As I sit here in what I hope is breakthrough pain and not my med not working, I am wondering how I am supposed to cope with this. What if I wasn't at home and I was at work? At school? At clinicals? Driving? What am I supposed to do? If I was driving, I suppose I would pull over and hope it passed quickly. The rest? I have no clue.
I've put enough lidocaine in my mouth that it should be numb, but the pain hasn't stopped. I took 300 mg gabapentin an hour ago and the pain has not stopped. I am ready to take a Percocet or a Vicodin for the sole purpose of knocking myself out but don't even know if that would work. I hasn't in the past.
I have been lucky thus far in school and clinicals that the pain hasn't been too bad and the medication has kept it at bay for the most part. I even did great on my tests last week despite the pain being undiagnosed and untreated Monday and being on gabapentin for the 4th complete day on Friday.
I try to continue to hold conversations even when the pain hits if I'm at school. I try to pretend that everything is okay even though my mouth/cheek/gums feel like they're being electrocuted and throbbing and I want nothing more than to do SOMETHING to make it stop.
The pain seems to be subsiding, for which I am grateful. I hate not knowing whether the pain is just breakthrough pain or whether the medication has stopped being effective. Considering this is only my second week on medication, and my first full week at that, the latter thought terrifies me. I do not like the unknown and if TN is anything other than painful, it's unknown.
Hi student in pain! I was diagnosed in June and I can relate...the emotional toll of worry, panic, and depression adds to the physical pain of tn. Getting as much info as possible is the only way I can cope so I have researched a lot! It seems that many people have long painfree periods in between attacks-- and the meds help to calm the nerve down and stop the flare. Some people have months to years of few attacks...some have seasonal attacks and there are people who have it pretty bad-- it is a very unpredictable ailment. There are lots of meds to try and docs usually start with tegretol or some form of it-- did you try that first?? I am on the generic form-- epitol and it calmed things down pretty quickly-- they say if you are painfree for three months you should try to wean off meds because you may be in a remission. It also seems that everyone is different as to what meds/ what dosages work best to get you to a stable place. I hope this info helps! Try not too worry to much about the future-- you will get through this! There are lots of treatments, meds, and new therapies on the horizon. It sucks to have to deal with this-especially when you are in school-- but it makes us all stronger more compassionate people--trouble has a way of doing that... God cries with us-- and he never wastes our pain- hope you feel better --SOON!!
I'm so sorry StudentNpain, I am also sitting here in pain as well. I just took my first 300 mg neurotin, I have been afraid to take it until now. That's the only med I have, so I thought I would give it a shot. Does anyone know which TN pain it is when your teeth hurt so bad they throb , but you know there is nothing wrong with your teeth?I think it must be type 2, TN. Just had xrays done and they are all fine. Does anyone know which meds works best for getting rid of really bad pain in teeth that are perfectly healthy? Yeah, I agree with the unknown part sucks. I have really been educating myself on this stuff a lot, but it seems the more educated I get, the more upsetting it can be too sometimes. I would feel so much better if I had a good neurologist NOW.
tacocat: I was not put on Tegretol first because of the side effect profile I am assuming. I’ve been on gabapentin since the 11th of this month.
Scared & Angry: I think the type of TN depends on the type of pain? I’m currently to the point where I can’t really describe it. I think it’s throbbing but the pain just surrounds the the throbs if that makes sense? The anticonvulsants, of which gabapentin is one, are supposed to be helpful for TN. Then again, with the way the pain comes and goes, who knows what really is helpful and what is just coincidence?
I did end up taking a Vicodin and am up less than 3 hours later with more pain. I am thinking it has to do with the barometric pressure as it is really high right here right now. When I can think more clearly I want to see what it’s been like the past few days. Right now I just want the pain to stop so I can get some sleep. At least I don’t have class today.
StudentNpain- I am so sorry you are having this much pain. It is the worst. I have been there. Just last Saturday in fact. The vicodin I took wasn't enough for me either. Sometimes you just have to wait it out :(. I would definitely let your Doctor know you are having breakthrough pain like this. You might need an increased dose- although with some medications it takes some time to build up in your system.
Scared & Angry Gal- I am sorry you are hurting too. I wish neurontin worked like a painkiller, but it needs to be taken regularly. Good luck! I hope you start to get relief ASAP!!!!!!!! I also get the horrid pain in my teeth where it feels like someone is trying to rip them out of my head. My neurologist tells me this is classic TN. I hope you find a good neurologist, wherever you are!
I hope StudentNpain is feeling better this morning..... Thank you tacocat and LGHiker for your words of support, it means a lot!!!! LGHiker, can I ask which meds you are on? Does it stop the pain in your teeth for the most part? I can see why folks want to get most of their teeth pulled out , because it really seems at the time to be just bad teeth, get rid of the teeth ,and your problems are over??? not....
Hey Tacocat.... Like your new picture. I love raccoons, used to feed them and their babies all the time at my old house... I heard if the tegretol is to hard on your system, you can take trileptal which has most of the same properties, but not as many side effects. This is what Dr. Casey stated in his 2 hr video on here you can watch. Anyways, hope the neurotin is working for you..... You guys Rock, hope today is a great day for you!!
I’m not sure it’s normal breakthrough pain. I was “fine” all day yesterday with normal amounts of breakthrough pain that the lidocaine solution seemed to dull. I came home from school, took meds, napped, and still had “normal” breakthrough pain. It wasn’t until it was time to take my 300 mg (I take more at night than during the day so I can sleep through) and after that this pain just won’t seem to stop. I still haven’t looked at barometric pressure changes but it is still really high here though on the way down.
Scared and Angry: My dad and I feed cats on the front porch and apparently the raccoons (and possums) like cat food. The picture is a raccoon getting ready to eat some cat food! There were FOUR of them that night. So cute when they waddle away.
Scared & Angry Gal - I had a lot of success with neurontin for many years, but at very high doses (900mg 3x a day). I think the best medication I have taken that has stopped the pain has been tegretol. I am not currently on it because I thought I was allergic to it, but turns out it might have just been anxiety/stress hives (according to my allergist this morning). So I might go back on it because I am having breakthrough pain on the neurontin and baclofen.
studentNpain- Don't be alarmed by the amount of pain you are experiencing. Although upsetting and painful, it is very normal for TN. Breakthrough pain can be incredibly intense and horrific. But again, it is important to let your Doctor know about it. I hate to say it is normal, but I just don't want it to scare you!!
Not an expert but my neurologist is for getting the pain under control & not tapering off or cutting back on meds too quick, then keeping it at bay. I was Leary the first bad attack & wanted to get off pain meds quickly,cause it seemed like a lot.I sense your concerns & the pressure of nursing school. You need to come first which is what you’ll tell your future patients.It’s not an easy thing when you r usually a caretaker personality. Hang in. Mary
I don't ha neurologist right now, just my primary doctor. She's great though. If I keep having this horrible breakthrough pain I'll have to make an appointment and see what she suggests for breakthrough pain when the lidocaine doesn't work. The barometer is going back to normal and my pain seems to be subsiding with it. It's still coming and going though. It seems to be gone more than it was last night though. Progress I hope.
Good to hear that atleast the pain is a bit less than last night...studentNpain..... I used to feed the raccoons cat food as well cuz we always have cats. Raccoons will eat everything...... except fat free hotdogs....just makes you wonder what the heck is in those if even a raccoon wont eat it. anyways , I am wondering, I have been taking 300mg neurotin for a full 2 days now, when can I increase it cuz I am not feeling any side effects from it like I thought I might.....
You may not have reached your "working dose" yet. You just got started and you probably have to increase a few times to get to where you need to be. Be patient and hope it gets better.
Just wanted to let everyone know that the pain is SO MUCH BETTER today. I definitely thing it was the barometric pressure. I even forgot to take my meds at one point today and took them ~2 hours late. What a difference a day makes!
I am really sorry for you I am scared also of loosing my jop I feel that every day is a miracle to be lived : / thanks god I am in remission now, I get back my hope !
Hope you are better now…