Using methadone for Unresolved TN pain

Like most I have tried all surgery options and a great number if medicines. My neurologist says he has a patient taking a tiny amount of methadone successful. It controls her pain and she is able to hold a very big job.

I never used recreational drugs or narcotics.

I do not want to be a zombie and my state will likely think I need random drug testing if I should start this but what do you think? Have you heard, used this?

I have heard of it.If it was offered to me I would try it.
I find that codeine helps my pain when mixed with a muscle relaxant.Methadone is in the same family as codeine which comes from a poppy.So if you twist your mind enough it is a natural health product.We all have opiate sensors in our brains(probably not the right way of saying it)
I believe there is a test available to find out if someone can become addicted to opiates.If I had the test and I just needed the methadone for pain I would take it in a second.
The codeine I get is mixed with tylenol-I worry about my liver more than anything.On the rare good day I can get by on 2 pills.When the pain is bad it is 8 pills.Normal 3 to 4.The fact that I can go down after the brutal episodes makes me think I am not addicted.
Have you tried topical remedies?I have a ketamine topical that helps.
Also medical marijuana helps me sleep.Has not reduced my day pain level ,though.I keep trying new strains.I never used when young so this is all new to me.I say whatever works to ease the is brutal enough without this pain

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Methadone is a synthetic opioid (narcotic) with a very long half-life. It also has very high patient-to-patient variability, which makes it difficult to titrate. Generally, methadone is administered three to four times daily and is not recommended for breakthrough pain. Works great for some people, others not so much. I have also read many people’s notes that it is hell to wean off of. Personally, I don’t know how anyone can take any opioid (narcotic) medication and still manage to work, esp. with all the required drug testing nowadays.

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Interested to know where you saw information about testing for possible addiction to opiates. Addiction is a mental thing…craving the drug,taking more and more of it to get high, thinking about it constantly, etc. Dependency is what happens to the body when you take opiates long term. Both conditions will result in the body reacting negatively to withdrawal of the meds. Those of us with chronic pain, who take opioids long term at the same dose in order to have less pain and some semblance of a normal life, will still become dependent…our bodies will react to withdrawal. But we don’t seek drugs or take escalating doses to get high…that is true addiction.

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Thanks for your reply. Yes, your thinking is similar to mine.

Of course anyone will become dependent on a narcotic over time but hopefully not craving the use of more drug or others as a result.

I became dependent on Lyrica and boy what an awful withdrawal. It lasted at least 6 weeks and I titrated down very slowly. I was truly ill.

Once after I had my spine fused, I took oxicodone. I had forgotten. When I was first waking in bad Pain I took in from the nurse snd at home but my family said I had to be watched. I had no recollection of what they cautioned me to avoid in movement; I could sleep all day without realizing it. Zombie, that was me. As I quickly healed the drug felt awful. So strong it gave me a bad headache, terrible constipation and other problems. I had to stop. I cannot figure how people like it.

This is why I have pushed against a narcotic for chronic pain of this sort. But my internist and neurologist are encouraging me to reconsider one they say would not leave me like this. My pain keeps me in bed crying and pounding my bed for hours many weeks but I love the feeling a clear-headedness. It only there was such a solution.

Thanks again.

Thank you Ellen for you reply.

It’s amazing that we are all so different in how we react to medications. I tried all of the AED meds (gabapentin, lyrica, dilantin, etc.) and all had the same effect on me of no pain relief and loss of balance, inability to think straight (some worse than others) and memory loss. I had no problems stopping them,but I only tried for a month or so. I tried lamotrigine (Lamictal) for about 9 months… no relief and same problems plus leg swelling and knee pain. I finally gave up on all those meds with horrible side effects and take low dose CR oxycontin (10 mg twice/day). It usually keeps my pain level low enough 3-4 that I can enjoy a half-way normal life. Sometimes I still have still take breakthrough meds (oxycodone 5 mg) but not that often. I’ve tried all of the pain meds (except methadone) and I’ve found that this one gives me the best relief with the least side effects (constipation, nausea,sedation). Good luck to you.

Hi Not Again
I know there is dependency and addiction.It is possible to have both.An article is here for the addictive testing.This is not the one I had read-but the first thing that came up online.
I was given oxy after a dental procedure and it did nothing.They then gave me hydromorphine which was way too strong .Took one pill and returned the rest.Codeine and tylenol 3 work the best for me.Not great -but takes the pain down a notch.Wish I could get tylenol 4 but they all look at me like I am nuts.

Thanks. I have not seen this before. Interesting read.


Personally, im all for usimg whatver helps. I am however somewhat “jealous” of your doctor’s ability to take it yet still hold down a big job. As a pilot myself, I was finding huge relief with zero side effects using Gabapentin. But the FAA simply banned me from flying while I was even in the same room as the drug. Blanket denial. Yet other pilots happily get approved to take anti depressants for similar pain killing secondary roles. I guess I’d be l careful as to your own personal job situation. Just because a highly reputable doctor gets to use a drug and it’s good for them, there are sadly way to many over-arching, archaic rules established for the rest of us that can send a career crashing down around us. Good luck!

I would be very reticent about using any type of opioid for pain control on a regular basis. In my case, I was taking Percocet regularly, and developed a whole new type of pain (burning strips on my tongue, pallet, and down the throat) with my ATN. This gradually went away completely after I quit Percocet. It was quite a miserable situation and kept me awake at night.

It has long been theorized that opioids actually damage the nerves, and make pain worse over the long run. This has been shown to be the case in recent experiments with rats. If I get ambitious I will google some links.

If there aren’t other options that work, opioids may be unavoidable. But I would certainly try everything else before them.

Hi Ziggy
So how are you managing your pain?And what are your pain symptoms now?I have non-stop burning.
I do not respond at all to the artificial opioids.
Once you went off the percocet what did you use to replace it?
I do not think I could manage without my prescription.
Not sure whether the gabapentin does anything.
I hope I find out why tomorrow what the exact cause of my pain is.
Fingers crossed.

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Hi ellen5,

Just want to wish you good luck tomorrow.

Currently I have tightness, itchy, achy, hard to describe pain, but no burning at all, TG. Once I figured out the Percocet was making things worse, I worked hard to get off it, even just toughing things out if necessary. The topical clonazepam helped a lot with burning strips.

Currently I manage things okay with the topical anesthetics, chewing gum and mouth guards. I don’t take any kind of oral medication, not even acetominophen or ibuprofen. If things get really unbearable, I take a half of a Valium, but I try to avoid that because there is rebound pain. At some level I have gotten so used to living like this that it doesn’t get too me as much.

Good luck with whatever you have in the works and hope that it is helpful for you!

My pain management doc put me on Methadone a few years ago. I had been on all the usual meds and nothing was working anymore. The plan was to be on it for no more than 2-3 months while we figured out what to do next. I ended up staying on it for 3 years. The first month you’re on it, you can’t drive and I felt high quite a bit, but once it’s in your system I felt pretty normal. It helped a lot with my all day pain, but not breakthrough pain. After a few years, I had built up a tolerance and my doc said he couldn’t increase my dose anymore than he had already. Then my pharmacist called and said they are only filling Methadone for end stage cancer patients, so I had to wean off of it. Let me tell you, that was the hardest thing I’ve ever done. I followed the program to wean off to a T, but it was awful. I had major withdrawal, I was so sick, didn’t sleep for days, and it took over a year to feel somewhat normal. My doc wanted to put me back on it, but I refused. I can’t even imagine attempting to wean off of it again down the road. It did help my pain, but getting off of it was a true nightmare.

Thank you so much for sharing this. It all makes sense and I am not going there. I am sure now.

It seems many do use an opioid version of some pain pill but these dull your brain but do not take pain away especially nerve pain.

So it is very difficult but I have learned 2 pharmaceutical trials are going on in nerve pain for MS patients and that would work for us. We will see if it gets farther along and approved by governments.

Thinking of you all today and wishing you moments of peace.

Burning like anesthesia dolarosa? I have this from a bad rhizotomy for TN.

I am going to try a ganglion block but I need to fly to the hospital and stay in a hotel. Most people do these every week until it works. Not sure how to make this happen?! In the long run. Depressed today over TN management. Very difficult isn’t it?


I work for a pharmacy benefit manager and I wanted to go on record that filling methadone only for end-stage cancer patients isn’t accurate. Now, it might have been a policy at that particular pharm or you might have needed a prior auth through your insurance company, but methadone should have been available.

In fact, any and all meds are available to you. Sometimes you have to do a prior auth for assistance covering the cost via insurance but that’s easy enough and if it doesn’t get approved you have three different levels of appeals available.

Never, ever, ever allow someone to tell you a medication isn’t available! And never let a local pharm tell you a medication isn’t covered by your plan, always-always-always call your plan and get exacting coverage information. As an example, I’ve had pharm tell people a med isn’t covered when the problem is they ran claim incorrectly so it rejected, it wasn’t the medication at all, it was a lousy typo!

Dear Azurelle,
What a lovely name and you have given me valuable information. Thank you very much!

Thats not exactly true (depending on the state) especially regarding the use of methadone. The pharmacist is not simply a “retailer” of prescription medications but has a high level of responsibility in the whole process. We have a doc currently being prosecuted on 400 felony accounts including 4 manslaughter charges involving methadone. The dispensing pharmacy is a co defendant under the assumption they should have known better and questioned the scripts. In any event they are out of business. The 5 pharmacies who refused to dispense are actually the heros in the matter and brought the whole matter to light. If they are refusing to fill, that should be a VERY red light.

Current regulations in most states require co-management of methadone (for pain management) by a qualified Cardiologist who must sign off and provide documentation of certain EKG results. (p and T wave primarily) due to the unusallu high deathrate from arrythmias and methadone. In my community which has 2 of the top 50 cardiologist groups int he country (an one of the top 10 cardio programs as well as one of the top 10 cardiologist) NOT one will co-manage methadone nor will a single pharmacy dispense it outside of Hospice. Use of it for addiction rehab is done in ONLY a clinically supervised setting.