cause the come and go type pain. you may have both of these compressing your nerve, which could explain your symptoms.
what is most important at this time is you go to a neurologist, or even a neurosurgeon who deals almost exclusively with neuropathic facial pain. this doctor is diagnosing you based on outdated stereotypes. it is current knowledge that TN can occur in younger people. it is not an older person’s disease.
this doctor is presenting an obstacle between you and proper treatment for your pain. jannetta and sekula in pittsburgh are two neurosurgeons who are certainly not afraid to operate with symptoms of face pain. i sometimes find them a bit too aggressive, but in your case, this might be what you need; someone who has a gung ho attitude. these guys definitely have it.
get your new MRI and seek new care. jannetta’s nurse will get back to you pretty quickly for a consult. or you can come to boston where i live and see emad eskander at mass general, he is reportedly an excellent neurosurgeon for trigeminal neuralgia.
i am not a doctor, speak to your own about what i’ve said here.
vesper
Hi Kristen, I have Atypical Trigeminal Neuralgia which differs from typical TN in the way that the pain can be described as a mild aching to a crushing or burning sensation. Its definately described as “constant” and I feel that I’ve never been without it since as far back as I can remember, since I first started getting that “toothache” feeling that just so happened to never go away. It differs to the lightening type pain often described with Typical TN (although some people have both).
Alot of people with TN don’t have anything come up on their MRI’s, and alot of diagnosis are purely done on symptoms - so the advice to get a good Neuro (and a good GP) is a good one. Also, keeping a pain diary is a good idea, keeping track of symptoms, meds, etc is really helpful to take to those visits when you do go (if you’re not doing that already of course - i’m just really pro keeping track of those things! 
This link may help to describe this and other forms of TN
http://www.umanitoba.ca/cranial_nerves/trigeminal_neuralgia/manuscript/types.html
Good luck Kristen, wishing you the best, Susan.
i too have constant pain 24/7. it comes on fast but i explain it more like a wave. i have constant preasure and numbness with little pains here and there but then something or anything will trigger it and pain comes on realy fast and strong but the slowly dies down. mine comes from a vain that is pressing on the nerve. so anytime there is increase blood flow, swelling in sinuses,stress, or even high noises,cold wind, cold drinks, i get more pain! you do and i think always will have spells where you will think “is it all in my head” then you have an attack and your quickly reminded it isn’t. there will always be people that just don’t get it and thats hard cause you feel more crazy. stay connected with this site, if anything it helps you hold your sanity on those bad days. oh and by the way i was 30yrs old when i was diagnosed!
I’ve heard the same thing from my neurologist. He’s been treating me for 6 years as if I have TN. Now, finally, a breakthrough. I started having pain on the other side of my face as well. Nothing we have done has worked…he’s treated me for post herpetic TN, viral syndrome TN, shingles, nerve damage, demyelenating disease, and Atypical TN. Last month, he said to me, I don’t think you have TN, because the new pain isn’t behaving like TN. He said real TN shouldn’t hurt all the time and shouldn’t feel like pins and needles as mine did.
So, he decided to change directions and change my diagnosis to complicated migraine, and put me on migraine medication. At this point, I’m not happy with the way the appointment is going. I’ve been suffering with this off and on now for almost 7 years! I left the appointment stunned - with a prescription for migraine meds and an appointment for yet another ct scan and carotid artery scan.
I was (and still am) stunned that after 10 days on the Topamax, my Rt side face pain is gone, my Lft side pain is reduced by about 70% and I’ve not had a headache in weeks!
I am SO THANKFUL for my neurologist’s insistence…there are lots of different things that can cause the exact same syptoms as TN, but are not in the same neatly packaged medical box called TN. I don’t care what they call it…it’s still swollen blood vessels from a migraine headache irritating the trigeminal nerve. And Topamax is working for me!
Did you have any root canals done? I have had 3 or 4 done. I read that this may trigger the TN. And that it may have been the TN pain and I may have not needed the Root Canals done? My father was wondering if I could sue the dentist if I could prove that I didn’t need the root canals? I have had the TN pain for 5 years now. Kept thinking it was my teeth. Going to dentist who then told me nothing was wrong. I am hoping to have the Gamma Knife surgery done in a couple of months. I need to up my meds because I am in pain everyday again.
I just want this to be over with as with everyone else here. Stress at work really bothers my face. How about you?
Susan said:
Hi Kristen, I have Atypical Trigeminal Neuralgia which differs from typical TN in the way that the pain can be described as a mild aching to a crushing or burning sensation. Its definately described as “constant” and I feel that I’ve never been without it since as far back as I can remember, since I first started getting that “toothache” feeling that just so happened to never go away. It differs to the lightening type pain often described with Typical TN (although some people have both).
Alot of people with TN don’t have anything come up on their MRI’s, and alot of diagnosis are purely done on symptoms - so the advice to get a good Neuro (and a good GP) is a good one. Also, keeping a pain diary is a good idea, keeping track of symptoms, meds, etc is really helpful to take to those visits when you do go (if you’re not doing that already of course - i’m just really pro keeping track of those things!
This link may help to describe this and other forms of TN
http://www.umanitoba.ca/cranial_nerves/trigeminal_neuralgia/manuscr…
Good luck Kristen, wishing you the best, Susan.
Thankyou for your response and info, i was actually thinking about trying topamax.
PK said:
I’ve heard the same thing from my neurologist. He’s been treating me for 6 years as if I have TN. Now, finally, a breakthrough. I started having pain on the other side of my face as well. Nothing we have done has worked…he’s treated me for post herpetic TN, viral syndrome TN, shingles, nerve damage, demyelenating disease, and Atypical TN. Last month, he said to me, I don’t think you have TN, because the new pain isn’t behaving like TN. He said real TN shouldn’t hurt all the time and shouldn’t feel like pins and needles as mine did.
So, he decided to change directions and change my diagnosis to complicated migraine, and put me on migraine medication. At this point, I’m not happy with the way the appointment is going. I’ve been suffering with this off and on now for almost 7 years! I left the appointment stunned - with a prescription for migraine meds and an appointment for yet another ct scan and carotid artery scan.
I was (and still am) stunned that after 10 days on the Topamax, my Rt side face pain is gone, my Lft side pain is reduced by about 70% and I’ve not had a headache in weeks!
I am SO THANKFUL for my neurologist’s insistence…there are lots of different things that can cause the exact same syptoms as TN, but are not in the same neatly packaged medical box called TN. I don’t care what they call it…it’s still swollen blood vessels from a migraine headache irritating the trigeminal nerve. And Topamax is working for me!