hi htag,
hmmmm doesn't sound like a headache due to the fact it started while chewing, which is a trigger and the different sites it is causing pain. the flame thrower up the nose thing ( i call it the hot poker shoved up my nose pain) ugh, been there still have these occ. during cold weather more due to the cold air. warm scarves help with this. my dr prescribed lidocaine spray for up my nose which helps numb it.
i have had so many unnecc (as many of us have had) dental procedures, chiropractic visits for a year, ent, allergist, four different neurologists, nerve blocks, meds, alternative therapies blah, blah blah. this is such a hard process.
i thought i had migraines since i was like 5-7 yrs old and could never figure out why the meds didn't work to get rid of them. then i kind of went "chronic" seven yrs ago and read about tn and the pieces fit the picture and i figured out i wasn't having headaches but facial pain. i actually have atypcial on left side. up the nose around eye, temple, teeth, gums, jaw etc can all flare up caused by triggers, like cold or hot food, wind across face, bright light,etc. like for yrs i thought some of my migraines were set off by bright light but i squinted in the sun then i got this horrible pain in and around my eye and i would be in so much pain i would throw up. now i wear big holly wood sunglasses that shield me from squinting. things kind of start to dawn on you like if i wear sunglasses why does the pain stop? because you aren't squinting kind of thing.....
try to avoid all the nasty triggers and stress and rest! rest is so important. the last two are hard for me but ya gotta do it or you are the guy who suffers. like i have to choose do you want to go out for dinner with hubby and talk and chew etc or talk on the phone to friends. so i have to set priorities and take the cream off the top and i also do better.

have you had an mri or mra to look for and rule out certain conditions? are you near chicago? my dr at northwestern memorial hospital, chicago (a teaching hospital) is sooo good he is a pain spec, neuro surgeon and a lot of other letters behind his name. he knew exactly how to help me since i was at the end of the medicine road he did a motor cortex implant and it worked ( doesn't for everyone and it is not a cure but it helped) and he had all kinds of ideas none of the other drs heard of or knew about. he got my meds straight too. it's not that most neuros are bad just they have very few or no patients and or patience with this condition. in the u s less than 200,000 people are affected by this or subtypes of this rare disease

so my dr sees a lot of these neuro conditions and after two yrs of no help in southern indiana i researched looking for where drs deal with this all the time. best thing i ever did. i got the help i needed and after a couple of surgeries am on less meds, can function more and managing this disease much better. you see i learned you need to find bigger facilities with drs who have lots more patients so they are the drs who have all the experience in facial pain.
yes these meds can make you soooo tired and lots of other side affects so everyone has to find what works best for them. i would say it took me a month or two to adjust to the meds. then if my pain wasn't under control we would try something else. at least i felt i was working on getting better and not walking from the bed to the couch like i did the first two yrs before i got help.
now that time has gone by i have found the three meds that work best for me (along with the surgery i had four yrs ago now) sometimes referred to as your "cocktail" because it often takes several different drugs to manage the pain.

what kind of shots are you getting in your face? sounds horrible. if it helps it will probably only be temporary like nerve blocks.
read all you can on the trigeminal neuralgia site. there is also a good book called striking back that has loads of good info.
also journal everything so you can walk into drs office and they will be able to get a better idea of what is going on. you can't possible remember all that happens between appts. i always forget things if i don't write them down.
i am glad to see people asking these questions and looking for help on this site. i wish i would of been here when my pain got nuts seven yrs ago and could of avoided some of the dead ends of care. so i hope everyone keeps sharing and giving hugs and support to all who need it.
blessings for pain free days for you
jady.

Thank you so much for your very detailed advice. I must say, I feel a lot less crazy after reading this all. Oh, and it was supposed to say, "the pain started in my EAR, not Eat". lol. Again, the meds. I was so tired when I was typing that all. I'm mostly relieved that you had/have the EXACT same pain that I started with... nostril, around eye, to the temple, and down jaw thing. At first my Neuro though I had Shingles, but my Herpes titer came back negative; again, the pain is always consistently jabbing me in the ear and never goes away. It always radiates from there up or down.

All of my symptoms started this summer when my FIL was on hospice and my MIL was suffering extreme dementia issues due this. I thought I had sinus infections (I suffer from chronic sinusitis and asthma), and ear infections because I was in so much discomfort. I didn't have the typical "tip my head forward and my face would hurt" sinus infections though. My ear throbbed, and the doc would tell me that it was fine and give me motion sickness pills because I was so off balance when I walked due to the pain. My dentist has capped teeth for me thinking that because I grind my teeth, I've caused fractures that he really couldn't find on Xrays. After my FIL passed before Thanksgiving, This is when I developed the 5 day "migraine". I kept telling my GP that it wasn't my typical migraine, and that I usually throw up and end up in ER right of the bat due to the pain. I told her this was just so strange because it was lasting so long and only on one side of my face. I had nausea, but I could eat and I wasn't hurling. Thank goodness she sent me to a neuro. I couldn't get out of bed either. I was doing the exact same thing you were, getting up and going to lay on the couch. I had to take Tylenol with Codiene to get any peace of mind and sleep. *sigh*, yup, I'm so glad I'm not feeling so crazy anymore.

I'm at the acute phase right now, thankfully. I know this progresses, and I'm glad you told me about options. I did have an MRI and it came up clear. I know that MS can be another "complication" of this as well.

Thank you for your kindness. I can't stress enough, I'm SOOOO glad I don't feel so crazy now. :-)

Hi there. I'm in the middle of my second flare. Haven't had any trouble for almost 5 years. This flare has been much worse and much longer than the first one. I hope your flare is short and as pain free as possible!
As far as the tegretol goes, I am having trouble with side effects myself. You didn't mention your dosage - have you been able to stay on the same dose, or are you seeing adjustments? I have been doing tons of researd on the side effects. As you may have already been told, drowsiness is certainly one of them. I can sleep for 11 hours and still be ready for an afternoon nap! My neuro nods and says "yep". He's a good guy, but he's heard that before! I'm on a relatively high dose though, so...
It's wonderful you've found a doctor you like and trust. That is certainly half (well maybe a quarter of ) the battle right there.
Good luck!

Happytosmile, I totally agree with you on the sleeping 11 hours and still nap (consistently for me) during the day. I was so bad that I couldn't drive anywhere that took more then 20 minutes to get to because I'd start drifting off at the wheel. Not cool. I was just starting out on the Tegretol at 200 mg twice a day. I was on it for three weeks and was grateful I had vacation days from work for two of them. I am now on my second day of a new med Lamictal (I think). I have to ramp up the dose every two weeks and pray this one doesn't knock me out.

I have read that the occurrences start off few and far between and intensify as time goes on. I also read that the occurrences last longer. I'm not looking forward to that as five days, and a lingering two days on and off after, about put me over the edge being trapped in my bed unable to get up due to the intensity of the pain.

I do love the Baclofen, and have already been taking the Naproxin. The Lidocaine cream doesn't seem to help much but takes some of the edge of pain off. Only time will tell. I guess we are the lucky ones to have a diagnosis as opposed to the ones still suffering. I'm trying to look at it in that light at lest. lol.

Dear htag,

Yes, I am sorry to say that it does seem like you have TN. I myself, and I think that also most of us diagnosed with this, have had this same horrible stuff to a greater or lesser degree.
The bright side is that it often goes into remission for days, weeks, months, and even years. Maybe your time is coming soon. I hope so.
Yes, I also take tegretol(carbamazepine). It gave me my life back, I feel. I had nausea and extreme sleepiness with it at first. I worked with the doctor, and halved the dosages, taking them with whatever food I could get down. The nausea passed, but I do have to remember to always take the pill with milk or food, if possible. The sleepiness, well, to the best of my memory it lasted about a month or so. Now I take 200 mgs twice a day. That's all I take. I work a full job and have a full family life, with no sleepiness. This is all I take now, and the pain is covered almost all of the time.
It sounds like you have a very good doctor. Did you have cortizone shots in your face? That's what I had, twice. They really did hurt, and I was weepy for the rest of each day... but they worked GREAT!
My doc said that there is only a course of three treatments with the cortizone. I only needed two, and I have never been in as bad a pain again.
Everyone is different. But, I know that you have lots of reason to hope. There is lots of help to be had. I hope you feel better soon.
Praying for you,
Dulcinea2

Sadly, I was so out of it, I forgot what shots I got. lol. They only worked for 24 hours though, so I was quite disappointed. :-( Thanks so much for your prayers, this means a lot to me.

Yes, I had a ton of nausea with the Tegretol as well. I'm glad it wasn't in my mind. lol. I've just felt so out of sorts with this whole diagnosis and all of the new treatments. I already have an array of medical issues as it is, but to add to my large cocktail of meds already is just insane. I have alarms set on my phone so I don't forget to take my meds because I have to take them ALL DAY LONG! Mostly because two of them require me to fast. ugh. One of which is Nexium for my GERD, so I can't take anything with that one. *sigh*. I'm finding my way though. It's nicer to know I have people to go through this with me, even though I wish this on no one.

Jady,
I live near Chicago. I'd love to hear more about how you progressed. I'm so nervous they're just going to send me on my merry miserable way. I cannot handle it. I'm going to end up in my parents basement with my 2 kids if I can't get this taken care of get back to work. I don't trust my neuro - need to switch anyway. Just not sure how/what to do. Sleep deprivation and constant pain make a mess of your decision making skills!