Why is my RLS worse after detox from DA?

[Lisamason5O]

I am so grateful for the RLS Foundation. The knowledge and support for those of us with RLS is immense. Thank you for all you do for those of us who suffer from this disease.

I slowly weaned off ropinirole with the help of tramadol. I took my last dose of the evil ropinirole 11 days ago. The first couple of days of detox were horrible physically mentally and emotionally and I wondered if the tramadol was helping. By day 4 I was able to get 3 naps of about 30 minutes. No RLS symptoms at all in the morning. I am still on Tramadol and the doctor increased my dose on day 6. Now it is day 11 and I am back to no sleep. RLS symptoms almost all day. Any body ever experience this? Is it typical?

[ViewsAskew]

So many options, sadly.

1. You can augment on tramadol.
2. Your symptoms can worsen naturally - this may be your new state.
3. Some of us have felt that when we went off of DAs and were quite augmented, that our symptoms were definitely worsened. Doctors say this cannot happen, however.
4. It could be your receptors still have not reset.
5. Something else could be impacting it - low iron, recent surgery, stress, etc.

Have you had your ferritin checked?

[Lisamason5O]

Oh no! Those options are all so disheartening. My ferritin is always over 150. It sounds like my next step will be to have the Tramadol switched to another opioid?
This disease is awful. I am tired of being tired.
Thank you for your ideas.

[ViewsAskew]

Oh no! Those options are all so disheartening. My ferritin is always over 150. It sounds like my next step will be to have the Tramadol switched to another opioid?
This disease is awful. I am tired of being tired.
Thank you for your ideas.

I hear you! And I feel for you - it's been a long time since I augmented, but I just tried to switch from methadone (unsuccessfully) and went through days of not sleeping - it REALLY sucks. I hope you find a better option and quickly.

Ferritin is a poor indicator of the iron we have in our brain, unfortunately. We can get it very high and still not have it where we need it. As I understand it, the only way to really tell what is in our brain is a spinal tap - and none of us would want to go through that (nor would any doctor put us through that).

It really hasn't been that long since you stopped the ropinerole, but it should be slowly getting better instead of worse and it sounds like it isn't. I'd definitely push the doctor for another alternative. Methadone is what many US doctors used for years, but lately more are using buprenorphine because it's easier to get and tends to work well for many.

[Rustsmith]

Johns Hopkins and probably one or two other RLS research labs have been evaluating a new high strength ultrasonic method of measuring iron levels in the substantia nigra portion of the brain. Unfortunately, these will probably all be research techniques for a few more years.

As for ferritin, many people improve when their ferritin level is increased over 100. Unfortunately, some of us do not benefit from increased ferritin. The current theory is that those of us who do not benefit have a problem with iron transport across the blood brain barrier, possibly due to a genetic "defect" in the protein responsible for transporting metal ions across the barrier. There is at least one research program studying how this transport occurs.

I hope that they have success soon because I am part of the group with high ferritin that never helped my RLS. At one point, my ferritin was up to 650. I was concerned by that until my doctor told me that as long as I didn't show signs of jaundice, she wasn't concerned. When I told my GP about that, she wasn't as convinced and insisted on running the blood test to see if I had the hemachromatosis defect - I did not.

[Lissa496]

Hi Lisa,
Now that you are off the DA it may take a while to be at your new "normal" of RLS.

I was on Tramadol for a few years after the DA and it was wonderful until I got to the top dosage at three times a day and it no longer helped. I had to wean off tramadol and tried pregabalin, gabapentin, and Horizant, the name brand, as the doctor thought the name brand might work better. I found none of those worked and ended up on oxycodone for daytime and oxycontin for the night and it has been a lifesaver for me.

If the tramadol did help then I would suggest trying another opioid. Many have had good luck with methadone and suboxone. I couldn't take methadone as it caused great anxiety and have not had too many breakthroughs on the oxy to want to switch to suboxen.

Good luck ~ Lissa

[Lisamason5O]

Thank you so much for your support and thoughts. My doctor did switch me to 20 mg hydrocodone. I took it Monday night and it worked for the most part. I took it last night and it didn’t work, RLS symptoms all night long. Not sure what to think or do at this point. Any ideas?

[ViewsAskew]

Thank you so much for your support and thoughts. My doctor did switch me to 20 mg hydrocodone. I took it Monday night and it worked for the most part. I took it last night and it didn’t work, RLS symptoms all night long. Not sure what to think or do at this point. Any ideas?

Ugh. That is pretty miserable. So sorry that is happening. FWIW, hydocodone isn't a typical opioid used. It can be used, but it's less frequently than some others. If you did augment on tramadol, maybe you need a higher dose or a split dose? Other options: Timing? Wrong opioid? Maybe something in addition to RLS/WED going on?

[Lisamason5O]

I have started splitting the dose and changing the timing. This is Day 15 of my drug-free period. My husband thinks that I have been on the ropinirole 10 years and the 12 day ropinirole free period is not long enough to revert my brain chemistry back to baseline. Any research done on this? I do have the leaflet from the RLS Foundation about medication withdraw after augmentation. And it indicates 12 days. Also have thought something else might be going on. Then how long do I try the oxycodone before I talk to my doctor about trying another drug?

Thank you from the bottom of my heart for your support and ideas!

[Rustsmith]

The understanding that I have is that 12 days is the time period for when you start feeling somewhat back to normal but that it takes longer to completely finish the washout. I have heard some doctors say that it takes 30 days before they are willing to accept that you have returned to whatever your new "baseline" RLS symptoms are.

Remember that RLS tends to get more severe with age and you were on ropinerole for some time before you finally augmented. Even if augmentation doesn't cause changes to your brain (current research is starting to indicate that it does cause changes to the brain's structure), simply the increase in severity due to being older means that your RLS will be a little bit worse that what it was before you started taking a DA. Also, we all tend to have selective memories and your RLS just before you started had to have been bad enough to justify starting DA treatment.

[Lisamason5O]

Thank you for that information on the 30 days before my brain has fully reset after complete cessation of the DA. I did not know that. Changes my expectations on how I am feeling and RLS symptoms. I totally agree-I truly can’t remember what my RLS symptoms were like 10 years ago. Other than I know I did not have them to 8 or so in the evening. And never in the morning or afternoon like I had when I was on the DA. I am on day 17 of DA cessation so have another 2 weeks or so before I hit the 30 day mark. It has been about 2 months now of minimal to no sleep getting off the DA. I keep hoping that my sleep will start to improve.