wisewoman,

It sounds to me like you haven't been given the kind of pain medication that works for you or haven't been given the dose that works.

I am definitely a pro at the narcotic pain relievers. My pain is migraines that ended up being 24/7. They started about 10 years ago after migraines were the side effect of my AD meds. I never even had a headache in my life before then.....at that point, I wasn't without one. I started going to a neurologist when it progressed to being continual. I needed the treatment because everytime I would go into the psych hospital, I couldn't get any help because obviously they didn't belive in pain meds. He started with the migraine meds but they messed with my heart, so were eliminated almost immediately. Then came the mild level pain meds. He even put me into the hospital for a week & did an IV treatment with DHEA. He gave me morphine instead of the demoral that I had found worked some & I ended up itching all over my body. It was at that point, I found that morphine & every derivitive like dilodid caused that reaction. He was not willing to put me on narcotics & when an MRI showed up a neck injury, they decided that neck fusion should be the answer to my migraines. After the neck surgery, they provided me with a pain specialist in the hospital that started me on the fentynal patch at 100ug/hour. It was a patch that was changed every 72 hours. They figured that if there was any pain over that was breakthrough pain & I started going to a pain specialist after the surgery along with doing the physical therapy. Unfortunately, the pain didn't go away even with the patch & it continued at 24/7. The pain specialist decided to try other pain blocking treatments & then gave me prescriptions for other narcotics pills. Nothing worked & I went to a pain specialist at UCLA. I was told that I didn't have migraines & that all I had to do was exercise. Try to exercise when your head never stops hurting & with that came a continual upset stomach. I couldn't get out of bed & laid in a dark, quiet room with no smells allowed. I guess acording to her, the migraines must have been all in my head......(yea, that's where migraines are). I continued with the pain specialist & continued going to the ER every 3 days for a demoral shot, just to have about 8 hours of relief. I got so mad at the situation I was in & was loosing patience with the pain specialist, but didn't know what I could do.

I took vacation to our condo in Jackson Hole Wyo & when I got home, they had come up with another pain med that contained fentynal but was in the form of a lollypop that could be taken every 4 hours. It was great....it actually worked when I used it......then came about 3 hours later & back came the migraine. I would use another lollypop & had relief for another 3 hours. That was the first time I had enough relief to function for at least 3 hours at a time. Unfortunately, the pharmacutical company changed the formulation & they quit working. I don't know why but it did. Not only didn't it work, but it was like putting a rough piece of chalk in my mouth & it rubbed sores on my cheek on top of not working. At that point, I knew that the fentynal was working & that the dose I was on wasn't enough to actually work. I knew that the migraine pain I had wasn't breakthrough pain because I was never without the pain as long as I was on a specific level of fentynal. I wasn't willing to go back to the way it was before the fentynal lollypops were found to work & asked the pain specialist if he would be willing to prescribe the higher level of fentynal in an additional patch to equal the level of fentynal that the lollypop fentynal provided. He wouldn't up the dose to that level & then at one appointment asked me if I had any extra patches & to try using 2 of the 100ug patches. I was so happy when I used the 2, I no longer had any migraine pain. My husband was with me at that appointment & heard him tell me that but when I went back to him, he denied ever telling me that & refused to prescribe that amount of patches. He told me he would give me 1 month prescription & to go find another pain specialist because he wouldn't treat me anymore. I coutinued using the extra patches I had until I could locate a new pain specialist. I went to one & she told me that if I went off all my medications that my pain would go away. I asked her what her plan would be if the pain didn't go away & she said that is would & that was the only possibility. She sugested that I go into the hospital where my pdoc & psychologist worked while going off the meds & gave me the name of a pain specialist that worked in that hospital. I went to him & he wanted me to have another MRI & did a blood test. When he saw the MRI, he said that the leisions showed that I was having really bad migraines & when he found out that there was a specifil level of fentynal that worked, he was completely willing to prescribe that level. He said that if it ever quit working (if I became tolerant), that we would have to find another way of taking care of the migraines & then we might concider my going off the med before starting something else. I have been going to him for 3 1/2 years & am still on the same medications without ever needing a higher dosage. I have had other pain that has required medication but as soon as that situation was over, I went right back to just requiring the fentynal.

The pain specialist I have now is awsome & is willing to work with all his patients to find the medication that works for them & then the level that they can tolerate that keeps them out of pain or at least at level that they can tolerate. When I first went to him, I asked him how he was willing to prescribe that amount & the other pain specialists weren't. He said that every month, he keeps track of my quality of life. He said that as long as that is documented, the DEA won't come after him for being incompetent. He said that if the level of medication stopped working it could be one of 2 things.....tolerance is when the level of medication no longer works & a higher level is needed. Becomming addicted is when I need more medication to get the same feeling I get from a narcotic. That is something that narcotics have never one to me. I have never gotten a good feeling from any of them....Vicoden never did that either, so I have a hard time understanding what kind of feelings people get from narcotics. All I have ever felt from them is a relief from pain......with the level of fentynal I am on, I wouldn't think I could even function, but I can do everything I could do before migraines. I am finally feeling just normal without any pain & that has been such a huge relief over the past 3 1/2 years. I just pray that this will continue & don't know what I will do once I move to Kentucky other than fly back here to see him every month. That will be expensive transportation to see a Dr, but plan to see both my pdoc & pain specialist on one trip.

I honestly don't think that you need to go off your meds....I know I didn't. I think you just need to find a wonderful pain specialist that is willing to work with you & find the medication & the level of it that will finally help you control your pain. I believe your pain is real....you need to find a Dr that believes you too.

Debbie