Porcelina, The neurologists office where I saw the guy who had me on tegretol w/o and blood tests, put me with him AGAIN when my GP requested a second opinion w/ another, well know neuro in this guy's office. When my hubby and I went in for the second opinion, she was so nervous about seeing a colleague's patient, it wasn't funny. Plus, she said that you need to choose a pain management doc or a neuro, you can't have both. Each think differently about nerve pain so you need to decide which camp you want to be in. She gave me her opinion on using botox migraine treatment for the migraines I was having, gave me great advice on other supplements for migraine and nerve pain and basically said good bye, nice seeing you. We were a little insulted, but could grasp her side of the issue. If we had gone to anther neuro office for a second opinion in the area, we would not have encountered such a reaction. The good thing: we settled on the pain management specialist in the area and getting botox out of the hospital where he works, means no large copay for us. I wonder if the second opinion neuro doc knew this? Anyway, it did work out.
If your doc is not treating your pain seriously, maybe it's time to find the guy who was meant to help you through this awful time in life. When 98% of our meds are non-opiate, I'm not sure why there is such a fuss. It's no fun to have pain and there has never been a med I've tried that took me to the clouds somewhere and caused pain to be non-existent. Perhaps our job as patients is not to be just part of our pain management team, but to help those docs who don't know too much about our rare disease, to understand where we ARE in this pain cycle. It's so hard to do when in pain, but maybe, little by little, we can make a difference?
You can't see both doctors? Don't get me started on how screwy your health system is! :) I do kind of wish I had had health insurance now so I could "shop around" privately for people though the best care I've ever had was through the public system so I'll just put my faith in that (unfortunately I can't throw my weight around as I work for a different health board than the one that I fall under as I live quite far from work and am in a different catchment area).
We do need to be proactive and help doctors who don't know a heck of a lot about this. I am so glad that I was only misdiagnosed once compared to those that had years of it.
Here's hoping we all find doctors who can all help us with all the meds we need!
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.
JW, I so appreciate your comments and your humor. Since becoming a member of this elite group, I have become more educated and strengthened. While I don't think "validated" is quite the right word, I no longer except from anyone, judgement. I usually don't say a word, I just do not receive it. I am very good at taking correction and using it constructively. I believe that it is essential if I am going to live "my best life".
I have an inherent distrust of Doctors, they have treated me poorly concerning a diagnoses and severe pain for over 2 years before I knew what the condition was. The doctors that I have now are great, but I still ask a lot questions (including the list that you referred to)and I try really hard to do my homework. I think that my doctors must know that I am proactive in my health care and treatment plan, but that I will challenge them to do the best they can and know all they can about these conditions. With no apologies, I will never allow the medical profession to be dismissive again. After all, they are not only not God, but I am paying them for their service. I am in no way trying to be difficult, it is just that they run a business and so do I. In my business, if I am asked a question that I don't know the answer to, I get busy finding the answer. It IS my job.
OK, now the rest of the story! I have learned that during times of ease, that is when I have to do the homework. If I wait until the pain is bad, I am really emotional. All I want is for someone to do something to make it stop! And all the stuff above flies out the window! Lol. The "crisis form" has been huge for me. I have been in crisis many times feeling that I had to suffer through it. I am thankful.
OK, I am sitting at my computer, playing one of my mindless games. I was thinking about something that was said about a feeling of being "High" and somewhere I read the term "euphoric". Please forgive my inability to remember the "where"s and "who"s, I take a bunch of meds myself, and I have read a lot on this site today. This may be more of my silly sense of humor, but I started to laugh, out loud. In my youth, I tried a few recreational drugs, so I decided that I may still remember "high", it has only been 30 years or so. :-) However, the sobering thought was, in 20+years of taking very, very serious drugs for pain, the only "euphoria" I have ever experienced has been drug free and pain free at the same time. I had a short period of time(Late Dec-Early April) last year with no face pain and I stopped taking the meds. I tried to commit to memory every minute of it! I imagined that it must be what heaven will be like, but I have TN, so I can't joke about death or Heaven. It is kind of like talking about bombs at the airport. I had fibromyalgia pain, which I considered nothing after enduring TN. I hope you found that thought process entertaining too.
Oh yes I am sure that must be euphoria being pain free and med free (for me that was only a few weeks ago before I got TN but hey I struggle to remember that far back, a. because I'm on fuzzy wuzzy Tegretol and b. because it seems so long ago when you have pain to deal with!). The last "high" I had was probably being merry on some sort of alcohol and that would be at least 5 years ago before I had my daughter! There is no way oxycodone gets me anywhere near that!
I think it's every health professional's job to make information available to patients. CORRECT information! I always said to my nursing students when I taught on a nursing degree if you don't know the answer say I'm sorry I'll have to find out for you, don't ever pretend you know and give them false information that you think *might* be correct.
A few years back, I became seriously addicted to codeine( an opiate) because of my TN. I began taking a few Tylenol 1's with codeine every few hours, because I found that it calmed the pain alot. However I had to keep taking more and more eachtime to get relief. My doctor would not give me a strong prescription so I kept buying bottles of 100'sm going to different pharmacies because you had to ask the pharmacist for them, and became dependant on them to get through each day.After about a year, It got to the point where I was taking twelve at a time, 3 or 4 times a day! I was seriously damaging my kidneys and liver, but I didnt care at the time because of the depression from pain. Thank God my partner helped me escape the trap I was in and he helped me quit cold turkey with much love and support. I have tried oxycodone, percoset and others, and although they helped with the pain, I realized that perhaps they werent making the pain go away, just making me not care as much about it, in my longing to feel ANYTHING better. I am so glad I stopped, and refuse to touch the opiates anymore. I wouldnt want anyone go through what I did. I found the doctors mix of tegretol, baclofen, gabapentin and arthrotec to get me through. Trust me, the addiction isnt worth it.
I'm sorry that you had to go through addiction and withdrawl while weaning yourself off the drugs. What I will say is I don't recommend anyone go cold turkey off anything they are addicted to especially opiates. There are supportive measures that can be prescribed such as diazepam to help you through the withdrawl process in which you are slowly weaned off. It is safe, it works and it doesn't throw your body into a possibly fatal spin.
However I am glad that you managed to stop. Yes, for you it wouldn't be a good idea to use opiates again given your history with them.
After reading the posts here, I counted down my hydrocodone to find that I am already taking much less that I was. I have a set plan in place to get off of them. The TN is finally under control but Fibro has been ignited. Even though it is really uncomfortable, I really can manage it without the use of narcotics. There were several factors that I considered when I made the plan. The most important were not wanting to create a another problem for myself and not wanting to become desensitized to it's effectiveness. many times, that medication made the difference with TN. I read my earlier posts and I can see that I was venting some and was still defending myself. With these conditions, I find it very difficult to make the very best decisions when the pain is so bad, especially TN. I have an excellent support base. I can speak freely with my daughters and we are talking about advance plans. I would like to thank every person in this support group for their contributions and support. I learning so much and I am far more confident about my future. Hugs to all
That's great that you are taking less Sara! I find that I tend to get a bit co-dependant about decisions when I am in pain (which means I am probably not making the best decisions either) and hubby gets overwhelmed and then he has a big tantrum at me! Then I feel a bit silly being a nurse and having to ask him for advice.
That's great also that you have a good support base. That's probably the most important thing we need!
I have other chronic pain that only one thing touches - Vicodin. However, I made the mistake of asking for it, and now no one will give it to me because (as said in your post) I "might become addicted." I told them I'm not taking it for pleasure, I take it to manage the pain and to help me live a functional life. I've never taken more than 10 mg a day, which is two 5 mg/500 mg at night. NEVER in the daytime, NEVER when I have to be responsible for something. My dosage did not increase. But I asked for it, so that was "drug-seeking behavior" and I can't get it. I asked for ibuprofen, too, and I can't get that anymore from them even though it's OTC (and not on a schedule of controlled medicines). "They" (the health care providers) are under a lot of scrutiny right now for prescribing controlled substances. It really irritates me that they are prescribing (or not ) NOT for what will help me function better but because of what might happen to THEM. I know in my heart of hearts that none of them really give a rat's bottom if I am addicted or not. They just care about what will happen to THEM because of my taking the drug. If being addicted will rid me of the pain and allow me to have a normal life, then bring it on! But I won't get addicted, partly because of what you said, if the drug is working on the pain it isn't reinforcing the pleasure. One HCP who does sympathize prescribed Ultram, which is ALSO known to be addictive, but because it is so cheap and I couldn't turn around and sell it (oh, yeah, they think about that, too) they don't look at that as closely. Fortunately the Ultram combined with NSAIDs and Benadryl are allowing me to function. You asked my opinion on opiates for our pain? My opinion is we are adults and whatever works is what we should be allowed to buy. They also need to look at what we DON'T ask for - I'd never ask for morphine, for example, because it gives me nausea and doesn't last that long and doesn't allow me to function. It sounds like your family doctor is more interested in the liability to him rather than the relief to you. I sure hope your pain is under control by now. xoxoxoxoxo, Stella
Hey Stella, I can't tell you how many times this same conversation repeated in my head. when I am desperate for relief, I want somebody to DO something! I encourage you to read through the "Pain Info "pages. I read through them every week or so. I take so many meds that I don't retain information well. The information contained in those pages has been invaluable to me concerning my relationship with my doctors. Five weeks ago I was referred to a Pain Management Specialist, I was determined not to go through what I had before so many times. I needed compassion and I needed them to believe what I said, and to listen. I understand your frustration, probably everyone here does. In my case, they had to trust that I was very responsible with my meds. I keep track of what I take and when. I track the pain and what may have started it. When they saw that, they knew I was serious! I need my pain manged in order to live the great life I desire, but I also want to be able to stop them easily when I have periods of remission. I even told my doctors and my family how hurtful it is,that having watched me really suffer for over 5 years, that they would rather see me in pain that in pain management. it changed all of our relationships. i am very responsible with all my meds, and now I entrust my support team to be responsible with me. I hope that you are encourage that things can and will change for you. I'm rooting for you! xoxox
I did end up convincing my doctor to give me oxycodone in the end. He said he was especially wary with me because I have access to opiates in my job therefore if Iwas to become addicted I could start stealing from work and lose my career etc etc. I promised to only use it when I can't take the pain any longer and only once every few days. Which is what I have done. I'm wary of my career too!
Heehee when I hear Vicodin I just think of House on TV! There are so many drugs we don't have here (hydrocodone is one of them). I don't know if that is a good or a bad thing.
I don’t think the pain mgmt dr I’m seeing has ever treated TN. He’s treating me like he would any regular chronic pain patient, “it doesn’t matter if you’re getting no relief from the medicine. Don’t call the office for a week unless you have an allergic reaction.” WHAT!?! Week from hell followed… Has anyone found a way to communicate their pain with a pain mgmt dr to get adequate pain relief??
Either give him printed information or have him look up and study the subject of "trigeminal neuralgia" so he can see what others WHO ARE MORE PROFESSIONAL THAN HE have to say about it. Report him to HIS management for what he said to you about it not mattering if you get no relief. — Pat
DFisher said:
I don't think the pain mgmt dr I'm seeing has ever treated TN. He's treating me like he would any regular chronic pain patient, "it doesn't matter if you're getting no relief from the medicine. Don't call the office for a week unless you have an allergic reaction." WHAT!?! Week from hell followed.... Has anyone found a way to communicate their pain with a pain mgmt dr to get adequate pain relief??
Over seas, some countries use heroin for pain management, always in terminal patients and sometimes in cases of chronic debilitating pain. Delivery is via a Barnum cocktail (think Lucille Ball’s VitaMeataVegiment with a kick). Do the patients become addicted? Who cares! They are able to function and enjoy life. Managed addiction is a far cry from the junkie on the street!
poisonivy said:
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!
In my massage practice, I always encouraged patients and client to report if they were on meds, quantity and last dose. There were times I was amazed the person was up walking around and speaking clearly in massive cocktails ie: "In the past four hours, 2 Lortab, 4 Flexaril, 1/2 a Xanax and … "! Then I got in a pretty bad wreck and was able to (goofily) go about life with a Fentanyl 3 day patch on my arm which otherwise I know would have me face down in my dinner plate. The greater the pain, the higher dosage required.
Also, whether self medicating for emotional pain or taking prescribed medications for physical pain, tolerance builds up and should always be considered. Which reminds me, how do you separate the baby? How can a person be in severe physical pain and not suffer emotionally? Many times people came to me with idiopathic pain. My grandmother taught me the rule of three’s and so if a client/patient could recall the date of onset, I’d ask what happened 3 days before, including emotional turmoil. If that proved uneventful, I’d grab a calendar and take them back 3 weeks, months, quarters, years, decades… Seven out of ten times this revealed the injury. For one woman, her date of onset was three months from the day her father died - she burst into tears. One treatment and a few tissues later she reported a 95% improvement.
It seems to me, the baby can not ever be separated. All of these ‘specialists’ use microscopes when the answer is in the big picture. Spiritual epiphany is experienced emotionally as well as physically as is everything… What does Carolyn Myss say about TN? Does anyone know?
Richard A. “Red” Lawhern said:
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.
In my massage practice, I always encouraged patients and client to report if they were on meds, quantity and last dose. There were times I was amazed the person was up walking around and speaking clearly in massive cocktails ie: "In the past four hours, 2 Lortab, 4 Flexaril, 1/2 a Xanax and … "! Then I got in a pretty bad wreck and was able to (goofily) go about life with a Fentanyl 3 day patch on my arm which otherwise I know would have me face down in my dinner plate. The greater the pain, the higher dosage required.
Also, whether self medicating for emotional pain or taking prescribed medications for physical pain, tolerance builds up and should always be considered. Which reminds me, how do you separate the baby? How can a person be in severe physical pain and not suffer emotionally? Many times people came to me with idiopathic pain. My grandmother taught me the rule of three’s and so if a client/patient could recall the date of onset, I’d ask what happened 3 days before, including emotional turmoil. If that proved uneventful, I’d grab a calendar and take them back 3 weeks, months, quarters, years, decades… Seven out of ten times this revealed the injury. For one woman, her date of onset was three months from the day her father died - she burst into tears. One treatment and a few tissues later she reported a 95% improvement.
It seems to me, the baby can not ever be separated. All of these ‘specialists’ use microscopes when the answer is in the big picture. Spiritual epiphany is experienced emotionally as well as physically as is everything… What does Carolyn Myss say about TN? Does anyone know?
Richard A. “Red” Lawhern said:
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.
When I was first diagnosed with TN in late 2002, my neurologist recommended I work with a pain management doctor. I was prescribed methodone, and it helped for many years. I did not like the side effects (moodiness, drowsiness) and with my doctors assistance gradually weaned myself off of this drug over a period of two to three months. It was kind of harsh getting off the methodone, but was glad when it was over. Be cautious...from my experience, I am staying away from opiates.
Heres what we know (and it has changed significantly since 2012 when this thread started and is the basis for newer standards of care. Having a significant flare in symptoms and using narcos to get over the hump is one thing BUT beyong that
The brain responds to the pain medicine by increasing the number of receptors for the drug, and the nerve cells in the brain stop functioning
The body stops producing endorphins (the body's natural painkillers) because it is receiving opiates instead
The degeneration of the nerve cells in the brain causes a physical dependency on an external supply of opiates, and reducing or not taking the pain killers causes a painful series of physical changes, known as withdrawal. Whether or not you are addicted or the now PC term that means the same thing "dependent" By giving a psychobabble rationalization the end result is the same.
Most people who take opioids for more than 2-4 weeks will develop a tolerance to the medication. Tolerance means patients may need to increase dosage to feel the same effect, and they may go through withdrawal if they stop taking the medication. This is a natural process, and it is not to be confused with addiction. When the above happens you be assured of only one thing. Your pain WILL be worse. should you address the new pain with additional narcos the cycle will repeat itself over and over and over again until you either die from accidental overdose OR the pain becomes totally unmanageable. Fortunatley the pill mills are all but shut down. (the used to bill themselves as pain management) In my state the last one was shut down a few months ago with prescribing doctor facing 400+ felonies including several murder charges. People came for hundreds of miles because this "doctor" was so compassionate.
Its one thing to have a little help when things are so bad you can't go on. But to even consider narcos as regular treatment is dangerous and truly counter-productive even if you can find a prescriber.............
