Hi everyone, just wondering if anyone finds narcotic pain relief works for their TN.
I had the night from hell last night, constant attack for nearly 2 hours just fluctuating up and down a little but very very painful.
The doctor I saw in the ER gave me oxycodone as she knew how painful TN is. I am nearly out of it and I only ever use it for nasty attacks (not as a usual med).
When I went to see my family doctor he wouldn't give me any pain relief at all (NSAIDs, any sort of acetaminophen, etc etc don't work at all, basically nothing works other than the oxycodone). So he basically said no you don't want that you'll end up addicted, it's only prescribed for cancer pain.
Yet in my nursing career people have had opiates for all sorts! And as far as I have always been told so long as you have physical pain that the receptors in the brain the opiates work on you don't have much of a chance of getting addicted.
Do I get a second opinion? What is everyone's opinion on opiates for themselves and their pain?
Oh and the only way I could go back to sleep after the 2 hours is taking some of the little oxycodone I have left in the cupboard, it dulled it slightly so I could collapse into sleep (unfortunately another attack at 4am but at least I could sleep after that one too).
Yes I have been living off of cocodamol ( codeine) since my pain started a few weeks ago! My doctor hasn’t given me a repeat prescription for anything yet so I’m really trying hard not to take them unless the pain is REALLY bad, being as I seem to have type 2 I have niggly pain from about lunchtime to bedtime when I take my amitrypteline
Opioid treatments are now considered an accepted second line of treatment for trigeminal neuralgia pain by no less than the International Association for the Study of Pain. If you care to read in depth, please send me mail at ■■■■■■■■■■■■■■■■■■■ and I'll send you a copy of "Recommendations for the Pharmacological Management of Neuropathic Pain: An Overview and Literature Update". I can't post it here because it is copyrighted by Mayo Clinics.
That would be great Red, and especially helpful if I have patients who have neuropathic pain (maybe I can tell the doctors a thing or two) ;)
Richard A. "Red" Lawhern said:
Opioid treatments are now considered an accepted second line of treatment for trigeminal neuralgia pain by no less than the International Association for the Study of Pain. If you care to read in depth, please send me mail at lawhern@hotmail.com and I'll send you a copy of "Recommendations for the Pharmacological Management of Neuropathic Pain: An Overview and Literature Update". I can't post it here because it is copyrighted by Mayo Clinics.
Have you seen a pain management doctor? In my quest to fight my TN pain, this is the one doctor who really seemed to empathize with the pain I was in and want to get to the cause of it and not just up the anti-convulsant meds. He gave me a prescription for Percocet without making me feel like I was a drug addict for wanting pain meds. I went through a period where the Percocet greatly reduced my TN pain. However, it did come back and get worse after this brief period of remission. I am now on a moderate dose of Trileptal and it is giving quite good pain relief for the time being. I still have Percocet and only take it at night if I have had a bad pain day. I don't understand doctors who think everyone who takes opiates is going to automatically become addicted. I don't think they have a grasp on the severity of TN pain.
Yes, I use oxycodone as a break through pain medication. For me, when the pain is not controlled by the gabapentin and trileptal, this is what I use. I have had one doctor say that it is not accepted medication and another say it was fine. Depends.....
I don't think we really have pain specialists here for outpatients. Though the next time I see one of the pain consultants at work I will haul them aside and ask them who I can see as an outpatient.
I'll make an appointment (yet again) for a doctor this coming week. I want to change doctors clinics but it's really hard not living in a big city so there's not so much variety and a lot of places are full and not accepting new patients. Let's hope I hit a decent doctor (and you would think they'd at least half-listen to their patients especially an RN!) :/
Porcelina, you might consider printing out and taking with you to any new doctor appointment, a list of interview questions that can help establish a constructive relationship where you are empowered as a member of your treatment management team. There is a section of our "Face Pain Info" article series that offers just such a list. Feel free to use it.
I spent years, about three or four of them, denying the offer of opiates by my Dr., having taken them before with zero relief. However, last October, I was just in terrible pain and had been since July. I accepted the offer of Lortab. And, what do you know? the Doctor was right! I take them now as needed, and have done so since October. I think the reason they didn't work for me before because I wasn't taking Gabapentin and Baclofen. When I am not in pain, I never even think to take it. I was pain-free for 4 days and pain is returning in small increments. Laying down or bending over can really get it started, so I started taking Lortab in the evening with the other meds. It has worked so far. I had 2 nerve blocks, the last one, 11 days ago.(wish I found this site sooner) All I can say about it is, I had 4 glorious days that were pain-free, and far, far milder pain since. It gave me a little time to regain my "footing" to stand strong. I can't say that I wouldn't do it again, desperation is strong motivator. BUT, I also wouldn't recommend it.
Btw, I stayed so guilty and fearful for the use of opiates! "Don't take too many for too long, you will get addicted. Then you will have even bigger issues." The article about the use of opiates was very comforting and liberating for me. It did explain why I could take 3-4 Lortab a day for so long and then never even consider it when I wasn't in pain. And I was repeated "hurt" that my family didn't like me taking them. They are my support and I value their opinion greatly. It hurt because I felt they were more interested in pill management than pain management. I still work making custom draperies(labor intensive but very fulfilling) and quite frankly, Gabapentin, Baclofen and Lortab are not near the challenge for me as Tegretol was, in terms of "The Fog" .
I believe that it is important to understand the difference's in addictions that exist in our culture today. If taken as prescribed with a little modification during difficult times Opioids can be very helpful, based on my layman's research. Inevitably, physically, your body will become addicted over time. And as with some drugs a tapering off the medications will be best. The problem is if you develop a mental addiction to the medications. Basically you like the high that they give you and you can tolerate life better with them than without them. This is where I think a lot of doctors minds go when asked for strong opioid medications. Now I am not a doctor, though I did stay at a Holiday Inn Express once. But seriously, many people walk into a doctors office like sheep and accepting what they say it the word of God "rays of lights included". Red made a good point about the questionnaire, use it, it is a good tool. I have sent out my own questionnaire once before I had oral surgery. I did my research about the DDS/MD's...AKA Super Dentist's. I told them that I had done my homework about the different treatments and gave them some basic questions about treatments. I also included copies of a CT scan of my mouth from a month earlier. Out of the 5, 2 responded. The one I chose was the one fresh out of internship. I had a friend who is a prominent endodontist set me up a lunch with the head of oral surgery at a large dental collage. He advised me about these dentist that actually complete medical school prior to becoming dentists. He told me about one of his students that had just graduated and was the best he had seen come through in 15yrs. He was the one I chose. I was pleased with the outcome.
Back to the topic. Many of the gaba's and carba's and a like drugs come with physical dependency when taken as prescribed. I wish you all the best with your search for a pain free nirvana. If opioid treatments work well for you I say go for it. Being pain free both physically and emotionally is priceless. The stigma associated with opioid treatment can cause a sense of guilt in the patient I think. Doctors can even further stigmatize you. I bet if their loved one was hurting with a chronic ailment and the specialist recommended, oxycotin and hydrocodone and they would keep their mouth shut......anyway thats my 2 cents worth. It's your body, not theirs and not the governments that likes to over regulate things that is none of their business.
Thanks for your replies once again. We have plenty of patients where I work (general medical pediatric ward in a large/national pediatric hospital) who doctors/pain team, when the patient is in agony for a physical condition, happily put onto Patient or Nurse Controlled Analgesia (the pump with the button you push for a shot of morphine, sometimes with a small background amount of morphine running, with a lockout time so that you can't push the button lots and get heaps and go unconscious). And yet for chronic pain it seems that opiates aren't prescribed.
Doesn't make any sense to me, pain is pain whether it is short term or long term. A friend of mine has abdominal adhesions and is in hospital and she has sevredol (immediate release morphine), MST (controlled release morphine) and codeine. It'll be interesting to see what she gets discharged on (they have told her she will be unable to drive so perhaps she will be discharged on them). Perhaps if it is something they can see (via ultrasound or other electronic imaging) doctors aren't as reluctant to prescribe opiates. And yet for many of us there's nothing to see.
Of course none of us are imagining our pain yet not seeing anything maybe we are less believable, and we may not have pain while in the appointment to show them (though the ER doctor who saw me that prescribed me oxycodone saw me in tears).
Back in nursing school I was told to believe people in pain. And of course there are physical markers (higher pulse and blood pressure for example). The day I ended up in the ER that morning a stupid doctor told me my BP was up and I should see my doctor about it HELLO that's because I'm in pain!!! (the day before it was a textbook 120/80 which it always is and would of been on the file) *shakes head*
So far with the oxycodone I've never had a high off it because I've used it for physical pain not psychologically.
Don't think we have Dilaudid here, sounds wonderful from what I have heard lol! :)
Off topic but I am highly sensitive to Dilaudid (it makes me convulse and throw up, the hospital puts it as an allergy though I am not sure that's what it is exactly) I should probably check which other meds in the family I should stay away from.
Not to quibble, but we probably need to make some careful distinctions of vocabulary where opioid medications are concerned. Physical tolerance or dependence on opioids is sometimes called "habituation" in medical publications. Many specialists in this area of medicine would regard addiction as a very different thing. Addiction involves a pattern of drug seeking and emotional volatility in which the addict seeks ever-larger quantities of the drug of choice, in part for the euphoric high they can produce, and the feelings of uncritical well being -- apart from pain relief. I've seen papers published in mainstream journals that assert that pain patients almost NEVER become addicted in the sense I am using the term here, even when they become habituated to a drug for its pain-relieving effects.
Off topic, but I would love to be able to sit with a group of TN folks in my area, but haven't found any but one person. And, on topic, my pain meds don't even make me sleep. They just take the edge off...perhaps knocking the number down a point or two. I'm fortunate my neurologist gives me any since every doctor here seems so worried that people will become addicted.
Lee Ann, if you want to send me an email address privately, I can look up other members in your area and send out an invitation to chat on-site, or to talk with you and to each other off-board about getting together at a physical location. There are plenty of folks in your general area if you'd like to have a "Spring Meet-Up".
I was told by my GP and my neuro that opiates did not work on "nerve pain." Which is why I pushed my GP in in particular who has been treating my sciatica for years with narcotics and muscle relaxers..... "it's just different." To which I explained, "I am an educated, well read woman, who survived a rigourous education. I think I can understand an explanation of why it is different." Of course, no such explanation was provided other than, really opiates make it so "you don't care." No, I am sorry, opiates make it so that my pain goes for an 8 to a 2 or 3 and is tolerable. I still care, believe me.
Oh really, I have sciatica too (probably related to a tailbone injury when I was about 10). Osteopathy works for a while on that but I can't really afford $60 an appointment!
I just rang my doctors office and the receptionist said oh your doctor is Dr X who I saw last time that wouldn't renew my oxycodone. I said ummm can I see someone else etc and she waffled on how experienced he is etc etc. I am pretty pissed off, what happened to being able to ask for another doctor and a second opinion!!!!
I'll have to march in there, get to the point, wave the pain paper Red emailed me at him and put my foot down!
Not looking forward to this :(
I'm really going to have to look for another clinic to go to, not giving me someone else is against my patient rights.
