I am in unimaginable pain right now...horrible burning pain, worse than I have ever felt before. Nothing at all is working...I have tried lidocaine viscous, ice, heat, oxys, tramadol, naproxen, salonpas patches are covering the entire left side of my face...nothing, not even a slight bit of relief. What else can I try?! I can't lay down as this for some reason, somehow, makes it even worse. I can't sleep period because the pain is just to intense to be able to fall asleep in the first place. I am so hungry but cannot bear to eat. I really need some help...please...I'll try anything at this point, anything at all.
Can you go to the ER?
I can go...but I don't know what the point would be. The 2 other times I had to go for this they sent me home with more oxys and motrin...I don't think they fully understand. Although the oxys are helping now, they don't last long and there is still dull pain. But forget taking anymore, I had 16 from my last ER visit almost 2 months ago and only have 6 left now. I try to save them for emergency's like this because none of my doctors will give me any actual pain meds. Although I have enough Tramadol to last me for the next 10 years...too bad that stuff is a joke and does nothing but give me a debilitating headache and a days worth of vomiting...I am so frustrated...
Are you on any Tn medicines like Tegretol or gabpentin? Maybe the E.R. can give you some to try..Anything is worth trying to get rid of your pain....I hope you go to the ER and they help you!!
I am on 900mg neurontin every night before bed. This is I guess breakthrough pain? Since starting the neurontin, things have gotten a bit better but this particular attack of burning pain is the most intense I have ever felt.
Yes it does sound like break through pain..Can you raise your dosage? Call the doctor and explain that you are having"extra" pain? I have burning pain in my gums and tooth pain..The last couple days I've had horrible pain in my tooth. I had to up my dosage(the doctor gave me the okay) ..It helped...Hopefully you will be out of pain soon!
I am taking Gabapentin with baclofen
adding the baclofen helped me when I started getting breakthrough pain.
You just have to find what works for you and go to the ER for now If you can't get a hold of the doctor.
I agree with what everyone has said and I actually just came back on here tonight because I have been in a horrible flair up for the past 3 weeks and am ready to jump off a bridge. The constant pain in my gums and teeth are making me crazy and nothing is helping me either these days that is why I want that stimulator. I have been on soooo many medications the last 8 years it is sickening. I am now on Fentanyl Patch, Topamax, Opana. Cymbalta and lorazapam. The patch worked great for the 1st 6 months but I think now with the cold weather needs to be upped, but they are so scared to give people anymore meds. They think this pain is a joke or something.
When I used to go to the ER they used to give me a shot of Morphine or Demerol and it would get me at least through the night but that was it. At least I would get 1 nights sleep and wake up feeling like I was drugged, but who cared.
The Topamax was the best medication they ever added. The Neurontin was horrible, I was up to 2800mg a day and was falling all over the place on it. Torodol is a joke too all I did was throw up which made my pain worse of course. I hope you find relief soon.
900mg of gabapentin a day is no where near the therapeutic amount for this kind of pain. I take that much every four hours. You need to talk to your neurologist about titrating up. The ER can only help one episode at a time. You need long term care and a long term plan. Fight for it. This is an illness that is not well known and worse, not well managed a good deal of the time.
It takes a while but the brain does somewhat adjust to the high does of medication but you have to go up in small increments.
I can’t lie down without the pain getting worse as well. Been taking Zoplicone every night for almost five years. Sleep is the only thing that really brings the pain down.
Try propping yourself up with pillows in a quiet dark room and breathe quietly from your diaphragm. A heat pack on your back might help too. The heat is relaxing and distracts from the TN pain. Or, if heat doesn’t work, try an ice pack or cold pack.
Keep a pain diary and make sure either your primary care physician or your neurologist understands what you are experiencing and gives you adequate medication. You may have to try several different combinations.
Hi tiffers 27, I think the ER is a total waste of time, that’s my experience anyway???
I went one time and the triage nurse had never heard of TN, once my husband mentioned nerves (I couldn’t speak) my mouth, lips wouldn’t open…so I couldn’t say anything,
The nurse wanted me to take pills, (don’t think e was listening?)
Anyway, all he wanted to do was get me out of there, because I was making a fuss, being noisy and worrying other patients???, he actually told my husband that if my nerves were “bad” I would be more comfortable at home???
Morphine doesn’t help the pain as such, but at least I sleep, ie No Pain
I have to agree, the ER is not the place to go. Plus, they are limited in "treating" you. The only thing they do is give opiates. If that works for you...then I say get yourself some. What I've found that works the best in a flare are benzo's, or anything that will knock me out and not make me throw up. Sleep is the only true source of relief for me. It's not really a productive state to be in. But opiates make me very sick. I do take Trileptal, Neurontin, and Baclofen 4x's daily. The fact that I'm still missing work and in pain daily makes me think I need to have my meds adjusted. Also, I'm feeling exactly like you did when you wrote the post....my husband asked me an hour ago if I wanted to go to the ER; I just took a couple Ativan and said, "No."
Plus they never find the ear, throat, tooth infections I always feel I must have. I go in there because I feel like I'm dying. There must be something awful happening that requires massive amounts of antibiotics. I always hear...no there's nothing wrong. Sometimes all you can do is medicate yourself, seek out that false state of well being....I hope you find some.
Hi so sorry you are in so much pain. Have you tried seeing an upper cervical chiropractor. I get severe eye pain and headache as well as neck pain with the TN and for me it has helped you can also read about it in the book striking back. Hope you are feeling better you will be in my thoughts and prayers. I’m also seeing a hypnotherapist tomorrow ill see how that goes
I am so sorry to hear of your pain, We all understand it! we have been there. I am wondering if you have a neurologist? What helped me was Dilantin and gabapentin. I really hope you can see a nuero as they do know whats going on, but you have to tell them of your HIGH pain and that you need something an anti seizure med to stop the pain