Withdraw from Opioids...

[QyX]

I am forced to withdraw from the Opioids. My brain simply doesn't want them anymore. I sleep up 18 hours a day, I have no motivation, no energy, no interests. I just lie in bed and watch stupid TV Shows when I am not sleeping. At first I thought it is a Depression but we were able to exclude this as a cause. My brain feels completely muddy all day. It is a bit better when I wake up and I am not so much affected by the Hydromorphone I am taking.

Until today I took 4 - 0 - 8. It was the only drug I was taking in the past 4 weeks.

These symptoms I described became more severe when I stopped consuming Caffeine at all. Until 4 weeks ago I was drinking up 3 Liter of Coke daily. You could say that I was addicted to Caffeine. I needed it to overcome my tiredness. At the age of 14 I started consuming Caffeine on a daily basis. My impression always was that I am so used to it that it doesn't matter.

Looks like I was wrong. I am able to sleep now but this is no life at all and I still have RLS with chronic pain in the legs but the Opioids are killing me. In the past weeks I tried to reduce the Hydromorphone but it didn't work out. There was just to much pain, especially in the night hours.

After it became crystal clear today that the Opioids are causing these symptoms me and my Doctor still decided to try a complete withdraw.

I am switching to a low potent Opioid (Tramadol) and try to reduce the dose as much as possible. I don't know if it will work but I don't see any other option. Neither does my Doctor.

In total I tried 42 different drugs for my problems. Nothing ever worked long term. I tried Dopamine-Agonists a couple of times but I was always augmenting. Pramipexole worked some weeks but Ropinirole only two. My Doctor offered trying older Dopamine-Agonists like Cabergolid but they all come with heavy side effects and it is likely that I will augment.

I also had various antiepileptics like Pregabaline, Carbamazepine or Valporat. I have a long history with Benzodiazepines. They destroy me even more.

I don't know what to do or take anymore. My brain is very sensitive to drugs in general.

One year ago I was without drugs for a couple of weeks. This was the time I was diagnosed with RLS. Before that I was treated for affective disorders and Depression.

I am 28 now and I never was healthy in my life. I study medicine but with under these circumstances it is impossible for me to go to school.

Right now I don't have much hope that there ever will be a solution for my problems but I wanna life so badly. At least for a couple of years a "normal" life but it is getting worse and worse.

[ViewsAskew]

They do the same thing to me when I take only them.

Like you, I also augment on all DAs. And, I've taken 15-20 drugs in various combinations - not as many as you, but still a lot. Yet, I did find a way to make this work. For about three years I took a DA for one day, an opioid the next. Back and forth, back and forth. I didn't augment, I didn't get the lethargy from the opioids.

Last fall I had to stop the DA. It was making me terribly depressed and I couldn't make myself take it anymore. I went back to full time opioids. Within a few months, I was sleeping all day, lethargic, and my brain was in a fog. I knew I couldn't go back to pramipexole alone. I started taking 1/2 the dose of pramipexole and 1/2 the opioid on one night, then all opioid, then a full dose of pramipexole. It was still too often and I was too depressed. For the last three months I take 1/2 of each for two nights, then one night of opioid. About once a week I take a full dose of the pramipexole. I don't like it, but I can do it. I'm still sleepier than I'd like, but it's not nearly as bad as it was.

Every time I think I am out of options, I find one. I hope you can do the same.

[QyX]

Atch! Sounds complicated what you do Ann!

I hope I can avoid such a complicated cycle. I am so tired of problems like this. What I need is robust solution that works every day. This would be a dream. I won't give up trying but it is so frustrating.

Do you have the lethargy from all opioids or does the effect depend on the drug?

Maybe Tramadol will work now without the caffeine. It is a weak opioid but it also stimulates the serotonin receptors.

One week Pramipexole, one week Tramadol could be an option too. It just needs to be reliable and work when I am stressed.

[ViewsAskew]

Atch! Sounds complicated what you do Ann!

I hope I can avoid such a complicated cycle. I am so tired of problems like this. What I need is robust solution that works every day. This would be a dream. I won't give up trying but it is so frustrating.

Do you have the lethargy from all opioids or does the effect depend on the drug?

Maybe Tramadol will work now without the caffeine. It is a weak opioid but it also stimulates the serotonin receptors.

One week Pramipexole, one week Tramadol could be an option too. It just needs to be reliable and work when I am stressed.

I had a wry laugh when I read your post. What I wouldn't give for a robust solution that worked every day! That was my dream 10 years ago, before I lost my job, had to stop work, and couldn't function anymore! Now? I am ecstatic to have this solution.

It's really not compliated. I set the pills out in a weekly med container so I know what to take each day. Not a problem, really.

Per the opioids, I have the strangest side effect to all but methadone, so I can't take them. They make me tense and clench my jaw, next, shoulder muscles and I end up with many myofascial trigger points that cause the worse headaches. I can take tramadol, but it's not strong enough to let me sleep at night. I maxed out at 300 mg and was still up all night. Works great during the day, though. It's another med to be careful of dependence. Withdrawal doesn't take long, but don't stop it cold turkey if you have taken it every day for more than two weeks.

You could also try 1 week pramipexole and 2 days of an opioid that works. That should be enough time between to prevent augmentation.

[QyX]

I am taking opioids for about 9 months now. Most of the time Oxycodone and in the past 2 months Hydromorphone. Now again Tramadol.

In Germany they say the max dose of Tramadol is 400 mg. I had a friend who was taking up to 800 mg. I wouldn't recommend it but he didn't have any negative side effects or other problems.

What I dont like about the Dopamine-Agonist is that they seem to "invert" my brain to some point. When I take a stimulant (Dextroamphetamine) in the morning after I had Pramipexole at night I get very sleepy and sometimes I even fall asleep. I also have some ADHD like problems and I benefit a lot from stimulants at med school, especially when there is a lot of stress and I need to keep myself organized.

Maybe I could the Dopamine-Agonists on the weekend and Tramadol throughout the week.

I don't know where this is going yet but I already feel much better since I stopped Hydromorphone and switched to Tramadol. Now it needs to improve further and last.

I am still dreaming of having a life and fun and pleasure and stuff like that ...

[rthom]

I also have respomses to the medications that are the opposite to what would be expected, and when I take hydromorphone it is not very useful, I drop off to sleep for a few min (3-7 min like) then I'm just back to square 1 with pain etc. It just leaves me a bit crappy feeling--physical exhaustion seems to creep up after I take it for a while, but mental is not much, only a few mins right after taking it and only if it's short acting and not a time release type.
Sound farmilliar?

[badnights]

QyX I'm glad to see you''re not giving up, and Ann is a great person to talk to about this since you have such similar problems. She has made her life fit the disease, and like you has remained determined to find a solution. That determination and willingness to try things gives her a life, and that's what will bring you also through the tough times. This is not a return to the bad times, it's only a low spot on the graph, which is overall going up and up.

[cornelia]

I agree totally with Ann when she says there are times when you think there are no options anymore and then you juggle your drugs and you feel better. When I lived on OxyContin alone I got the same problems after a few months: very lethargic and depression set in. Now my drugs regime looks much like Ann's. I think that after some sime with severe RLS we learn to find out own ways with meds. My neuro doesn't like it but he lets me. I'm sure you will find your own way too.
Good luck.
Corrie

[Polar Bear]

i agree that we jiggle our meds a little with regard especially timing and dosage.
When I first tentatively said to my GP that I had done this he replied that he would have expected me to do so.

[Chipmunk]

i agree that we jiggle our meds a little with regard especially timing and dosage.
When I first tentatively said to my GP that I had done this he replied that he would have expected me to do so.

My doctor calls this "sculpting" my dose, and he is very supportive of it, and will prescribe meds in, for example, 4- 25 mg tablets instead of 1- 100 mg tablet to give me more flexibility.

[Polar Bear]

My doctor is accommodating and will do the same He gives me 1mg, .5mg, and the .5 can be easily cut in half to make .25mg. (ropinerole)

[QyX]

Hello there!

Sorry for getting back to you so late but there have been some developments.

So I switched from Hydromorphone to Tramadol and then stopped taking Tramadol. I tried it several times (fast/slow) but the pain is just too serious. I can't stand the pain and only opioids are able to take the pain away. Because Tramadol was killing all my appetite and I was loosing weight daily I switched back to Oxycodone.

In the ongoing dialogue with my Doctor it became more and more obvious that I might be depressed, that in fact the main reason for my problems is a severe depression.

In the past I had tried various ADs but never had success. I had tried Imipramine, Doxepine and Bupropion but no luck. After it turned out I have RLS we blamed the RLS for all my symptoms.

But now it was obvious that RLS can't explain all my symptoms. My doctor suggested taking an SSRi (Escitalopram). We both knew that SSRi can worsen RLS but evidence is not cut clear in this matter. There is evidence suggesting that a well treated RLS is not worsened by SSRi.

So I started taking Escitalopram. (Day 1 3 mg, Day 2 4 mg, Day 3 7 mg, Day 4, 10 mg, Day 5, 10 mg etc.) and since the 5th day my situation improved dramatically. Yesterday evening I was relaxed as I never was relaxed before in my hole life!

Of course my RLS isn't gone and for now I am taking Oxycodone, 20 mg every 8 hours and I wanna try switching back to Hydromorphone as soon as I am more stable.

Depression is often associated with somatic symptoms, for example pain and many people with RLS also suffer from Depression and people with Depression have RLLS-symptoms.

Maybe symptoms we recognize as a side effect are symptpms of a different disorder. At least we should consider this.

I am really surprised how positive the influence of Escitalopram is. I never thought that's possible.

Now I am looking for the opioid with best side effect profile and stay away from the dopamin agonists.

I

[Polar Bear]

I am delighted that things have turned around so well for you. Yes, sometimes we are afraid of the SSRI medication, I refused it for several years and when I eventually took it my life felt so much better after about 3 weeks. I don't see that it had any ill effect on my WED symptoms.

[rthom]

My understanding is that it is the older SSRI's that cause most of the problems and the new ones are ok I had a horrible time with one over 20 yrs ago but now have tried some without much difference --if any. So It seems accurate in my experience (whatever that amounts too-lol) Good luck

[ViewsAskew]

The only study I know that actively compared the newer ADs - mostly SSRIs, I believe - found that it was as low as 2% and as high as 10% of people with WED had worsened symptoms. Worth trying in my opinion if you have depression.

QyX - so glad for this turn!