Discontinuing Opioid Pain Medication - My experience

[ezer]

I thought I would share my experience discontinuing opioid medication.

I was in some form or another on opioids for 8 years. Starting with Tramadol (100mg/day) and eventually switching to Oxycodone (30mg/day) for the last 3 years. I also was on Opana, Methadone, and MS-Contin for short trial periods under the supervision of my pain management doctor. I finally settled on Butrans (10 microgram/hour)for a few months.

I was diagnosed with a blood disorder that requires close monitoring so I really wanted to not have to deal with opioid pain medication anymore. I wanted to be free from seeing a pain doctor every few weeks just to get refills. I decided to taper off my opioid pain medication (Butrans).

I therefore slowly reduced my dosage and discontinued within 8 weeks. As I was reducing my dosage, I started to have terrible headaches. Tylenol or Ibuprofen would not work at all. The only help was to drink as much water as possible. Buprenorphine has a very long half life and allows for a smooth taper so that helped making that phase relatively painless. Tapering off a short acting opioid would have been much more difficult with the ups and downs.

My sleep started getting badly affected so I got a script for Ambien.

I naively thought that I would feel terrible for 5-10 days after discontinuing opioids and I would be done with it. It was not to be and I wasn't prepared mentally for a long drawn-out process. You go through 2 distinct phases AWS (acute withdrawal syndrome) and PAWS (post-acute withdrawal syndrome). You just don't know when it is ever going to stop.

Tapering off was alright notwithstanding the headaches and some restlessness. What followed was less pleasant.


Following is my journal after I completely discontinued opioid medication:

Day 1-3: Nothing to report. Still bad headaches. I thought the worst was over. Wrong.

Day 4: Terrible. Horrible headaches. I couldn't keep my balance. Driving was completely out of the question.

Day 5-16: Slightly better but terrible headaches. Restless. Cognitive functions impaired. Impossible to sleep without taking 10mg of Ambien. Emotions were through the roof. Bouts of depression (that I have never experienced before). Plenty of morbid thoughts. At day 10, my vision and my hearing improved. I started enjoying music again.

Day 17: I felt great for the first time. I don't know why. It only lasted a day.

Day 21: I Ran out of Ambien. I tried anything that I had on hand in the medicine cabinet (leftover prescriptions). I used Flexeril, Gabapentin, etc... to get some sleep. Headaches were on and off.

Day 22-38: Headaches on and off. My balance was still affected. I started to exercise daily which helped.

Day 39: I felt really good again.

Day 40-55: Same as day 18-38. Impossible to sleep. Restless. Slight loss of balance. Strange sensations. Headaches started to become less bothersome and frequent.

Day 56-90: Felt fine. Still restless and sleep was impossible without Sominex or other OTC sleep medication.

Day 90-104: Better and better. No more headaches but suddenly I had NO energy. That lack of stamina lasted 15 long days.

Day 105-189: I got progressively better. I still couldn't sleep through the night.

Day 190: Felt normal and my sleep returned without having to use sleeping aid. Cognitive functions were back to normal.

Day 220-and after: Feeling great. Sleep is not what it was 9 years ago (5-6 hours/night) but I am also older obviously so it could just be a natural consequence of aging.

From what I have read, 90% of the people that attempt to discontinue relapse and go back to using opioid medication. In fact already 58% of the people relapse during the first week of abstinence. Those are really disturbing statistics.

The issue is the lack of natural endorphin. It takes about 8 weeks to return to 80%. Then another 27 weeks to be back to complete homeostasis. So the brain takes roughly 9 months to recover 100% from opiates/opioids.

If you suffer from depression you may want to proceed very cautiously. Your emotions will be raw and through the roof. I realize now that opioids are also a form of anti-depressant medication and help us cope emotionally with pain. Daily exercise and staying properly hydrated are a must.

I do not regret taking opioid medication at all. What would I have done without that type of medication after surgery? The good news is that you eventually recover 100% from opioids.

[stephanies]

Thank you for the informative post. It is helpful to have a candid look at what can be expected from the withdrawal process.

[Violet M]

Congratulations for getting of the medications successfully, Ezer. Sounds dreadful what you went through but you were obviously very determined. Is the blood disorder back to normal now or will that be an ongoing thing not related to the medications?

Violet

[ezer]

Thanks Stephanie. The PAWS (post acute withdrawal symptoms) are caused by the body not getting opiates anymore so the body goes into a state of panic. The body starts releasing norepinephrine. The norepinephrine causes anxiety, sweats, restless legs, heart racing, irritability, muscle pain, and constant fatigue. No matter what you do, it is impossible to detox without feeling PAWS.
The strange few "good days" that are experienced in the mix are due to different recovery rates for the various receptors (mu and kappa).

[ezer]

Thanks Violet. It is hard. Throughout that period, you know perfectly that by taking a Percocet tablet, you can stop all that suffering in 20 minutes and feel perfectly normal. It is just too tempting for many people thus the staggering relapse rate.
I have 2 DNA mutations that make me extremely susceptible to clotting (I had clots in the past but Kaiser never bothered checking why). I am therefore on lifetime Coumadin.

[ezer]

A few more points about detox:

- For the first 8 weeks, I was sneezing and coughing non-stop. It is a normal reaction. Opiates are cough suppressants (ex:Robitussin AC) so you experience a strong rebound.

- You have to realize that you are not stronger than the medication but you are much weaker. If you feel you are strong, you may be very tempted to take some leftover Percocet or Norco just to feel better for a few hours because you think you can control yourself. If you realize that you are weak and that the medication will pull you almost for certain right back to dependency, you will be less tempted to do it. That is how we get to 90% relapse.

- Now there are 2 schools regarding comfort medication and supplements. Some doctors prescribe Clonidine, Valium etc... to ease the discomfort.
Then some patients take mega doses of Vitamin C etc... It is really not clear that does any good.

The other school is to not prescribe anything. The belief is that part of your dependency to opiates is the fact that you reach for a pill whenever you don't feel well. By having Valium or other medication at your disposal, you perpetuate the urge to reach for some medication to feel better. Part of detox is also to break habits that may make you relapse down the road.
It is not rare for people to become dependent on benzodiazepine at this point.

[stephanies]

As you may know, I was virtually pain free for several years after suffering with PN for years. I began to have PN symptoms again in September of last year when I was attempting to come off morphine sulfate er by increasing the amount of time between pills from 12 hours to 14 hours then to 16 hours, etc. and experienced awful withdrawal. At that time, I began to have bladder symptoms but I didn't make the connection to the PN. I was very busy with my family, my part-time job, and other life events so I ultimately decided it was not a good time to pursue coming off this drug and I went back on it. I wonder now if these bladder symptoms, which progressed to full blown PN pain again last December, were a result of some type of disturbance or excitement of the neurons (pardon my lack of familiarity with medical terms) during the time I was having withdrawal symptoms and this resulted in the nerve sending pain signals again. Almost like when some women get symptoms of PGAD while they are withdrawing from an SSRI. This is just a theory I have in an attempt to explain why my pain returned when it did.

I am meeting with my pain doctor next week and I am considering asking for additional pain control. I need to try to get some independence and control back in my life and this requires me being able to sit to drive some as well as it not be in too much pain to help with homework and pack school lunches, etc. Ezer mentioned some medicines that I will see if she is willing to prescribe.

Sincerely,
Stephanies

[ezer]

During the last 2 weeks of tapering off and the first 3 weeks after discontinuation, I suffered from generalized increased pain. Even my digestion felt painful. Some sort of rebound I guess. It fortunately disappeared after that.

I assume you are thinking about Butrans which I found amazing. You may want to bring her attention to the proper conversion table. I have seen cases of severe under-dosing as well as over-dosing. It seems that some doctors have real trouble with the math in regards to converting to a patch:
https://www.butrans.com/hcpportal/f?p=B ... ION_TOOL:0:::::

Or you can even print the following that shows the morphine to Butrans equivalence:
http://www.wales.nhs.uk/sites3/Document ... ov2010.pdf

[Laramarie]

Ezer
I have a question. I had TG surgery with Dr Hibner in December 2013. My pain doctor is giving me lidocaine infusions starting in October, so 3 infusions in one week. He says that he wants to be quite aggressive with me to get my pain gone. Ultimately after the last lidocaine infusion he is planning on getting me to wean off my opioids. How realistic do you think this is? I have been on opioids for 3 yrs since I developed PNE post gynecology surgery (2011). This physician thinks I can stop taking the opioids after the 3rd dose of IV lidocaine..... Have you heard of any other people being able to get off meds this way?
FYI: I was able to safely stop Fentanyl on my own. I am currently on dilaudid 9mg 2x a day and tramadol 200 mg once a day.
What do you think?
Physically.... I am doing really well. I just turned a corner in my healing. I have totally pain free days and I am actually ready to try to get off this crap!

Thanks for any help you can offer?

Lara

[ezer]

Hi Lara,
Congratulations on the great outcome of your surgery.

May I ask you if you were on any other opioid when you discontinued Fentanyl? For how long were you on Fentanyl?
There is a small segment of the population that does not experience withdrawal. It is genetic. Maybe you are lucky.

I was on 30mg of Oxycodone for 3 years. Your dosage equivalent according to charts is:
200 mg of Tramadol is equivalent to about 20mg of Oxyxodone
18mg Dilaudid (Hydromorphone) is equivalent to 45mg of Oxycodone

So you must compare my 30mg of Oxycodone to roughly 65mg of Oxycodone equivalent in your case. I think your experience will be similar to mine. You do have the added complexity of being on 2 different opioids. I believe that it would be good to see an addiction specialist that could switch you from 2 different opioids (Tramadol is an atypical opioid but the effect is the same) to Buprenorphine and taper from there.

Dilaudid withdrawal is supposed to be pretty brutal due to its extremely short half life.