Gaba Drink

[sangeet1]

I am trying a Gaba drink called Sen Tia, i don`t know if this is a good or bad idea, i am trying to come off Ropinirole

So far not a brilliant help

[Joolsg]

The best help while reducing Ropinirole is a low dose opioid ( codeine 30mg, tramadol 50mg or oxycodone 10mg) taken for 4 or 5 nights after each Ropinirole dose reduction.Also, medical cannabis, available from private UK clinics can help a little.

Most other drinks/Supplements don't make much difference when you're going through withdrawal.

Experts are quite clear- getting off dopamine agonists is more difficult than getting off heroin/cocaine/crack etc.

But take it slowly.

Good luck.

[sangeet1 in reply to Joolsg]

codeine was no help at all did not ease symptoms one little bit

i have asked four doctors for stronger opioids all refused

[Joolsg in reply to sangeet1]

Can you see a neurologist? I get so annoyed at UK GPs. They happily get patients addicted to dopamine agonists and then refuse to help them get through withdrawal when inevitable augmentation hits.

If you want to consider legal action, please contact

[e-mail]

On a no win no fee basis.

She wants to bring a legal test case against UK doctors for failure to warn about inevitable drug-induced worsening.

It might make your GP actually take notice...

[sangeet1 in reply to Joolsg]

yes i am getting more and more angry with them, but i think it might be too distressing for me to do, while so ill

[Joolsg in reply to sangeet1]

Totally understand.If your GP is refusing to help further, there is another possibility.

Kratom can reduce the severe RLS. But it's now illegal in the UK. I did find it helpful in 2016 when I was getting off Ropinirole. It was made illegal in 2019.

You can buy it from

kraatje.eu/

It's legal in the Netherlands. They will post it cheaply, quickly & discreetly to the UK as 'Moringa Herbal tea'.

I only ever recommend it if someone is struggling to get through withdrawal.

You buy red vein borneo powder & take a teaspoon when needed. It tastes foul. So mix it with orange juice & down it. It stops RLS for around 3 hours and allows sleep. But use it sparingly as it can become addictive and tolerance builds up.

Don't use it for more than a month.

[sangeet1 in reply to Joolsg]

A bit dodgy lol, could be going cold turkey in a cell might try Cbn gummies

[sangeet1 in reply to Joolsg]

I went to a sleep clinic over two years ago, i had four hours of restless legs and other very weird stuff all on video no bed clothes so they could see everything no action was taken, just said it was unhelpful, maybe because i never went to sleep, i have chased them up but appointment is not till August29th, if they send letter out maybe i can find out secretaries number and i can update my symptoms

[ChrisColumbus in reply to sangeet1]

Have you been trying to come off ropinirole too fast? Joolsg mentioned the withdrawal schedule on RLS-UK's website, and SueJohnson spelled out a schedule, both of which suggest reducing by 0.25 mg once a fortnight. I've not been through this horrible process - unlike Jools and Sue - but I wonder whether you would benefit by reducing more slowly. Hopefully they'll jump in if I'm writing nonsense!

As Sue wrote (copied below), 'you may need to reduce more slowly or with a smaller amount'. Am I right in thinking you're on 0.75 mg a night? Is that 3 x 0.25 mg pills? If so, rather than trying to reduce by a whole 0.25 mg pill at a time - if that's what you are trying to do - you could get an inexpensive pill cutter (available from e.g. some pharmacies, Tesco, Amazon etc) and cut a 0.25 pill into half or even quarters and reduce by a smaller amount each time. You may still need to go more slowly than once a fortnight, and hopefully the codeine will help between each small reduction.

Sue's guide (my emphases): "To come off ropinirole reduce by .25 mg every 2 weeks or so. 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 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."

Best wishes.

[sangeet1 in reply to ChrisColumbus]

yes probably trying to come off Ropinirole too fast but i have a procedure to unblock artery in leg very soon and you have to lie still for up to four hours and even if i have anesthetic i have to keep still two hours after waking up, so i wanted to try to improve restless legs before i went

[ChrisColumbus in reply to sangeet1]

Understood. I note that Jools has suggested sourcing and trying kratom. But how soon is very?

[sangeet1 in reply to ChrisColumbus]

month

[ChrisColumbus in reply to sangeet1]

And I suppose asking to delay the procedure might put you to the back of the queue? But that might be necessary.

You must discuss your situation and the potential problems with your doctor.

To give you some idea, the following is taken from the RLS Foundation's (US) Medical Alert Card, to be given to medics before a procedure:

"I have Restless Legs Syndrome, a chronic neurological condition that causes extreme and unbearable discomfort in my legs associated with an overwhelming and, at times, uncontrollable urge to move the legs. Please be alert that if I am immobilized, sedated, or coming out of anesthesia my symptoms can worsen and my legs and body can jerk uncontrollably. As moving the legs may be the only thing that will relieve the symptoms, I will make a desperate effort to get up to move, even if I am not fully aware of it"

If for example you are to be given an anti-nausea drug during the procedure you must ask for ondansetron (Zofran) rather than something that will make your symptoms worse.

RLS-UK also has advice prior to a hospital stay/surgery:

rls-uk.org/_files/ugd/7f645...

[sangeet1 in reply to ChrisColumbus]

Thanks Chris, i now have the hospital alert card, also i do have another appointment with specialist before procedure

[SueJohnson in reply to sangeet1]

And here is my advice for surgery which repeats some of the things that Chris said but says a few things more:

Tell your doctors and anesthesiologists about your RLS and its symptoms and that you need your medicine and ask if there will be any drug interactions from what they will give you. Also talk with the patient representative ahead of time. Tell them not to give you any sedating antihistamines or sedating anti-nausea medications. Instead insist they use Zofran (ondansetron) for anti-nausea.

You can download the Medical Alert Card that you can show your doctors, that tells them about the condition and what will happen after surgery and what medicines to avoid at rlshelp.org/ although you will need to join the RLS foundation. An international membership is $40, but they have some good information on it and you get their monthly magazine. However the safe antidepressants listed on medical alert card are not antidepressants: Lamotrigine, Carbamazepine, Oxcarbazepine. Also there is a 2 page handout "Surgery and RLS: Patient Guide" on the RLS Foundation website which is very helpful. Also "Hospitalization Checklist for the Patient with RLS"

And I hate to tell you this but the inflammation from the surgery and the withdrawal from any opioids they give you may make your RLS worse for awhile although it will go away.

I would suggest you to put off reducing your ropinirole until any after effects of your surgery wear off as the withdrawal effects after you are off ropinirole, even if before the surgery will make your RLS worse. You really don't want both.

[sangeet1 in reply to SueJohnson]

Thank you Sue, i had operation on piles recently and almost immediately the symptoms of RSL started after spinal anesthectic, but i could not move my legs and it was ten times worse that when they are flying all over the place, never want to go through that again, it was actually a relief when about one hour later in ward when my legs went crazy

[sangeet1 in reply to SueJohnson]

Are doctors supposed to do fasting full panel test for iron levels before scribing ropinirole, they are considering it now while i am in augmentatation!