Going off of opioids

Use this section to discuss your experiences with prescription drugs, iron injections, and other medical interventions that involve the introduction of a drug or medicine into the body. Discuss side effects, successes, failures, published research, information about drug trials, and information about new medications being developed.

Important: Posts and information in this section are based on personal experiences and recommendations; they should not be considered a substitute for the advice of a healthcare provider.
tea4one
Posts: 47
Joined: Thu Feb 24, 2011 6:43 pm

Going off of opioids

Postby tea4one » Wed Sep 09, 2015 7:41 pm

I have been taking opiods for over a year and found that I cannot travel abroad without concern over access to adequate care. It gives me hope to see that at least one person here has gone off of all medications except for the occasional Lyrica or similar med and I would like to go off of meds as well. I suffer from mod-severe RLS symptoms and also some circadian problems. I have some idea of what to expect as I have tried to stop taking meds many times in the past when on DA's.

Any success stories or words of encouragement from those who have gone through this process would be greatly appreciated.

Thanks.

badnights
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Re: Going off of opioids

Postby badnights » Wed Sep 09, 2015 11:27 pm

Hmmm this isn't what you want, but I am interested in your story as it unfolds!
Beth - Wishing you a restful sleep tonight
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I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

ViewsAskew
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Re: Going off of opioids

Postby ViewsAskew » Thu Sep 10, 2015 1:51 am

I've stopped them, but my symptoms were no better and not manageable without medication, so I am of no help.

If you are looking mostly for help stopping the opioids, the key is whether you are dependent on them and what happens when you reduce them. If you "only" have RLS symptoms but no withdrawal, then you are likely not dependent and stopping them shouldn't be difficult. If you are dependent, there are multiple options - depends on what opioid you take and how much you take.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Joanie60
Posts: 194
Joined: Thu Mar 15, 2012 2:48 pm

Re: Going off of opioids

Postby Joanie60 » Thu Oct 29, 2015 1:34 am

It was a pain, but my doctor and pharmacy were willing to dispense 3 months worth of percocet for an overseas trip. My insurance company was the biggest hurdle!! I had to pre-pay our insurance premium for 3 months before they would cover the script. I certainly would not rely on getting opiates overseas but have you thought about carrying an adequate supply with you?

I dream of being off meds but just this morning, I ignored the first warning signals to take my morning methadone pill and within an hour I was a red hot mess...could not stop jumping and moving and shaking and walking and massaging. I cannot imagine enjoying a trip overseas without meds..the thought of the plane trip alone is enough to freak me out ;-)

Good luck..I would love to celebrate your success with you!!

joanie

dayandnight
Posts: 32
Joined: Sun Feb 26, 2012 4:24 pm

Re: Going off of opioids

Postby dayandnight » Thu Oct 29, 2015 3:11 pm

I was on 60 to 80 mg of Oxycontin per day for RLS for several years and then I had to withdraw per the doctor. It was pure hell, the worse thing I have ever had to do. Just grit your teeth and put up with it. It didn't get manageable for me until around week 3. Your circadian rhythm will be really screwed up. My sleep still isn't even close to being normal and it's been about 2 months since I stopped. I have a really supportive wife so that helped a lot. Also, you may want to flush any opioids down the toilet so they aren't accessible. There is nothing to tell you that's warm and fuzzy about this. It's going to be very hard, don't let anyone tell you otherwise. Good luck,

jul2873
Posts: 376
Joined: Thu Nov 15, 2012 7:32 pm

Re: Going off of opioids

Postby jul2873 » Fri Oct 30, 2015 1:27 am

I am not trying to talk you into anything, and I understand that many people are not comfortable with what I do. But I take a mild opioid called kratom, that I order over the internet. It's a powdered leaf, and I take about 1/2 tsp. at a time dissolved in orange juice. You can search these boards for much more info. on it.

I mention it because I travel quite a bit with it. Kratom is not a prescription drug (it's a leaf) and is legal almost almost everywhere. It is not legal in Ireland or Germany or Indonesia, and there may be one or two other countries--oh Australia. But it looks like tea, does not show up on drug screens, and drug dogs don't alert it. They've walked right passed me in airports many times. And, actually, I spent a week in Ireland this summer without any problem. In fact, at Customs an agent picked up the pill bottle I had some in, looked at it, and then put it down again.

I honestly don't think I could get through the long flights without it. And I want to enjoy my trips. We're leaving in to spend two weeks in Italy and Spain in a few months. Can't wait!

Joanie60
Posts: 194
Joined: Thu Mar 15, 2012 2:48 pm

Re: Going off of opioids

Postby Joanie60 » Fri Oct 30, 2015 1:36 am

What is the "kick-in" time for Kratom? Once I experience full blown symptoms, it is way too late for methadone. I try to keep a very level dose in my body (I have 24/7 symptoms) but if it sneaks up on me, as it just did during a 2 1/2 college course, I am pretty much screwed. I would love to have a "quick fix" in my arsenal for long flights or sudden peaking of symptoms that are not controlled by my usual dose of methadone.

I'm not complaining, the stuff is GREAT, but it is definitely not a "quick fix".

Joanie

jul2873
Posts: 376
Joined: Thu Nov 15, 2012 7:32 pm

Re: Going off of opioids

Postby jul2873 » Fri Oct 30, 2015 9:12 pm

Hi Joanie,

I find that if it is dissolved in orange juice, it kicks in more quickly than if I've put it into a capsule. When it's dissolved, for me it usually takes around 20 minutes. So it is certainly not a "quick fix." However, I've been taking it for over 2.5 years, so I may have built up some tolerance. It affects the same mu receptors as regular opioids, so you may have a tolerance built up as well. When I'm flying I take double my usually dose (so a tsp. which is about two grams) and I take it every two hours, or even every hour and a half if I need to. I usually take a total of 6-8 grams over a 24 hour period. I've found that when I take significantly more, the only way it affects me (other than controlling the symptoms of RLS) is I feel a mild euphoria and sometimes get a headache if I don't drink enough water.

Anyway, good luck to you.

Mary

Joanie60
Posts: 194
Joined: Thu Mar 15, 2012 2:48 pm

Re: Going off of opioids

Postby Joanie60 » Fri Oct 30, 2015 9:17 pm

I consider 20 minutes a quick fix!! Do you use any meds besides Kratom?

I have noticed a big increase of discussion of Kratom over the last year on this board. Knowing my luck, I'll start using it in a pinch and it will get outlawed haha.

Can I PM you and get details on which type/strain and where you obtain it? Thanks!

Joanie

jul2873
Posts: 376
Joined: Thu Nov 15, 2012 7:32 pm

Re: Going off of opioids

Postby jul2873 » Sat Oct 31, 2015 10:17 pm

Hi Joanie,

I don't use anything else. I can just give you the details here of what I use:

I get mine from Velvet Soul http://www.velvetsoulnaturals.com Because the FDA says kratom cannot be sold as a nutritional supplement, you have to put the kind of kratom you want into a search box on their site, and then it will come up. It is legal (except in a couple of states--Illinois, and I'm not sure of any others) but because it is not allowed to be sold as a nutritional supplement (since there have not been tests on it) most vendors are very careful. I am not happy that there are no tests saying it is safe, but I feel like I have no terrific choices with this lousy disease, and this, to me, is the least bad. It works for me without any side effects (except a mild constipation I manage with extra magnesium).

I put "Red Vein" into the search box, and get the Red vein Borneo. Supposedly that is the most sedating and has the most pain-relieving properties of the different kinds of kratom. Ma Daeng is the strongest kratom, but it makes me constipated, so I don't use it.

I would start with a half to a whole tsp. of the powder dissolved into some orange juice. Some people get nausous from kratom, but I think this is because they take the powder dry in capsules, or un-dissloved in water. The acid in orange juice dissolves it (takes about 20 minutes) and taken this way I never have any nausea. I use those little plastic jello cups and make up six or seven doses at a time and keep them in the refrigerator. Then I just shakes the cup up before I drink it.

I hope it works for you. Post and let us know.

Joanie60
Posts: 194
Joined: Thu Mar 15, 2012 2:48 pm

Re: Going off of opioids

Postby Joanie60 » Sat Oct 31, 2015 10:34 pm

Thanks Mary! I have ordered it :-). I really appreciate someone doing all the research for me haha. I think that is a big part of why I haven't given Kratom a shot yet...seems overwhelming (what type, where to buy it, how to dose it, etc). I would love to have a "quick shot" for symptoms that appear out of nowhere.

I'll let you know!

Joanie

jul2873
Posts: 376
Joined: Thu Nov 15, 2012 7:32 pm

Re: Going off of opioids

Postby jul2873 » Sun Nov 01, 2015 4:30 am

Joanie, just be careful if you take it with something else. That makes me nervous, because it IS an opioid, even though a mild one. I wish you would just take it by itself. Mixing drugs can be pretty chancy. Take care.

Joanie60
Posts: 194
Joined: Thu Mar 15, 2012 2:48 pm

Re: Going off of opioids

Postby Joanie60 » Sun Nov 01, 2015 12:30 pm

Oh dear, good point! And methadone has such a long half life....who knows when it would be gone from my system.

Yup, you are right. I better stick with my hot water bottle and warm baths for the break-thru symptoms. I hope my current regimen works forever but if it doesn't, I will give kratom a shot (and in the mean time, I only spent $20 so no great loss).

Thanks for thinking clearly for me Mary!!

tea4one
Posts: 47
Joined: Thu Feb 24, 2011 6:43 pm

Re: Going off of opioids

Postby tea4one » Sat Nov 07, 2015 12:48 am

Thank you for all of the supportive responses. After finishing a half-marathon I decided it was time to attempt a drug holiday. I'd been taking fentanyl for more than 1 year prior, but RLS symptoms increased requiring a change. I had experienced increased symptoms for at least 6mos prior to this, but they had become unbearable. I'm ashamed to say that I could last not more than 36hrs without succumbing to more medication.
I switched over to methadone, a med I had occasionally taken for breakthrough pain, and initially tried by itself. When I first took methadone (5mg) I experienced what I thought was shallow breathing late at night along with heart palpitations. Since starting back on the methadone I experienced the heart flutters, but no shallow breathing. I'm now taking 10mg of methadone and feel the same sluggish mind and mild apathy as when I first took it.
The reason i felt I may successfully kick the opioids is because I went nearly two months without meds prior to seeing Dr Earley at Johns Hopkins, now close to three years ago. I remember having fewer and fewer symptoms at night, but my sleep/wake hours were off kilter, sleeping until the afternoon/evening for weeks at a time. RLS was still present, but not every night, and this surprised me. So, naturally, three years later, I thought I might duplicate the events and attempt to prolong my misery for a brighter future without opiates.
Someone mentioned their spouse as being a great support, and I feel as though this is where I was lacking in my endeavor. Being single and living alone makes tackling these challenges seem even more daunting.
Now I am symptom free, but working on getting my sleep cycle as close to "normal" as possible. I feel as though I've traded my pain for a mind that is slower and more apathetic than before, but I believe I can change this perception. Planning and focusing on tasks is more challenging, but I'm determined to overcome these side-effects.

Thank you for the tip on kratom. I sent an email to the RLS Center in Austria to see if they may be willing to assist my going to school abroad, but have not received a reply. Now that I have had to increase my dose of methadone I believe my chances of being adequately treated abroad (Europe) may have lessened, I don't know. I'll have to follow-up.

Thanks again for all of the supportive messages. I need all of the optimism I can get these days.

Respectfully,

Jayson

ViewsAskew
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Re: Going off of opioids

Postby ViewsAskew » Sat Nov 07, 2015 4:01 am

I hope they follow up with you.
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.


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