RLS Hail Mary

Oh I can't tell you how sorry I am for what you're going through. I am so, so sorry. I've been there, and I absolutely know and have experienced what you're talking about. Now for me personally, I of course can't say what your case is, but I can certainly speak to my experience and tell you that for me it was because of the very severe rebound or augmentation effect that happens when you're placed on roprinirole and for me also mirapex.
That's what my doctor put me on for years for my RLS and I discovered through my own due diligence that Mayo Clinic as far back as like three decades ago said they recommended strongly against dopamine agonists... I mean I know they say it's still a second line of defense against RLS now, but they strongly recommend against dopamine agonist drugs as a first line because in their studies the very thing you're describing happened to patients: Severe augmentation. And that's what happened to me too last fall, I literally felt like I was going out of my mind, I was pacing the hall all night for 4 days with ZERO sleep until my body weaned off the dopamine agonists completely and I was then placed on gabapentin.

My RLS however has gotten so severe that when my sleep doctor told me to tweak the gabapentin I knew she meant the timing of it and take it as close to bed as possible which I already had done but the RLS still broke through. So I tested for over a 3 week period titrating up on the gabapentin, trying just one extra 300 mg at a time for several nights to see if I could sleep through the night without the RLS breaking through and the only time it stopped for me was when I reached 1800 mg. So that was the first time I could sleep through the night. I've been so sleep deprived with the RLS for years so I was thrilled that I could finally sleep through the night and I was comforted by the fact that my research also unveiled that according to Mayo Clinic the average -keyword "average" -- titration for RLS is 900 mg daily to 1800 so I thought okay I'm right there in the pocket no problem. But what happened to me a week ago I never want to go through again: one minute I'm watching TV with my husband no anxiety no nothing and the next minute I'm having a medical event. Apanic attack so severe I thought I was going to die because I'm sure my blood pressure was north of 300 because it just was like I was going out of my mind. I didn't know what was causing it I wondered is this the gabapentin because again the logic of rebound you know gabapentin is a sedation effect on you so I thought have I gone too high and now I'm having a rebound??? My panic attack lasted an hour and I never want to go through what I went through that night. So when my sleep doctor found out that I had titrated up to 1800 she seemed freaked out, that's my analysis, I mean she was measured in her conversation with me but according to her none of her patients are on anything above 900, although she did acknowledge the Mayo Clinic study and what the average dosing is. And of course because she's a great doctor, she said I want you to be safe so she's transitioning me off of gabapentin and on to Lyrica because she attributed the panic attack directly to the dosage of the gabapentin. So I did some research on Lyrica and I've learned that it sounds like it's like six times more potent than gabapentin but you take a lot less of it. So we will see, but I noticed you didn't mention Lyrica in your list of meds you've experienced so I'm just hoping for the best.

Please keep us posted and I wish you well, thoughts and prayers are with you

Hi mplamondon65:

Because you take Ropinirole, maybe you are suffering from augmentation. Do you know what this is?

The RLS Foundation website has some really good explanations of augmentation. You don't have to join to read their information. Or, you can google "augmentation from dopamine agonist drugs" or "restless leg augmentation."

Whether your problem is augmentation, or not, the best thing you can do for yourself is make an appointment with an expert RLS doctor. Seriously.

Family physicians and ER doctors are not knowledgeable about treating RLS. If the dopamine agonist drugs work--fine--but if there is any problem, these doctors don't have a clue and you can just spin your wheels, getting nowhere expecting help from them. (At the same time, you suffer mightily as you have described).

The RLS Foundation can help you identify expert RLS doctors. If you are near a Mayo Clinic, there are expert RLS doctors there. Also, at Stanford in California and Mass General in Boston. There are expert RLS doctors all over the country. It would behove you to find one and make an appointment.

It took me 3 months to see my expert RLS doctor the first time, but his care has made me the RLS success story that I am. I had to travel out-of-state. It didn't come easy, but it was what has given me my life back.

My RLS also presents as pain. I had a period of my life where I suffered as much as you describe you do. So, like CP88, my heart also goes out to you. I wish you the best--to become the (RLS) success story I am today.

Please keep us posted!

With my RLS, the only medication that lets me get
some sleep is pramipexole 0.75mg (prescription).

@missjb That sounds like a fabulous idea -- skipping past all the doctors that aren't experts and going straight to the Mayo Clinic or wherever is closest to get the real truth and real help from a bona fide RLS expert.

For me personally this sounds particularly brilliant since my sleep doctor (who was supposed to be the "answer" to my PCP's woeful lack of knowledge) turns out to be, what can I say, not exactly proficient in the area of RLS, believe it or not. Proof of this (at least as I see it, though I could be wrong,): When she told me yesterday with that measured freaked out way I instantly noticed, that she doesn't have any patients on any higher doses of gabapentin for RLS than 900mg daily, (and this, when my own research unveiled that the Mayo Clinic says the *average* RLS dosing for severe sufferers is 1200-1800mg daily gabapentin). Right then and there I realized my sleep doctor either 1) is just out of her depth, or 2) the majority of her patients are sleep apnea patients, NOT explicitly severe RLS sufferers.

So...bottom line...thank you again so much for that suggestion to go past all of these perhaps well-meaning but ill-equipped medical providers and seek certified expertise from those who know how to deal with severe RLS.

If you are willing I would love to hear more about your experience, like where you went, and what (if any) hoops you had to jump through to get an actual appointment with the expert for the help you needed. For instance, did they require a referral from your pcp to get an appointment? Thanks in advance. Bravo for your success story, so encouraging to hear!

@missjb thank you so much for your reply and for the information. Everything helps and I do plan to provide updates throughout my journey in the hopes that it might help someone else living with this horrible condition.

@cpj88 thank you so much for the reply and information - I definitely need to learn more about augmentation and will post my progress in the hopes it helps someone else living with this horrible affliction.

I stopped Ropinirole and am now on Pregabalin (75mg).
I no longer experience RL.
It seems like a miracle.
I wish you well.

I continue to suffer from RLS after diagnosed at around age 35, more than 35 years ago. I have tried all of the medications listed with this post: Lyrica, requip, gabapentin, Neuro patch: nothing worked, and augmentation set in. After a neurologist from the Barrow Institute in Phoenix had me on pramipexole, and augmentation set in, I went on a "drug holiday", which as many of the viewers know is hell. The neurologist then prescribed methadone, and I suffered panic attacks (never again!) I now see a sleep specialist from Mayo in Phoenix, and I use a low dose of buprenorphine/suboxone, a very low dose (1/3 of a 2 mg tablet) and it is the only cure for me. I might have a breakthrough only if I take it later in the evening, and I rub magnesium lotion onto my lower spine and feet. The relief is about 30 minutes later.
I wish you luck during this terrible journey. I have had sleep studies, night and day, which the day-time- one hour sleep study was a disaster, a very controlled environment which produced zero results. All I can do is thank the Mayo Sleep Specialist, a neurologist, who truly listened to me, and never has given up on me.

I am 74 and too have had RLS since I was 35. In about 2004, I was prescribed pramipexole which worked wonderful. After approx 5 years, symptoms began earlier in the day and sleep was interrupted with increasingly more intense symptoms. So the dosage was increased, along with split dosing for several years. In 2019, I was taking 1.5-2 mg/day. I have since had iron infusions, added gabapentin, then to pregabalin, and very slowly reduced the Pramipexole down to .375 daily. I recently took Buprinorphine 1/2 of 2 mg pill. I experienced all the side effects-nausea , dizziness, etc. But read that sometimes it takes a couple weeks for your body to adjust. After 9 days, I thought the side affects had eased and my RLS symptoms disappeared. I was able to sleep. But on the 10th day, I ended up in the ER with tachycardia. I think it may have been exacerbated by dehydration, also. I discontinued the Buprinorphine. It took 2 weeks before the extreme anxiety subsided. I am now back to taking .375 Pramipexole and 50 mg Pregabalin 2 x /day. with 4-5 hours sleep at night. I can live with that, but my experience is that it won't stay that way. I have concluded it will always be an endless effort to manage symptoms and sleep.
I have a sleep specialist at Mayo that has been extremely helpful. My other doctors are not knowledgable and have often suggested mediicines that I know would likely worsen my RLS.

So sorry to hear about your RLS issues. It is a horrible affliction. I've had it very severe for most of my life. I have also tried the whole phalanx of medications over the years. Some worked well, for a while, others did nothing. As of today the only thing that works and keeps me sane is Methadone, 15-20 mg day. With this I have been able to stop all the other drugs I've used in the past, and that no longer work for me. For me Methadone has been a miracle that allows me to have a mostly normal life other than dealing with opiod induced constipation.