It sucks to be me (esp at 2 am) FENTANYL CAUSED WORST M IN MONTHS

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It sucks to be me (esp at 2 am) FENTANYL CAUSED WORST M IN MONTHS

Post  KimbaK on Fri 07 Mar 2014, 2:19 am

Well, here I am in the wee hours of the morning. My day has totally sucked. The Fentanyl turned out to be bad. So bad in fact, that from Saturday through Wednesday I wished I could just die so the pain would stop. I took off the patch on Tuesday and went back to morphine. Had to go to pain clinic to get that approved and filled. What fun. My sleep was messed up with all the pain so I'm on the emotional roller coaster ride. I asked the nurse for a recommendation / help for episodes where nothing works and the pain is so bad I'm praying for death. I refuse to go to ER and go through all that crap again. She's so horrified she can't help me. Says I have a lot of medications, isn't anything helping. I say usually, but on those days when nothing does, could you please just put me to sleep. They can't do that... At that point, I'm sitting there with tears rolling quietly down my face, not saying anything. Just quietly wiping my eyes and waiting to get out of there. The nurse sees me, freaks out, and puts down in the chard, that I should see the doctor from now on. Which is fine. I've been passed around to every person in the practice. Might as well go back to where it all started. So go home and cry and then pull myself together and get on with living.

Called the plastic surgeon about the procedure to find out if insurance has given any kind of answer. AND THE ANSWER IS... make a brand new referral and submit paperwork again. They don't know what else to tell the surgeon's office. Sherika, the lady handling my stuff told me she told them she was filing a complaint against them with the Tx Board of Insurance. She told them they were horrible to do this to the patient and that they were too cowardly to tell me themselves. She advised me to complain. And almost cried telling me how sorry she was that this had happened. It made me feel angry at the insurance and so happy that at least one person (Sherika) had heard my pain and genuinely cared about helping me. It made all the difference in the world. I'm still upset but no longer feel like no one hears or cares.

Shocked 

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Re: It sucks to be me (esp at 2 am) FENTANYL CAUSED WORST M IN MONTHS

Post  7777Trinity on Fri 07 Mar 2014, 8:55 am

Kim
I put myself down with Xanax when nothing else works. I hate it that your insurance company is yanking you around. My surgeon's office called our insurance company Monday, they told them that they would make a decision by March 5th and then mail a letter to me and to the surgeon. They specifically stated they would not call or Fax their decision.

Today is day 10 or 11 in a row of migraine for me and I know that if this doesn't come through I will be facing hell on earth for what's left of my life. I am not sure what to do. I only have one other option that includes me staying alive and that is moving to the east coast of Florida. I only had 4-5 migraines a month while living there. Something about air pressure and being at sea level.

Si if this gets denied, I am moving by May back to my old hometown and hope my husband will follow once he finishes this appointment in Kentucky and pray he can find a job.

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Re: It sucks to be me (esp at 2 am) FENTANYL CAUSED WORST M IN MONTHS

Post  Cluelesskitty on Fri 07 Mar 2014, 6:13 pm

Oh, no!! I am so sorry, Kim. I truly believed, judging from old R responses, the Fentanyl will work for you.
Sorry you seem to have more problems instead Sad
At least looks like hopefully  Sherika is truly behind you. She seems to be  such a nice, caring person.  How good to have someone
like her in your corner!
Do please write a complain, how much longer can you take this  c*ap? you don`t deserve this!

Risa

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Re: It sucks to be me (esp at 2 am) FENTANYL CAUSED WORST M IN MONTHS

Post  30yrsofheadache on Sun 09 Mar 2014, 6:30 am

So sorry the patches didnt work for you. I have not used it in that form, only the "lollipops". I like it because I can use as much or little as I want over the course of several hours. My bad migraines are usually a prolonged event, so this method works well for me. It is not recommended to use this way, but I have been doing it for several years. We are all so different, morphine only makes me nauseated and does nothing for the headache. I hope you can get something new to help your pain.
Hugs,
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Re: It sucks to be me (esp at 2 am) FENTANYL CAUSED WORST M IN MONTHS

Post  Platypus on Sun 09 Mar 2014, 8:06 am

Cindy, be careful with the Fentanyl lollipops -- they can make your teeth fall out, (if you didn't know). It is a very common side-effect. There are quite a few alternatives for short acting Fentanyl -- nasal spray, 2 types of sublingual, oral. You may want to look into it.

I'm not having luck w/ the patches either. Thinking about weening off. Wish I could try Butrans, but it's not on my insurance formulary.  Mad 

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Re: It sucks to be me (esp at 2 am) FENTANYL CAUSED WORST M IN MONTHS

Post  tortoisegirl on Sun 09 Mar 2014, 10:32 am

Don't they have a sugar free version now too? The lollipops however can also build your opiate tolerance quicker than any other medication, as they are so strong. I'm surprised your doctor will even prescribe them (they are only FDA approved for cancer pain).

Platy-Are you tolerating the medication? If so, its worth discussing your continued pain levels with your doctor at your follow up, to see if they would consider a dose increase. If you are still on the 12.5 (or even 25) mcg/hr dose, there is a lot of room for dose increase. They just start low and increase it slowly.

Also, if you are interested in Buprenorphine (in Butrans patch), Suboxone or Subutex would basically be the same thing. The main difference is that the pills or strips are only FDA approved for opiate dependence, not chronic pain.

So although the doctor would have to write the code for opiate dependence on the prescription for it to get covered, that doesn't admit any addiction, and it is only for the prescription (not your medical records). The pills/strips would probably need to be taken 3 or 4 times a day vs. a one week patch though.

However, it can be difficult to find a doctor that is willing to script it and has experience. You really need an experienced doctor as its a tricky medication. If opiate dependence, you need to start it when in moderate withdrawal (if you start too early you risk precipitated withdrawal). If not opiate dependent, its probably easier.

The patches are actually a really low dose compared to the pills/strips, so its likely they wouldn't be helpful anyways. Its something I'm considering switching to (from methadone). However, the doctor I saw wants to do the switch in an inpatient detox facility.

I'm definitely not on board with that. I'd consider it if I can do the switch at home. I still have a lot of concerns, but can come up with few reasons not to at least try it.

I hope you get relief soon! Its great your doctor is comfortable prescribing long acting opiate pain meds, as that gives you some options. Definitely give the medications time to build in your system, and report back to your doctor if you aren't getting any significant pain relief.

Hopefully you have a doctor who is willing to increase the dose aggressively if needed. When I started daily pain medications we ended up getting to a very high initial dose, but I stayed there for quite awhile. Many doctors would have given up before then. Best wishes.

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Re: It sucks to be me (esp at 2 am) FENTANYL CAUSED WORST M IN MONTHS

Post  30yrsofheadache on Sun 09 Mar 2014, 2:00 pm

I think the problem with teeth would be more likely if you used it on a regular basis, which I dont. I only use about 3 or 4/month and they are the lowest strength. I do worry about dependance, so I am very strict with myself about using them.I had surgery after using them for a year, and required very little pain meds for a very painful surgery. And no, I did not use the Fentnyl for that pain.

I have addiction in my family and know the problems it can cause. I have a 15 year history with this Dr.. She is very supportive about keeping me out of the ER. My main worry is that the govt. will stop allowing me to have them. I feel so much more confident to travel and go on adventures, knowing I have a really good abortive if it gets too bad. Even so, I dont do much due to frequent migraine pain. Evil or Very Mad 
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Re: It sucks to be me (esp at 2 am) FENTANYL CAUSED WORST M IN MONTHS

Post  sconesail on Mon 10 Mar 2014, 2:03 pm

Hi,

I'm so sorry that the fentanyl didn't work for you. I was on it briefly, but it made me really mean and did not work well for pain. At one point, my doctor prescribed the lollipops, but they are really short acting and did not work well. I actually wound up in the ER with a terrible migraine. I was in a good deal of pain and asked about fentanyl- he said he could give it, but that it was so short-lived that he felt I would be better with something else and gave Morphine. I am really grateful to this doctor because he was honest and because it let me know that the fentanyl was not for me. I know it works well for many, but does not work well for me.

I am sure some of the problems have to be from the change in medications- that can really throw me for a loop and I suspect it can do that for you too. I am so sorry you are in so much pain and are in the midst of one of those nothing works days. Do you take anything for sleep? On occasion, I will take a little bit of that and simple try and rest during the day. It is frustrating, but hang in there.

Hope you feel better soon.

Pain free days
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Re: It sucks to be me (esp at 2 am) FENTANYL CAUSED WORST M IN MONTHS

Post  Platypus on Tue 11 Mar 2014, 4:35 pm

I'm not tolerating the Fentanyl patch. Even on the 12mcg I'm exhausted all the time. I'm pretty sure it's the Fentanyl -- I'm always battling exhaustion from migraines and other meds I take, but I can't wake up since I started on the patch. Also loss of appetite, constipation. It just sucks.
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Re: It sucks to be me (esp at 2 am) FENTANYL CAUSED WORST M IN MONTHS

Post  tortoisegirl on Tue 11 Mar 2014, 7:56 pm

Sorry you are still struggling. The fatigue may still subside some over time. Its often suggested to give it 2-4 weeks to evaluate for effectiveness and side effects if you can.

Most of the opiates can tend to be sedating, besides Oxycodone, but it can vary from person to person. I've really struggled with that with the methadone, and have even ended up on Ritalin (I have some other conditions compounding it though).

I hope your doctor has something else to try you on. I actually haven't heard of any folks with daily headache conditions getting relief from Fentanyl. A good number of people even get headache as a starting side effect. Best wishes.

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