I have classic TN type 1 in my 3rd branch. I have been having some wicked breakthrough pain lately. I was wondering if anyone has had success with opioid pain relievers for breakthrough pain? How did you go about asking your doctor? I have an appointment this Monday and I need some advice. I can’t handle this pain all the time!
I am currently on Gabapentin 1800 mg and Baclofen 30 mg daily.
I have had little success with oxycodone for pain. If my shoulders are hurting and tense sometimes it works by settling down the shoulders, when my shoulders are tense my tn is worse and when my tn is bad it makes my shoulders tense, can be a vicious circle. In what i have learned from asking and reading opiods don’t work very much for nerve pain. I would write down all the questions you have for the doctor and if you have someone that can go with you in the appointment that can help with asking questions and listening for you also. I would not be afraid to ask any and all questions. The doctor might change your dosage or change or add meds. I know you are strong and get through this. Research any changes so you can understand what side effects you may or may not have. We are behind you and keep us informed.
You might want to ask your doctor about a topical med made up in a compounding pharmacy.
Write down all your questions.Sometimes I bring in 2 copies because the doctor sometimes takes it out of my hands,Always leave room for answers and have 2 pens handy to write with.
From my understanding, opioids are not helpful for classic TN pain. I have a fairly constant, lower level pain, and I did find Percocet to be helpful when things got bad. It certainly didn’t erase the pain, but it made it more of a “weird sensation” that was bearable, rather than just pain.
What I did figure out though, was that the Percocet was actually making my situation worse. I was having a lot more burning type pain, and pain in the middle of the night that kept me awake for a good part of the night. It became a vicious cycle of taking more opioids to knock out the increased pain, then having more to deal with. Not long after I quit them completely, the burning type pains were reduced to almost nothing. This correlates with new studies that show that opioids do actually increase pain sensations over the long term.
For that reason, I could never recommend them, except in an extreme “pain emergency”. I have actually found Valium to be much more effective for me when things are unbearable. I would encourage you to explore other meds for pain relief, see what is working for others with TN. Sometimes things are additive, every med or thing you do helps a little, but together they help a lot.
Aside from the “narcotic effect” (which is only helpful if you are zonked) it doesn’t actually help pain at all. In fact because it messes with your opiod receptors (confusing term, opiod receptors are a part of your immune system and have nothing to do with narcotics) as Ziggy found out, the rebound pain can be worse than the pain you are trying to ease. Worse, over time some people develop a condition called hyperalgesia and live with constant pain that nothing will touch.
That being said I DO understand there are times when you need something and understand. BTW Oxycodone will have a number associated with it ie 10/325. This means 10 mg of oxycodone and 325mg of tylenol. Believe it or not the more EFFECTIVE pain medication there is the tylenol. As most scripts say one or two every 4 hours, that’s a lot of Tylenol, and could be an answer
I’d have a discussion with my doc and work out a plan.
I have been lucky enough to have my TN reduced to no pain at all using Chinese acupuncture. The other thing that seems to have a huge effect is St John’s Wort. I take 3 tablets a day (make sure you get the good stuff not a cheap brand) and when I get busy and start to forget to take it or not take it as regularly, I get some mild symptoms back. That quickly reminds me to get back on it!! I really hope this helps you too and good luck - such an awful thing to live with. When I first started the acupuncture I was just at the point of booking in for surgery as I couldn’t live like that for much longer - so glad I went down this path instead.
Cheyene: I overdosed and collapsed on Stadol (synthetic morphine) during a particularly bad type 1 attack. The irony is that, as I lay on the floor after collapsing from the drug, I felt absolutely NO relief from the T N pain.
Cheyenne, my neurologist prescribed Hydrcodone after a severe outbreak of pain. I took it for five days and it didn’t touch the pain. I might as well have been taking a sugar pill. Plus, even after only five days taking it I had nasty withdrawl symptoms. Never again.
I haven’t heard of much luck with opioids for TN1, but I do know that they make my constant 24/7 TN2 pain bearable. I am on a low dose extended release oxycodone (10mg) that I take every 8 hours around the clock. I find it works much better than always “chasing” my pain with immediate release formulations. None of the usual TN1 meds do anything for my pain. It is never gone completely, but at least now it’s low enough that I can tolerate it. Previous to trying this, I wanted to just give up. I had absolutely no semblance of a life worth living. But again, I have primarily TN2 with sporadic episodes of TN1…which fortunately pass quickly for me.
I tried it about two years ago and it really did little for face pain and it’s just so strong and a crummy option I would not recommend it. We have nerve pain and that needs nerve related inflammation pain control.
Sorry you are hurting. Wishing a break in it soon.
Same with me.I still have a family doctor who thinks I am taking the codeine to be stoned-but I find it does reduce the pain.Now that I have a larger number of pills that I can take-I find that most days I take less.I find the very best thing for me is being on the beach .Spent 6 hours there today and the pain was in the background of the waves.I would love to get a wave implant in my brain.
I take Tylenol + codein, but not for the tn1. The touchy trigeminal nerve is on the left side of my face seems to bother my eye and cause left side face discomfort. The Tylenol codein helps for that. I take gabapentin for those wonderful shocks that vary considerably in intensity. I saw a neurologist and had diagnoisis confirmed. I didn’t know enough to ask which branch. I see the gp on april 12th. I asked for a marijuana prescription, because the marijuana helps. Its just expensive. Anyway I live with this touchy nerve. So far it hasn’t been as bad when it first started.
I know this is very old, but can I ask if you have classic TN or ATN?