Restarted convulsions after being off Ropinirole for a year

[joepublic]

When I came off it and started Oxycodone I used to get an involuntary spasm in my abdomen at night. It's like the stomach muscles contract instantly & goes on & off for a few hours.I did reduce Gabapentin (300) from 3 tabs a day to 2 a day but that was months ago.Sleeping is horrendous now so off to a sleep clinic.Any ideas?

[Joolsg]

Hi Joe

Sorry to hear that your sleep is really bad.

What dose of Targinact are you on and at what times do you take it? Why are you reducing the gabapentin?

I was on Oxycontin 25mg and 150 mg pregabalin for years after I came off Ropinirole and I still had severe RLS and was woken several times a night.

Has your RLS been bad since starting the Targinact and gabapentin?

Sounds like you need a review and a switch to different meds.

How's your serum ferritin?

[joepublic in reply to Joolsg]

I take a 2.5 Mg pill at 10:00 PM & 09:00 AM

I reduced the Gabapentin on the advice of the consultant.

This has been going on for about a month now and there is no pattern to it but sleep has been a long term issue and I am up every hour usually.

No idea of Ferritin as that has not been discussed at my half yearly reviews

I would say the RLS is better on Targinact & Gabapentin than it was on Ropinirole but then again I had he augmentation so it would be. I would like to back off the Targinact altogether & see how bad the RLS gets then start medication again, maybe another type.

I don't like taking the Targinact as I have had to abstain from alcohol totally

[Joolsg in reply to joepublic]

That's an incredibly low dose for RLS. The average dose is 30mg. 15mg in morning and 15mg at night.

Also, you can drink on Targinact. I was on Oxycontin for 5 years and moderate drinking was fine. No interactions or side effects.

Why did the consultant suggest reduction of gabapentin?

Are you up every hour with RLS or is it insomnia caused by the opioids?

I'm confused as your RLS is clearly not controlled but the consultant has you on a very low dose of Oxycontin, has reduced your gabapentin and hasn't ordered full panel fasting bloods to check your Ferritin. Did he give a reason for reducing the gabapentin? is the consultant?

You really need a review and either increase the Targinact to the average dose ( 30mg day) and increase the gabapentin OR switch to an alternative low dose opioid.

Go to your GP and ask for full panel fasting bloods.

[joepublic in reply to Joolsg]

OK I'll get the blood tested again & see what it shows as sleeping in short bursts at night is a real pain. I am sure I read the leaflet that came with the meds & also discussed it with my specialist & no alcohol was permitted as it causes breathing issues? I'll also query the dose as he said I was on the max dosage Targinact 5mg/2.5mg modified-release tablets (napp pharmaceuticals ltd). I would love a drop of red wine again.

[Joolsg in reply to joepublic]

I'm afraid he's incorrect. 5mg is the starting dose, 20 to 30mg a day is average and 60mg is mentioned in NICE guidelines below. RLS isn't taught at medical school in the UK so most GPs and neurologists aren't familiar with the disease or how to treat it effectively.

The Mayo Clinic Algorithm has been written by the top RLS experts and is well worth reading and sharing with your doctors to educate them.

You need decent cover for your refractory RLS. 5mg of Targinact and reducing your gabapentin indicates that the doctor treating you is not up to date or familiar with RLS treatment.

I agree that most RLS med leaflets advise you to avoid alcohol but I always had the occasional drink while taking it and it didn't cause any issues. Opioids and alcohol both cause respiratory depression.

nice.org.uk/advice/esnm67/c....

mayoclinicproceedings.org/a...

[joepublic in reply to Joolsg]

Thanks Jools I'll raise this with my consultant asap as I can't wait for 6 months.

[joepublic in reply to Joolsg]

Hi Jools my consultant conceded that I can drink 'moderately' on opiods. I have ordered the blood test, but he can't increase the Targatin dose as it's not licensed for more than 10 Mg/day in UK. He's suggeted upping the Gabapentin to 3 x 400 or 3 x 600 daily.

[Joolsg in reply to joepublic]

Did you show him the NICE guidelines on Targinact which clearly show average dose of 20mg a day? I know they are just for reference and each health authority has strict rules on opioid prescribing, but you are left with severe RLS and no sleep. I really think you need to see a consultant who knows about RLS. If you can afford to see Prof. Matthew Walker at Queen Square, UCL by phone, he will definitely increase the Targinact dose to cover your RLS or the gabapentin or both. His NHS waiting list is longer.

I am so sorry that you have been so let down by your consultant. 10mg of Oxycontin a day will not cover most cases of moderate to severe RLS.

Most specialists treating severe refractory RLS after dopamine agonists have caused augmentation will prescribe low dose opioids or gabapentin. Your specialist has prescribed the lowest possible dose of Targinact AND wants to stop gabapentin. How are you supposed to sleep?

I really think you need to change your neurologist .

In the meantime, ensure you get actual numbers for your blood test as they will tell you it's 'normal'. Normal for RLS is much, much higher as we need iron to reach our brains.

Keep us updated. If you let us know which county you live in, someone else may know a good neurologist close to you.

[joepublic in reply to Joolsg]

OK thanks Jools I'll go back to him with what you say & if he won't play ball I'll go private with your recommendation as I need sleep. I did see a guy on TV a few days ago talking about iron stores in the brain and he was doing research on intra-venous iron infusions as oral supplements re no use to RLS.

[Joolsg in reply to joepublic]

I had an iron infusion and gave info to two other people on here and they have also had iron infusions. It's difficult in the UK but St George's in Tooting, the Royal Cornwall in Truro and a Sheffield hospital have all done it. 60% will have dramatic improvement.

Prof. Walker will refer for infusions as well.

I wrote direct to the haematology Department at St George's with research papers and they agreed on 'compassionate' grounds. I'm in the 20% for whom it doesn't work but the odds are in your favour.

[joepublic in reply to Joolsg]

OK thanks Jools is this Prof Walker in the UK? If so where so I can find him?

[Joolsg in reply to joepublic]

He's at Queen Square. UCL.

professormatthewwalker.co.u...

[joepublic in reply to Joolsg]

Many thanks Jools

[TeddiJ]

Hi. Just wanted to share that I am having very strong upper abdominal contractions, too. Recently they are occurring day and night but I don't feel the usual RLS symptoms in my legs. They are not painful but they definitely keep me from sleeping. I feel the muscles contract-as though I am doing a situp, even as I type this. I wonder what on earth could be going on?

[joepublic in reply to TeddiJ]

Exactly the same.

[TeddiJ in reply to joepublic]

Thanks-it is just nice to know that someone gets it! It is soooo odd. I have been off ROP and PRAM for a year also, although I did take some doses of ROP off and on this past spring. Are you still taking the oxycodone? I wonder what we have in common that is causing it?

[joepublic in reply to TeddiJ]

Yes I take Targinact. I also wonder what causes it as it drives me nuts

[TeddiJ in reply to joepublic]

I know-it's so bizarre! Just fyi, so we can try to figure this out: yesterday i had those contractions all day, as I mentioned. I took only some magnesium and vitamin D and probiotics in the afternoon and had a (rare) massage. I skipped the berberine (taking as an experiment to see if it can repair receptors) and other supplements.

Last night, I did not use any kratom or hirsuta, or the suboxone (an opioid) and dipyridamole I had recently started. I took 1/2 of a 50 mg Delta 8 gummy and fell asleep. It's the first night I have slept through the night in ages! The abdominal contractions have stopped. I've taken Delta 8 gummies (synthetic THC) and they never helped rls/plmd before.

We shall see what tonight and this week brings, but thought you might want to see the above. You may already be in bed in the UK and I hope you are actually sleeping! Are you still having the contractions?

[joepublic in reply to TeddiJ]

Yes same again

[TeddiJ in reply to joepublic]

Ugh-so sorry you are awake with this. Do you have kratom? Have you read any of my posts about it? It is so helpful when in your situation! Order it as tea, since you are in the UK, per Joolsg's recommendation. I think from Scotland or somewhere close. Get it as soon as you can-until you get the rest of your meds and supplements sorted out. Red vein powder, such as red bali or red borneo, etc. It works within minutes-even in the worst cases.

[joepublic in reply to TeddiJ]

I'll do anything,

[TeddiJ in reply to joepublic]

Joe-I so get it and I have been suffering a ton this past year. Kratom and hirsuta have completely saved me and allowed me to sleep, even though I have to piece the sleep together.

Vape shops have both kratom and Delta 8, although this may be tougher in the UK. Hence, the online tea suggestion by Joolsg.

Hang in there and get that stuff overnighted to you so you can SLEEP SOON.

[joepublic in reply to TeddiJ]

worth a try

[TeddiJ in reply to joepublic]

I can almost guarantee you it will work.

[TeddiJ in reply to joepublic]

You can check it out on this forum, too. I would never know about it if not for DoDahMan and this forum. It's been a miracle on so many levels, as it also helped get me off methadone (used to get off the DA's).

[TeddiJ in reply to joepublic]

As a reference, look up mitragaia.com. Red vein powders and capsules.

[TeddiJ in reply to joepublic]

joepublic - how are you doing? did you order it and get some sleep? i just wanted to let you know that the stomach contractions are from the opioid-in my case it is the suboxone. I stopped it for a week and they were completely gone. Last night i tried it again and they were back. Not sure what this means though and it is not good news!

[TeddiJ in reply to joepublic]

well, so sad to report that last night wasn't nearly as great. rls/plmd woke me at 5 a.m. I took 3 iron caplets and a small amount of kratom which worked for a couple of hours. then more kratom.

so now i am trying to figure out what triggers the massive stomach contractions-which had totally gone away when i stopped everything.

sigh.

[SueJohnson]

As Joolsg suggested, you need to have your ferritin checked. If it is below 100 improving it to 100 or more helps 60% of patients and in some will completely eliminate their symptoms. Ask your doctor for a full iron panel. Stop taking any iron supplements 48 hours before the test and fast after midnight. Have your test in the morning when your ferritin is lowest. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your ferritin to be over 100 and your transferrin saturation to be between 20 and 45. If your ferritin is less than 100 or your transferrin saturation is not between 20 and 45 post back here and we can give you some advice.

[SueJohnson]

As Joolsg asked - why did your doctor have you reduce your gabapentin. As I mentioned to you previously, According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin. 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 have tested your ferritin and would not have reduced your gabapentin. I would suggest you print out the appropriate section on gabapentin and opioids and take it to him/her. Https://mayoclinicproceedings.org/a...

[Munroist]

After a serious back issue I occasionally got twitches in my stomach muscles, a bit like a tic in your eye. They weren’t full contractions, more like a twitch and lasted anything from 5 minutes to a couple of hours. It was due to my nervous system being fired up after my back issue caused a disc to trap the nerves in the lumbar spine. It only happened a few times and went away as the back/nerve issue healed.

[TeddiJ in reply to Munroist]

Thank you for this info-it really helps, as this is quite confusing.

[Nikon-]

hi Joe not sure if you know but there is a drive by NHS England to get people off Oxycodone

This is due apparently to high rate of deaths in USA

My daughter is on it for a different illness and her gp has written to her to reduce and possibly withdraw the prescription

They have already reduce her repeat script

This is in Greater Manchester area

Just thought would throw this one in for anyone else who is on oxycodone

[joepublic in reply to Nikon-]

Great - just when I was thinking of increasing the dose.

[Joolsg in reply to Nikon-]

Very worrying as they really don't understand the difference between Oxycontin used for pain and Oxycontin used for RLS. There is evidence that opioids lose effectiveness for pain and patients need higher doses but that is not the case for RLS.

I always print off the Massachussetts Opioid study on RLS to show that for RLS, low dose opioids rarely cause addiction or tolerance.

massgeneral.org/rls-registry

[TeddiJ in reply to Nikon-]

Thanks for telling people and you may want to do a full separate post with a headline so it is seen. I am in the US and was cut off from methadone, used to get off the DA's, because they have really cracked down here. I wasn't on it for long but still went through horrible withdrawal. I read about kratom on this forum and it totally saved me. You may want to order some yourself as a backup (see my other posts to Joe for info).

[joepublic]

Thanks Jools