Firstly apologies if this has been covered numerous times in other discussions.
I was just reading your website, and I was compelled to write to see if you can help/advise me. I realise that it may take time to get an answer, but after living with the pain I have, on and off for over 10 years, I can wait.
Basically I want to describe my condition to you to see if it is TN or a derivative thereof, or something totally different.
My pain comes and goes over time, I can sort of predict when I am going to get an attack of it, if I have been using my right arm for any prolonged activity (saying painting a wall, or lifting heavy items up high), then about two days later I get the attack. The pain can come on relatively slowly, other times within minutes, but it ends up in the same place with the same huge intensity. It is centred directly below my right ear, but under the ear, not in it. The pain feels excruciating, even touching my ear lobe is very painful. Moving my jaw, or any touch in that area of my head just makes the pain worse. These attacks can last for tens or minutes, or even a whole day (which makes me think it may not be TN, as these attacks seem to be very short). In terms of getting rid of the pain, I have tried everything. Sometimes ice packs, sometimes hot showers, sometimes even just moving my head and it seems to all of a sudden stop. I can look a right fool having been wincing in pain, then seconds later looking round wondering where its gone. I have gone to doctors, physios, acupuncturists and even the dentist, but no one has either come up with a good explanation, or a cure.
Does my rant sound like TN or even a form of? And if so where do I go from here.
Any help you can give would be amazing, as to be honest I have just given up and decided its my lot for life.
Hi!! Don’t accept this as your life!! Someone somewhere will have the answer!! I wish I knew what to tell you. I do think you should go see a neurologist that deals with TN. There is a list of recommended docs on this site. The pulses of pain definitely sound like TN, and TN is so unpredictable sometimes. I have type 2b so I have the flashes of Sharp pain and an underlying burning, pressure pain. I definitely have things that make it worse, like cold!! It kills me!! It took a year before I actually got a diagnosis and then I still got a 2nd and 3rd,4th…opinion…I just didn’t want to accept that I had TN.5 years later I still have good days and bad but, it is fairly well controlled with meds and a peripheral nerve stimulator. I pray u find the answers you need and can get the pain relief u need!! ((HUGS))
I will take a guess...it sounds to me like it might be related to your back muscles. Your Trapezius muscles stretch from your inner middle back, up along the collarbones, and up into the base of the skull. If using your arm is a trigger, perhaps it has something to do with that muscle group that ends at the base of your skull, near the area you are experiencing the pain. It sounds horrible whatever it is, and I'm very sorry you have to deal with it.
Lisa26, many thanks for taking the time to read my comment and reply.
Lisa26 said:
Hi!! Don't accept this as your life!! Someone somewhere will have the answer!! I wish I knew what to tell you. I do think you should go see a neurologist that deals with TN. There is a list of recommended docs on this site. The pulses of pain definitely sound like TN, and TN is so unpredictable sometimes. I have type 2b so I have the flashes of Sharp pain and an underlying burning, pressure pain. I definitely have things that make it worse, like cold!! It kills me!! It took a year before I actually got a diagnosis and then I still got a 2nd and 3rd,4th...opinion..I just didn't want to accept that I had TN.5 years later I still have good days and bad but, it is fairly well controlled with meds and a peripheral nerve stimulator. I pray u find the answers you need and can get the pain relief u need!! ((HUGS))