Hello all,
I am a widowed (in 2006, after 13 yrs. together) and remarried 39 mother with advanced Type II Trigeminal Neuralgia raising two girls, 16 and 9.
I've been through so many doctors, so many medications and so many treatments for this condition. For years, I thought that if I obtained Methadone for my pain, because it used to leave me pain free, that I would be able to return to work.
I'm on an hourly countdown to my Pain Management Appointment tomorrow. In the last couple of months two things, 1) Methadone, in the doses they will prescribe, leaves me with too many break through flare-ups* to be effective in any line of work which I can imagine., and 2) Roxicodone (Oxycodone with no APAP) 15 mg., used for my breakthrough pain, when combined with the Methadone, is taking my pain away completely.
My Pain Management Doctor seems scared to prescribe me any more than 100 Roxicodone monthly. This leaves me with 3 Roxicodone for flare-ups* most days. Ten days a month are better, as I have 4 to cover. I would need a bit more than even this to return to work.
I scour the web for answers. I read about back pain, and even other Type II TN patients who are prescribed twice what I am for pain daily in Roxicodone.
I recently learned that the maximum dosage of Oxycodone (Immediate Release) a.k.a. Roxicodone is 1,600 mg. daily. I am currently prescribed 60 mg. daily at the most.
I've been so depressed lately, that I try to sleep most of the day. At least when I sleep, I can escape the pain, and the realization that I am helpless to help my own future, my less that of my children in my condition. I know that this is weak, but for all of my life, I've been a breadwinner, an unrelentless worker bee. I am not a drug addict. If given the option, work and achievement are my drugs of choice.
For over a decade, I excelled in the fast paced, detail oriented world of Mortgage Processing and Closing. I've also been a Loan Officer before, as well as approved and beginning to Underwrite Conventional Residential Mortgage Loans.
I have some college level education, but completed coursework to become a Medical Transcriptionist, at a young age, at a trade school. Even when I was young, and working fast food, I often was "Employee of the Month", amongst receiving high praise and accolades for my propensity to never shy away from hard work.
By my mid-twenties, I was able to get my family into a three bedroom, brick home and help my late husband, who held a low paying, blue collar job make the payments on two late model vehicles.
Now, I envy my current husband, simply for his ability to do factory work for a bit over minimum wage.
I see my pathway back towards the light of day, offices, the commute, independence, being able to financially care for my children and perhaps, give my husband and I the retirement that everyone would want. Oh, I loved it, the people I would meet, the social interaction of offices, or of any workplace, the comraderie there, I miss it. I miss my morning "joe" and settling in to my desk for an honest days work for an honest day's pay.
So, I have a Pain Management appt. in under 24 hours. I know about how this will go, I think. I will see my doctor. He will only prescribe my usual amount of medication and the usual hassle with the pharmacy to get them filled in a timely manner will ensue. These types of medications make pharmacies in my area nervous, I guess, because for the past four times I've had mine filled, they did not like the way he wrote it, or they told me that they wouldn't have it in for many days because they didn't carry it, or that I was trying to refill it too soon (which I'm not).
All across the country, you hear workers complaining about people who are on Medicaid, or on Foodstamps, or who don't want to work. I am having a hard time knowing EXACTLY what would put me back in interview suits and hope of obtaining a job to provide for my family, but being, more or less, basically, what I see as denied the opportunity by a doctor. He has the power to make or break my family, more power than anyone has ever had over me, really. Since TN, Type II, the doctors have had more power over me than even my parents ever had about what I am able to do, or not do, with my life.
There is no way that the D.E.A. is going to fault a doctor for prescribing someone like me whatever it takes to make them comfortable! TN, as we know, comes with the reputation of "The Suicide Disease", or "the worst chronic pain known to medical science". Some are prescribed high amounts of pain killers for this condition.
I wonder where I will be this time next month. Will I find my way out of this darkness and into a job, self-respect, my children and husband's respect and hope for the future? Will I find another doctor, who will understand my predicament and help me get there?
I've tried all of the usual drugs they prescribe to help TN. They all feel like sugar pills. I've tried most of the opiates out there. Oxycodone Immediate Release works! Heck, maybe OxyContin does too, I haven't tried it. But, I need it every 2-3 hours, plus my round-the-clock medication, which right now is Methadone, to control the nagging pain. The flares remain out-of-control.
*Flare-ups, for me, can vary from feeling like every tooth in my head is throbbing, or something like that, but typically consist of a feeling that can best be described as feeling I've had the skin ripped off of my gums in many places and they've been left raw, aching around the gum of every tooth and down into the tooth, as well as feeling as if my tongue and upper palate has been scraped repeatedly with a razor, accompanied by pressure/tension in both sides of my temples, cheeks, in my mandible and sometimes maxillary area as well. No joke. No fun. Real torture.
Roxicodone frees me from this torture.
If my Pain Management doctor could feel this, I think he may understand. I can tell he is a young, well-meaning doctor, who is just afraid of giving out too many opiates.
I wonder how many others out there would be able to re-enter the workforce if only they had adequate pain control. If only . . . . .
If you pray, please take a moment to remember me in prayer tomorrow, as I see my Pain Management Doctor, to minister to his heart to see the family in my eyes, that he could make, or he could continue to leave broken, because Mommy can't do what she needs to do for her family on the inadequate amount of pain relief she's being given, that the difference of just 6 pills per day (ok, I know he can't justify a jump in my scribe like that, probably, but that would give me pain free days) would put the power to bring her family up in the world back to this heartbroken mother, and give hope back to her two heartbroken children, as well as her ever-hopeful and deserving husband.
Please, pray for me tomorrow, if you pray. 22 hours now, and I'll know more.
God bless each of you. May the medical field wake up, realize our suffering, put more science behind curing it, and in the meantime, may doctors all across this world be more compassionate and giving with what works to treat our pain.
Don't ever let you pain be dismissed.
Your friend,
Stef