I’ve read so many times about how TN is worse than labor or as bad and I can only comment on my experiences. I only made it drug free through labor for about 27 hours before I gave in and got the epidural. And then I thought, why didn’t I take this to start! But I realized when I’m having an especially bad episode that is almost constant for days at its worst, the TN1 pain I have I can tell it’s coming even before it gets really strong and then it just builds and builds and builds and lasts for about two to three minutes where I am just having on and then I will get a break. My face will relax. I will thank god and the trees and everything around me for the break in pain and then I will feel it coming again. It’s so much like labor in that way. Does anyone else have that experience?
I just had the second worst time since I got TN in the beginning before any medications. I had to get a tooth pulled because it was very infected. And stupidly, I went on with the change to methadone to a new drug Nucynta a couple days later. I realize now how badly dental affects my TN. I have to get two more caps and we were going to do it in two sittings but I can’t go through it again twice. I barely made it through the last time. The only thing I’m holding onto right now is that it’s gotten so bad because of the dental work and that is why. That this isn’t going to happen all the time. Because honestly I don’t know how to do pain like that everyday at level 10.
I’ve only given pain a 10 twice in my life and i had endometriosis for 30 years, five surgeries, migraines, herniated discs. I was saving the 10 for the absolute worst pain I could think of.
I don’t know if the doctors believe how bad it is because I don’t like to go to the ER. I don’t yell when I am in pain. I sit as quiet as I can. It’s the only way I can do it.
But I don’t think it’s possible for anyone to understand being in this much pain. I’ve cried more in the last four months than I think I have in the last fifteen years. I have a 7 year old. That’s what bothers me the most. That I can’t be there for her like I’m used to being.
Well I didn’t mean to write all this. Guess I had a lot on my mind. I’m just so happy today isn’t as bad.
Well, I’ve never had a child so I can’t speak to labor pains but I do experience the building of pain.
I have ATN which responds strongly to meds, especially lidocaine. I’ve learned over the past three years or so that if I even think my ATN is starting to flare to slap a patch on immediately. This often cuts the flare off.
Since you have migraines, galimatias, as do I, I will liken it to treating your migraine the second you think you feel it or have an aurua. The faster I treat the chance of ATN the less painful the flare. Just like treating a migraine up front can reduce it. Make sense?
If I don’t treat it immediately it will slowly build and become harder to treat, much like a migraine does.
Hey azurelle, thank you for your response and I appreciate your answer. Unfortunately so far, I’ve had almost constant pain since late November. I have both TN1 and TN2. I know the last week was especially horrendous because I had to have an infected tooth pulled. But other than that, I haven’t been able to determine any flares. The constant burning gnawing from TN2 never goes away and the TN attacks vary from 50 to hundreds of times a day. I am trying everything I can pharmacologically. I think I’m on every drug ever created and also doing integrative medicine: nutrition, massage, reflexology and acupuncture. I have one more session with the Dentist. I pray it calms down after that and then maybe I can find flares.
Sorry if I repeated myself. I forgot all what I typed earlier.
To qualify a little, even though it is pretty much constant. I do have periods of time where I would give as low as a 4 but that’s on so much medicine. I just can’t do the level 10 for a week at a time with hardly a break. If it was like that without giving me a little break, going down from a 10-6 or 4, I don’t know I would do. I’m so terrified of it staying like that all the time. I don’t think I’m strong enough to do that. I don’t know how anyone could.
I encourage you to try a lidocaine patch. Cut it into strips and run it along the nerve branch that’s causing the most ATN pain.
This will not resolve the pain, not when it’s so very entrenched for you (and I’m so sorry to hear it). But, it’s an anesthetic so it may calm the nerve in general which may in turn lower the overall pain level.
You can pick up SalonPas at almost any American or Canadian drug store. It has 4% lidocaine and prescription strength is 5% so I think it’s certainly worth trying. By cutting it into strips you can leave it on around the clock, too. The directions to use 12 hours on/12 hours off are for the max dose of 3 patches a day.
Thanks azurelle. I’ve been so scared to touch my face but have been able to more and more lately. I was never actually sure if the touching was causing an attack or if was just coincidence because they were so common. I tried this a while ago and it didn’t work but I think it is time to try again.
Last night, I got hit again so badly and I was just sitting there still as could be and I couldn’t take the pain. It was so much, for so long, at such high intensity. It’s been like this since the tooth pull for 3 weeks. I was having those number 10 attacks one after another. And I remembered how chewing helps sometimes and it went against all my instincts but I picked up piece of gum and chewed the hell of it and the pain didn’t go into face. It stayed in my teeth. I swear I felt like I had discovered the next world wonder. The next attack, same thing. By the third and fourth it had even lessened. Omg, if I can actually find things to do that help and as simple as chewing gum, I will be the happiest person in the world.
Right now it is more achy and gnawing tiny shocks. I think a perfect time to try what you suggested. I will let you know.
It’s funny or sad or both because I know I knew gum had worked before but I forgot. I think it might be because the pain is largely in my mouth like a toothache so last thing you think of with a cavity or a root canal is chewing gum. Also because I handle pain by getting as still as I can.
Ha ha! I did my masters thesis on Tegretol, it was awful! Chewing triggers pain for me. I couldn’t chew gum… I have to be quiet when I’m maxed out too. I can’t handle the stimulation and noise makes me a snap case. Mentally, I work on relaxation through breathing, similar to the birthing process… I have an imaginary boat where I spend imaginary money outfitting it. The more details, the better! It keeps me from crying and feeling sorry for myself. The shocks I get last about 2 -3 minutes that is located in my ear, eye, teeth and half my tongue. On top of that I hurt in the cheek all the time. Many prayers for healing and relief for you. I’m going on three years so… Nice to see you join our group. Lots of knowledge here. Take Care,
Linda
galimatias, thank you for the suggestion of chewing gum! Since my TN1 phased into TN2, I have discovered that talking relieves the pain. It is hard to start but after a while, it stops hurting. My problem is that I no longer work and I live alone. Hard to talk much when I’m alone. I am not a gum person but I plan to run up to the store today to buy some gum. This will help when I need to eat something as that can be quite uncomfortable. I also want to thank azurelle for the SalonPas suggestion. I will be trying that to see if it helps.
I have also discovered that when I feel like the pain is coming, just laying my hand on my face seems to help to lesson or stop the pain. Don’t rub your face, just place your hand on it and keep it there.
I am grateful to all of the contributors on this site as they have offered up many suggestions to help cope with this pain. Thank you all!
Oh wow Linda, I think I would enjoy reading that about tegretol. When I was first diagnosed back in December after a month of root canals and tooth pulls, they put me on tegretol and ended up hospitalizing me. Eight days in after my nurse my nurse decided on her own not to give me my pain medication. I was crying sure the night would be hell but the tegretol kicked in that night of all nights and omg it may be an evil drug but i loved it.
Ten days later I was back in the hospital because my sodium was so low bc of the tegretol my internest said I could have a seizure. I didn’t want to go back to the hospital and she is far from a warm and fuzzy doctor so when she said I’m really sorry, I knew I was in trouble. They wanted to cut my dose in half. I begged like a heroin addict to be kept on it and only way now is for me to take 6 huge sodium pills and limit my water to 43 ounces a day. It’s ridiculous and my pain is far from controlled but it’s jusr been at such a high level there’s been hardly time to go in and rethink things like that.
I just want it to get it controlled to where I am not in misery 75 percent of the time and can actually function and not have to rely on all my family to do everything. I am so happy when I get any relief I just want to forget about the pain and jump back into life. I don’t expect to be pain free but I can’t live 7-10 all the time.
Ss last night I was back in the ER and I thank god i had an amazing kind doctor. He tried the Buprenex which I’ve used in emergencies twice before well and it DID NOT WORK. I knew opiates like dilaudid would do nothing because they tried that in the beginning. He researched and found how to administer Dilantin in acute cases. And it was like heaven. I mean, I was euphoric. Euphoric from just in less pain. I went down from a 10 to a 5 to a 3.
Then he even wanted to help me until I saw my pain doctor doctor on Wednesday. He said, what would work? Morphine? Fentanyl patches? I didn’t think so because the Vicodin and dilaudid had done nothing and I always hear traditional opiates don’t help. So we decided I should stop the Nucynta that has had me in ER twice in last two weeks and go back on methadone for now. I still had some at home.
I’m disappointed because I wanted to get off the methadone but I really tried to make the Nucynta work and I have been in so much pain plus can’t sleep well or been eating well either. Doctor really said Nucynta was like gods gift. not for me I guess.
Also what I meant before typing a book is I’ve been thinking a lot about trying to find calming ways for myself too. I know I need that and it will help. I like your boat image. I’ve always been so bad at quieting my mind that’s why I like to move around. Well, times change I guess. thanks for listening
Galimatias,
I get pain like that too, and when the attack first comes, I get a PTSD type reaction, fearing how bad it might get, and how soon will it get to that level. This pain is so bad it’s traumatic, so I am fine with calling this fear PTSD. And yes to the spasms and the slight relief every few minutes, like labor.
The myth of morphine not working on nerve pain is not true. For some people that may be the case, but for most, we could not survive without it. Vicodin is relatively weak, and I was taken off soon due to the acetaminophen in it that messed with my liver. Dilaudid does nothing for me, and interestingly enough, my daughter got her DNA test done, and one of the results was that Dilaudid would not work on her, and that gene came from her mother. (me). My mom and my brother and I all had the same reaction to dilaudid. And last ER visit, they gave me Dilantin IV, and it worked! Like you! Most of us take a combination of a few meds. A pain killer, an anti-seizure drug (I can’t take them), a muscle relaxant for the spasms that make the pain worse, and sometimes an anxiety drug, not for anxiety, but because it calms the over active nerve. I am on morphine and the anxiety meds, because my pain is severe enough to stop my heart, and has done so a few times, so my medicine is preventative. Methadone is also an opiate, so why not try one that works? We can get dependent on it, meaning we have symptoms if we try to get off too fast, but only 4% of people in severe pain get addicted. It might be tough for your Dr. to get you strong opiates at this time, with all the new rules around pain meds, but it’s worth asking about. I have also talked to so many people in support groups who are using medical cannabis for their pain and they are quite happy with the results. There are many ways to ingest it if you don’t want to smoke it, and many different strains that will offer relief for different symptoms, so when you break it down into strains for symptoms, it truly is just a natural medicine. I can’t take that one either, but I hear a lot about it. Maybe you have that gene that my family has that dilaudid doesn’t work. It’s worth trying morphine if your Dr is willing to help. Fentanyl patches did nothing for me because my pores are so fine, nothing got absorbed. After 3 days it looked like all the medicine was still in the patch.
Best wishes
Sheila
something that helps me : peppermint essential oil - one or two drops - mixed with with five, six drops of almond oil . Rubbed on the area that hurts the most .
You might try it …
Succes
I call that kind of pain a Trigeminal storm. While I’m in pain all day, there is a difference when the hits are every 3 seconds and all above a pain level 5. Best thing for me is preventing them. Stay away from multiple triggers. But, when I do have one, I have to go to urgent care for a shot of Demerol. My urgent Care has my records, they know my history, I only go about twice a year.
The last time I had to have a tooth pulled (I’ve had to have a few teeth pulled over the past two years) I told the oral surgeon that I was experiencing an episode of TN pain and was frightened that the extraction would make it worse. I always go under general anesthesia and she gave me extra. While I still had TN pain afterward it could have been much worse. I imagine if you’re having crowns done you can’t have general anesthesia but nitrous oxide is a good alternative. along with Novacaine, it should relax you enough to withstand the pain and fear you have during the procedure.
Sheila, yes definitely it is like PTSD! I do know because I have experienced that as well. When you have have experienced pain so severely from TN, the thought of it coming again is terrifying. I try so hard not to let the fear overtake me because I don’t want that to feed into the pain.
I have recently had some really great days though. I went up on both topamax and baclofen. I’ve just reread my messages above and they are hard to read. I was in so much pain I didn’t know if I was going to make it and the only thing I kept thinking of was my beautiful 7 year old daughter and even now tears stream down my face. It is so intense for me. I was able to play outside with her twice in the last week which is a lot for me. I’ve been so disabled from TN since November. I am so hopeful about this new relief I am getting and so thankful, just so thankful. But I am so terrified it will come back like before and I don’t know how many times I can have my hope broken.
Massangelien trigeminal storm is the perfect name.
And Karen, ugh I have to get five more crowns down. It will be a five hour appointment. Three more are on my right side. I decided to do it all in one go. Then I am done. All my teeth on my right side will either be gone, have crowns or root canals and should never need any more work.
It’s next Thursday, I am so dreading it. But if I actually am doing well until then I can remember it will end. It’s so different knowing it will end. I don’t think people understand what that is like. To go through level 7-10 pain for weeks at a time having no idea if it’s ever going to end. And your friends and even family either get sick of hearing about it or don’t understand or say things that hurt. Only you guys understand. I am so thankful for you. You will never understand how much you’ve helped me.
People have no idea how lucky they are. I am not expecting them to of course, I never did. Even when I had endometriosis for thirty years. At least I had breaks. With trigeminal neuralgia you don’t get breaks. It just keeps coming and coming and coming.
I’m sorry I’m sure this is hard to read. God with the all the medications I am on and the pain I know I don’t write or speak as well as I used to. It’s very frustrating to me.
Oh goodness. I wrote a book again. Ok, goodnight everyone. I really really hope you find yourselves as painfree as you can.
Galimantas, I understand everything. Three years ago I started an online support group for people in chronic pain. So I would have a place to share my feelings honestly and I could help others. Anyone that wants to learn how to do something like that, let me know. There is true Joy in service to others. It really is one day at a time. I have to take Dr breaks. While I’m always looking for a treatment or a cure, sometimes I have to take a few months off and just be.
Oh Massengalien that’s wonderful, I’ve written a few articles and then pieces pieces online about chronic pain and it’s been so helpful to me. I completely agree there is true joy in helping others. I’d love to know about your site and do what I can. I wish I wasn’t so limited but I do know if I do find some relief, I will want to find a way to help people who were In that dark place I was.
not for me I guess.
thanks for listening