@trigeminalwoman38, I posted a couple replays, but having trouble with my account. Hope you get them, as not many of us have this awful affliction!
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Trigeminalwoman38, Try HOT compresses as soon as you can. I can’t touch my face at first, but holding the hot washcloth very close to my face, and changing it out every minute, or when it starts to loose heat, helps. Pretty soon, I can put the hot compress directly on my face. It’s the ONLY thing that helps me. I still have to take the meds, but I do this for break through pain. I really hope you can find a good neurologist quickly to get some relief. So sorry you have this awful disease!
Dec 3, 2016 · Chronic Pain members - Welcome, please introduce yourself in Chronic Pain
I can’t do PT either,as it REALLY puts me in chronic pain for a few days after. I have everything wrong with my lower back you can name. Every day the sciatic nerve on my right side is so severe, I find it difficult to go out and do basic things. Besides that, now I have Trigeminal nerve pain due to a dental procedure. I get very depressed because I know there is no cure, and the meds I’m on make me SO dizzy. Compound that with the back issues, and I just find life gets so hard some days. I’ve tried epidural injections, but they don’t work. My osteo arthritis is so bad at one joint it’s hard to get the needle in. I’ve had 2 specialists try, and it just didn’t work for me.
I wish I could say it’s a mental thing. When you are in this much pain every day, that’s hard to accept. I still try to be as active as possible and to stay positive. My doctor recommended me to a pain psychologist. She has helped me cope somewhat .
I wish you well!
Hi trigeminalwoman38. I have this and I agree…I wouldn’t wish it on anyone either! It’s the worst pain I have ever had. Right now i think my meds must be working better, because I only have a few sharp pains, vs. the excruciating, sharp, shooting ones that last for 5-10 minutes. I was having the excruciating pains 20 + times a day. I am on carbamazepine . And Gabapentin. I also take 1/2 of a baclofen as needed. The meds take a week for me to work, and HATE the forgetfulness I experience as a side effect . BUT if it helps the Trigeminal nerve pain….ill take it!
I really hope you find a neurologist to help you. No one should have to experience this!
Nov 24, 2016 · Chronic Pain members - Welcome, please introduce yourself in Chronic Pain
My name is Renee, and I have severe Trigeminal Nerve Pain. I am currently taking the generic form of Tegritol 2X a day, along with gabapentin 3X a day ( which I have been on for the past 3 years for back pain). I feel sick to my stomachs, and very dizzy when I lay down since starting the 2nd dose of generic Tegritol. Not sure I have the flu, or if this is common with Tegritol . I was fine with one a day, but pain came back after 2 weeks of being on it. Any ideas or comments about this?
Hi Big Red. I too am having a horrible time with my pain due to Trigeminal Neuralgia. Mine has been keeping me awake for the past 3 nights, so sleep is impossible. It seems like a couple hours after I fall asleep, it starts. Then every hour on the hour, until I get out of bed for a few hours and start moving around. I’m SOOO tired! I’ve been on Gabepentin for 3 1/2 years, 3X day. It doesn’t help. My doctor has me on Tegritol now.JUST started the nighttime does, so hoping and praying it helps! My nighttime pain started a few days ago when our weather abruptly got 20 degrees colder with snow.
I too would do ANYTHING, ever the medical marijuana if it would help.
For me, really hot waster in my mouth on the pain side seems to help SOMEWHAT.
Hi Frank…I have had dry eye for years, and found that PART of my problem was due to the meds I was on. The most troubling was amitriptylin, or Elavil. Check your meds first, as they can be real drying. Especially the pain meds. All day I use Refresh brand lubricant eye drops. I use the vials ever hour or less until I get it under control. I also use Refresh PM gel at night. It’s thick and gooey, and you want this brand only. Also, put it in eyes while in bed or right before, as you can’t see well with it in. I never miss a night! This regiment will take a couple months, but don’t get discouraged! It’s worth it!
Another thing you may want to consider are punctal plugs. They never helped me much, but may help you. Restasis, Omega 3, never worked for me either.
I should say that after YEARS of telling my eye doc I thought I had allergys, as spring and fall my eyes were blood red, I finally found a doctor who agreed. I do take seasonal eye drops, but they will burn like crazy if your eyes aren’t healed up somewhat. I also have lots of inflammation in my body which contributes to this condition.
I feel bad for you, and totally understand the pain. Let us know how you are doing!