Pain contol

Hello. I came down with shingles May 2016 when I was 48. I am a nurse anesthetist, so I'm very familiar with pathophysiology and narcotics. I won't waste time explaining my profession. Its akin to a nurse practitioner who does their masters degree in anesthesia. Anyhow, my pain was at a 9 at first. Used an old oxycodone bottle liberally. It didn't do much if at all. So I quickly found a pain specialist. These are anesthesiologists who finish their residency and then do a pain fellowship. This was a group of 3 docs. The first was an older gentleman....kind...he said he would start me on an older drug that historically had been good for phn pain.....methadone. It didn't do much for my pain at the dose he prescribed. My next appt I saw the next partner. He stopped the methadone and put me on MScontin. At the dose the nervous doc prescribed, I had little relief. Then I saw the third partner. He had a better resume than the other two, much smarter. He stopped the oxycontin and put me on fentanyl patches. It's a powerful drug. Kills a lot of people who misuse it. We use a ton of it in surgery. It wasn't helping me. I called him and he upped the dose. My second call he bumped it up again. Now I was on doses that terminal cancer patients use. Still no relief. So we went back to methadone and increased the dose a bit. Finally some relief! Some.... Then we tried another route....an intercostal nerve block. Injecting a local anesthetic mixed with a steroid. I was heavily sedated. No success. During this May through September I was also taking lyrica. I traveled to Cleveland Clinic. The M.D. I saw said he thought I would have the phn for at least 2 yrs. He wanted to try a treatment called Qtenza. Read about it at their website. The doc said it had a 50/50 chance of working in his experience. It was very painful but it was because they didn't give me pain or sedation meds. Needless to say it didn't work. Now the pain guys at home were getting frustrated and nervous with the amount of narcs I required. We all worked for the same anesthesia corporation and this may have played it's part. I had to find a new doc. I called my anesthesiologist friend and she recommended a friend of hers. Thank God above he is wonderful. I am so blessed. Truly. He right away upped my methadone and it brought my pain down significantly. From an 8 to a 4-6. He tried an epidural on me to see if it would help. I didn't feel a thing and had no sedation or pain meds. He's got the touch, but it didn't help the pain. So during this time I was on 60 mg of methadone. 20 mg every 8 hrs. and lyrica. I went to see a neurologist to see if she had any ideas. She put me on nortriptyline. It really helped. It's also an old antidepressant. It IS indicated in the treatment of phn pain, however. We ended up increasing the dose some months later. Still on lyrica at this time. Forgot! The first group had me using 2 creams. One was 5% lidocaine. The other was ketamine/gabapentin/anti-inflammatory cream compound from a special pharmacy. This was my last resort when I was in uncontrolled AGONY. It was very helpful when it kicked in, but i had to have someone put it on. I cried bitterly and occasionally screamed from the pain when my mom put it on. Back at my pain doc we upped the lyrica to 200mg every 8 hrs. I take my nortriptyline at night. It makes one sleepy. I was given a prescription for celebrex, so I thought, what the Hell. I take it once in a while. I don't mess with Tylenol or ibuprofen. Daily, long term use is very hard on the liver/kidneys and mine was dealing with enough already. Also forgot to mention that when (at 48 hrs) I knew I had shingles, I was immediately started on an antiviral (and steroids). The antiviral is the protocol at onset. Not much of the literature support the use of steroids during onset of phn, but I did what I was told. Oral steroids are NOT something to use freely. It is some serious sh_t. and really messes some patients up. Prior to this all I was on two antidepressants and a mood stabilizer for type 2 bipolar. Still on these meds plus another antidepressant, making it 3. My pain doc jumped on the bandwagon of legalized marijuana here in Florida. He wanted me to try it. It is supposed to help heal nerves, too. I don't know if it helps my pain but we are still trying different concoctions to see what will work best for me. It comes in drops, creams or vaporizer. It helps my anxiety for sure and really helps me sleep at night. Now methadone can cause heart rhythm problems so I required an EKG every 4 months. With my last one I did have a change. We switched one of my antidepressants because it can cause similar rhythm problems. A week later my EKG was back to my baseline. But my pain doc wasn't happy. He wants me to cut the methadone down by half. Now I am working on decreasing the methadone SLOWLY and pretty easily. Decreasing methadone too quickly is Hell on earth and worse. While cutting back on my methadone we are adding a new drug to replace it. It is called Xtampza ER. It's extended release oxycodone. What's good about it is they have built it so that it is abuse deterrent. I take it every 12 hours. On it's website you can get a coupon card that covers most of the cost for the first year. So that is my narcotic journey. I have done a ton of reading on the internet to educate myself on the meds that help nerve pain, that have been studied and the consensus say it is indicated. Oh, my shingles went from breast bone, under my breast around to my spine. It felt like I was in a vice or bitten by a shark. I have lived topless at home since I got sick. I go out shopping or doc appts and shirts are torture. The shower hurts. Sweating down my back is horrible. I mostly sweat head to hip on the side of my shingle. It is bizarre. The narcs and menopause cause my sweating. I have recently heard about the use of an old anesthetic drug for phn. A powerful narcotic I've only used in surgery. Ketamine. They are successfully using it intra-nasally and intravenously. You can read up on it. It is also being used intravenously for depression that isn't responding to meds. For phn, when IV ketamine is correctly administered in the right/safe setting (hospital or out patient surgery) the weird side effects and hallucinations rarely happen. Research and find a facility in your area where the ketamine IV treatment is frequently done. Don't misuse any of the meds. They can easily kill you. I have to say, be careful to take what other patients say as the Bible. Many lack the education and understanding of the treatments and meds. Read the medical websites like Medscape or Mayo Clinic website. Educate yourself on this stuff. I'm still learning. It will empower you. You may even end up knowing more than your doctor. Good luck.🤝