Since my last post, a lot has happened. I didn't realize it had been so long.

At the end of January and into mid-February, I had a stellate ganglion nerve block once a week. They injected anesthetic into my neck into a bundle of nerves, hoping it would stop the pain signals going to my brain. The second and third blocks seemed to give a sort of relief, where I had more "bursts" of pain instead of near constant pain. The fourth block seemed to make the pain revert and it was back just as strong. We tried yet another anticonvulsant, which also didn't work. Mid-April, they wanted to try doing pulsed radio-frequency ablations - basically burning the nerve to reset it and stop sending pain signals. They would inject anesthetic directly into my facial nerves, and then if I still had pain, they would do the ablation. They did an occipital (back of the head) block, which made my face horribly worse for two days. I was confused as to why they decide to start in the back of my head, since I told them I did not have pain there, it was all in my face and sometimes my scalp. The anesthesiologist decided that since it made my face worse, it wouldn't be worth it to risk making my face worse. Since that block, I have had throbbing, intense pain in the back of my head. It makes my face worse, and it's hard to function while it and my face are at their worst. The doctor said this pain "should go away". I won't hold my breath.

It seems my treatment plan from here is pretty short and bleak. I started a new medication, another anticonvulsant, in the beginning of May. It's also not working. They say after this doesn't work, they'll try an Alzheimer's drug, and after that, a Ketamine infusion. Ketamine is supposed to reset all of the pain signals. It would be four hours a day, Monday thru Friday, just for those five days. It may not be covered by insurance. I’m not sure if we will agree to that experiment or not. That seems to be the extent of what they can do to help.

I appreciate your prayers, cards, emails and texts so much. I keep praying this will go away as suddenly as it started, so Alan and I can have our life and future back.

Just thought I would give an update....

I saw the new neurologist again on 12/21. He refused to give me any medication, questioned my reasoning for getting off indomethacin (which had me vomiting from pain), and had me scheduled for 6 weeks out. I was less than pleased with the appointment. He had the staff schedule me for a nerve block consultation which is on 1/9. I'm conflicted about the nerve blocks....on one hand, it could work. On the other hand, it may not work, give me extra stress, and possibly make my pain worse. Oh, and I'm terrified of needles. Mark has put me on Savella, another fibromyalgia drug, hoping that it will calm my facial nerves down. So far, neither the Savella nor the pain medications have been helping much. Through the past two years, Mark is the only doctor who has continually cared and tried to help me.

I started trying acupuncture again last Thursday, and it gave me less pain Thursday and Friday. Saturday I saw my friend Tjasa who "experimented" with some neural manipulation/massage therapy, but it hasn't helped either so far. I will keep trying the acupuncture and Tjasa's work, because I would like to avoid bigger needles in my face if I can help it. I was grateful for the couple of days of less pain, I just wish it had lasted longer. I know God is the only one who can make this go away - I appreciate all of your prayers, and I miss you!

Appointment w/Dr. Ahn went well. He is very knowledgeable and wanted to go over my history from the very beginning, when my wrist started severely hurting 11/17/09. He went over every change and addition in pain, read all of my notes and really paid attention (unlike certain Jacksonville doctors).

My diagnosis is hemicrania continua (Latin for half head pain) but only because it's the closest to what he thinks I have - he's not sure exactly, but that it's definitely an atypical facial neuralgia. He said it is definitely some type of facial nerve disorder but doesn't conform to anything he knows of....surprise, surprise, I just had to be special! He is also doubtful that I even had shingles. He's starting on me on rx of indomethacin, in a drug class completely different from everything else I've tried. If that doesn't work he has one other medication in mind, and our last resort if that fails would be multiple facial nerve blocks. So we will be trying out this medication for 6 weeks. I am hoping for some relief since neither percocet nor roxicodone is helping anymore. I am in severe pain most of the time and it is causing many sleepless nights.

Thank you all so very much for your prayers - we are now praying this medication works!

Just wanted to let y'all know I have an appointment with a neurologist at Shands on 11/9. Out of the thirty-plus neurologists at Shands, he is the only one who specializes in facial pain. I am desperately hoping he can come up with something to help my pain. I miss my life. The pain keeps spreading into new areas, which I didn't think was possible. When your tongue and lips are on fire you start to lose your sanity. My class hasn't helped much, but I'm not completely giving up on it.

Prayers still and always appreciated.

My face pain is still the same intensity, and has moved to new places. Eyelids, tongue, etc. I thought it had gone to every facial nerve, but it keeps proving me wrong. My back is worse some days, it spasms for no reason sometimes, and other days it's aggravated by too much walking. Mark has me on a muscle relaxer every 4 hours, he recently increased it but I haven't noticed a difference. The steroid injections were hit-or-miss, they worked some times and didn't others. The last two times they didn't work at all, so I've given up on that.

On a brighter note, I quit my job!!! I started a new job a little less than two weeks ago, and so far it's great. Quitting the old job felt great, even though the boss and his wife have said some really hateful things about me (apparently). The new office is open less hours and is less stressful. I had less facial pain since I gave my two week's notice, but I am still having a considerable amount.

I'm taking a "Mindfulness Based Stress Reduction" class starting at the end of September. I realized I hadn't updated my current diagnosis, which is Reflex Sympathetic Dystrophy/Complex Regional Pain Syndrome. Short version: my nerves are messed up, any trauma is permanent nerve damage (face: shingles, back: spinal tap). The woman teaching this class was diagnosed with RSD years ago, and says this program saved her life. I'm hoping it helps, even if it's just to cope with the pain. That's our current battle plan. Thanks to all the prayer warriors for your love. :)