Augmentation

[Jrskyhook32]

My withdrawal from DOPAMINE Agonists continues. I was on 6mg but would leave prior days patch on so that increased my dosage. Before that I was on Requip 2 mg twice a day for 2004. I am now down to 2 mg. Had two awful nights in a row. Not going back to three mgs. Being strong. What I’m noticing is that when I went from 6mg to 3 I had awful nights but symptoms were around the clock. Today I finally got to sleep at 5am slept till 12:15. Got up no symptoms yet and it’s 4:33 pm. Does this mean augmentation is getting better and now it’s just a matter of finishing my withdrawal from DAs? Last night the methadone did nothing for me. Is that due to the craziness of withdrawal from DAs? I’m at my wits end and trying to stay strong.

[RLSdaily]

I do wish you luck, I am in a similar boat. Augmentation from mirapex, trying to get off of it. Can’t wait to see my doctor. I will say when I think I am doing well, then I have a horrid night. I really just want a full nights sleep. Let us know how you do going forward

[Jrskyhook32 in reply to RLSdaily]

Same thing I plateau have a couple good nights then a few bad ones

[Sunshine458 in reply to RLSdaily]

Augmentation is HELL ON EARTH and I would not wish it on my worst enemy ever!! Good luck and God bless you!!!

[Madlegs1]

6to3 is way too fast.

The whole trick is to go down SLOWLY. And incrementally. 10% a week is a good guideline.

Withdrawal symptoms may continue for a long time.

All the best.

[Jrskyhook32 in reply to Madlegs1]

I wish you were my doctor!! It has been hell But now that I’m on 2 mgs how should I move to 1 mg? I’m on the smallest dosage.1 mg patch.

[Madlegs1 in reply to Jrskyhook32]

I haven't been on those patches, but it may be possible to cut them ( despite what they may say on the tin! ) I cut Fentanyl patches very successfully, when coming off them. Do the patches reduce in size with lower doses? If they do, then it's likely that they can be cut , because that means the dose is related to area.

Otherwise, I'd leave 10 days on the 2 before going to one. It may be possible to use another DA which has lower dose, as a substitute, for the last week or so. But I'm not competent to advise on this course of action.

At this point it would be worthwhile emailing Dr Buchfurer on rlshelp.org. Small yellow email icon on first page. He is a world expert on rls. Or night dancer might be able to advise.

Good luck. You have done a great job getting this far.

[Jrskyhook32 in reply to Madlegs1]

Thank you!!!!

[Jrskyhook32 in reply to Madlegs1]

Thank you

[macewan13]

It is possible to cut the patches in half. My doctor advised this and I did it.

I have finally come off the dopamine agonists after being on them for years. It was really difficult, but I couldn’t believe how much better I felt during the day - no more anti-nausea pills. During the withdrawal I took a combination of Lyrica and Tramadol. I am now slowly cutting out the Lyrica and the weight is coming off. I have managed a week on Tramadol only (up to 3x50) as needed.

I think for me the secret (touch wood) is not to get too tired - maybe possible now that I have retired - and only take opioids when I need them. I had a really bad night last night - a bit like you: sleep from 6 am until 10.30 but didn’t give in to the lure of the patch.

The best of luck to you, Jrskyhook32. Hang on in there. Withdrawal is ghastly but worth it - or at least, it has been for me. I know everyone is different.

[Jrskyhook32 in reply to macewan13]

Wow thank you for the encouraging news. So happy for you and I wish you all the best. If I’m at 2 mgs do you think I have much longer to go?

[macewan13 in reply to Jrskyhook32]

It took me 4 months to go from 2mg to zero. I had been on the other DAs for several years. According to other members of this forum, withdrawal can take anything between a month and a year.

When my withdrawal symptoms stopped completely, it was literally overnight. I couldn’t believe it. It doesn’t mean I don’t get RLS any more but I usually know why - mostly fatigue. I don’t think anyone with primary RLS is ever free of it. If I can stick with the opioid when needed solution, maybe varying them, I’ll be happy. I’ll keep you posted when I see my sleep specialist in September. I’m also about to investigate the Kratom/ cannabis options.

Keep going. It WILL get better.

[Joolsg]

We’ll done for getting down to 2mg.

RLS will ramp up every time you drop a dose and then settle for a little before you drop the next dose. When I was withdrawing from ropinirole I managed some sleep from 6am until noon- easier for me as I am retired. RLS follows the circadian rythym so is worse at night- that explains why you managed sleep in the morning.

Grab sleep whenever and wherever you can.

Withdrawal will continue for at least 2 weeks after the last dose of dopamine agonist and can go on for longer but it will get better and once you’re off the patch and through withdrawal you’ll never go back.

It’s tough- the hardest thing you’ll probably ever have to do, but you will get through it

You can cut the patches in half as Madlegs suggests and do follow his advice- Dr Buchfuhrer is wonderful.

I wish you strength- don’t go back on the DAs

[Jrskyhook32 in reply to Joolsg]

Thank you so much

[Cats2]

You have my sympathies that you are having to go thru Dopamine Agonist withdrawal. I went through it several years ago after over 20 years of mirapex (another dopamine agonist) with gradually increasing dosages until I was on 20 mg. It sounds like you are doing pretty good; I ended up in the hospital with seizures after my second decrease. I was hallucinating and passing out without any warning. But I was coming down off a prolonged period of very large doses. I had to take a break in the middle of this process and go for about six months without any more decreases. The second phase was easier and I happily buried my remaining mirapex in a bag of used cat litter. I wanted none of them in the house and I felt it a fitting burial for the awful things. Personally, I think dopamine agonists are dangerous.

I wouldn't conclude just yet that the methadone doesn't work. Like you suggested, it may be that you are still feeling some of the craziness from the withdrawal. You probably are and you might actually be worse without the methadone. I now take methadone (10 mg) and 600 mg gabapentin. It works pretty well unless I have managed to stir myself up before bed by ingesting something with caffeine or having too much on my to do list for the next morning. Of course all of that is not the rls.

Be strong, stay strong. What you are doing is a very difficult thing but it IS worth it. Congratulate yourself once you are completely off. As my neurologist would say, you will have done an amazing thing!

[Joolsg in reply to Cats2]

Wow- that’s the highest dose I’ve heard of on here.

I’m so impressed you managed to get off such a high dose

I agree they’re dangerous drugs and doctors are still prescribing higher and higher doses because they’re ignorant about Augmentation.

[Jrskyhook32 in reply to Joolsg]

Not off them totally yet. Trying my damndest tho

[Cats2 in reply to Jrskyhook32]

You started at 4mg, right? Last time you mentioned a dose you were already halfway there to being off of them (2mg). You'll make it. Dopamine agonists are brain candy - our brain's love the stuff. Doctors really shouldn't prescribe it but the problem is it works so well...... at first. Then the brain craves more and more. When we deny them the candy, they pitch a tantrum. You are doing something really difficult and everyone who has gone through it feels for you. But you have to do it because augmentation only gets worse. As everyone has said, once you are through this you will never go back because you will remember how hard this process was. Hang in there; it is worth it.

[Cats2 in reply to Joolsg]

I was amazed that my first neurologist who proclaimed himself a sleep expert and even built a sleep lab told me that augmentation didn't exist and it was just my RLS getting worse. I learned about augmentation when I went to Hopkins. My withdrawal from the Mirapex was horrible and I ended up in the neurology intensive care unit at Hopkins because I was passing out and having seizures. I had to take a break from the withdrawal process at that point. A few months later it was time to complete the process but Hopkins bridged the process with oxycodone. That went much better. The first neurologist is still treating people with Mirapex. He just doesn't learn. Not everyone suffers augmentation but I have recently learned that the higher the dose for the longer time, the more likely it is that augmentation will develop. I was in the 80% range.

[Jrskyhook32 in reply to Cats2]

Wow that’s awful. I’m so sorry you went through that.

[Joolsg in reply to Cats2]

It’s terrifying that neurologists and doctors are still so ignorant about Augmentation. My MS neurologist kept increasing my dose of Ropinirole (requip over there in USA) but I resisted as I knew instinctively something was wrong.

Thanks to the wonderful people on this site ( Pippins, Elisse & nightdancer) I found the help and support to get down from 4 mg.

My GP told me off for using Dr Google and this website and also refused to accept there was such a thing as Augmentation- the same GP refused to give me tramadol during withdrawal until I went in sobbing( having had no sleep for 4 days & constant spasms/ jerking) and with print outs from here.

I am stunned at the ignorance of the medical profession about DAWS.

I have written to the distributor of Ropinirole in the UK but they instantly closed ranks and fobbed me off. Their meds now have information about Augmentation but no details about how to get off DAs safely.

Your experience sounds horrific- the fact you nearly died from seizures shows how horrendous withdrawal can be.

Like you, I am now evangelical about getting the message out there amongst RLS sufferers and their doctors.

It’s something I will be asking about at the AGM on 1 September.

I’m happy you’re now in a much better state of health and on better drugs.

Take care

Jools

[Cats2 in reply to Joolsg]

Just ready your bio about the RLS kicking in after your second pregnancy. Sounds very familiar - so did mine. Until the first pregnancy I never had any symptoms.

[Joolsg in reply to Cats2]

It’s very common on here. Involuntary Dancer had a similar experience. I suspect it’s something to do with anaemia during pregnancy and the receptors in the brain being damaged or losing their ability to take up iron once anaemia hits a certain level. Then, even if you get your iron levels up after pregnancy your brain cannot absorb what it needs. I’m sure if we had maintained high iron levels during pregnancy we might have avoided RLS.

For other people there seem to different triggers. Strangely my RLS has improved enormously since I became vegan over 4 months ago.

Onwards and upwards

Jools

[LotteM in reply to Joolsg]

Jools, so good to hear about your positive experience with the vegan diet. Do you have an inkling as to what aspect about the vegan is crucial? Personally, I have a feeling it is the dairy and not so much the meat or eggs. What do you ‘think’? I mean, what is your gut feeling about it?

[Joolsg in reply to LotteM]

I stopped meat and fish and all animal products at the same time so it’s difficult to know for certain.

I was paleo for over a year- meat snd fish but no dairy or eggs and my RLS was really bad- I still suffered every night despite OxyContin and pregabalin. So although dairy is a culprit for many diseases it didn’t seem to be the only one for me.

It wasn’t intil I stopped all animal products after reading Raffs post that things really improved a lot. But remember ID’s mantra - WAAD (we are all different).

There are so many on here who say their RLS has completely disappeared just by taking magnesium- I’ve been taking magnesium now for over 2 years and it doesn’t help at all.

This is such a fickle disease. It really is difficult to find a common cause.

On another issue- will you be able to come to London for the AGM?

Jools

[LotteM in reply to Joolsg]

Hm. Interesting. I went vegan too, but I have become sloppy over the last few weeks, first owing to a work visit to China and recently holidays. And I ‘had to’ do it all at once and also tried glutenfree and soyfree. The latter because of the LDN. Although in the end my versions were ‘poor’ rather than ‘free’. I’ll try to revert to strict again, although my symptoms are very bearable at the moment, despite the poor diet and bad sleeping behaviour (staying up too late).

Re the AGM, I would like to and considered it briefly, but quite expensive and bad timing (my dad’s birthday).

@raffs, hoe are you doing? I would love to hear more of your experiences.

[Cats2 in reply to Joolsg]

I never thought about the anemia connection with regards to pregnancy but it absolutely makes sense. I am so sorry you had to go to your GP in tears after no sleep for 4 days before he would bridge you with Tramadol. It is such a desperate feeling. I'm glad you stopped your MS doc from increasing your ropinerole. You are right, most of the medical community is completely unaware of DAWS. When my husband (who is a family practice doc) told me he thought I had augmentation and to tell my neurologist about it, the neurologist told me there was no such thing and increased my dose. That was when my husband sent me to the Sleep Center at Hopkins. When that neurologist explained what I was going to have to do to get off of the Mirapex I was terrified and frankly I thought he was a bit of a masochist. But actually he was just telling the truth. It was awful until he was able to bridge my withdrawal. Now anyone my husband sees with RLS goes to this doc because he knows he can trust him not to put the patient on a dopamine agonist. He knows the dangers all too well. Oh, that first neuro..... still prescribing them. He'll never learn. It is sad and terrifying. In this country, too, the drug manufacturer covered up the possibility of augmentation even though they knew about it. As far as triggers go, my biggest ones are caffeine, soy and MSG. Between those restrictions and an allergy to peanuts/tree nuts, I spend an awful lot of time reading labels.