The pain is back

It has been awhile since I have been here, I had been doing good, actually had gotten to go off my meds for a few months, but it is back and with a lot more gusto this time. I had never had any episodes quite like I had this last week. My doctor had put me back on 300 mg of Carbanazepine to start out with, but it was like eating candy not much help at all. I called to see about going up and she was not in for this week. So I got to see one of the others in the group. Well he did not know about TN hardly at all, and I had to go over all the stuff again. He thought it was dental and treated me like I was nuts. I said I have been there before and my dentist actually sent me to the doctor, because it was not dental. He did not want to up my meds being he really didn't know about it and was going to send a message to my doctor to make sure it was ok. I hate to wish this on anyone, but I just wish he could have one episode to see what it is like. I had extra pills left over from when I was on 600 mgs so I raised the amount I am taking myself to I here from my doctor. I have gotten most of the major episodes to go away, just a few twinges now and then, I can live with that. Ok, I am done ranting. I am just glad to have this site and can rant without people thinking I am nuts. My family is a great support and being they have now been around when I have an episode, they feel for me. I have tried to keep them from my kids, (actually grown adults) but you never want them to worry.

Sorry to hear ur pain is bad. Get well soon

How long have you been diagnosed with TN? Have you been seen by a neurosurgeon, and had an mri/mra done yet? Mine was a 6 year history with the pain affecting the ophthalmic (r eye, forehead, and nose bridge and the maxillary branches (teeth and r lip). I had periods of real exacerbation up to 4 months at a time and then relative non symptomatic periods of remission for up to 6-8 months. Each time I would have a recurrence it seemed to get worse. I basically stayed on doses of tegretol and varied the dose dependent on the level of pain between 300-900mg/day. It did help at first and then I did not get any relief from it in the end. I tried herbal remedies, bought a laser to treat the nerve, and chiropractic, injected vit B12 and pretty much exhausted all of my options. It got to where I was unable to eat and talk because of the pain. I did have a mri/mra that confirmed compression on my TN on the right side by the superior cerebellar artery. I figured if I was ever going to get rid of this I needed to look into surgery. I researched online to find out options and discovered that there were just a handful of surgeons using the minimally envasive endoscope to get to the site for surgical repair. I elected to see a surgeon Dr Michael Alexander from Cedar Sinai Hospital in LA. Saw him in on Thurs July 11th and had surgery July 12th. It was a rough first 2 days and then I began to recover well over the next week. I have had no pain for nearly 3 months and feel very satisfied that I made the right decision. I know some do not do well with the surgery but I was at a point as are many sufferers that I was ready to do anything rather than live this life. I hope you are able to find some answers and if you ever need to talk let me know. I would be glad to share my experience with you first hand.

Jay in North Idaho.

Thanks for your comment.

Jay, no I have not seen a neurosurgeon yet, I was thinking of starting to research surgeons. I work at the University of Michigan, College of Engineering, so I was going to start to check out the neuro department at the hospital. My doctor gave me an MRI right at the beginning. She has talked with the Neuro department on my dosage and timing of it. My first time with TN, and when I first came to this site, I thought, maybe I should not be on here, I don't have it as bad as everyone here, and I questioned if I really had it, but this time it has come back a lot worse. I am taking 600mg a day and I still am having break through pain.