Medication - Coming Full Circle

Hello friends,

For the past three months, I've been trying to hold down a job with Type II TN, on three different types of medications to control it. It's not working out.

I feel like a failure at this point. You see, my children are my life. Becoming a Mom pushed me to be as much of an achiever as I could possibly be.

In 2003, I began having symptoms of Type II TN. By 2009, I needed more than Diazepam. I needed pain medication to get through the day. In 2012, the side-effects from the pain medication has begun wrecking my health. So, now I not only have Type II TN, but a host of other problems. I have a hard time sleeping, and other normal bodily functions that healthy people take for granted. I attribute this to the pain killers I have to use to control this monster. I do not know if I'll be able to work with all of these side-effects. Every day that I wake up with a sore, bloated stomach, tired and depressed at my lot in life, most days I still push myself in to work, hoping I can make it to work that day and not do anything embarrassing, like struggle to keep my eyes open in a meeting (I sleep in my car at lunch break on most days).

I have always been applauded for being an intelligent person, but now, it seems I struggle to remember what I am being trained to do. I have to question EVERYTHING many times.

It seems the medicines have wrecked my stomach, upper and lower intestines.

I'll admit, I routinely find myself envious of the "well being" of my coworkers, and remembering the times when I was like them, when my future, and thus the future of my children, was clouded by scary health uncertainties.

I've reduced my round-the-clock pain med, so far, without a lot of consequence. I hope to keep on reducing it, but I am not sure how far my pain will allow for this to go. I do not think I will be able to reduce my IM "immediate release" pain medication very much. It is what I rely on to even make my body feel somewhat normal even aside from the Type II TN now.

One horrible problem has mushroomed into many.

I've always said that I wished I was one of those patients who responded well to any other type of therapy besides that made up of benzodiazipines and opioids.

I'll just come right out and say, I thought that Methadone would help. I hate "Master Methadone". But, I'm down from 50 mg. per day to 30 mg. per day, and hope I can reduce even further.

I've always taken for granted my ability to drive. Now I know what senior citizens who are struggling to retain their driving privileges must feel like. I accidentally hit a guard rail a couple of weeks ago on the way to work. I've been thanking God ever since that it was a guard rail, and not another car with innocent people, maybe even children inside.

Coffee used to be my salvation. My stomach doesn't allow for that anymore. Oh, I miss my morning "cup of ambition", as Dolly Parton put it back in the 80s' in her theme song for the movie "9 to 5".

My eldest daughter has rose to the occasion and been a godsend! If it wasn't for her, I don't know how I'd be making it through this. I feel as if the burden of my disease is weighing on her so heavily that it is affecting her wellbeing. She worries about me so badly. She already lost one parent to a car accident in 2006.

I've been given a prescription for Omeprazole (I think prescription Nexium). It seems to be helping a bit to tame my wrecked tummy. I hope it's enough.

I am a "Moderator" of this group. At one time, I was bent on helping others talk to their doctors to gain adequate pain control of their TN. Now, I'm here with a warning. TAKE AS LITTLE AS YOU CAN TO DULL THE PAIN FOR AS LONG AS YOU CAN! Graduate your dosages up as slowly as you can manage to go about your day to day activities, if opiate therapy works for you.

I am the founder of the "Opiate Therapy" group. I still believe that they are an underutilized tool in combatting the changes Trigeminal Neuralgia brings to one's life. But, be careful. Be aware how these agents can affect your body over time. Know that, in essence, they are poison, poison that can reduce the pain, and sometimes, definitely the lesser of two evils. Let me say this to you, though, be very careful. You only have one body. The pain from TN may be ruling your life, and if prescription pain killers help, great, because some people aren't helped by ANY medication.

Do follow your physician's orders, but make sure, with your doctor, that benefits of prescription pain medications are outweighing the risk.

This blog will serve as my progress checker as I see how low a dosage I can manage without sacrificing quality of life to my Type II TN. I won that battle, and got an adequate prescription of the medication to control my pain. But, the price has been a disorderd sleep structure, worsened constipation, drowsiness at inappropriate times, (which I feel may result in the loss of my employment), decrease in reaction time while driving, weakness and lethargy, etc. I could go on. A big reason I want to to distance myself from "Master Methadone", is the fact that it is the hardest drug in the world to stop, or so I've heard.

I began this treatment due to the fact that the drug interacts with NMDA opioid receptors, while others do not, making it work better, possibly, for neurologic pain than other analgesics.

I am told by my Pain Management Doctor that I am on the second highest amount of pain medication of anyone that he currently treats. He has researched options. He talks of pumps which could go under my skin to deliver medication. He is very sympathetic to my pain. Now, though, that he sees the side-effects that I am experiencing, he is at a loss for how to treat my Type II TN pain, and also safeguard my health. I sense his frustration. I can tell that he cares for me, and wants what is best. In that sense, I am also very fortunate. Many chronic pain patients are dismissed, left to suffer, or at the very least, treated like numbers by their physicians.

Upon my last visit, he offered to up my dosage of Roxicodone, if I could shake one Methadone per day for a total of 20 mg.. If I did this, he would then giv me 4 30 mg. Roxicodone daily. I think I am ready now to take that offer upon my next appointment. I hope it still stands.

At any rate, I intend to chronical my progress here, on my blog.

Yes, from earlier blogs, you will be able to tell I've come full circle in my thought processes, and what I have learned from taking this route. Maybe someone will benefit from my experience, maybe not, who knows?

My family is depending upon me. They love me so much. They suffer when I do and it hurts to watch them suffer when I do. They've been through so many ups and downs with me and my "poor health", due to Type II ATN, being undermedicated for the pain, and being possibly overmedicated for the pain.

Red Lawhern has made mention before that oftentimes, patients cannot deal with the side-effects of long term opioid usage. I am feeling the brunt of that now.

It's a catch 22. Relief, but at what price? It's a very delicate balance.

I would like to know. How much can I cut? How low can I go when it comes to medication for the sake of my health.

I want to be around for my daughters, and my wonderful husband, who, just yesterday, despite all of my problems, bestowed me with one of the most beautiful upgrades of a white gold and diamond engagement and wedding ring set I've ever seen.

I'm fortunate to be loved and needed.

I'm also fortunate to have found this wonderful site, where I can converse with people who can understand part, if not all of what I am facing.

As always, wishing all of you effective, informed and compassionate care.

Your friend,


P.S. Please excuse any typographical errors. It is time to feed my family and I've no time to proof.

Hi Steph,

It’s great to see you posting! I am still mastering methadone also, tried diclofinac lately and no change . Next step to possible get off methadone with breakthrough diludid is a lidocane infusion. This will be my next step. Thanks for being a mentor and inspiration. It’s great to get updates on how you are doing. I have been working a lot to help with sarcoma awareness and genetic research. I still enjoy moderating here but miss you very much.
Take care,

Stef, some of these health issues may improve a great deal if you're able to change your meds again. Hopefully most of them can be reversed. I know there are not that many options left (and can relate to everything you wrote), but it sounds like the short-acting may be a good switch for now. I have wondered whether things would be better if meds were rotated more often, and maybe you could reduce your overall intake for awhile.

I had a long drive (my family needed me) and I cut way back on opioids a few weeks before. I was really surprised that I still had the issue with the terrible drowsiness, and it made me question whether it was really the anticonvulsants that were causing it. You know, like you're describing, where you have to pull over and sleep for 20 minutes because you cannot focus your eyes. working with my dr., I also changed the dosing schedule on the anticonvulsants and still had this issue during the day. So I would look over everything you're taking for the culprit. I don't drive much anymore, so it must be really hard having to drive every day. I am worried for your safety, too.

I went to a naturopath and have had a lot of luck with an ayurvedic medicine, triphala, for the constipation. I went from really struggling to having it not be much of an issue anymore. Available at health food stores; I had never heard of it before. Please try if you haven't in the past.

You sound really down -- glad you're remembering how much your family loves and needs you. If work ends up being too much, they will still love you just as much. Kids most need to have you around, so please stay safe. Hope your doctor can help you, you are lucky to have this person on your side.

Thanks for your replies, ladies. I hope you are doing well. So much has happened since I posted this. I'm about to blog about it. I don't want anyone to go the same route I did. I wanted a quick fix to my problem so I could keep on doing everything I needed to do. It didn't work out. I'm off methadone. They say only 10% of people who start ever are able to get off of it. But, I think I've lost my job. I'll find out soon. Come January, I don't know how I'll pay the bills. This disease robs us of so much and sometimes, it's hard to stay positive. I've come to realize though, that PRN pain meds are the only way to go, if you're going to use opiates to control your pain, unless you are in so much pain that you don't care if your digestive system and other vital organs are wrecked.

Some famous examples are Elvis and Tammy Wynette.

I am so freightened for the future of my children. My husband doesn't make much money, and my disability won't pay the bills for two children. I never wanted to be this person. I still have to take my break through opiate med, and a benzodiazipine to be normal.

But, thank God, I'm off Methadone and no drowsiness driving.

Tracy, I've missed you too! <3

With love,