Sinemet augmenting my RLS - making it worse

[betternowman]

withdrawing from 2 years on sinemet... trying mucuna...

[involuntarydancer]

Good luck with the withdrawal. You are in good company as so many on here have been through it. Are you on a high dose of sinemet? You will probably already know the importance of taking it very gradually and allowing your body to accustom to each reduction for a couple of weeks at least before making a further reduction.

Most people find that towards the end they need a temporary opioid to get them through as nothing else will touch the powerful RLS symptoms which persist 24/7. However, I am here to tell you that it is possible to do it without an opioid as my so-called consultant refused to prescribe one.

I hope your medical advisors are aware of the important role of iron in treating RLS generally and in helping prevent augmentation to those taking a dopamine agonist and in withdrawing from a dopamine agonist. You should have your serum ferritin figure (not just that you are 'normal') and if you are below 75 take an iron supplement. If you are between 75 and 100 your GP should consider referring you for an iron infusion using injectafar or something similar. This may help with the worst symptoms of the withdrawal and with treating your rls post-sinemet. If GP is resistant it is worth printing off one of the studies that support iron therapy and presenting him/her with it.

I hope the mucuna works for you. There are quite a few posters who have tried it. It's worth bearing in mind that it operates on the same receptors as sinemet so theoretically may contribute to augmentation. Other treatments that have been found to assist in dopamine agonist withdrawal are kratom (though not legal in many jurisdictions) and cannabis (ditto).

[betternowman in reply to involuntarydancer]

I just used kratom for a couple of weeks to bridge off the last of the opioids... I did get 2 big iron infusions: feraheme... I was very hopeful about those but no effect was noted... I have a memory from before the ablations which led to open heart surgery when they passed a cold catheter too close to my LAD artery (no I don't have heart disease - just arrhythmias) and from before the 4 spinal fusion surgeries of a time when my RLS would come and go in cycles... I have a probably stupid hope that if I can get off all opiates (done) and the sinemet that my natural body chemistry will land me in a better place... I can hardly stand to sit here and type this because my legs are jerking all over the place... you know what I'm talking about... many thanks for ideas... I watched my mom go thru the sinemet and then the dopamine agonist trials 20 years ago... ultimately she relied on lots of vicoden for best results but I don't want to follow her with that... and I have refused the dopamine agonists... thanks again... oh yes... I am currently taking 1.5 - 2.0 sinemet tablets/day... the 25/100 ones (levadopa/carbadopa)... I was taking 5 or 6 of those tablets/day a year ago so I've already tapered down a lot... I cut the tablets in quarters and take 6 to 8 of those in each 24 hr period... I can feel the muscles in my jaw and chest start to tighten up if more that 4 hrs has passed since last dose... am thinking to gradually shift from sinemet to mucuna and then finish tapering off of that... the way I did from dilaudid to oxycodone to hydrocodone to tramadol to kratom to cold turkey about 10 days ago... that whole opioid taper took a year and a half... so glad to be done with that even if I still feel the agonies of end of withdrawal... PAWS... they call it I think...

[involuntarydancer in reply to betternowman]

Wow! You have your hardships. And such a happy smile - if that is your picture at the top. Congratulations on eliminating the opioids. It sounds as though you are on the right track with a gradual elimination of sinemet. I would have thought it likely that your symptoms will settle down somewhat when you remove that - possibly more so than the opioids (ultimately). Don't be too hard on yourself though. You do sound like you will ultimately need something to treat your rls and you may need something at least temporarily to get you through the final stages of getting off sinemet. Good luck! And keep posting.

[Joolsg]

Good luck. Many of us have been through it so know how difficult and traumatic it can be.I hope your doctor has advised you to go very, very slowly and that you may need opioids to deal with the intense withdrawal symptoms.

As ID advises, raising serum ferritin can help augmentation and make withdrawal a little easier.

What meds has your doctor suggested as a replacement?

[betternowman in reply to Joolsg]

I briefly tried gabapentin and lyrica... did not like the ways they made me feel and was very reluctant to get addicted to something else so I only tried for a couple of days...

[Joolsg in reply to betternowman]

The side effects of gabapentin and lyrica are troublesome but tend to settle after about 3 months.Just keep an eye on the withdrawal symptoms and do let your doctor know that you're reducing the sinemet.

I see you've also been on opioids but you came off those. I was going to say you might need an opioid to deal with withdrawal symptoms. Is there a reason you did so?

RLS does seem to run in your family (you mention your mother tried sinemet and DAs) and you've had spinal surgery so you will probably need to consider medications.

I presume you're planning to get off all medications and see if you can manage with alternative remedies.

I hope that will be enough.

[betternowman in reply to Joolsg]

all the doctors seemed to agree that I should get off the opioids first and then start tapering to get off the sinemet... no one said that being on opioids would help while withdrawing from the dopamine... I appreciate this blog... seems like some people with real knowledge and experience are hanging out here hoping to offer some help... I will try and do the same...

there was so much pain from the first cervical fusion surgery that trying to get off opioids was impossible for the first 1.5 yrs I was on them... the next 3 spinal fusion surgeries were never as painful as that first one... I think the surgeon left peripheral nerves still being actively crushed between C4 and C3... something like that...

another surgeon went in there and fused top thoracic vertebra to bottom cervical... adding titanium brace from the back side and tried to scrape out material crushing peripheral nerves...

so first neck surgery had fused c7-c3... like I say pain never diminished from that one... finally I had 3rd neck procedure: another spine practitioner did electrostatic ablation to fry pain nerve endings between cervical vertebrae on right side of my neck and that eventually gave some relief which allowed me to contemplate finally reducing opiates....

took another year and a half to finally taper and succeed... yay... I am very happy about that and able to live with existing cervical pain levels...

was similar in lower back... a chiropractor accidentally ruptured vertebra right side between S1 and L5 which he did while doing experimental "meningeal release" aimed at curing heart arrhythmias (pvc's)... no I had not been experiencing any lower back pain... (yes that is picture of me as very happy performing on the road musician until that chiropractor exploded that disc...)

so then the same spinal surgeon who left my neck in such endless pain tried to fix my lower back... he put in titanium brace but with screws angled wrong so they eventually poked through top of vertebra into healthy disc above and walking became impossibly painful... so I went to different surgeon (same one who tried cervical repair) and he took out offending hardware and screws and replaced them properly and now my lower back is pain free... yay...

meanwhile the cardiac ablation specialist accidentally froze my LAD artery while trying to fix pvc's so I ended up with open heart surgery... double bypass... even though I had no signs of hard or soft plaque... caratoid arteries completely open etc... literally no heart disease... so rehabilitation from open heart surgery was impossible due to spinal pains etc etc etc...

I've been so weak for so long... but finally coming out of it... just gotta get off all drugs and find out where I'm at...

if it turns out gabapentin for my rls will be best for me then I will try it I suppose but first I need to find out if the old me is still alive inside this body...

last night was usual... went to bed around midnight (early for nightowl me) almost fell asleep a few times but was up walking over and over until 7am... then was able to get a couple of 2-3 hour sleeps until a little after noon... as we all know the exhaustion factor is ridiculous but I would choose to live with rls exhaustion over getting dependent on some other drug again unless really necessary...

strange withdrawal symptoms hitting me now are not just creepy-crawly rls nerve neuropathy but also severe cramping... like charliehorse cramping in neck chest arms legs stomach...

and also bloated gut... when I gained some of the 40 lbs I lost during all these surgeries back it all seemed to show up in my belly... strange... and even though I'm off opiates for a month now I still need laxatives... hopefully strange bloated gut pains will just resolve and go away...

I share all this hoping of course for useful advice for myself but also in case others are going through similar things and I can possibly help... even just offer sympathy and camaraderie

[Joolsg in reply to betternowman]

Thanks for sharing your story. You have been to hell and back with all those surgeries. You are incredibly brave and strong.I suggest you go as slow as you can with the sinemet withdrawal- at least 6 months. That should make the withdrawal spasms and jerks more tolerable.

I understand now why you're reluctant to take opioids.

If medical cannabis is available in your state ( for some reason I'm assuming you are over the pond in the USA) then definitely get some. It will help the withdrawal symptoms and allow you some sleep. They legalised it here in the UK in 2019.

I used illegal cannabis in 2016 to get through withdrawal from Ropinirole and it was the only thing that really helped. That and compression socks to distract me from the leg sensations.

Do keep us updated on the sinemet withdrawal. There's usually someone on here in the middle of the night as there are members from all over the world, in different time zones.

Take care

[betternowman]

Here are results of ferritin tests in case you can make sense of them: IRON, TIBC AND FERRITIN PANEL

IRON, TOTAL 94 50 - 180 mcg/dL

IRON BINDING CAPACITY 338 250 - 425 mcg/dL (calc)

% SATURATION 28 20 - 48 % (calc)

FERRITIN 82 24 - 380 ng/mL

So after those results I was given 2 infusions of feraheme 10 days apart... my reaction was kind of rough... I will see the Dr who administered those infusions for follow-up in another couple of weeks... I have no idea if he will recommend more or not... I have not had any improvement in RLS... sorry to say....

[betternowman]

Still stuck on 2 tablets of 25/100 sinemet/day = 1/4 tablet every 3 hours... Tried gabapentin and pregabalin and kratom briefly again but none of them seemed to affect the main withdrawal problem: muscular rigidity!

Just trying to wean down a little bit creates such rigidity that my eyes twitch, neck muscles get so tight it's frighteningly hard to swallow... tight chest muscles make it hard to breath deeply... tight belly muscles make it hard to poop... tight leg muscles make it hard to walk... tight arm muscles make it hard to use hands... I even went to ER for another cervical MRI because I thought maybe there were new nerve pinches... but no, it's the sinemet withdrawal.

My neurologist told me if I could wean off the opiates I could eventually get off the sinemet but I haven't had any luck yet. I still return to the same dose to avoid total exhaustion. She actually started wondering if I have FMD (Functional Movement Disorder) since the convulsions in my body happen involuntarily.

I have some Zandopa to try... disappointed to hear it might just exacerbate augmentation already experienced with the Sinemet.

I saw the Iron Infusion doctor and he gave up on me and iron concluding that after the 2 big infusions he gave me with no positive effects that it wasn't worth trying any further.

In the past when I've tried CBD oils they have kicked my heart further into PVCs... not good... Anything with THC much worse than that...

My primary care Dr had me try the Sinemet 10/100s but they made things worse...

Soooo... Guess it's just me and the super slow Sinemet taper... They say if I get down to 1/2 tablet/day I can cold turkey off it from there...

I am so discouraged with all drugs that I feel like I have to experience my RLS again with a clean body... I have some crazy hope that that could be a big improvement...

I hope some of these comments are useful to others and of course that I might benefit from others' experiences and ideas...