Hello all!
I'm writing this in hopes that no one will go the same route that I did.
I read about Methadone a couple of years ago, heard that it was given to expectant mothers who were opiate dependent, and that it was perhaps easier on your vital organs than other medications for chronic pain.
I also read that Methadone was good for Neuropathic pain because it interacts with an opiods receptor in the brain, NMDA receptor, which would make this medicine particularly helpful for neuropathic pain.
I had been prescribed this medication for a short duration in the past and it worked well. I was more active and felt fine, in fact, I was completely pain free while taking it. I remember assembling my daughter's trampoline almost all by myself one day during my first time taking this medication (something I couldn't imagine attempting now).
That was short term.
In October of 2011, I was titrated down off of my Morphine, which was no longer working and titrated up on Methadone. I was given Roxicodone for breakthrough pain by my doctor.
Looking back, I can assure you my intentions were as they always are, just to find the key to open the door to be the mother, wife and employee that I used to be prior to severe Type II TN pain.
However, when I returned to work, I found that the Methadone not only kept me from being able to catch on to things as quickly as I used to be able to, but it contraindicated the medicine I take for pain attacks and perhaps was not a good mix with my breakthrough meds. I fell asleep in meetings. I had a hard time staying away driving. I was so stressed out by my job, but I tried hard. I gave it my all. I had one of my dream jobs, one with a company I had worked with before, good benefits, but it was one heck of a drive.
Methadone is unlike other opiods in that it is synthetic. It stays in your system for weeks, while other opiates stay in your system for hours. The withdrawals from Methadone can last for a very long time if one ever has to come off of it, while the withdrawals from other opiods generally takes 7-10 days.
I had had it. I quit the great job I was at for one I thought would be less stressful and closer to home. Both jobs required a lot of overtime. The Mortgage Industry is very stressful. But, I still had a hard time staying awake. In fact, it was impossible, at times, not to close my eyes. I could not cease any of my medications, or I would be dysfunctional at that point.
Then, I began waking up in the middle of the night. My circadian rhythm was completely thrown off. Plus, I began to have severe abdominal pain. (to this day I do not know if this was the stress or the Methadone as it still happens sometimes and I'm on my 13 day without the drug). I could sleep no more than a 2-3 hr. period without waking up, and sometimes having to take a Diazepam to get back to sleep. I was living a nightmare. I had no energy. I was sad, because I knew I was a slave to this drug.
When my stomach pain had put me out of work for days, I checked myself into the hospital thinking I would receive treatment for my GI pain and detox from my Rx meds, so that my digestive system could heal, away from my family and have the safety of having medical professionals near in case the pain levels gave me a stroke, etc., only to find that my attending physician knew nothing about Methadone patients. I knew this when I told him that I took Methadone and Roxicodone, and asked him if he had ever treated a Methadone patient, and he referred to the two drugs as the same beast. OK NOT!!!!! Roxicodone IM is an immediate release relief medication which is in and out of one's system. Methadone works by building up in one's system and is slow to leave. IT'S SYNTHETIC!
I found myself in a unit which treated detox patients along with psychiatric patients! Hey, I take pain medicine for chronic pain. Why would that land me in a psych ward?????????
After they knocked me out with Phenobarbitol for two days to get me off of my Diazepam (which has never given me really any bad noticeable side effects except for helping anxiety and calming TN Type II attacks) so badly that I couldn't get out of bed and saw stars, like in the cartoons, one time when the nurse came to tell me the doctor wanted to see me, then they gave me only 9 subutex shots and that was it, I was on my own for three days to go with one hour of sleep, feeling like every breath I took was toxic, finding no comfortable position, with tearing eyes, sweating, and feeling like fire was licking around my neck, but especially boiling in my stomach.
My roomate was a woman with acute pancreatitis who had to use Percocet for her chronic pain, but ran out, got depressed, and went to the hospital. I think watching my withdrawals scared her into thinking hers would be as harrowing. She would do things like bring me a banana from the cafeteria when they all went down to eat, as that is something I can get down with no problem.
When the subutex wore off, I could not sleep for 96 hours, or more, and Ensure, crackers and bananas were the only thing my stomach could tolerate. Food was repugnant. I lie there in that bed for nights in agony. It was real torture.
Lying there, I replayed my whole life, which I won't get into, as that is another story, but I have two beautiful daughters and husband I love, and a late husband who I remember every day and will always miss, the girls' father. His father died while I was in the hospital of bone marrow cancer. I missed the funeral. My husband said he would want me to finish what I started.
Only one man understood. He looked at me seriously and said, "Methadone is the toughest withdrawal of all", as if he was surprised I was eve trying to do this there. It was the man who usually led the support groups they help in the common rooms. I attended several while there to pass the time. I listened, but could not relate with the psychiatric issues of many of the other patients, or the people who did street drugs to get "high". I felt like a frog on a bicycle, in the wrong place. I don't relate with the "addict" mind set. I never chased "high". I have been chasing "normal". I don't get it. . . .crack, cocaine, alcohol . . . . I don't understand the usage of those things. I don't have a drug of choice. I was coming off a drug I was using as a tool to do the right thing instead of being in pain.
Trileptal, the supposed substitute the doctor gave me to control my pain, made me feel like an Alzheimer's patient.
By the time I got out of there, shaking and weak, but on an adrenaline rush to get home, I barely recognized my husband when he came to get me. I didn't remember where I put my towels when I went to shower in my own home. The generic name for this drug is Oxcarbazepine. I hope it works for some people. It is used as an anti-seizure medication and mood stabilizer.
When I got home, after 11 days, my house was a nightmare without me around. The laundry pile was post-nuclear. I tried not to let my husband see that I was not fine.
Immediately, as sick as I was, I had to start functioning as a mother and wife again, which meant I had no choice but to take my Roxicodone and Diazepam for pain and to keep away withdrawals which will last for weeks in front of my family. I didn't want to continue those medications. I had no choice. I felt so alone.
I have missed so many days at work that the only way they will take me back is if I can provide a doctor's statement that I am able to return to work at full capacity covering from the day I became too ill to work til the day he told me I could return. He had only given me a week to recover. What? Methadone withdrawals take weeks!!!!!!!!!!! Why would he not know this???? This is a man who wrote a book on addiction. (he admitted to me that he believes there is a difference between addiction and dependency), but as I flipped through the first few pages of his book online, there is a chapter in his book on every opiate you can think of except Methadone.
So, I sit here tonight, wondering how I will pay my family's bills, wondering how long before I can taper off of Roxicodone, which causes GI upset as well.
I'm more confused and sad than I have ever been. I don't know how I'll control my Type II TN pain. I know one thing, though, I never want to be a slave to Methadone ever again. I find that my awareness when driving is better. I find that I am more aware of what should be done that ever and have more energy. I can eat almost anything I want. I had been living on bland foods, or barely eating because the constipation was so bad that I used every means necessary every day to prevent it and, even then, it was an uphill battle. This is horrible, but I had found myself jealous of my well coworkers who didn't have to take pills to feel normal.
I'm still in the Roxicodone and Diazepam traps. I don't know what will take their place. I just know that I do believe that opiods and benzodiazipines should be PRN, not taken every several hours, or every day for pain, if the patient isn't terminal.
I want to live, even if it is with pain.
Methadone was a prison for me. I'm free. But, like may ex-cons, I'm jobless, and have an uncertain and unstable future ahead. I hate this for my beautiful girls, 17 and 9. My husband does not make enough money to pay the bills. The social security I get for the girls from their Dad's death still comes in. I can hang tough, with my father's help, which ends in January, but what then? We have nowhere to go.
I wish I had never taken the first pill that led me to the Methadone Prison. Because of this, me, a well-intentioned mother of two from the suburbs HAS to take her other medications to stave off the withdrawals from the Methadone hidden right beneath the surface.
God help us. Type II Trigeminal Neuralgia has led me down every path (and I've tried so many things besides opiates to try to control it). Now, I'm lost. If I'm lost, they're lost. I'm the head pin of this household. It's all on me. That's why I got on this drug. I thought it would make me be ABLE to work, not the other way around.
As usual friends, I type when I can, because I'm such a busy Mom. I just wanted to send up a signal to the group that once you put the Methadone handcuffs on, you will have to take drastic measures to ever get off of it.
Because I type when I can, I don't have time to proof, so forgive typos and grammatical errors.
Tomorrow is a school day. I can feel my stomach starting again. I don't know if it is from the damage Methadone did, or if it is my Roxicodone.
When I started this group, all I knew was that opiods were the only thing that worked for my Type II TN pain and wanted to converse with others who have had the same experiences with doctors, etc.
Yes, Methadone is a "messy" drugs. It ruins lives. I've read up on it now, and the different ways people try to get off of it.
I would think it may be a good drug for terminal patients, or possiblly good at Methadone Clinics, where they give it to addicts who want to get their lives together, as a substitute and re-enter society. I don't know. But, for chronic pain patients, it is my strong opinion now that this drug is the one to avoid above all others. Of course, I'm still learning and trying new things all of the time to control my condition.
I was it's slave for over a year. Many never get off of this drug once they begin.
MAKE IT YOUR VERY LAST RESORT!
Your friend,
Stef