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Living With Facial Pain

OPIOIDS- do they help with your atypical Trigeminal neuralgia?

#1

I’ve been on oxycodone 4x a day and OxyContin 1x at night for about 3 years now. I’m up to 15mg tablets of both. I have tried close to every other drug available for TN.
GABAPENTIN
TRILEPTAL
CYMBALTA
BACLOFEN
LYRICA
KLONOPIN
NORTRIPYLINE

The opioids have been the only thing that gives me any kind of relief. At this point I’m obviously “dependent” on them and go through withdrawals if I wait too long to take a pill. I hate these pills, I know they are a bandied and aren’t meant to be used long term, but what do I do when NOTHING else has given me relief. I do ice my face at night when it’s at it’s worse, and that does help, but as soon as I take it off any relief I had is gone. Anyways I’m just r ally stuck right now. I know they say opioids don’t work for nerve pain, but they do give me about 30% relief. I just really need advice from those out there who DO get relief from opioids. How long have you been on them? What do you take and what dose? Just really need help…

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#2

Take the medications that work for you. My doctor prescribes very small amounts of opiates. We have a good relationship but is afraid of the DEA COMPLAINING of over prescribing. I save what’s left over from a bad attack and have to live that way. I live in WA and augment with medical MJ. MJ can also help with opiate withdrawal too. I too have had crappy luck with anti seizure drugs but take Gabapenten to augment with some results. Hurting today though. Best of luck to you.

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#3

I was diagnosed with TN about 4 years ago. My doctor doesn’t classify TN 1 or 2 but I’ve got TN2 on both sides based on my symptoms (constant burning, boring kind of pain). I’ve tried tegretol, trileptal, baclofen, & tramadol with no relief, just bad side effects. Currently I’m taking gabapentin and hydrocodone for pain. Like you, hydrocodone is the only thing I’ve tried that helps dull the pain. I take a low dose (half of a 5 mg tablet) a few times a day and that helps with the burning pain. I try to keep the dose as low as possible to get relief. Sometimes I have to take the whole pill (5 mg) to get relief but most of the time half a pill works. My constant worry is that at some point I won’t be able to get a prescription for the hydrocodone anymore because of all the restrictions placed on doctors. So far that is the only thing that works! I hate the stigma attached to those of us who have to rely on opioids just to get through the day and be somewhat functional but guess that just goes with this terrible condition. My advice is just to continue to take what works for you. It is hard to find relief from this condition so I’m glad you have something that works for you! Wishing you a good and pain free day!! :slight_smile:

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#4

I take a low dose of gabapentin and nortriptyline, and 5mg of hydrocodone when needed, several times a week. It definitely helps, a lot, but I am also afraid I won’t be able to get it someday, so try to live mostly without.

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#5

Oxycodone is the only thing that words for me, as well. Like all others hear, I fear the day they will take it away from me.

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#6

I’m 25 with type 2 on my left side. I am currently taking only Nortriptyline. But in the past on all of the other 5 drugs I used Hydrocodone regularly to control nearly constant breakthrough pain. In the almost 2 years since my pain started I have used the Hydrocodone 1+ time a week for at least 18 months. Before my diagnosis I was using it daily to sleep for a max of 4 hours, without it I believe I might have died from lack of sleep.
I certainly get partial relief from them and if my Nortriptyline ever stops being effective I plan on supplementing my pain control with Opioids. I hope they haven’t regulated that out of being an option.

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#7

Amitriptyline in low doses along with Klonopin have been the only things that have helped my TN 2. If I had to use opiates one day I would though! If you need it you need it. I have a friend who has had 4 spinal fusion surgeries. He can’t live without them, and I wouldn’t want to see what he would be like without them.

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#8

I have the same issue. I’ve been dealing with Atypical Trigeminal Neuralgia & Glossopharyngeal Neuralgia for about 12 years now, and in that whole time, only Hydrocodone & Oxycodone have been truly effective in reducing my pain. I’ve been taking Lyrica, Duloxetine, and Carbamazepine for only 4 years or so (that’s when I was diagnosed, the 10 years before that all of my doctors thought I was a faker), but as far as I can tell they haven’t done anything to control the pain. Of course, when I told the people I was seeing that, they would tell me how dangerous & ineffective Opioids are for long-term pain management & blah-blah-blah. I’m well aware of the consequences of taking these meds, thank you very much. I don’t need a lecture, I need help.

Anywho, if you haven’t tried it already, I suggest looking into medical marijuana (if it’s available in your area). It’s worked quite well for me during the last 8 years. Just be sure you thoroughly research the laws of your land before you start. You’ll need to know how much you can have in your house, if it can be transported in a car, what sort of DWI/DUI laws would apply, and all that sort of stuff. Also, be aware that everyone is affected differently & don’t expect anything like what you see on TV (i.e. hallucinations, hyper-paranoia, etc.).

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#9

Sounds like what I’ve suspected -from doing lots of reading (but not much posting) on this site, and my own experience- is true; Opioids help with ATN more than almost anything else. I’ve had this now for 18 years- it was bilateral until I had the MVD procedure done a year ago. Now, I still have constant pain but only on the left side.
I use Gabapentin, tegretol, diazepam, and 10mgs of oxycodone 3x daily plus OxyContin-10mgs 3x daily. I’ve found using too much of the opioids does definitely make me more toxic (I’ve been on much higher doses as well in the past-like 10 years ago now) therefore creating more pain, and like everyone am currently worried about the DEA freaking out about this so I’m trying to get down to the lowest dose possible.
If you can get away with a lower dose, do it, but don’t feel like a drug seeker or addict for needing this medicine. One can get just as harsh withdrawal symptoms from gabapentin, tegretol, and much worse from diazepam, but the DEA doesn’t worry about that dependence as much, simply because people don’t use them recreationally (except maybe diazepam). Also, all those anti-seizure medications are harder on one’s organs than the opioids are, but the medical community is so scared now of prescribing them, and possibly losing their license, that many are simply saying it’s not worth the risk to prescribe opioids. So they are treating people based on fear and not on what’s best for the patient anymore. It sucks to have this pain right now- in this time. Those of us who have real pain and use the narcotics responsibly for that pain are being so affected and stigmatized, due to those who have become addicted recreationally, and due to those who overdose on their meds- for whatever reason.
I figure I’m just as physically dependent on the other meds I take, and if this pain magically goes away someday (quite doubtful but, who knows?), I think I’ll be pretty happy to just have to go through getting off the drugs at that point.

This should go on a different thread perhaps but I’m finding that biofeedback and paying attention in a different way is helping reduce my pain and helping me taper off higher doses of all my meds! As I’ve had this for 18 years, I’m always looking for alternatives to the meds and this has worked faster and more effectively than any other alternative. If you have the chance, try it! If you don’t have the insurance to go somewhere, there’s a book I can recommend that is allowing me to try it on my own and get fast results. I don’t know the rules about naming specific books and authors on this site, so I’ll check that out, then if allowed, I’ll post the name and/or authors of this amazing, short, and easy to read book that is changing my life in just a week. After 18 years of almost nothing else working like this, I only started it because my focus and concentration have been really reduced since the MVD on my right side last year, and a friend recommended it for that. However, I’m finding that the super simple exercises are helping my pain (and my mood!) as much or even more than my concentration ability.
Good luck everyone. Each one of you rocks. If you’re living with this constant pain and still functioning, you are a strong, amazing human being. If you need a certain medication to get occasional relief, take it, and don’t feel guilty!

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#10

Congrats on being in remission! The acetaminophen (Tylenol/paracetamol) in most opiate drugs, and the anti-seizure meds caused severe liver complications, so I was taken off of them and put onto codeine without Tylenol, and morphine. They are the best treatment for me, given my reactions to most prescriptions. My pain was so bad that it would speed up my heart (tachycardia) and my heart has stopped many times due to that, but I was always resuscitated. So I was pretty much given morphine to save my life.

Muscle relaxants help the twitches that come with it, and I was also given a few anxiety pills, not due to anxiety, but because they calm the nerve endings when the pain gets unbearable.
I also found some natural things that made a HUGE difference.
Magnesium, vit D (heals central nervous system) vit B complex sublingual (sinks in under the tongue) heals nerve endings.

There are so many meds one can try, so many combinations of doses and meds, you just need a patient Dr. willing to try things until something works. Hard to find. In my 15 years on morphine, I have never needed to raise the dose, and I take less than was originally prescribed, so my Dr. knows I am not a drug abuser and trusts me with these meds. The morphine is less constipating than the opiates that you speak of, but still you should take magnesium or other things to keep your GI tract moving.

Doctors are not taught about pain control in medical school. My doctors have told me they got ONE MORNING about pain control, and they were never taught the difference between dependency and addiction. Dependency is a physical issue, it happens to everyone, you go through withdrawal when you miss doses, so your body depends on it. Addiction, most people in severe pain don’t get addicted. It just neutralizes their pain, rather than making them high and making them crave higher and higher doses to get high. It doesn’t take away all of the pain, but makes it more bearable.
Best wishes to you!

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#11

Hi there,great to hear you are feeling better! Please can you give me details of the biofeedback book you are using? I went online and found that it is used for chronic pain but I can’t afford a private therapist …with this new website I’m not sure how you send me the name but I would just name the book and author here .Thank you so much! Have a good day! Hugs!

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#12

Hi Eileen,
Yes, I noticed other people have named books so I figure all is well with it. The book is called “The Open-Focus Brain: harnessing the power of attention to heal the mind and body” by Les Fehmi, PhD, and Jim Robbins. I’m not in remission, by any means, but it has helped with both the pain and the occasional anxiety that comes with the pain (when you don’t know how much worse it’s going to get and you have nothing else you can do or take).

It’s more about how we pay attention but they used biofeedback to help the test subjects train their brains to be in a more diffuse (and less stressful) state. It also gives several exercises to try, which can help even when you train your own brain, even if you don’t have access to the actual biofeedback equipment.

I’d love to hear what you think once you give it a try!
Good luck,
Christy

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#13

Hi christyr27. Thanks for your very informative posts. I too have ATN and oxycodone has been the only thing that helps. I wanted to follow up and see how you are doing with your ATN. Is the book still helping you? I hope you are well.

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#14

My situation emulates yours in terms of TN description and medicine/perscription potency to actually obtain pain relief, take your best option and build on top, pragmatic security in opiate relief is always balanced risk.

I was 14 Months on Oxycodone slow release, 2pd 50mg… Realising I had to be strategic because NO one will truly understand your burden except ppl you love and other sufferers…
I could see my doctors good intent and reasons when he started my first drop down to 40mg, but I recommend you iniate and control what will benift you best, I cut myself off cold turkey and refused all options that could group me with addicts of heroine(no ill will) stima sucks anywhere but having no option to avoid it is a form of hell.
My probly stupid self suffering move isnt easy but it proves what you know already. Go back and tell them what the difference is, tell them again how painful it is don’t spare a thing also pain trumps all else if pragmatic results are important,

personaly I felt… such profound pain from TN and obsticals we all face and overcome at many levels.
Addiction is a puppy in comparison to the monster sitting on my back… My functional life is all I strive towards, dependency is not my demon my doctors and specialists took me seriously, I tried all anti conv depres etc etc

Always try and search with docs of course alwaus a chance so keep trying everything available to you, building ontop is real even if its small and temp untill all but your soul is exhausted, i wish you luck and good fortune, I got alot better over many years its a complex personal journey…

Political bs over opioids is simply the human reactionary tidal wave of real problems we fix but don’t ever know where or when to stop, overkill in the other direction helps nobody in Australia, laws with balances are enough, leave the Medical professionals alone to do what they invested thier entire life to do… They only need the tools to help regulate + gather info (consent). I refuse to think melevenence is a thing here… Cruel punishment even minute examples effect dr habits… ruining outcomes. from fears prescribing and media/polical influences, this hurts real suffering humans…

America is not in the same situation as us by anymeans, even though some gps belive the issues resemble each other deepy.

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#15

N_hi Michellelen
Sorry to hear about your struggles it varies with everyone. I had MVD 6 years ago which helped me somewhat but never came off the meds. Last year I had gamma knife in Boston it triggered another branch of the TN nerve. I am in so many anti neuralgia meds. I am now having steroidal injections in attempt to quiet the occipital nerve which has been an issue since MVD at craniotomy site. I am in an exacerbation cycle right now with the cold snap which is one of my triggers. My neurologist is trying a new med Ajovy which I inject into my leg 1 x a month for combo of different pain I suffer with since MVD. I only suggest one thing don’t give up hope try try try anything available out there to help with the beast that invites itself into our bodies whenever it pleases. I’ve suffered 25 plus years before anyone believed me. Please don’t give up hope. We may be all different but our stories appear to be all the same. Good luck don’t lose Hope
My Best
Tatto20/ Joanne_

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