Victoria
I totally understand what you are going through. I am going through a crisis time myself. I had Gamma Knife almost a year and a half ago and was pain free for over a year then slowly over the last few weeks it came back and in the last week some of the worst pain I have ever experienced in my entire life. Way worse than before - same as you - tears streaming down my face, clutching things, writhing etc. But as I increased my carbazepine and spread it out over the day as others have suggested - it has calmed down so much. I am up to 1200mg/day - the highest I was ever on before my gamma knife was 800! And I still feel like I have a toothache here and there but nothing like what I was dealing with. I think you are on a very low dose and I would call your doctor and just ask to speak to them and tell them that you are in major pain crisis. I am married to an ER doctor and am a nurse myself so I have titrated up my carbazepine myself while waiting for my doctor appointment - nobody should be in this much pain ever I guess I cannot suggest you do that yourself but maybe suggest your doctor give you parameters for the next time you have an issue! I have to say the lidocaine patches do help and I am using them at night - I think they are getting me through the night without waking up - you might want to try them. I slept few minutes here and there sitting straight up at first - and be careful with hot and cold. I used a heating pad as someone suggested and that threw me into a frenzy. Everyone is different and you never know what can trigger it - at least I never know. I am definitely going to look into MVD now but of course - I just started a new job a week ago - right in the middle of this. Yes, I went to work and suffered a day or two - I can't just get there and say, guess what I need 6 weeks off! I hope you feel better soon!!