Withdrawal help please...

[Kimberly]

Hi all. Forgive me if this sounds really naive and you end up shaking your heads at me in cyberspace...

I've in the process of coming off my meds and need a little help/reassurance.

After my 2-level ALIF on June 29, I was sent home with:
Fentanyl patch (25mcg/hr)
Dilaudid (2mg) for breakthrough pain
Scopolamine patch for nausea

I had stepped down to the lowest Fentanyl patch dose (12.5 mcg/hr) and was only taking one 2mg dilaudid pill a day (at night). I have struggled with extreme sensitivity to pain medication and constant nausea and needed to move off the meds. I asked my Dr. if I would have withdrawal and he said 'no' since we had weaned me down to the lowest fentanyl. He said that as I went off the meds my pain would increase and I could just take more of the dilaudid for the increased pain.

So, I stopped.

Today is day 10 since I removed the patch and stopped the dilaudid, (day 8 since the lovely assortment of withdrawal symptoms set in.) How long will this last? I couldn't sleep and my dr's office was so quick to call in a prescription for ambien. I took it for two nights but just researched that and it too looks like it's addictive. The last two nights the tremors got so bad I took a single dilaudid because I was kind of desperate. I have not taken anything else since.

Please.....any advice?

[Kimberly]

By the way, my back/incision pain is fine. Completely tolerable.

[Catherine]

Hi Kimberly,

I don't have any helpful info, just a question. And also my wishes that it all goes away quickly for you! Were you on any opioids before your surgery? Or only after? I'm asking because I'm wondering if the dependence starts that quickly, or if you had previous dependence going on. I hope that makes sense?

Catherine

[Kimberly]

Catherine,

I wasn't on a lot of opiates before surgery. Well, I didn't think so anyway.

I would take one percocet (5/325) at the end of the day when I had a really bad day. I would do this probably 3 times a week.

[Catherine]

Oh you must be super susceptible to them. I hope it goes away quickly for you without too many more symptoms! Of course, I've never been on the Fentanyl patch so I don't know how that might affect you. I'm sure you're correct to stop the ambien though. As sensitive as you are you surely don't need another problem! My sister takes them and she cannot sleep without them now. Hang in there Kimberly! It has to get better soon!

Catherine

[Justin]

Hi Kimberly,

You are experiencing classic opioid withdrawal. After you start taking an opioid, your body inherently becomes dependent on opioids. Dependence does not = addiction. Dependence is a normal physiological response to the method of action of the drug. Everyone on an opioid becomes dependent. Dependence is NOT addiction.

Let me stress that you are coming off a LOT of opioids. The strength of Fentanyl is ~100x that of regular morphine, so when you start to taper off of Fentanyl, you really feel the side effects (I've stepped off Fentanyl before, so I know exactly what you are going through / experiencing).

Also, Dilaudid is a VERY strong medication for pain. I'm actually quite amazed that you are taking that much Dilaudid for breakthrough pain.

Anyway, the withdrawals you are experiencing are completely normal when you start coming off of opioids. Your body has specific receptors in your gut that binds the opioids, which causes constipation when you are on them. Thus, when you get off of opioids you might experience nausea, diarrhea and vomiting. You will also have body aches, fever, chills, increased sweating, headache, goosebumps, runny nose, sneezing--it feels similar to a very bad flu.

Symptoms can last anywhere from a week to ~6 weeks depending on how long you were on the opioids and the amount you were taking daily. Typically, when you plan to stop an opioid, the physician following your pain meds will write out a taper schedule to slower step off of the opioids to help minimize withdrawal. In your situation it is tricky because you are on patches that jump down from 25 to 12.5 mcg to no patches. Also, your body is used to a certain amount of the Dilaudid that you have been taking for breakthrough pain, so you are experiencing withdrawal from your around the clock meds as well as your breakthrough meds.

Opioid withdrawal is an extremely trying time--I've done both (after previous spine surgeries): the cold turkey method (stopping completely one day at a pretty high dose) and also the gradual taper method. Both are painful...you will feel achy and your back might hurt more while you are coming off of your meds.

Good luck! I wish you the very best. Feel free to email / PM with any questions you have or if you just need some support.

Hang in there!

[Cindylou]

Such good, informative advice from Justin regarding opiates and opiate reduction plan. Thank-you for such important advice Justin, as always. CL

[Kimberly]

Thanks so much for all the kind words and information. Justin, thank you for your kind and informative post. Thank you for taking the time to help me out.

This is really new territory for me. I have a really sensitive stomach and we tried so many different pain management options in the hospital after surgery but the patch was the only thing that did not make me vomit. I had never even heard of fentanyl before. it was like, "try this. ok, now this. how about this. patch? ok. go home now." oh well. It did help with the pain but I was completely in the dark about how much of a "heavy hitter" this drug is and how hard it would be to take it off.

Today is day 9. Still very sick, but a little better than yesterday.

Thanks again all,
Kimberly

[Justin]

Thanks so much for all the kind words and information. Justin, thank you for your kind and informative post. Thank you for taking the time to help me out.

This is really new territory for me. I have a really sensitive stomach and we tried so many different pain management options in the hospital after surgery but the patch was the only thing that did not make me vomit. I had never even heard of fentanyl before. it was like, "try this. ok, now this. how about this. patch? ok. go home now." oh well. It did help with the pain but I was completely in the dark about how much of a "heavy hitter" this drug is and how hard it would be to take it off.

Today is day 9. Still very sick, but a little better than yesterday.

Thanks again all,
Kimberly

Sure thing, Kimberly. It's hard to know what some of the pain medications "do to you," if you have never had them prescribed before. Fentanyl is a great option of many patients, me included. At the time, my pain required around the clock treatment and Fentanyl was the perfect way for me to have a steady amount of opioid delivered to my system without having to remembers a lot of pills multiple times a day.

I do hope you feel better soon. Also, if you are having a hard time stepping off of your medications, you might want to meet with your doctor about possibly transitioning from Fentanyl to an oral agent (that is not as strong as Dilaudid) for a while. This would help you transition from a lot of opioid to a more tolerable amount as you step down. Of course, make sure to discuss all medication changes with your medical team.

[Pbchoclovr]

Kimberly,

I'm so sorry to hear you're having such a hard time with decreasing your meds. I follow your posts regularly, because we had surgery on the same day. I find your posts helpful because they help keep me grounded in reality as to my progress post surgery when I think I should be farther than I am. Your posts and those of several others help me realize I'm right where I'm supposed to be and all is normal. A lot of the things you've experienced are similar to what I've been experiencing. I've only recently started trying to decrease my meds and only the oxycodone. I'm not on anything near as strong as you. Right now, my meds are what help me be functional since I returned to work half days this past week and started PT. I've literally dragged myself into the house after a half day. I fully expect initially with PT that my pain levels will increase because my PT does very intense therapy. My goal is to be off all my meds by Christmas, if not sooner. I really hope this passes soon for you.

Feel better.

Linda