In so much pain. Meds for increased last Tuesday so I I could be weened off one slowly but I haven’t even started with the decreases phase yet and out of nowhere a full on attack kicks in… Been dealing with it since yesterday morning. The pain just keeps getting worse. I only have a small amount of pain pills so I’m trying to ration them but I had to take one before I went to bed and now I just woke up at 3am in pain and took another at 330… Dr office doesn’t open til 9. Trying to breathe through this attack but it’s killing me. I hope I can function tomorrow because I don’t have any sick days left for work 
we need a cure ;(
YEs we all need a cure for this, for sure. I am so sorry you are having a rough time, I am as well and know how bad it sucks. Usually RX controls pretty well, but like you even increase dosage is not totally helping. Thinking of you, hope your Dr can help today.
Betsy
Wendi, I am so so sorry that you are going through this. I have been right were you are. It hurt to close my eyes so imagaine trying to get some sleep. It was frustrating but it passed. I am not taking anything other than tegretol and just started using lidocaine topical ointment today. But we need to pray for a cure and for more research to be done on this disease.
What are you taking for pain?
I'm not sure where you're from but you should look into any doctors in your area who practice prolotherapy. My sister has trigeminal neuropathy. Her pain is a constant, ongoing, never stopping pain. She has it in all three branches and when it's really bad her right eyebrow actually droops down. She was diagnosed in 2009 after seeing a TON of doctors, neuros, pain specialists, Endotonists and she even drove to and stayed in Arizona at the Mayo clinic for two weeks. After a whole lotta money, time (3 years) and immense pain she was introduced to a doctor who practiced prolotherapy which is typically used on neck, leg and back chronic pain patients. She started getting injections in Nov. 2012 and by Feb. 2013 she was off ALL of her meds. At the time she was on neurontin, clonozapam, norco, oxycodone, oxycontin and dilaudid. She had been on fentanyl patches but took herself off of them and, at one point, they wanted to put her on a pain pump but having two kids that just wasn't an option for her. She's been off all her meds since Feb. and is almost pain free. She only does the injections about 4x a year and had she started them sooner she wouldn't even need that many. I hope you feel better. Please look for a prolotherapy doc in your area as it may be the "cure" you're looking for. Peace and Love!
Thank you all for your kind words. I’m still battling it and am having a hard time getting any real rest. Had to cal out of work and if this doesn’t improve my tomorrow, I’ll have to miss another day. The dr told me to double the amount of neurontin I’m on and that she be my “best chance of fighting off the pain” … Not exactly what I wanted to hear and so far I don’t feel a difference. I also haven’t are a thing since last night… I know I have to choke something down soon but … Everything hurts. Feel nauseous just standing up for more than 15 seconds. I’łl have to look into that, Nicole. Thanks for recommending it.
Decreasing meds is awful. I’ve had many nights like u r experiencing. Its getting a bit more controllable but nights r the worst time for flare ups. Take extra anti seizure when that happens I have an extra one plus pain killers. X