Hi everyone. Sat here in absolute agony not knowing what to do with myself. Been sat outside for past 3 hrs and I’m losing my marbles the pain is just not easing. Been diagnosed a week and don’t think I can take anymore please tell me it gets easier. I have had no sleep for 13 nights and then have to deal with my 2 boys with special needs all day. Just feel like giving up.
Hi Donna27. I’m sorry to read that you are in so much pain. When you were diagnosed were you given any medications to help ease your pain? Sometimes they can take a couple of weeks to kick in. At night I find meditation helpful, it relaxes you so sleep comes easier. Also meds tend to knock me out. I hope you get something to help you through this. Son’t give up. Think of your lovely boys. Mary x
Hi Donna, omygoodness 13 days in pain…go to the ER they can help you until you can find a drug for you. I take carbamazepine. It works, at first you will feel sleepy, you will get use to that, just stay on your feet. I understand you wanting to give up, been there, but yes you have children that need you. Please try to get help with your doctor. I’ve been on this drug for over 10 years, it works and I thank God it does. Please take care. 
Oh my goodness so very sorry to hear you are in such pain with no relief. When I was diagnosed I was given a script for Oxcarbazapine which help pain within about 35 minutes. They will start you on low dose and increase as time goes on and pain returns. You will also need to have regular liver bloodwork done since it is a strong drug. A neurologist is the best doctor to see for this condition. Hope you get relief soon.
I’m sorry to hear of your pain. I wish I could say it gets better, but it doesn’t. After tying about everything, I’m the test patient in Regenexx’s blog on a new treatment for TN. Using PRP (Platelet Rich Plasma Therapy) while still in the trial, I’m pain-free after two treatments… https://regenexx.com/blog/new-treatment-for-trigeminal-neuralgia/
It does take at least 2 weeks for some meds to start working for you. It’s important to keep the lines of communication open with your doctor. Let him/her know how your doing.
Hang in there, Donna.
It can get better . I have been ill for over 20 years . At times with Facial pain and an episode of Ocular Shingles I begged God for Death . But things got better . Treatments were found . Caring physicians and Dentists were found
TN can get better, but mostly it gets different. The first five years I was all encompassed with TN, there was some degree of agonizing pain each day. When I look back at my pain log from years ago (now 10) I don’t know how I got through it. I can say that I learned “tricks”, I know my triggers well and try to avoid them as much as possible. I have found that when I lean into the pain it does not help, in fact it makes it worse (by lean into I mean crying,whining, holding my head etc.). It is better for me to off set my mind, relax my face as much as possible, be in a quiet place away from stress. There are times though that the pain still over-takes and I have to look for sleep to take it away. I will take whatever I have in the house that has the side effect of drowsiness, usually a anti-histamine as well as my usual sleeping pill and as much of my TN med as is prescribed, go to bed early with shades drawn and soft instrumental music playing and wait for sleep to take it away. Many of the TN meds have the side effect of sleepiness, although you eventually get over that. It also takes time to find the right medicine and the right dose that relieves your pain. You can always ask your Dr. for a small prescription of a sleeping pill for times like these when you go days without sleep. A MVD helped me years ago although not to the degree that I hoped it would. Without sounding too preachy I hope, I have learned to put it all into perspective, there are people with other diseases that have it off way worse than I do. I realize that it took me years to get to this point and that you are just at the beginning of your TN journey. Hope this helps a little.
Thank you all for your reply. Still in absolute agony been on the carbamazapine 10 days now. Been to A&E twice spoke to my doctor on numerous occasions, been prescribed sleeping tablets and just awaiting an urgent neurologist referral. Still not slept. Feel like a zombie with all the pain relief I’m taking.
Sorry for your lack of sleep. Have TN2 for 9 years and then got the Virus in March. My sleep pattern was like yours until I was prescribed temazepam, a light sleep helper. Most days it works well. Can fall asleep within a half hour. All my best.
Larry
Been prescribed sleeping tablets but they haven’t worked. At present I have had none stop pain today really don’t know how to deal with it because nothing is touching it. I am sat rocking like a mad woman and don’t know what to do.
See if you can get the temazepam. Also with me, I still need an opioid to control the headaches. Larry
1 Like
Yes, try to get Temazepam (brand name Restoril), it is what I take also. It’s an older sleep med with addictive qualities, but it worked for me when none of the other ones did. Carbamazapine (Tegretol), which I guess is the gold standard for TN, did not initially help me either, so ask to try another med. I think I tried four different ones before finding what helped the most. Years later I added Tegretol back into the mix at a low dose. It can be extremely frustrating in the beginning to find the one that helps the most.
Hi thanks for your reply. They have changed my meds to gabapentin now.
Still struggling with not sleeping and pain at night and now have a mouth full of ulcers which I think have been caused by the gabapentin.
I’ve had TN for 28 years. That same year I had an outbreak of herpes (which is related to shingles) on my sciatic nerve, and I just recently read that it’s not uncommon for herpes to cause TN if it’s in the trigeminal nerve. The sciatic nerve and trigeminal nerve are both on the left side of my body. I told my pain medicine doctor and he had actually heard of it before. It doesn’t matter much but after 28 years it’s nice to know what caused it. Also, I find medical marijuana helps along with other medications.