In September of 1996, I was suffering from nasal congestion. I took oral decongestants, but they didn't seem to work. Within a few days, my nasal membranes were so swollen that I could see them bulging in my nostrils when I tilted my head back slightly and looked in the mirror. Finally I tried some decongestant nasal spray and it seemed to help. However, my face had started to hurt all over. It was pain, along with a pins and needles feeling across my cheekbones and forehead, and there were also intermittant tickling feelings--like beads of sweat running down my face.
I didn't realize what a problem this was actually going to be. The pain was there over several days, and I had thought I perhaps had developed a sinus infection. I kept treating it with decongestants, and finally went in to the urgent care clinic one night when I couldn't take the pain any more. The doctor agreed that I probably had a sinus infection and gave me some antibiotics, and suggested ibuprofen for the pain (which did nothing). Once the congestion was mostly gone, the pain in my face centralized to the right side of my nose. I finished the course of antibiotics but still had the pain, so they refilled my antibiotics. Weeks turned into months and eventually they did CT scans to check out my sinus passages and saw no evidence of chronic sinus infections. At that point they referred me to an Ear, Nose and Throat specialist to figure out what was wrong.
The ENT clinic ran more CT scans, and the doctor stuck a probe in my nose on a few occasions to look around. They couldn't see much except for some slight redness and puffiness on the right side. I was given recipes for saline rinses and told to rinse my sinuses multiple times daily, then they prescribed a steroid nasal spray they hoped would alleviate the slight puffiness they saw, and I was still intermittantly given antibiotics in the hopes that there was some infection somewhere they would be able to cure.
Over the course of time, the pain had only gotten worse and more constant. I felt quite silly to have the pain with no visible reason as to why it existed. I wondered if I was losing my mind! I finally started looking around on the internet for sites that dealt with facial pain. I found some information on jaw pain, but that did not really correlate with my symptoms. Finally a stamping friend suggested that she had just seen an article in a women's magazine describing a condition called "trigeminal neuralgia", and she thought the symptoms I had sounded very similar. I changed my internet search to find sites about trigeminal neuralgia at that point.
With my pain being constant, I didn't quite fit into the same category of trigeminal neuralgia (TN) I saw described. But as I read more, I felt like that was the closest any description had come to anything like what I was feeling. I joined an email support list set up for TN sufferers and came to learn much more about the possible treatments. However, I also learned that for people like me with the constant pain, which they categorize as "atypical" trigeminal neuralgia, it is harder to find treatment that is effective.
Right around this time, I went in to have some dental work done. I spoke with the dentist and told her how my face was hurting and that I was wondering if it was a nerve problem. She told me that there is a nerve, called the infraorbital nerve, that is sandwiched between the roof of the mouth, and the bottom of the sinus cavity. That really convinced me I was on the right track, as my pain was exactly in that location. I surmised that the horrible congestion I had suffered over a year earlier must have compressed the nerve in that location, and it had not healed. When the dentist gave me a lidocaine shot along the upper jaw to do a filling, it blocked the pain from that nerve. I finally got a little relief! My dentist said I was probably her only patient that actually *wanted* to get a shot in the mouth:)
Armed with that knowledge, I went back to the ENT specialist. He did another lidocaine shot to see if that nerve was indeed the one affected, and agreed with my suspicions. I was then referred to a neurologist. Unfortunately, it was a few months before I could be seen. So, I had to continue on with nothing to alleviate the pain.
Once I was seen and had MRIs taken, the neurologist could see no evidence of blood vessels causing compression to the nerve. He did start some trials on several different families of medications that have been proven to be helpful in many TN cases. Unfortunately, none of them really worked for me. The pain just worsened. I had been doing full-time home daycare, and finally quit at this point because the stress of being in so much pain was exhausting. I still did my best to remain active with my stamping business, however, as it was something I could work at as much or as little as I felt like, and still get some feeling of accomplishment and satisfaction from. And going out to do workshops for people helped me not only to get myself out of the house occasionally, but also helped me have something to focus on day to day.
Eventually the neurologist had tried all the medications he thought would help, and said he'd have to refer me to a pain management clinic. Since he could see so apparent compression of the nerve, he felt surgery was not even a consideration. I was quite distressed, as this had become such a huge, dark cloud over everything in my life, and it showed no signs of clearing. My husband had also left months earlier to attend a year of Army schools, and I would be needing to move with the kids from Maryland to Colorado--in the wintry month of March, all by myself.
As had happened before on several short occasions, just when it seemed I needed it most, I went into a sort of remission. For about 6 weeks, during and after our move, I was relatively pain free. I don't know what caused it, but it was sure helpful. I thought I had been suddenly cured. The neurologist had explained to me that it was possible my nerve had been damaged and would eventually heal itself, and that's what I thought had happened. However, that was not the case. The pain came back with a horrible vengeance at the end of April '98.
Since we had recently moved, I had to see a primary physician in Colorado and wait for a referral to a neurologist again. The primary physician knew little about the treatment for TN, but started me back up on some medication that I had mentioned had seemed to at least keep the pain from worsening. In about a month's time, I went to see the new neurologist. She worked with me to increase the levels of this medication, and over time I seemed to be doing much better. In fact, by August of 1998 I felt I was doing well enough to get back to taking some college courses and finishing my degree.
I signed up for 3 college courses that term, which I would work at over the internet. I told the neurologist, and she was surprised, adding that she wasn't sure it was a good idea. But I told her that I was under a time constraint with VA benefits I could use for school, and felt I needed to hurry and complete my degree. I was doing quite well until mid-term, when I suddenly had much worse pain again. I tried to extend my courses in order to finish them, but the medications and doses I was put on at that time were so overwhelming that I could hardly think straight. One pain specialist I saw during that time asked me how I managed to stay awake since I was on the maximum level of one particularly zombifying medication. It was a hard time, especially considering my then 4-1/2 year old and soon-to-be six year old that I had always stayed home with. They kindly learned to let a sleeping Mommy lie, and found quiet ways to spend their hours. I finally procured a note from my neurologist in January of '99, supporting the fact that I was in no condition to attempt college coursework.
Also in January of '99, my neurologist referred me to the neurosurgeon in the office. He suggested that surgery might indeed be a viable option, but that he would like me to see an anesthesiologist first. I went to a pain management clinic where the anesthesiologist gave me injections directly into the facial nerve. I think I had at least 6 of these, over the course of as many months, with mostly no lasting effect. And since they were shots into my face, I had some interesting side effects. I ended up with a black eye a couple of times. One time the right side of my face puffed up and I think the swelling caused some nerve trauma because my lower eye lid wouldn't close properly for months. Additionally, the right corner of my mouth wouldn't go up as much as the other side. I think my smile is still a bit crooked from that!
But after it was apparent the shots were not going to be of help, the anesthesiologist recommended burning the nerve--which would leave the nerve permanently numb. I would not have pain, but I didn't want to have the corresponding numbness it would create for the rest of my life! I consulted with the neurosurgeon, who suggested we try the brain surgery first. He said that even if there were no blood vessels compressing the nerve, he had a special technique that seemed to work well for trigeminal neuralgia patients. He said he'd make sure the nerve had plenty of unobstructed room, and then he would "stroke" the nerve itself. He said he didn't even know the mechanics of why it worked!
On September 2nd, 1999, I had the surgery. Since they have to go in around the brain to do it, they like to put you in the ICU for 24 hours after the surgery to make sure everything is okay. The neurosurgeon made maybe a 5 inch incision in the back of my head, maybe an inch behind my ear. He had to cut through a little bit of neck muscle, then he took out about a square inch of my skull so he could go in. It only took about 1-1/2 hours, but I felt HORRIBLE that first day afterward...which was largely escalated by an incredibly cold and uncaring ICU nurse, whose shift I had to suffer through that first night. However, as much as my head and neck hurt, my face didn't! And I had gone into the operating room with the nerve hurting quite a lot because I had been gradually going down on my meds over the past few weeks. I was in the hospital for only 3 days, then it was about 8 weeks before I really felt able to get out and around without feeling weak. But, I was so happy the nerve pain was GONE!
My neurosurgeon told me that studies show about 90% of patients that experience pain relief after this particular type of surgery stay that way for good. Now I just have to overcome some of the side effects of the condition to get back to normal. It's common to develop depression when suffering from chronic pain, as I did. I tried to treat it with herbs, but finally right before my surgery I talked to my primary physician and he started me on an antidepressant. At that time I was still on a very low dose of some medication that made me very drowsy all the time, but once I got off those drugs and recovered fully from the surgery, I was still exhausted. I mentioned that to my doctor and he informed me that there was another class of antidepressants that help your body's chemistry in a way that can boost your energy level. Once I get to where I feel I am back to "normal", staying on that level of medication for about 6 months will hopefully rewire my brain back into its old patterns. Then I should be able to be medication free...finally!
IT'S B-A-A-A-A-A-A-CK...!!
Ten months after my surgery, around the 4th of July in the year 2000, the TN pain came raging back worse than ever. I had done nothing unusual, I couldn't figure out why this was happening. I wanted so bad to take back whatever I'd done that had caused this evil thing to come back into my life...but there was nothing I could do. I felt like I was being pulled out to sea, and being dragged under--I desperately grasped for the surface, but all I could do was hold my breath longer and longer until I was finally overtaken. My body wasn't used to the pain, and I had no medication in my system to dull it. In fact, I had no medication for this at all. I had even gotten off the anti-depressants, because I didn't need them anymore. I hadn't seen my neurosurgeon in quite a while, and couldn't wait as long as it would take to get an appointment with him. I was living on an Army base, and called the Internal Medicine clinic where I had been assigned for primary care. Luckily, I was able to reach a decent doctor over the phone, relate my situation to him, and get a prescription from him for the same old meds I'd been on before. He gave me enough to last until I could get over the to Air Force Academy to see their neurologist.
Once I started visiting the neurologist, it was just more of the same old treatment. We went back and forth combining different medications that had somewhat worked in the past, hoping to get a synergistic effect. We eagerly awaited approval for meds that would be allowed to be prescribed for the condition, even though the drug had not been developed with that use in mind.
During a period from about 2 months after my surgery until just after the pain returned with a vengeance, my husband-at-the-time was out of the country with the military. He had never been supportive of my medical treatment, instead suggesting to me (and outright telling his family behind my back) that I merely suffered from "mental" and "spiritual" deficiencies. The fact that he deployed when I was pain-free, and when he came home I was in worse pain than ever, somehow had the effect of convincing him that I was psychosomatic. He told me I needed psychiatric help, and even went to the Army hospital on post to see if he could get me committed. Shortly after he found he could not do this, he told me he wanted a divorce, so that he "could be free to find someone else". (So much for, for better or worse!)
As the relationship deteriorated, the stress caused worsening pain, and I finally asked him to move out of the home in June of 2001. Unfortunately, with his abusive and controlling personality, this set off a rage of spiteful vengeance and lies, which he dragged through the court over the next two years in an attempt to destroy me. He had made it clear before he left the house that I could either stay with him, or I would be left with nothing. (Yes, this is after HE was the one who had insisted on a divorce in the first place! I now realize there was someone with mental problems living in our home, but it wasn't me.) Thankfully, I didn't succumb to that blackmail, and although it's been a living hell, the story has finally reached a happy ending.
I did lose custody of the kids for almost 4 years, and they went through some horribly abusive situations with their dad, but I was able to find a cure for my pain, and I regained custody of my kids permanently in the summer of 2007. The one thing that made the biggest difference was a recommendation from some members of the TN email list, to get chiropractic care--Upper Cervical Care, to be specific. I was finally free to try this route after my ex had moved out and I got my own health insurance instead of using military medical facilities. (The military, to this day, covers absolutely nothing for chiropractic care for dependents, and my ex refused to put money towards it out of our family budget because he was convinced the real problem was that I was stark-raving mad!)
Long story short, I began seeing Dr. Ty Johnson at the Chiro Connection in Colorado Springs in January of 2004. My situation, as shown by x-rays, was so bad that it was recommended I go 3 times per week for adjustments. I adhered to those visits religiously, and after about 5 months I was COMPLETELY PAIN AND MEDICATION FREE, and have been ever since. This was after 8 years of having this horrible condition, trying every medication allowed for it, trying any and every "home remedy", herbal and/or nutritional supplement rumored to alleviate it, and even brain surgery. Nothing worked, except for the chiropractic care.
I still continue to go once per week for adjustments, as I really poisoned myself with all the drugs I took for those painful 8 years. And my health still continues to improve, even beyond the alleviation of the Trigeminal Neuralgia. I've had acid reflux since I was a kid (they called it a "nervous stomach" back then), and nothing I tried before chirpractic care ever permanently worked to alleviate that, but I rarely even have a problem with that these days. And I find that I just don't get sick very often--I really haven't been sick for years, come to think of it. I have "off" days every once in a while, but I don't get bed ridden sick.
I have met a ton of wonderful people with many different types of medical issues, who have also been cured, or at least shown incredible improvement with regular chiropractic care, so it's not just anecdotal to me. I know all chiropractors are not alike, but I can tell you from experience that they are not all total quacks, either. I personally recommend seeing an Upper Cervical Care chiropractor. If you need help finding one in your area, you can go to the Chiro Connection web site and drop Dr. Ty an email, and I'm sure he will gladly help you.
MORE ABOUT TRIGEMINAL NEURALGIA
To find out more about the medical specifics, treatments, and support for trigeminal neuralgia, you can check out the following link:
Trigeminal Neuralgia Association
You can help the Trigeminal Neuralgia Association in many ways. If you have suffered from trigeminal neuralgia, you can participate in a survey on their site to help them gather statistics. You can donate your time and talents to help a TNA Support Group in your area. You can donate computer equipment to help them upgrade their networking environment. Or, you can make a tax deductible cash donation to their non-profit charitable organization. Check out the TNA link above for all the details.