My ongoing RLS battle

[Birdland]

This is a follow up to my post “Life After Ropinirole”.

Shortly after I posted my body decided it had had too many opioiods and I became more sick than I had ever gotten on opioids before. It came on suddenly without warning. No chance to make any changes to prevent it. The nausea was so very intense. Nothing gave me a moment of relief for 2 weeks. I could not function at all. No amount of Zofran made any difference. Cannabis didn’t help. Nothing helped. I lost 10 pounds in those miserable 2 weeks, and I am a very small woman. The worst part was that I had to stop opioids and didn’t want to go back on Ropinirole. I have tried Gabapentin but since I augmented so badly on Ropinirole it didn’t work for me. So not only was I sick but I had nothing to calm my RLS symptoms. It was horrible. Was this going to be another failure to kick Ropinirole? When I was feeling better I contacted Dr. B. His advice to me was to alternate between taking Ropinirole for a month and Oxycodone or Methadone for a month. I told him that was out of the question because I couldn’t risk getting sick again from opioids. I just could not risk it!!! He offered no other solution. So, again I was on my own to figure it out.

For a few weeks I went without any meds for RLS until I was sure the opioids were out of my system. Then, I did a variation of Dr. B’s suggestion. I started taking 2 doses of .06 mg Ropinirole (1/4 of a .25 mg tablet) for 4 days. One dose at midnight and another at about 3AM. On the other 3 days of the week I replaced the 2 doses of Ropinirole with 2 doses of Methadone, each a quarter of a 5 mg tablet. This may seem like a laughable dose to some, but I am very sensitive to medication. As the weeks passed I realized even that low dose of methadone was starting to make me sick. I had been taking Oxycodone but it was giving me insomnia. I have tried a plethora of opioids, they all made me sick. I decided at that time to only take 1 dose of each nightly, and replace the second dose with a hot bath. So this is how it stands today. Ropinirole, 1 dose of .06 mg nightly for 4 days and 1 dose of 1/4 tab of Methadone nightly. This is really not enough but I make do. I am very concerned about going through augmentation again. So far, it seems as if the dose is too small to augment on. There is no way I will ever increase the dose. If I do start to augment, I don’t have a plan B. Thankfully, at this point my symptoms are just a fraction of what they were when I was augmenting so terribly.

I am under the care of a hematologist. She lets my ferritin get up to 200. If I get close to 150 she orders an iron infusion.

I am vigilant about watching my triggers. No caffeine, no alcohol, very few carbs. Absolutely no processed foods or sugar at all! I limit my fruit to 1 piece a day, and not after 3 pm. I saw a neurologist recently who said I lived like a monk. I don’t like living like this but I have no choice.

I take magnesium, potassium, D3, B12, as well as other supplements, especially ones to lower inflammation.

. . . . The pevious was written yesterday afternoon. Not too long after, I started with extreme nausea again. This is a sign to me that opioids are building up in my system and I need to stop for a while. I know this from past experience. Most of us with RLS have learned how to listen to their bodies. What one person experiences might not be what another person experiences. One thing I refuse to do is take even that small dose of Ropinirole every night. So last night I went without any RLS meds. I got through. Wasn’t easy, but wasn’t horrible. I will go without meds tonight also. And then reassess each day going forward. I wish Gabapentin worked for me, but it didn’t.

Another side of this horrible Ropinirole withdrawal for me has been very serious depression due to DAWS. Really, really bad depession. I was barely able to function and sobbed continually most of the time. As I said in my privious post “Life Without Ropinirole” I was prescribed Wellbutrin (Bupropion in UK) last June or maybe July. I tried to take the prescribed dose of 300 mg daily. It made me crazy with anxiety, which is one of the side effects. And I don’t mean just a little anxiety. It was intolerable. I tried taking smaller doses, and finnally went down to 6 mg daily and when I stabilized on that I increased a little more. I have now been able to raise it to 16 mg and have a goal of 25 mg by summer. Now that I have found a way to tolerate it, it has started to improve my depression. I sincerely believe I may have never recovered without it.

Last September I started 38 treatments of rTMS (repeditive transcranial magnetic stimulation) for my depression. Unfortunately it made no difference. I spoke to the administrating psychiatrist about the possibility it could improve RLS. His answer was that there is no absolute data on this, but to help with RLS a different part of the brain has to be stimualted. The part of the brain that controls movement issues, not the part of the controls depression issues. I may undergo treatment for other part of the brain. I’m waiting to see how much of this my insurance will pay. It is certainly not cheap!

I remind myself every day, ONE DAY AT A TIME!

[Hidden]

Wow, your RLS seems to be getting better and better if you can fall asleep with no meds once and a while. You gave the opiates a good shot. They’re not for you. You might be a “slow metabolizer.” Or just intolerant to that class of drugs. More good news is that the Wellbutrin is helping. Well here is where I do my sales pitch for nightly iron supplement. See my profile page. There’s two parameters, ferritin and serum iron. I think serum iron is more relevant in terms of our day to day symptoms. I know your ferritin is quite healthy, but everyone’s serum iron plummets at night. The non-RLS world is not bothered by that drop but I believe we are. The great thing with the iron supplement is that it only takes one night to see if you are one of the lucky ones for whom it provides same day relief. If it doesn’t then I recommend switching to an every other day regimen.

I have one question - during those two weeks that you were barely able to eat while the opiate was leaving your system, was there any improvement at all in RLS symptoms? Clearly not complete relief. Drugs are a double edged sword aren’t they.

[Birdland in reply to Hidden]

Drugs certainly are a double sword. While I was going through those 2 weeks my symptoms got progressively worse as the opioids left my system. When I started feeling better is when they became very bad. I'd have to agree that I am a slow metabolizer. Whenever I would try caffeine it would take 3 days for my legs to calm down. That's why even a morning cup of coffee doesn't work for me.

It is quite amazing how much better my symptoms are since I am no longer augmenting on Ropinirole! It is the devil's drug! I also think it's possible the dopamine the Wellbutrin is producing could also be helping.

I guess it wouldn't hurt for me to try the iron supplement.

[Hidden in reply to Birdland]

Yes please, try. You survived the tsunami caused by the DA and during which time the iron would not have provided relief. Now I give it better than 50% chance it will provide you with substantial relief.

[Birdland in reply to Hidden]

Definitely worth a try!

[Jumpey]

I am very sorry that you have gone through such a hard time. I empathise. When drugs go wrong it is extremely difficult .It sounds as though you are now on a better path, albeit not perfect.I dearly hope that things continue to improve for you.Sending love. X

[Birdland in reply to Jumpey]

Thank you so much Jumpy. That is a nice sentiment. It's been a long road. Yes, correct, better path but not perfect. Going in the right direction.

[Hidden]

So sorry to hear of your RLS journey so far i have no answer for you but i understand your intolerance to meds. I have a problem taking any of the meds my tolerance to them is low and tried them all. At the moment i am taking one pramipexole lowest dose and up to one 8/500 cocodamol it makes me very drowsy sometimes in the day i am always nodding off. Got fed up and decided yet again to juggle them so took half a pramipexole and slightly increased the cocodamol the other night , it back fired on me, got two hrs sleep 🙄. The one pramipexole on it’s own doesn’t work and i won’t increase it the cocodamol doesn’t work on it’s own or at any increase. I hope you find a solution so you can get a life back it’s a nightmare where you have a low tolerance or fo those who even can take higher doses of their meds still can have problems 🌺

[Birdland in reply to Hidden]

Wow, I understand. It's a constant trial and error! Good luck to you!

[SueJohnson]

How much gabapentin were you taking? And when were you taking it with respect to when you came off ropinirole?

[Birdland in reply to SueJohnson]

It's difficult to remember exactly how much I got up to. This was 3+ years ago. I was under Dr. Buchfurer's care. When I failed at taking opioids the first time and returned back to Ropinirole (at a lower dose) is when I tried Gabapentin. What I remember is that it made me really drowsey but did nothing to relievemy symptoms even after time and raising dose. I still had to get into the bathtub during the night and was falling asleep in the tub as well as almost slipping numerous times. Dr. B felt as if none of this was good and I should stop, as it didn't seem to be working for me. Again, my sensitivity to drugs becomes a problem. The side effects become intolerable before I can get the benefits.

[Joolsg]

I am full of admiration for your tenacity Birdland. You have been to hell and back and are still striving to find a solution.You are exactly why the research teams should be finding new meds to treat this serious disease.

I am not sure I could be as strong as you.

Perhaps it may be an idea to look at Low Dose Naltrexone as advised by Niepowiem. I have heard of another woman who managed to get off Oxycontin and pregabalin after the LDN worked for her severe RLS. She has now left the forum.

As there are no other drugs available, it may be worth exploring.

Thinking of you,

Jools

[Birdland in reply to Joolsg]

Thanks Joolsg. I have no choice but to keep trying.

I sure hope reseach brings us new possibilities!!!

I am very interested in learning more about LDN. I had never heard of it.

[Joolsg in reply to Birdland]

I know many people use it successfully for autoimmune diseases like MS, lupus, crohns. It's available on private prescription here in the UK ( most other meds are covered by NHS).I've read incredible reports from people and do know a few with RLS who have used it successfully.

You can't take it with opioids though so anyone on Oxycontin, codeine, hydrocodeine, methadone or Buprenorphine would have to be off their meds before trying it.

Having said that, flowergirl used micro doses of LDN to reduce Oxycontin and pregabalin and then increased her dose of LDN to cover her RLS. She said it completely covered her RLS when the Oxy and pregabalin weren't helping.

I'm not sure where you'd get it in the USA but a google search will find it.

Worth a try.

Jools x

[Birdland]

Hmmmm, never heard of LDN. I will look into it. Thanks.

[Arjiji]

Hello. I am sorry to hear all your health problems and I hope that you will solve them with a lot of willpower and self-experimentation.

I was looking for how to use magnesia or other natural products to control my legs in bed, after exercising during the day, when I read your post.

I want to tell you that I had 20 TMSr sessions for my RLS and it went well, now I have stopped taking any medication for my RLS and I sleep almost well without taking anything.

But I have started exercising again, walking 5 km a day, and I notice that when I exercise I have problems with my legs again and I have to take a clonazepam pill.

But cheer up, if you can afford rTMSr I would give it a try. Not everyone is doing well, but it doesn't do any harm, well yes, only to your bank account.