Hi, Ive suffered with RLS for many years and they have become chronic in the last 5 yers. I have been on a really difficult journey with doctor, long referral wait times, opting to go private.. etc etc.. then reverting back to NHS due to drug prescribing protocols etc! But anyway Ive done Dopamine and had a really rough time of it, starting with Pramipexerole then suffering with augmentation, then being given too hight does of the Neupro Patches.. being refused a lower dose (on the NHS this is..) etc etc.. Cut a very long story short I finally sort a RLS Specialist rather than just a neurologist in London. He moved me over to Gabapentin but they just are really not working. Im not on a super high dose but reluctant to go higher as I feel very yuck on them. Im suffering with weight gain and just feeling down etc etc.. PRegabilin he said would be much the same (Im very active and eat very healthily just to add) Im now at that point wether I should just try and come off the Gabapentin and be without again... He has suggested I try dopamine again and the patches but the right dose (which I would have to pay for privately) Im really reluctant to do this given cost and the dopamine problems. So my question is has anyone just come off all drugs and stayed like that? I tried to manage it all via food and holistic style drugs before but to no avail but I feel Im running out of options and the side effects outlay what they are achieving? Thank you in advance for any input for anyone that has tried this method. Hannah
Withdrawing from all medication? - Restless Legs Syn...
Withdrawing from all medication?
You might want to try switching to pregabalin. Although it is basically the same drug except you don't need to divide the doses, and the side effects are basically the same, some people find that the side effects that bother them on one don't bother them on the other. Divide the gabapentin amount by 6 to get the correct dose.
If you come off gabapentin or pregabalin you need to do it very slowly to avoid withdrawal effects. Reduce by 100 to 200 mg gabapentin or 25 mg pregabalin every 2 weeks.
If that doesn't work I suggest a low dose opioid like buprenorphine or methadone. Many on this forum find their RLS controlled by this.
Have you had your ferritin checked?
A few people find taking iron bisglycinate every night stops their RLS completely for that night only so you could try that.
Thank you Sue x
I am on the Ferratin but not the one you mention is this meant to be better ?
Which one are you on and how many mg?
i take two x 5ml teaspoons of the Galfer syrup
That's fine
I am really concerned that the 'RLS expert' is even suggesting you go back on Neupro at 'the right dose'. There is NO right dose.Augmentation mechanism is the up regulation of D1 dopamine receptors. All dopamine agonists cause this. Even if you stay on a 'low' dose of the patch, you WILL augment again quickly.
Every single person who has been switched to the patch has augmented.
Here's a REAL expert explaining why.
youtu.be/Tz7g9sxS0_I?si=Ocx...
I suggest you write to this private doctor attaching this video. The 2011 research paper by Oertel & Trenkwalder which said Rotigitone was 'safe' has been disproved over the last 13 years.
No dopamine agonist is safe once you have augmented.
I will send you a message about this as it is extremely concerning.
Has he arranged an iron infusion or suggested buprenorphine??,
Dear Ironmanhan,
Your "RLS expert in London" isn't an expert and to suggset going back to DAs is crazy. You need a low dose (say 20mcg/hr patches) of buprenorphine and cut out all the gaba/pregba messing about...it is too late for that.
I am sure you will get much more detail from the true RLS expoerts on this forum shortly
Davchar
this was sent to me by Clamire. Also advised to take B6 and Vit E. at a different time of day. They say it’s caused by hyperprolactinemia, I think that’s right! I’m not going to take Gabapentin etc yet as I’d rather give this a chance.
DesertOasis appears again.
For her suggestion of taking it every night if it works it will completely stop your RLS for that one night only so you can try it for one night and that will tell you whether it works. Otherwise since your ferritin is 270 you don't need to take iron.
Thanks Sue!
Cas, if you’re able to get six hours of sleep instead of two, or even four hours, thanks to the iron, then you should probably keep taking it. Take everyone’s advice with a grain of salt, including mine. The iron not only has your regular RLS/lousy dopamine transmission to contend with, but the dopamine antagonism caused by Zoloft and increased prolactin. For many on here, some combination of iron, and say Gabapentin, is required. They find they need both - that neither is completely effective alone. This is especially true post-DA.
Here’s example members:
“Baz33
7 months ago
Hi, no antidepressants, I've been reducing pregablin from 300mg by 25mg every 2 weeks.just come down to 200mg but they want to split it to 100mg 7am 100mg 7pm because I seem to crash around early eve.My iron keeps falling so the pharmacist has messaged the gp to ask them to look at this .Nerve conduction tests August 8th.
The iron has been amazing up until the last few days so now I take 400mg ibrufen when it wakes me and my cannabis vape ... this settles them.”
So the iron alone has never worked for Baz, but that doesn’t mean she should stop, as was recommended to you if the iron doesn’t provide complete and utter relief.
Same here with Hublot:
“Hublot profile
7 months ago
Hi, 2 nights taking the iron, what a difference why did I ever stop!! Do I just carry on taking it for ever, no reducing the amount, as stated before my tablets are 28mg and I take 2 giving me 56mg per day.
I will carry on with the pragabalin at 450mg see how it goes with taking the iron, hopefully If all goes well try and reduce the amount of pragabalin.”
RKM7 is the same in terms of needing more than just iron:
“RKM7 profile
2 years ago
I’m no longer taking the berberine. I’m still on the Gabapentin and iron. My experience is that any strong trigger like levothyroxin or Losartan in the evening are not relieved with the Gabapentin or iron.”
RKM7 was taking the iron every other night, as advised on here 🤨, when she finally realized her RLS was waaay better on the nights she took the iron.
Cas, all these members are post DA use and augmentation. The iron at night has been indispensable to them though not 100% effective alone. Baz33 actually took ferrous sulfate in the morning for several months to no avail. When she switched to evenings and ferrous bisglycinate it made all the difference in the world.
Mildly Burning After Withdrawing From Neupro
Amitriptyline 
Restless legs 
Medication rls
Withdrawal from Requip!
