Hello Everyone! So glad I found this group and get to be a part of it! I was diagnosed with TN in December 2013. I've had 4 episodes of Bell's Palsy over the past 16 years and my neurologist thinks this is possibly what caused my TN. I've had MRI's and lots of blood work done to rule out other causes (MS, tumors, etc.) and so far nothing is showing up as an obvious cause. Right now I'm taking 300 mg of Tegretol (one pill three times daily). Over the past few years my symptoms have gone from occasional sharp, hot localized pain (hot nail in head) to a general burning, gnawing kind of pain (like half of head is on fire). Tegretol has helped a good bit but I'm still having breakthrough pain. My regular doctor prescribed Norco for pain before I went to neurologist and found out exactly what was going on. My neurologist wanted to try other pain meds before going to narcotics. He prescribed something called Indocin which has done nothing for breakthrough pain. I do share his concern about becoming dependent on narcotic pain meds so I'm willing to try other things but my prescription for Norco is running out and I'm very fearful of not having anything that works for this horrible pain! Have any of you found any non-narcotic pain meds that actually work on nerve pain? Thank you so much for any info you might have and God bless you!
Hi Robbie, I am new to this group also and I have been looking through to see if anyone has had any luck taking Sudafed. I started having incredibly intense ice pick to the ear drum pain about 7-8 weeks ago. (I have had this pain off and on over the last 20 yrs and this is the first time I have had it start and not stop) My triggers are the worst when I have sinus pressure so I always take sudafed and motrin for that. I have found that taking the combo EVERY 4 hours keeps it pretty under control. I am concerned about the amount of sudafed I have taken over the last 2 months but I can't function without it. At 3.5 hrs after dose the ice pick pain comes back.... so I quickly take the meds. I don't see a neuro doc until next week so until then its all I have to go on. My PCP doc tried me on Tegretol and I had a severe allergic reaction to it... so now I am afraid to take anything but the sudafed and motrin. I know some people are sensitive to sudafed but it doesn't seem to make me jittery at all. I have never taken any type of narcotic pain meds for it... my PCP is very against any type of addictive meds... of course , if he had any idea what this feels like he might change his mind. Hope you are feeling better soon. Jenny (My PCP doc gave me a prescription for the sudafed so that I don't look like a drug addict buying that much sudafed )
Hey Jenny. Thanks for the reply! So sorry you are having to deal with this crazy TN too. Glad the Sudafed/Motrin is working well for you. So far my main trigger seems to be stress related. I've been trying to pay close attention to how my pain responds the past few months and stress seems to play a really big part in the pain returning. I am a stay home mom with two school aged kids, six cats, two bunnies, 3 chickens and 1 snake so my day is usually pretty busy and stressful at times. Not sure how to avoid the stress so I'm just trying to manage it as best as I can for now. Hopefully the Tegretol will help keep the pain from coming back so often and I won't need anything else :) Take care and welcome to the group! Robbie :)
Jen said:
Hi Robbie, I am new to this group also and I have been looking through to see if anyone has had any luck taking Sudafed. I started having incredibly intense ice pick to the ear drum pain about 7-8 weeks ago. (I have had this pain off and on over the last 20 yrs and this is the first time I have had it start and not stop) My triggers are the worst when I have sinus pressure so I always take sudafed and motrin for that. I have found that taking the combo EVERY 4 hours keeps it pretty under control. I am concerned about the amount of sudafed I have taken over the last 2 months but I can't function without it. At 3.5 hrs after dose the ice pick pain comes back.... so I quickly take the meds. I don't see a neuro doc until next week so until then its all I have to go on. My PCP doc tried me on Tegretol and I had a severe allergic reaction to it... so now I am afraid to take anything but the sudafed and motrin. I know some people are sensitive to sudafed but it doesn't seem to make me jittery at all. I have never taken any type of narcotic pain meds for it... my PCP is very against any type of addictive meds... of course , if he had any idea what this feels like he might change his mind. Hope you are feeling better soon. Jenny (My PCP doc gave me a prescription for the sudafed so that I don't look like a drug addict buying that much sudafed )
Wow I never thought of sudafed. My Ear drum is the same but im on 800 mg carbamazepine and 1800 mg of gabapentin. Ive been on them for over a year and honestly they dont work as well as we would like but they DO work. The only problem, at least personally, is that you have to "look" in a sense, for the pain relief. They are not pills that work like a norco, i believe they are even stronger, but it took me about a whole year to understand what kind of pain relief it accomplishes, and I have to take them at the same time 3x a day or my body will beg me for them with terrible pain and nausea.
Its weird being on such a strict regime, and although the relief isnt 100%, it has gotten me out of suffering, into an easy 7 on the pain scale, instead of a 9-10 daily. With My sumatripan for migraines, I have found some relief,
The hardest part is understanding you just have to live with it. At least thats my observation. The journey into doctor land is uncomfortable, but I wish you relief and I recommend not giving up, and possibly (even though the pain is urgent) give the meds time to adjust and also your mind, which is now functioning differently due to managing pain.
Not to mention you can have remission. Hope the best! Naps, heat pads, earphones , its a whole learning experience but its managable.
Last note: I have found that there is a certain threshold hold the pain scale does not account for and thats emotionally. Its very unforgiving especially during a 4 hour attack, just remember to baby the pain like a child, because it will certainly remind you when you or people around you, are aggravating your sensory possibly contributing. Also temperature and overall stress.
Good luck!
Minty green, you are so right about the emotional aspect of the pain! When I have a flare up it's very hard not to be snappy and grouchy with my family and those around me. Thank goodness my husband and kids understand, at least partially anyway, that the grouchiness is not because of them and they help out a lot. Here's to hoping we all get some relief and can enjoy the blessing we do have! Take care :)
Minty green said:
Wow I never thought of sudafed. My Ear drum is the same but im on 800 mg carbamazepine and 1800 mg of gabapentin. Ive been on them for over a year and honestly they dont work as well as we would like but they DO work. The only problem, at least personally, is that you have to "look" in a sense, for the pain relief. They are not pills that work like a norco, i believe they are even stronger, but it took me about a whole year to understand what kind of pain relief it accomplishes, and I have to take them at the same time 3x a day or my body will beg me for them with terrible pain and nausea.
Its weird being on such a strict regime, and although the relief isnt 100%, it has gotten me out of suffering, into an easy 7 on the pain scale, instead of a 9-10 daily. With My sumatripan for migraines, I have found some relief,
The hardest part is understanding you just have to live with it. At least thats my observation. The journey into doctor land is uncomfortable, but I wish you relief and I recommend not giving up, and possibly (even though the pain is urgent) give the meds time to adjust and also your mind, which is now functioning differently due to managing pain.
Not to mention you can have remission. Hope the best! Naps, heat pads, earphones , its a whole learning experience but its managable.
Last note: I have found that there is a certain threshold hold the pain scale does not account for and thats emotionally. Its very unforgiving especially during a 4 hour attack, just remember to baby the pain like a child, because it will certainly remind you when you or people around you, are aggravating your sensory possibly contributing. Also temperature and overall stress.
Good luck!
I relied on anxiety med when needed
Lidocaine face patches…worked fast for 12 hours. Helped my med low dose
Lidocaine cream also!