Where to from here?

[Nbwndr]

Hi all, relatively new to the forum and just wondered if any might have advice on the best next step

I'm 33 living in NZ

I've had RLS on and off maybe once in a blue moon since I was a teenager but over the last year there was a huge escalation in symptoms. I believed this was due to amitriptyline which I started just before I noticed the changes. I was only taking amitriptyline maybe 3-4 nights a week at most to help with sleep.

Symptoms included the deep tickling feeling and crescendo-ing of the sensation into something like an electric shock. This was in all four limbs and happening nightly and the tickling sensation was noticeable during the day so I went to my Dr who prescribed ropinirole at the end of October last year. I'm really annoyed I didn't do my research before starting it.

It worked great for a couple of months, I didn't get up to 0.5mg as my Dr suggested, but not far off. I was taking 1x 0.25mg tab and about 3/4 of another

I noticed since xmas that I was getting some breakthrough symptoms, occuring early evening which was new.

I stopped the amitriptyline on 01/04/25 since I thought that's what was causing all the issues and was sleeping fine, so two weeks after that I also stopped the ropinirole to see how i'd get on. The first night was manageable but the 2nd was diabolical. I can only assume this was rebound/withdrawal. All 4 limbs, armpits, coming around my chest and up my neck all night. To say it was distressing is an understatement.

I started back on the ropinirole but since then i'm finding it very hard to manage and think I may be augmenting. Either that or this is just another dramatic escalation in sx over a short period of time. The crescendo-ing and jumping now start about 3pm if im sitting down, whereas before ropinirole it was largely only when I went to bed. I can't sit down for more than a few minutes to relax without it starting up. When I go to bed it's in my arms and legs and i'm not sleeping. I wake throughout the night and find it hard to get back to sleep due to symptoms and can also feel the mild sensations in my arms and legs when I get up in the morning. I'm currently on 0.35mg ropinirole (about one tab and just under half) and there's no way in hell i'm increasing it. I really want to come off of it but don't really know how after the last time...

Also want to mention: I've been on SSRI's for 19 years, the most recent being sertraline for approx 10 years. I'm not sure if this could be causing it but i'm also trying to come off of this at the moment. I came down from 150mg to 75mg over a few weeks then got hit with major withdrawal so took it back up to 100mg. Now i'm taking it down 5mg at a time with my trusty mini scales. I think i'd be surprised if the sertraline is causing the sudden escalation of symptoms over the last year after being on it all this time but it's worth a shot.

I also had an iron infusion 2 weeks ago of ferric carboxymaltose 500mg. My ferritin was 33 and transferrin saturation 36% from memory. Haven't noticed any changes yet, i'm wondering if I should ask for another 500mg.

So i'm going to my GP in a week and I have a few questions because my Dr is a good guy but i'm not confident in his RLS knowledge...

- Coming off of ropinirole. Since i'm on 0.25mg tab and (just under) half a tab, would it be worth coming off the half first, leave it a few weeks then cut out the whole tablet? Or just all at once?

- I've been reading articles on management and about gabapentoids/opioids and i'm not really sure it's a route I want to go down because i'm concerned about long term effects. I'm also really susceptible to sedating side effects. I'm really scared about it all but don't know what else to do. Never taken anything stronger than an ibuprofen...

- Would it be worth asking for codeine to take at night while tapering down for the withdrawal, then leaving it a while on nothing to see what my baseline actually is now?

- Or should I ask for gabapentin/pregabalin to help manage my symptoms after coming off the ropinirole while I very slowly wean off the sertraline? The symptoms are a huge anxiety/low mood trigger, especially thinking about having to deal with this every day for the rest of my life...

This was a long one, thank you all for reading this far and would really appreciate to hear about your experiences/advice

[Nbwndr]

I also want to mention that i've cut out coffee/chocolate/most sugar. Not a smoker or a drinker. Take magnesium glycinate, L-tyrosine and multivit before bed. Have tried TENS machine and acupuncture

[Madlegs1]

As you say-- you are augmenting from the Ropinerol.The first thing is to continue getting off it.

Continue cutting the pills by as small amounts as possible. Don't be tempted to go too fast.

Let your body tell you.

Amitriptyline is generally not good for RLS , and there are safer sleeping pills.

You can check all this out on the rls-uk site.

What to move on to is tricky for you if you are concerned about Gabapentin or Pregabalin.

Codeine is a possibility if you can get it prescribed, or low dose opioids- but I know NZ is a bit hypo over that stuff.

Sue Johnson has good advice in her replies to many posts here.

You need to get your current ferritin number, and get it up to 200 if not there already.

Analysing your history, it looks like you only had RLS from triggers when you were young.

It was the amitriptyline that started this whole mess.

So- if you can get back to a baseline, free from all the chemicals, you may be ok .

But that depends very much on how much your various receptors have been damaged by the Ropinerol.

Any way-- to cut it short.

Get off the Ropinerol, with help of codeine if necessary, then give it a few months to allow body to adjust and cope with DAWS.

Then see how things go from there, assuming iron levels and sleep issues have been addressed.

All the best.

[Nbwndr in reply to Madlegs1]

Thank you so much for taking the time to read my post and your reply. I'm hoping so hard that things go back at least semi-normal after I stop the ropinirole. I always give it a good telling off when I get it out of my med cupboard. Coming off slowly is really tricky but I'll stick with it. Thank you again

[SueJohnson]

Welcome to the forum. You will find lots of help, support and understanding here.

Yes both amitriptyline and sertraline make RLS worse. Safe antidepressants are Wellbutrin and trazodone. You will need to gradually wean off sertraline while starting either.

Yes you are definitely augmenting.

Since you are suffering now I suggest you increase your dose and let your symptoms settle for a few days.

First off check if you are on the slow release ropinirole (pramipexole). The slow release ones usually have ER or XL after their name. If so you need to switch to the regular ropinirole (pramipexole) because the slow releases ones can't be cut if needed.

Normally I advise to come off ropinirole to reduce by .25 mg every 2 weeks or so. That may be too much for you. If it is you can get an inexpensive jewelry scale that measures down to .01 gram from Amazon ($11 in the US) and shave off a bit of the tablet and measure it. Then reduce by that amount every 2 weeks.

You will have increased symptoms. You may need to reduce more slowly or with a smaller amount. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and may need a low dose opioid like cocaine temporarily to help out with the symptoms especially as you near the end. Some have used kratom or cannabis temporarily to help. But in the long run, you will be glad you came off it.

Dopamine agonists like ropinirole, pramipexole (Mirapex) and the Neupro (rotigotine) patch are no longer the first line treatment for RLS. Gabapentin or pregabalin is.

The beginning dose is usually 300 mg gabapentin (75 mg pregabalin). Start it 3 weeks before you are off ropinirole although it won't be fully effective until you are off it for several weeks and your symptoms have settled. After that increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you.

Take it 1-2 hours before bedtime as the peak plasma level is 2 hours. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. (You don't need to split the doses with pregabalin) Most of the side effects will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms.

Since you take magnesium even in a multivitamin, take it at least 3 hours before or after taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and if you take calcium or antacids don't take it within 2 hours for the same reason (not sure about pregabalin). According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)."

On the infusion it can take up to 8 weeks before your ferritin settles and you should then get another test to check what it is before asking for another infusion. Stop taking any iron supplements 48 hours before the test, don't eat a heavy meat meal the night before and fast after midnight. Have your test in the morning before 9 am if possible.

Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it as yours obviously isn't or s/he would never have prescribed a dopamine agonist at Https://mayoclinicproceedings.org/a...

Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, estrogen including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, eating late at night, stress and vigorous exercise. It is a good idea to keep a food diary to see if any food make your RLS worse.

Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennel, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, CBD, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, listening to music, meditation and yoga.

Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute. I have a list of more than 300 medicines and OTC supplements that make RLS worse and have safe alternatives for most of them.

[Nbwndr]

Hi thank you so much for replying. Just some wee questions if that's OK. You mentioned increasing the dose and letting the symptoms settle before reducing, will that be safe? Is it going to cause any more damage than already done by the ropinirole?

With opioids to help with withdrawal, is it best to take them at a certain time or can you wait and see how bad the symptoms are after going to bed first?

Lastly, I know you didn't mean to say cocaine but it did give me a much needed giggle at 4am

[SueJohnson in reply to Nbwndr]

Sorry I missed your reply since it wasn't in reply to my reply.

No increasing it and letting your symptoms won't cause more damage.

I would take the opioid before your symptoms begin not wait.

I meant to say codeine although cocaine would work too.

[DicCarlson]

You're too young to be dealing with this. First off depression is usually temporary. Far too many docs treat mental health issues and RLS for that matter by implying that you are "broken" - you need to be fixed - here take this drug. RLS is a perplexing disorder with many pathways as causation. But, even the experts cite iron dysfunction in the brain as a leading cause of RLS - do consider your iron status and possible supplementation to help with your RLS.

I know more important sleep is since my RLS - but the pharma solutions for sleep help are ALL dead end streets. Here is the foremost sleep expert in the world. It's a very long video - click more for timestamps on what interests you.

youtube.com/watch?v=Us8n8VB...(Not working as expected?)

Also do consider mental health is a metabolic issue. Brain Energy by Dr. Christopher Palmer is a new look at diet to control mental health problems.

brainenergy.com/