I am a new member and newly diagnosed. I have started neurontin and had good results. Last night and today, I had two major flares. I am not understanding how the pain suddenly breaks through the medication. I am feeling discouraged. I have to work tomorrow, and I really don't feel myself. I guess I have to learn how to pace myself and do what I need to do.
How many Mg did they start you on. They started me on 300 3 times daily. You may need to call your Dr and get it up…
Hi Pain Mgmt, We're new to TN and this support group as well. Everyone has been so nice and helpful. My mom is the one that has TN, she had a great pain free week two weeks ago. This week, she's back to pain. She's on Tegratol and Lyrica. Her Doc just switched her to Lyrica first thing in the morning, instead of the the afternoon. She's taking Lyrica, Tegratol, Lyrica, Tegratol (700mg together, I forgot to ask her if he upped her Lyrica dosage). Used to be the other way around. I'm worried that drugs aren't going to help my mom. She's always had such a high tolerance to pills. :( I hope you get and find the doses you need to help you feel better. I understand what you mean about discouragement. This group can help you through that. It sucks that you have to work, especially when most people don't understand the pain you're subjected to at any given moment. Good luck to you and many pain free days.
Hi Hayworth,
Unfortunately managing TN pain can be a dance sometimes…it can take awhile to find the right therapeutic dose that works for you. No rhyme or reason as to the “why” aspect of breakthrough pain…
It helps to have a plan in place with your doctor/neurologist on how to increase the med on your own if your pain is worsening. That way you don’t have to wait for an appointment while you’re in pain. Each time you increase it usually takes a day or two for the med to kick in and your body to respond.
Some doctors prescribe a breakthrough pain med like Tramadol to take the edge off.
But in my case that would just knock me out and then I’d wake up with a headache.
Eventually you’ll find the right dose that works for you and the side effects will lessen.
(( hugs )) Mimi
Mimi have you been on gabpentin ? They switched me to that and taking me off of trilpial it was deleping my sodium…
Yes Donna, Gabapentin ( neurontin) works for a lot of people here at LwTN at very different doses. Unfortunately it didn’t work for me, I had side effects I couldn’t tolerate. But definitely give it a go, I hope you find good pain relief.
If you type in "neurontin or Gabapentin " into the search box above right, you’ll find lots of info on it.
Glad you were switched and they’re obviously on the ball monitoring you, I know it sucks to start a new med!
(( hugs )) Mimi
Thank you … God bless
Mimi may I ask what your side affects were on Gabapentin?
i found that even on the meds, you have to know and avoid triggers. when i went on the gaba it was 1800 a day, 600 3 times. but your dr is right to start low and build up.
Thanks so much everyone for your support and suggestions. I increased my dose and have had a better day. I really appreciate everyone taking the time to reply to my post!!
Hayworth, glad you had a better day, hope it continues! 
Donna, I had a really dark “cloud” suddenly descend over me, I’m a pretty positive person, and this feeling was very dark, uncomfortable, after 2 days I knew it wasn’t normal nor was it lifting…I wasn’t myself at all. Saw my doctor and we decided to wean off, and the darkness disappeared.
I’ve never had that kind of reaction to a med before.
Everyone is different and so many people find Gabapentin works well for them.
All we can do is try, best of luck!
Mimi
Hi LJ
Thank you for your reply to my post. I am sorry you are having so much pain. This particular pain takes so much courage to get through. There have been a few nights where it also brought me to tears.I see there is good support here and lots of information. I hope you have better days soon!