RLS coming off DA and trazadone-sleep issues

Pramipexole (prescription) let's me get some sleep.

Oh Kodi! My heart goes out to you! I couldn't not respond (if you follow my double negative) because your suffering should be acknowledged. I see you are going through a terrible experience. Seven weeks is a long time to have very little sleep.

I wish I could share concrete information with you. I avoided ever taking a dopamine agonist drug bc I thought the risk of augmentation was too terrifying.

Horrible as you are having it now, it is not forever (from everything I've read and what my doctor has told me). Ride it out the best you can.

RLS truly can be treated successfully (thank goodness yours is currently under control) without DA drugs.

My only sort-of similar experience was during the three months wait before my first appointment with an expert RLS neurologist I got a prescription of ambien. At that point I had horrible insomnia (not drug induced---RLS induced) ---I was a mess. Anyway the ambien worked great for 9 nights. On the 10th night, after taking it, I was awake the entire night and most of the next and a good part of the following night. Drugs are tricky.

If there was a perfect pill, that always worked and had no bad side effects, your doctor would already have prescribed it. Looking to medication as an answer might need to be a trial and error approach and taking a bunch of different drugs (hoping one would help) might make things more complicated for you. I understand, however, why you are seeking a solution. Seven weeks of insomnia is a long time.

Is your RLS doctor an expert in treating RLS? Does he/she know how to get your through augmentation?

When my insomnia was at its worst (not taking any drugs), one night I only slept 30 minutes. I was frantic. I went to the ER so I could start on gabapentin and probably came off as a mad-woman. Not sleeping makes anyone desperate. It is torture.

I wish I had information about dopamine righting itself in one's body to give you. I understand "knowing" and having parameters on suffering helps us endure.

If I can find anything out, looking in the medical literature, I'll post again.

Hang in there. Be strong. You are in my prayers.

PLEASE, THOSE OF YOU, READING THIS, WHO HAVE HAD AUGMENTATION, POST YOUR EXPERIENCE ON THIS THREAD, TELL KODI ANYTHING THAT HELPED YOU.

By the way, Pramipexole is a dopamine agonist---rjjb. It is the kind of drug that causes augmentation. People love it--because it works so well--until augmentation hits. Then, people who take it feel what Kodi described. A living hell. Did your doctor explain to you that dopamine agonist drugs cause augmentation? My expert RLS neurologist told me eventually everyone on dopamine agonist drugs will have augmentation. Some get it sooner--some after a long time.

Thank you for the kind words!
Working on a 2nd opinion as the Dr. is a neurologist sleep specialist however wanted me to go back on a DA after a “Holliday”. Hopefully time will heal.

@kodi
After the many RLS medications to curb the augmentation, the neurologist had me go on a "Drug Holiday". My jaw dropped. He didn't presribe anything for me to get over the hump, and wouldn't presribe the next drug, methadone, an opiate for weeks later. We were renting a summer house in Utah, and I recall pacing the floors at night, read, try to get some sleep, pace the floors, eat an apple or drink chicken broth. This went on for weeks. The methadone (which I was against from the beginning, but to find out later on, it is the next course for treatment) wasn't for me, and I was able to see a more understanding neurologist form Banner Medical in Arizona, who talked to me about it. I went in with a more clear head, and used it for about 3-4 months, but the panic attacks were to much, as flying in the air; or in a situation in an elevator, and you cannot get out, an MRI, I know there are other situations.
Mayo's Sleep Specialist has been wonderful, and talked to me about the use of buprenorphine, another opiate, at 1 mg. I cut the 2 mg down to 1/3's and the dosage is at .66. I should add, I have PLMD, another form of RLS, and the big reason why the other drugs never helped. I don't kick my husband at night, I receive good sleep, no more panic attacks. I would ask the neurologist about the buprenorphine. Have dental check-ups, as the subloxene you place under the tongue, can cause tooth decay. I have been on it for two years, and I have not had a tooth decay.
Good Luck!

I need to see a doctor for my RLS. Is a neurologist who I should see first?
And what is “augmentation” mentioned here in comments?

@vetrice yes a Neurologist will help you.
It appears to be genetic in my family and I take medication to ease the absolutely horrible condition that it is.

@vetrice
Hi vertice, The good new is RLS can be effectively and safely treated. The bad news is that most doctors, unfortunately, still believe that dopamine agonist medications are the right treatment. These drugs cause augmentation (a worsening of RLS symptoms PLUS the possibility to other dopamine-related problems--bad problems--horrible problems). Those drugs work wonderfully--so effectively--at first. But, they can lead (my expert RLS doctor says WILL lead) to severe and difficult to treat problems in the future in the form of augmentation. My suggestion is to read about RLS at the RLS Foundation website. https://www.rls.org/diagnosis-treatment? Read about augmentation. Read their entire website. Educate yourself on RLS. I was lucky because I read about augmentation before my appointment with my primary doctor so I refused the Requip she wanted to prescribe. I found a RLS specialist (a neurologist who specializes in RLS treatment) and he has my RLS well-controlled. RLS seems to have a number of variations. Some is genetic. Some isn't. Some, but not all, has to do with iron deficiency specifically in the brain. My doctor tried a few different medications before one worked well for me. The RLS Foundation has a click-on about "finding a doctor." I suggest you be careful about who you see--be sure it is someone well-versed in treating RLS. You do not want to run the risk of augmentation by seeing a doctor who hasn't kept up with the 2025 RLS Treatment Guidelines. There are experts--all over the country. This is not a case of all doctors will treat you equally well. As I said, most still believe dopamine agonist drugs are the right initial treatment. It is worth the effort to find the right doctor. Let us know how things are working for you. It was so wonderful for me when I no longer had RLS waking me and keeping me awake each and every night. I hope you find the same relief.

@missjb I really appreciate the information and will definitely read everything on the RLS foundation website. I suspect mine is probably genetic, as my sister had it also.
Thank you for taking the time to give so much good information!

@missjb Thanks for this. My PCP prescribed Requip/ropinirole when I first developed RLS. I had to increase the dose every once in a while because it would lose its effectiveness. My doctors never mentioned augmentation until I had been on Requip for about 5 years and was up to 5 mg throughout the day. Requip can be very hard to get off of. I have been taking low-dose naltrexone for pain (it really helps me), and read that it could help you wean off Requip. Over the course of a few months, I was able to get the dose down to 3 mg/day and hope to get to the point where I can switch to one of the currently recommended drugs. missjb's advice is really helpful. So many doctors just can't (or don't) keep up with the latest studies/guidelines on RLS.

@mmmerrimac
Hi mmmerriac, I think what is most valuable on this forum is people like you, who shared their personal experiences with augmentation. Hopefully, others will learn from your experience---not be blindsided if/when augmentation hits them.

...As far as doctors' role in the whole unfortunate mess, I think the average primary care doctor just didn't know. Initially, patients came back and were so pleased with how drugs like Requip worked. My (family practice) primary care doctor insisted it was a great drug. The previous RLS Treatment Guidelines (about 2014) listed dopamine agonists as the first line drugs to give for RLS. The updated Guidelines weren't available until 2024 (or 2025).

My guess is it took specialists, who only saw patients with RLS, to put the pieces about augmentation together. I suspect the patient was seen (by generalist doctors) as the reason increased doses were needed and other symptoms appeared. In the physician's mind, it couldn't be the drug (because it worked so well). So, it was something in the patient causing augmentation symptoms.

Also, augmentation can happen at any interval after starting the drug--a short time, or medium length of time, or a long time--so primary care physicians probably didn't notice a pattern (and then certainly didn't blame the drug.)

Yes, information was "out" before 2021 (when I read about augmentation on Dr Early's website--Johns Hopkins) but there was not such a concerted effort to education doctors, in general, as well as warn us patients.

The fact your doctor knew it was augmentation five years after first prescribing for you means the word has gotten out--a positive thing for everyone with RLS.

Although looking at a positive change in medical practice (to a future when no one with be prescribed dopamine agonist drugs for RLS) doesn't help you while you are going through a rough patch right now.

I understand augmentation is not an easy row to hoe.

It's so good the naltrexone helps. (I wonder if others, like our friend kodi, could be helped by this prescription as well). ??? I have no idea what drugs are used for augmentation.

I don't know anything about naltrexone (except I just googled it) but I take subloxone (which is a combination of buprenorphine and naloxone) and both drugs are intended (primary use) for people with drug addiction problems. Naltrexone and naloxone are both opioid agonists--they block opioid receptors. In my case, it's the buprenorphine which is supposed to work on my RLS (not the naloxone). But, isn't it interested that we are both helped (coincidently) by drugs intended for drug addiction treatment? I wonder if naltrexone is commonly given for augmentation. Anyone else been given this prescription? Please, post if you have.

RLS is difficult enough without the addition of augmentation. I contribute to this forum because the more we all know (and can learn from each other) the better we can manage symptoms of RLS (as well as augmentation).

I really think, mmmerrimac, it would be great if you kept us updated on how you are doing--both with the augmentation symptoms and with RLS.