I just want to inform all my friends on here that my appointment with my neurologist basically was a meeting where we talked about my feelings, it was not helpful whatsoever and the conversation quickly switched from the pain I was in to the anxiety that I have had built up inside of me. I didn't pay for a neurologist to talk about my feelings with me! I will definitely be switching neurologists. I was giving Lidocaine cream and also prescribed citalopram(Celexa), to take for the anxiety from what she described, as I have researched this medication and it does not seem to help people for pain. Another update is I have went to chiropractor today and had a few adjustments to my neck and also my back. I explained my troubles over the past 3 months and he seemed to firmly believe that this is stemming from my Occipital nerves, as it is very uncommon for the trigeminal nerve to cause pain as far up into the head as my pain is. Also, since the only medication that has truly given me relief with as prednisone steroid pack (one that you take so many pills each day over a 7 day period and eventually weens out to 1 pill) he said that this screams occipital neuralgia as the steroid probably helped with the inflammation that was causing the nerve pain in the first place. Overall, this chiropractor has by far been the most helpful as far as information and talking through this situation with me. I have requested an appointment with Peter Konrad of Vanderbilt University and I do believe I will be granted the appointment. I'm just ready to actually talk to someone who seems to know more about neuralgia than I do! It's very frustrating trying to play doctor yourself. Occipital Neuralgia seems to be a different beast than Trigeminal Neuralgia, but the pain seems to be similar. I will have to research this condition as well, it seems knowledge truly is power with conditions like these. I pray every night that I will be ridden of this burning pain in my head. Also, I pray that my friends on here will all be ridden of their conditions, whether they be the same or different than mine. I am sorry to ramble but I feel very lucky to have found a place such as this one that has people who understand what I am going through, hopefully this chiropractor will help and a new neurologist may get me on the right track to relief.
Thank you for the update, hillsdale. I glad you’re getting another opinion with another physician. I had to see eight different physician specialists (not including alternative care providers), before I found help… & I’m in the profession! Don’t give up…
Dear Hillsdale-I have TN bilateral and On. I had a gangliectomy on the occipital nerve in 2011. It worked for a while but the nerves have gradually regenerated. I agree with you that they are two different beasts. My Neurologist informed me it is not that rare for a TN to olso have ON. Before you get a new DR find out how many TN patients they treat. My Dr is booked 4 months in advance but only has 20 TN's. He has really helped me over the years so I am sticking with him. I am his guinea pig to help his other pts. I also see a dr for the depression and anxiety. We are not crazy- but the pain involved in our lives can cause a situational depression. And am I anxious about when the next one will hit- you bet-I am wary of a/c, wind. fans, cold and anything that can trigger an episode. I also feel lucky to be on this site. I would not wish these conditions on anyone-but it helps to know someone out there understands the pain we go through. It is a progressive conditions I have been fighting for about 15 yrs. Just put one foot in front of the other and learn all you can- be your own advocate. Next time a DR redirects the conversation-pull him right back to what you went there for. "Thanks for the infoDoc -But the reason I am here is-----" We support each other and pray for each other . You have someone who is listening to you here. All the very best to you. I would say "Keep you chin up"--but it hurt when I do that.
One more thing to add: it is not uncommon for them to check in with emotions. And while Celexa is not for pain, it os for two important things: depression and anxiety. High anxiety can and will increase pain episodes. High anxiety increases tension which increases and messes with blood flow in your head.
Many of us with TN end up severely depressed. The pain and depression is what leads some to take their lives.
Don’t discount the value of talking about your emotions and treating anxiety. That is just as much preventative.
Have you had a MRI? If not, when will you be having that?
I have had an MRI with contrast and nothing was found. That is why the diagnosis is so up in the air with me and my neurologist. Simply because nothing is showing up on any scans and the fact that my pain is never in my face only in my scalp and the centerline of my head. It really has been a mystery.
Lisa (iamrite) said:
One more thing to add: it is not uncommon for them to check in with emotions. And while Celexa is not for pain, it os for two important things: depression and anxiety. High anxiety can and will increase pain episodes. High anxiety increases tension which increases and messes with blood flow in your head.
Many of us with TN end up severely depressed. The pain and depression is what leads some to take their lives.
Don’t discount the value of talking about your emotions and treating anxiety. That is just as much preventative.
Have you had a MRI? If not, when will you be having that?
I feel for you Hillsdale! I think most of us have been to several health care providers before finding the right one and getting the correct diagnosis. Don’t give up…get a second or third opinion, whatever it takes! Tips; Keep a pain journal and write down questions you have for the doctor so you can be sure you get everything out during your visit. I keep a binder with pain journal, medication list, providers, surgeries, procedures etc. it helps! I take it to every appointment.
Best of luck!
Erica
I can imagine how you feel. I went to a doctor and told him my wife had been diagnosed with ATN and went and got a book and looked it up so he would know what it was. That is very frustrating. I have read where TN1 affects 1 out of every 15,000 people. I guess that means that in a town of 100,000 people there might be only6-8 people with the condition.
It seems to me that one big problem with doctors now is that they don't have time to stick to a case. They will not "take charge" of a person or case. I think it is because the profession has become very highly specialized.
Most doctor's offices have become a medical factory. The idea is to see as many patients as possible in a given amount of time. Doctors know their hourly cost of staying in operation, and it isn't cheap. Some doctors have to gross $500 per hour just to remain in business. Sometimes I want to "tackle" my doctor so he will remain in the room and talk about my problem. When in a doctor's office you are not a patient, you are a statistic.
Erica328. Thanks for a very good tip concerning the journal.
Erica328 said:
I feel for you Hillsdale! I think most of us have been to several health care providers before finding the right one and getting the correct diagnosis. Don't give up....get a second or third opinion, whatever it takes! Tips; Keep a pain journal and write down questions you have for the doctor so you can be sure you get everything out during your visit. I keep a binder with pain journal, medication list, providers, surgeries, procedures etc. it helps! I take it to every appointment. Best of luck! Erica