Apologies for this being a re-post from the TN2 group...got no responses there.
I was diagnosed with Type 2 TN by my neurologist on January 9, 2012. I have the facial pain that we all experience in some form or another. Mine is on the right side and is often tingling on my chin or near my nose that hurts when I touch it, or intense burning around my right eye, the socket, and my right cheekbone (often due to changes in light levels, concentration, or reading things on white pages with black letters). I also have a constant, non-shifting, one-sided headache that began a month before my TN symptoms and has never left me. It is on the same side of my head as my TN. I feel it from the time I wake up until the time I go to sleep...every single day. It is generally moderate in pain level, but often spikes to intense on its own or due to a TN episode. The spikes only last for a few seconds as jab, I have described them as an ice pick to the right temple or right-side top of my skull. They often will leave me with a warm more intense ache down the right side of my scalp for an hour or more after the jab before returning to my normal, moderate ache that I always have. My neurologist has suggested that it could be Hemicrania Continua (though he is uncomfortable with that diagnosis) or a Chronic Daily Migraine. It does seem to have triggers like a migraine, but is at least responsive to Indocin (indomethacin) like Hemicrania Continua. To put a finer point on it, I have taken several migraine treatments over the past few months in both the acute treatment variety (Imitrex and others) as well as the preventative treatments like Depakote and Topamax...none of them has done anything to the headache except Indocin. The headache is lessened by taking Indocin 50mg every eight hours. The headache intensifies dramatically within an hour of the 8 hour window if I forget to take Indocin (busy at work, napping at home, wake up late, etc.). Additionally, my TN symptoms flare up as well if the same event occurs.
Am I alone in this or do others experience this as well? Please respond if you know about this phenomenon or experience it for yourself.
I should add that I have been to the dentist and my optometrist and my eyes and teeth check out fine. My dentist says my TMJ is beautiful. No traditional headache medicines (Tylenol, Advil, etc.) do anything to this. It does not seem to change with my daily or a change in caffeine intake. It does worsen, both the headache and the TN2 if I try to exercise for longer than 2 or 3 minutes. I can take walks as long as I do not get my heart rate up it seems. I have had 2 CT scans (one with, one without contrast) and an MRI. With the exception of something that two neurologists and 2 radiologists from different hospitals have called an "artifact" coincidentally appearing as a white ring around the trunk of my right-side Trigeminal Nerve, they say my scans are unremarkable. It is all so frustrating.
I'm sorry to hear about your pain. I am a member of this site but I haven't been on here in awhile. I just wanted to let you know, what my experiences have been. I have had TN2 for over 10 years. My headaches finally reacted well to the medication called Relpax, also I found out this past year because of having such severe headaches for a long period of time. That I also have Occipital Neuralgia, I had a nerve block done and it has been so much better.
But everyone's journey through this is different, I am just letting you know, what helped me in my own personal case. Good luck, I pray you find something to help you soon!!!
I have a ring a blood vessels around my right tri nerve. But not your symptom. I do get migraines but not since being on the Topamax.
My neurologist took me off of Topamax since my headache seems to be dulled by Indocin. It never goes away though. I have the headache even during the moments of my day where my TN is not acting up. Those moments, by the way, seem to be getting to be less and less. I kept the burning sensation at bay for several hours at work today, but it kicked in during a late afternoon meeting in a small, brightly lit office of one of my administrators and has not let up since. It is usually, as I have mentioned, just a hot smoldering feeling around my eye, the socket, and my right cheek bone. Today, however, the burning is more intense and it seems to be covering every spot where the Trigeminal Nerves pop through the facial bone on the right half of my face. It is nearly unbearable. I tried to put on a tough face during the meeting and not let people know that I was just barely coping. I came home and slept a couple of hours hoping to make it ease up, but when I awoke it was still there just as strong as it has been all afternoon. I keep catching myself making these deep exhales of breath tonight. I think they are the only thing that is keeping me from curling up in a ball somewhere. I must get some answers when I go back to my neurologist on Friday.
That is interesting how you say the exhales of breath. I have caught myself holding my mouth in a certain way because of the pain. That's the only way I can describe it. I guess it's sort of like a natural reaction to it. Then I try to relax thinking that probly doesn't help anything for goodness sakes!! But I wonder if, you ever asked the management there if you could where sunglasses.. I know that you've discussed that before. But it sure would help some??? I hope for some answers for you too on Friday..
I have ordered a pair of eyeglasses that have a polarized green/grey lens. It will still allow people to see my eyes through the lens, but should shade my eyes. I have not asked permission to wear them into my school, but some have transitions lenses that do not go all the way clear inside our school. On a pain note, my pain level has been so high the past two days. The right half of my face was burning so bad again this afternoon. It is still doing it now. It is like someone poured alcohol on my skin and lit a match. My meds do not seem to be helping with it. So glad that I have a neurology appointment on Friday. I hope he has some other options for me.
Oh man....:( Can you call him and ask for something to get you thru until you get there?? Geez. Or move the appointment up??? Or maybe call your General Practitioner? See if he can give you something....
Day 3 of the intense burning Min. I have still managed to teach all day somehow...I think I am starting to just get used to the pain. I cannot get used to the funny taste on the right side of my tongue though. The sensation is that of having black pepper poured on that part of my tongue.
As for my GP, she would be hesitant to offer me something that might go against the treatment plan of my neurologist since she generally agrees with his diagnosis. My neurologist is extremely busy (always booked), and I have been trying to get my appointment moved up since the end of January. Every time I call he is booked through the next month (I think he is up to April now). I have not been able to catch a cancellation this time. I see my neurologist in a day and a half. I will just bear it until then I guess.
Ever get a funny taste on your tongue like I am experiencing when your pain is high?
Ihave weird tastes sometimes with the medication. But I have some taste loss on the right side. Mostly tho I have had weird smells off and on with this. That has been strange. But I am in remission from that right now. Thank goodness cuz that drives me crazy. There is no norm with this tho. So funny taste is probly cuz of this. Your nerve is not communicating correctly soo it doesn't know what it's doing.....I really hope when you go on Friday you get some meds that are very helpful and things can get soooooooooooooooooooo much better for you!!!