Originally Posted In the Group: Success Stories
Hello friends,
I've had Type II Trigeminal Neuralgia since 2003.
Between 2003 and 2009, I was misdiagnosed as having TMJ. The pain is usually worse in the evening, or after eating supper. In 2009, it became so severe that some days, I literally didn't want to go on. It seemed to becoming unrelenting, as if a vice grip were on either side of my face, and with feelings that I can only describe as what I can imagine it feeling like to having my gums and tongue scraped with razorblades, and then drinking saltwater. Then, there was the throbbing which seemed to run down through through the 2nd and 3rd branches of my Trigeminal Nerve and out to every tooth.
Repeated different types of testing failed to reveal the source of compression, as it is with many Type II patients. Anti-convulsants and anti-depressants were no more effective than sugar pills.
My formal diagnosis came in 2010 by a Neurologist specializing in head and facial pain, mostly migraines. Did I mention that I had those on the weekly?
Eventually, I turned to opiod based medications, but after an adjustment to my dose, eventually cam an increase in pain and, thus another dosage escalation until my Pain Management doctor told me that I was at my ceiling, and the most highly medicated of any of the patients in his practice. These medications were robbing me of my personality, my health, and made me as tired as I would imagine a 90 year old would feel. I had to push myself hard through every day, and battled chronic fatigue and sleepiness, and still, I had breakthrough pain.
There came a point, when I could no longer sleep over 30 minutes to 2 hrs. at a time, and my stomach hurt almost non-stop, with nausea. I couldn't hide my chronic illness, nor my chronic fatigue at work. I think people who did not know me well must have thought that I was a junky of some type, or just a very odd person. My eye for detail went to heck! Doctors tried different medications to help me digest food, to eliminate it, etc. I saw Gastroenterologists, and even tried a type of medication especially for narcotic induced elimination problems, Nothing worked. Now, I had all of the pain of Trigeminal Neuralgia, and all of the health problems of an addict, but I wasn't addicted. I hated needing those medications to stay out of pain, and to keep my body from physical withdrawal. At that point, I woulld rather have lived with the agony of Trigeminal Neuralgia than to endure the slow march towards death that high doses of Methadone, and Oxycodone were leading me toward.
Most of my memories from that time-frame are foggy at best, but the most crystal clear ones are my interactions with family, the messages they were sending me, the broken-heartedness I saw in their eyes and behind their smiles when they interacted with me.
One evening, during this time period, as my eyes crossed from fatigue while my eldest daughter and I inspected styles of class rings as her graduation was only a couple of years away, she looked at me and said, "Mom, it's like you're not really alive anymore. You're just less dead".
On Halloween that year, my youngest Daughter said to me, "Mama, tonight was so much fun, it was almost like life was before you had Trigeminal Neuralgia"!
I've known my husband since I was 18 years old, but we only married 4 yrs. ago at the height of my struggle with TN. He had big shoes to fill, that of my late husband who died believing I had TMJ that an operation would eventually correct.
I remember the exact moment I decided that I was ready to stop the medications killing me and just face the life of pain. I thought those were my only options, then.
I clearly recall sitting on the floor of my den, fully upright, legs drawn into my body. For some reason, this was the most comfortable position for my stomach, and asking my husband, my partner and daredevil antics as a youth this question, "If I check myself into the hospital, and just stop EVERYTHING, will it be the ballsiest thing you'e ever seen anyone do?" He didn't hesistate in his answer for one moment, but looked at me with a look I've seen on his face a hundred times, but in much different and youthfully driven circumstances, that mischievious and rebellious half-smile, and replied, "Yessss"! He held my gaze for the longest time after he spoke that word, as if to drive home his point that he was not just telling me what I wanted to hear.
I don't understand the whole "pain pills feel great" mentality. I didn't seek these medications as an escape from life, but because I wanted to live it, so I was defeating my purpose. Right? With an aching and nauseated stomach because the medications were fouling my ability to properly digest food which soured in my stomach, but a determined spirit, I had my husband take me to a dual-diagnosis detox facility. My experience there was not one I would ever have expected to encounter at such a highly esteemed health care facility. I was lumped in with people who were on street drugs, and those who suffered from psychiatric disorders. I had great empathy for these people, but failed to understand why they would crave to escape life. I only wanted to escape life-robbing pain.
One new admission slithered beside me, a couple of days after I had myself admitted, and ask in a cool, and smooth tone, "So, what's 'yo D.O.C."? I ask, "what's a DOC?" She looked at me as if I was from another planet, a world she didn't know and ask, "uh . .what's you're drug of choice"? I said, "I dunno. I suppose I had more of a D.O.N.,, drug of necessity, but it's killing me". I went on to explain my illness, but she appeared not to be listening, cutting me off by exclaiming, "Girl, I don't know, but I love me some cocaine"! I felt then, a deep pity for what her life must have been like to have driven her choice to be that of poisoning a young, and apparently, pain-free body. I'm not being self-rightous. I simply didn't relate to most of the people there. I suppose that is why they gave me a roomate suffering from Pancreatitis, who had run out of her Percocet because it was not providing her sufficient pain control. To make matters so much worse, while I was being treated at the facility, they told me I was pregnant only to later tell me my test had gotten mixed with someone else's, and my beloved Father-In-Law from my first marriage passed from bone cancer. My family needed me there, but my husband ask that I honor the wishes of what my Father-In-Law would have ask me to do, to stay the course and leave Methadone for good! I cried, and phoned my children. I felt so guilty for not being there for them. Ultimately, Trigeminal Neuralgia had robbed me of being able to pay respects to one of my nearest and dearest.
The dual diagnosis unit at this world renown hospital was not well-versed in detoxing Methadone patients, and they took me off of my anxiety medication as well, however something happened that amazed me in the coming days. They gave me 9 Subutex shots, and for the first time in years, I felt clarity of mind, and a freedom from Trigeminal Neuralgia pain. One nurse noted how well I was responding to the treatment and requested the doctor prescribe me Subutex. He refused her request. She came to me to tell me that he explained to her that Trigeminal Neuralgia could only be treated with anti-convulsants! Then, the horror began as my body went into full-blown shock, as the Subutex wore off. I was entirely sleepless for 5 days. I couldn't eat, and my stomach pain was at a fevered pitch. I lie in bed for days, but could find no comfortable position, and in the worst state of my life for days on end. It felt like hell on earth, but I emerged, although still in physical Methadone withdrawals, and mildly hallucinating from having had a physical dependence on Methadone, a cruel master, having left Methadone in the dust forever!!!!!!!
The doctor from the hospital insisted that I go back to a high dose of Gabapentin, which I knew from experience, did nothing to help my pain. I did resume taking my Oxycodone, but in the back of my mind remained those several normal feeling, nearly pain free days I'd spent in the hospital being administered intra-muscular dosages of Subutex, or Buprenorphone. I remember something the one nurse, who seemed to be my stanchest advocate said, "You know, hun, Subutex doctors are not hard to find. I've made my opinion clear to the doctor, but that's all I can do and I carry out his orders. I'm sorry. Find yourself one when you get out. I understand your pain is real." I guess they are used to dealing with people whose pain is psychosomatic, or they presume so? and why were we with the mentally ill, and those addicted to illegal drugs? Does society view chronic pain patients that way?x
After my release, for 5 months, I continued to see a Pain Management Doctor for Oxycodone.
After a few more months, I was ready to also stop Oxycodone, as it made no difference how much the doctor raised my dose, my TN pain worked harder to stay one step ahead of it, and still, my found that my pain medication was still wrecking my health, and dulling my senses. I had become chronically depressed, and would lie in bed for days on end, someone once so full of life, a work-a-holic, actually. It had to stop. I'd take the pain. To my surprise, I wouldn't have to!
On several occasions during this period of time, I conversed with Red Lawhern, who, by that time, had become the foremost authority on the study of those of with this condition who I personally know. At that time, Red is unopposed to opiate medications to treat chronic pain, he had only known of one person whose body had tolerated this type of medication for a long period of time without "drug holidays", as he referred to them. Red gave me realism. I'm grateful. With two children, and a career to try to salvage, I didn't have time for another drug holiday, as Id had in the dual-diagnosis unit, though. I couldn't put that on my family, to have to care for me. I wanted so badly to care for them! (the house had really gone to heck while I was hospitalized).
Understand, please, that I am an opiate based medication advocate for anyone with chronic intractable pain, whose body can tolerate it, but mine could not. I am the original founder of the Opiate Therapy Group here on LWTN.
Buprenorphine is a synthetic opioid, mostly marketed as a means for people who seek freedom of opioid dependence. There are two formulations, name branded Suboxone which includes Naloxone and is more widely used to cause those who take the medication to become violently ill if they take other opioid medications (in my opinion, this is a cruel medication - What if someone is severely injured and needs Morphine to get out of excruciating pain)? There is also the formulation, which I am thankfully prescribed which is only Buprenorphine. It's name brand is Subutex.
It has been over a year and a half now since I left conventional pain management for treatment using Buprenorhpone.
I thought for a while after I was prescribed Hydrocodone, then Oxycodone, then Morphine that I was a "success story", because for a while after beginning these medications, I felt okay. My pain was sufficiently relieved, and I was functional again. If you read my earlier blog posts, I also thought, for a long spell, that Methadone would be my salvation. I was 100% wrong. As my pain rose to meet anything the pain managment clinics would throw at it, I hoped that each medication would be "the silver bullet" for me.
I do not believe that there yet exists a silver bullet for all Type I, or Type II TN patients, of course. Reading these posts, you can easily see that the character of our pain and the progressions of our illness are all as different as snowflakes!
This is why I waited over a year and a half before telling you that when the properly licensed Buprenorphine prescriber did prescribe me Subutex, it saved my life. Before beginning, I had to wait until most all of the Oxycontin, the latest in a series of all that I had tried, was sufficiently out of my system. There were a few hours of being uncomfortable, but now, a year and a half of being clear-headed, and enjoying moderate pain control, I must say I'm feeling like a TN Success Story. I do not like that one becomes physically dependent upon this medication. That's the down side. I also do not believe that it would be right for everyone, but whenever I have that horrible old feeling, the TN flare-up, when I feel it coming on, when I remember all of those days and nights I spent muddling through the pain, dissolving only 1/2 of my dosage under my tongue somehow quiets the nerve, for me, and seems too good to be true, but it's worked for me!
I often feel profound "survivor's guilt" for all of you still out there suffering on a daily basis, trying, rotating treatments, or those who have had numerous surgeries in hopes of escape from the pain, because quickly closing in on a two-year anniversary, Trigeminal Neuralgia no longer controls my thoughts. Some days pass when I do not think of the fact that I have the disease, until evening when I usually have a bad episode and must dissolve this medication sublingually.
To my family, I simply say, "I have to take 'my quiet medicine'" now", and they understand that my mouth will be closed for approximately 15-30 minutes. It's a small price to pay.
Please forgive me any type-os. I zinged this off knowing that I don't have the time to thoroughly proof-read prior to posting and yet I felt my story may benefit someone today. No time for proofing because my day is filled with a long "to do" list of accomplishments, such a list I wouldn't have made for myself over a year and a half ago because I felt very close to death. I loved going to sleep, and dreaded waking up. I had to sit and rest multiple times while shopping with my daughters for school clothes. Aside from the side-effects, there was the Type II TN Pain!
Close to two years ago, today, I couldn't imagine that my quality of life would ever again be what it is today.
I'm struggling to pick up the pieces of my life before Type II Trigeminal Neuralgia side-lined me entirely, and my fierce struggle to tolerate the only things which released me from it. As I strive to piece together again, a once thriving career, and restore order to my home which fell into a state of clutter and disrepair from my years spent to engulfed in pain, or side-effects from medication which helped with the pain, to adequately tend to either, I remain ever-grateful for the respite I've found from this disease. A dark feeling comes and passes, maybe, once every several days, that perhaps, at some point, or when I've had more attacks than usual, that I'm becoming fully symptomatic again despite my medication, or that I will need a dose increase. Blessedy, that has not happened yet.
This is not a recommendation of any particular medication to anyone. I know what worked for me may be of no benefit at all to another patient suffering with either type of this disease, especially Type I patients, but this group is about "Success Stores", and good Lord willing, at this point, I believe I am blessed enough to be able to count myself among them.
If my newfound relief allows for me to sort out my life to the point that my house is not teetering on the brink of Foreclosure, my car doesn't face repossession, and I've made up to my Daughters time that I was not able to be anything close to the parent they deserve, in their final years of growing up (particularly because we lost my husband of 13 yrs., their Father, to an automobile accident in 2006), I hope to return to more active Moderation of this wonderful, and much-needed site.
I wanted to share my journey with some of you today. What works for you may be different, but never give up. Persist, ask questions, draw, erase and improve. DO NOT ACCEPt ANY PHYSICIAN, OR ANYONE ELSE TELLING YOU YOUR PAIN IS IN YOUR MIND WHEN IT'S ACTUALLY ALL OVER YOUR FACE, MOUTH, OR HEAD!
Wishing effective treatment, compassionate care, and the brightest of blessings to all,
Stef