I was first diagnosed with TN in August 2014. I wasn’t actually looking for a diagnosis but I was so relieved to get one! I liked when my hands were cold and I used to drink more soda (pop here in Canada) because putting the cold against my face gave my the slightest bit of relief. I walked around with the right side of my face hurting continually most days for three years. I always thought it was TMJ. I did notice it seemed to worsen when my sinuses were more plugged so I thought maybe it was a sinus issue. I thought it was just something else I needed to live with (I also have Crohn’s disease and get migraines). Anyway, I was keeping a journal of my migraines for my doctor. He was determining if I would benefit from profalactic treatment for the migraines. In my journal I had a headache that wasn’t helped by my migraine medication and he asked me what was different about that one. I told him my “jaw” pain was exceptional that day. He asked me questions about the pain and the frequency and he felt my jaw and that’s when he told me it wasn’t TMJ. He started me on a gradually increasing dose of Tegretol and three years of pain went away. I couldn’t stay on the Tegretol as it did not allow me to stay awake past dinner time. I was exhausted by 6:00. I gave the Tegretol a few months and the fatigue never got better. I tapered off of the Tegretol. I started Topomax as a migraine profalatic. I was stayed pretty much symptom free for about a year. A day here and there, but that is manageable. I have had more frequent pain days in the last 7 months or so. For the last two days I had constant pain again. (This morning so far so good). Nothing takes the pain away. At least nothing I’m aware of. I was desperate yesterday. I think it was the worst day I have ever had.
The TN flares up for me when I’m stressed or fatigued. Is this common? Also is it common to feel the pain seems to be particularly bad around one ear? It feels like some is taking a hot log poker and jabbing it my ear. If I even tuck my hair behind my ear the pain is excruciating! (And I have a freakishly high pain tolerance)
I’m thinking maybe I need to look at medication options. Tegretol isn’t an option. The problem also is that most of the meds also make birth control pills lose effect. I can’t do the depo shot and an iud isn’t an option for me either.
I get ear pain on occasion with my TN. I take tegretol and only have minor break throughs. They are gaining in intensity, but so far are manageable. There are other meds, do you see neuro?
Sorry to hear about your pain. I also have ATN and what helped me (and a lot of people with ATN) is TCA class of antidepressants, like elavil or nortriptyline. If you search the forum for either elavil (amitriptyline) or nortriptyline you will find a lot of useful information. These drugs usually have less side effects than anticonvulsants (i think) and they also help with depression. So get two for the price of one :D
That’s how I feel extremely tired almost falling asleep at work, I’m on both of them now and still have flare ups especially when I’m stressed. Feels like a hot ice pick going through my ear into my face under my eye then the pain begins to spread.
I was recently referred to a neuro due to numbness in my hands and feet. I wrote on the form that I was diagnosed with TN and all the meds that I’m taking and the dosages… She said I seem to have nothing wrong. I was actually stunned when she said, “I would say that the numbness could be caused by syphillis or HIV but you would have to be sexually active for that.” Ummm excuse me. You are assuming a 42 year old is not sexually active. You are just assuming that? Because I’m single? OK. I don’t have syphillis or HIV but I really thought that was out of the park. And then she says.Oh do you have a boyfriend? Of course with Syphiliis there would also be a rash…
There is no end to the number of incompetent doctors you will run into. You just gotta keep trying to find a better one.
I dont want to be scaring you or anything, but if you are young (which you are) and you have TN and numbness, I would try to rule out MS with an MRI. There is some association between MS and TN and so i think the neurologist has to try to rule that out.
I also have hands/feet numbness and tingling and so they did a lot of neurological tests on me. Which was all inconclusive, they saw some white spots on the MRI but they said its not big enough to diagnose MS.
But do ask your neurologist about TCA antidepressants, it might be worth the try.
Seems to me I tried nortriptyline once to help with headaches and if I recall correctly it gave me hot flashes like I was in menopause. Maybe I’m wrong. I’ll look into it.
Haach see that’s one of the reasons I was ticked at the neuro I went to see. I went thinking was going to be having an MRI. I was referred for that reason. My gastroenterologist referred me because the medication I am on can cause damage to the myelin sheath. I have been on the medication for 14 years. Last night when I was in intense pain, I told my boyfriend. I know what it is… It’s the syphillis.
Sorry you are having such a hard time. There are actually many of us that also suffer from migraines. I get attacks around my left eye that have a lot of migraine and cluster symptoms with it. It is seriously hell on earth. Ear pain is fairly common and I have that from time to time. I have itchiness and pain deep down in my ear and then the outside gets red, hot and has a lovely burning sensation.
Unfortunately, TN can be progressive and it well known for becoming medication resistant. Maybe you can talk to your DR about an increase on one of your meds? If they previously worked they may do so again at a higher dosage. There is a list of possible meds under the TN Basics tab at the top of the page. I have been helped greatly by Amitriptyline and Nortriptyline for ATN type pain.
It is very common for stress, anxiety and lack of sleep to be triggers. It sucks. It is also very common for TN to come and go. Mine is different pretty much every day. I have sensations that last one second, one hour, one day, a week or month or a year. It just keeps you guessing. It can also move around and affect different areas of your face. Many people also experience remissions. I had one for seven glorious years.
Keep asking questions. We are an amazing source of support for one another.
HI, I had an MRI don and had to have MVD surgery and now I am pain free!! nothing else worked
joanna314 said:
I get ear pain on occasion with my TN. I take tegretol and only have minor break throughs. They are gaining in intensity, but so far are manageable. There are other meds, do you see neuro?
I take amitriptyline for TN pain maintenance and Imitrex (a triptan) for TN/migraine pain -- they seem to go hand-in-hand for me. These may be good options.
Can't really guide you regarding the birth control question. It's a personal choice as to whether you actually need birth control, what would happen if you became pregnant (whether you'd terminate the pregnancy), and how you might deal with being a new mom and TN pain. You'd have to have a pretty good support system in place so that someone could take over for you should you be unable to care for your child on bad pain days. Fortunately, I'm past that stage of life! But I do have a 16-year-old son, and I'm tellin' ya -- There have been days when I was unable to get out of bed and he was on his own. Even at 16, moms still want to be mom! :)
I have a lot in common with you but also a lot different. First thing i would wonder is if the migraines are migraines or are they really muscle spasms in your temples. 2nd thing I would wonder is if you have cause and effect backwards, like maybe the TN causes the fatigue and stress and then you're getting a TN attack, when you track your migraines i would also write down the weather like the pressure, humidity, and any big weather spikes.3rd thing i would tell anyone with TN 1 or 2 is that you have to get on Gabapentin it takes time but it works, and you have to keep building up and increasing. I would also try Soma or baclofen these are stronger muscle relaxers they help so much with the swelling that pounds your face, jaw, ears. And I really get that left ear pain it feels like someone trying to ring out a wet towel in your inner ear and like its going to bleed it's so tight.Anyway hope I could help I've been dealing with TN 15 years.
I have had felt like my ear was about to explode on two occasions. But my TN is flared up so bad and they can't find anything to settle it, since October. I've had it for 24 years so I have taken everything. If none of those work, try neurotin, trileptal (it's easier on your system than tegretol) or lyrica. They worked wonders for me for years.
I have ATN and the anti sez meds didnt help me made me worse so i tried the tricylic anti dep. For my pain which works 75 mg a day maybe something you can try