Thank you for letting me join!

[Silvrday]

Hi! Just an introduction. I’m actually here on my husband’s behalf, to try and find ways to help him cope with this fairly new problem that started in about August. He also deals with several other issues and medications for them. I’ll try to be short but please bear with me. He has Atrial Fibrillation, for which he takes Atenolol and he only has events rarely, since we figured out some of the things that trigger it. He has severe degenerative osteoarthritis, for which he takes Celebrex and is in the process of a few joint replacement surgeries; he just had 1 shoulder replaced in September and hopefully the other one will be replaced this Spring and then at least 1 hip somewhere down the road. He has anxiety, for which he takes Clonazepam and Celexa. He also take Mirapex for the RLS. He’s gone up in dose once so far, with doc’s okay. He also takes an aspirin a day because of the A-fib (Atrial Fibrillation). Methocarbomol for back spasms, only takes when absolutely needs it because it started causing stomach issues. He has IBS and was diagnosed with SIBO about a year or two ago, seemingly went into remission for that but does have flare-ups. Benadryl to help him sleep (yep...already knew about that one when he started getting RLS) and he did stop but it didn’t seem to make a difference and when the RLS episodes started up again recently, he caved because he was exhausted and it does seem to help him finally get some sleep. Vitamin and supplement wise, he takes glucosamine, fish oil, CoQ10, D3, B12, C, magnesium. Was taking turmeric but we’ve backed off on that. Celebrex started around June I believe; Celexa and Mirapex started at same time (another story) in Aug. I think I covered everything.
I’ve read about augmentation just yesterday, which is good because he was about to go up in dose again on the Mirapex because the episodes have returned and they are pretty long and exhausting on my poor husband...usually not getting to sleep until 2 or 3 in the morning. I’ve also come across meds that could be contributing to this and I’ve come across the iron levels subject. He has an appointment with a neurologist on the 27th. I also joined a Facebook group pertaining to RLS but I came across this forum and noticed loads of info, which I hope can help or at least make it tolerable for him, whilst dealing with all of his other issues.
Thanks for letting me join this forum!
Silvrday
P.S. Sorry it still ended up being a novel

[stjohnh]

Welcome Silvrday. You will find lots of help here. There are several other members who joined on behalf of their husbands or wives. Your husband's RLS story sounds pretty typical, except for the part about the Benadryl helping.

Can you tell us his age and what the current Mirapex dosing is?

It is sometimes not clear to patients and families that there are actually two separate sets of RLS symptoms, urge-to-move (jumpy legs) and sleep problems. They seem related because in the milder stages of RLS people have trouble sleeping BECAUSE their legs start jumping soon after laying down in bed. However, as the disease progresses and treatment of urge-to-move becomes effective, most people with moderate and severe RLS find they have serious insomnia problems even though the urge-to-move has been treated.

The most consistently effective treatment for RLS insomnia noted by members of this forum is medical marijuana (cannabis, THC). If possible when his urge-to-move is controlled (with iron, opioids, or other meds) try treating insomnia with medical marijuana. Marijuana doesn't help the urge-to-move in most people.

Assuming your husband is augmenting, which he probably is from your description, he will need to get off the Mirapex. This is VERY unpleasant (it can be described as torture without hyperbole). Opioids prescribed by your doctor can help, but it is still an awful experience. But still it must be done.

[Bridgercan]

Hello Silvrday and welcome! You’ve come to the right place for RLS/WED information, support, and community. It’s a great place to be for helping your husband and yourself find your way through this confounding and maddening disease. I was in the throes of augmentation number 2 when I stumbled across rls.org. I would be utterly lost and despondent without the resources and compassion I’ve gotten from forum members and the RLS Foundation. It is no exaggeration to say finding the website and this forum saved my life!

[Silvrday]

Can you tell us his age and what the current Mirapex dosing is?

He's 58 and he's on .25 once a day 2-3 hours before bedtime.

How hard is it to get off the Mirapex if that's what he has to do?

Silvrday

[stjohnh]

...
I’ve read about augmentation just yesterday, which is good because he was about to go up in dose again on the Mirapex because the episodes have returned and they are pretty long and exhausting on my poor husband...usually not getting to sleep until 2 or 3 in the morning. ...

Silvrday, How long has your husband been on the 0.25mg of Mirapex?

Exactly what has happened to make you think he is augmenting?

Can you describe the RLS symptoms a bit more?

I ask because of the possibility of another diagnosis... It is very unusual for a person with RLS to NOT get worse with Benadryl. What dose of Benadryl is he taking and has he increased the dose in the last month or two?

He is at the max or a bit above the currently max recommended dose of Mirapex. Avoid going higher.

Withdrawal from dopamine agonist (Mirapex, etc) augmentation usually goes like this:
1-2 nights of NO sleep and severe urge-to-move, I mean not even 5 minutes sleep, definitely worse than anything he has ever experienced before. Most people walk around all night in this phase. Then 1-2 nights of 5-30 minutes sleep. Then slow increase in sleep and decrease in urge to move over a week or so.

It is about the 4-6 day time that people might give up and restart the Mirapex. They are so frazzled, tired, and miserable they feel they just can't take it any more. If a person makes it to 7 days off Mirapex, they are usually successful.

[Silvrday]

...
I’ve read about augmentation just yesterday, which is good because he was about to go up in dose again on the Mirapex because the episodes have returned and they are pretty long and exhausting on my poor husband...usually not getting to sleep until 2 or 3 in the morning. ...

Silvrday, How long has your husband been on the 0.25mg of Mirapex?

Exactly what has happened to make you think he is augmenting?

Can you describe the RLS symptoms a bit more?

I ask because of the possibility of another diagnosis... It is very unusual for a person with RLS to NOT get worse with Benadryl. What dose of Benadryl is he taking and has he increased the dose in the last month or two?

He is at the max or a bit above the currently max recommended dose of Mirapex. Avoid going higher.

Withdrawal from dopamine agonist (Mirapex, etc) augmentation usually goes like this:
1-2 nights of NO sleep and severe urge-to-move, I mean not even 5 minutes sleep, definitely worse than anything he has ever experienced before. Most people walk around all night in this phase. Then 1-2 nights of 5-30 minutes sleep. Then slow increase in sleep and decrease in urge to move over a week or so.

It is about the 4-6 day time that people might give up and restart the Mirapex. They are so frazzled, tired, and miserable they feel they just can't take it any more. If a person makes it to 7 days off Mirapex, they are usually successful.

He started on .125 mg Mirapex sometime in Aug. He seemed to do great on it. Then he had a shoulder replacement 9/16/19 and did well at first with only a random night here and there of the RLS, which also affects his arms and sometimes even head. The arms part was scary because he wasn't supposed to move his left arm. Then he did have about 2 weeks where it was happening again and his PCP, who admits he doesn't know much about this at all and referred him to a neurologist (which he sees on the 27th), upped his dose to the 0.25 mg he's on now, so that was ~late Sept. He was Did great after that...random episode here or there. Then the past couple of weeks the "heebie jeebies" as we call them started up again. It's almost every night again now and he had a few nights in a row where they were pretty bad and he usually doesn't fall asleep until like 2 or 3 in the morning. About 97% of the time, it's happening just as he's falling asleep with it occasionally happening when he's sitting with his legs up in the recliner, relaxing, watching TV but he's said it's probably because he's tired. I talked to him about it over lunch (I'm at work and was on break) and explained what I've found so he's going to try and tough it out.
As for the Benadryl, when we first started reading up on this back in August, he stopped the Benadryl (and has only restarted recently). He was taking 2 adult Benadryl a night before he quit. He's only taking 1 a night now. When he stopped originally, there wasn't much of a difference but he stayed off of it just in case. Then he caved because he just wanted to get some sleep.
Back at the beginning, before the Mirapex, it was mostly his legs...jittery movements that wouldn't allow him to fully go into sleep mode. Then he would get to the point that his legs would flail, as well as his arms.
Sorry I'm all over the place here because I'm at work...shhhh
Thank you for explaining the withdrawal process. It is much appreciated.

Silvrday

[stjohnh]

Hmmm... when he lays down or sits quietly in the evening does he get an overwhelming urge to move his feet that if he stands up and walks around goes away almost immediately, only to quickly return if he lays down again?

Does he have problems sitting in afternoon and evening movies at the movie theater?

[Polar Bear]

Often we say on here that 'everyone is different' and 'what works for one doesn't always work for another'.

It is understood that coming off a DA (Dopamine Agonist) such as Mirapex is a nightmare, hell on earth. I have read many reports from people of the horrors suffered while weaning off a DA. For more than 15 years I was taking Ropinerole/Requip which is a DA the same as Mirapex. Control of my symptoms was very difficult even with a cocktail of drugs and it became clear that I needed to get off the DA. But I was afraid to go through the withdrawal and just kept taking it for several more years.
With support and encouragement from other members here on the discussion Board, eventually I went for it. It was time to wean off the Ropinerole which was way over the max daily dose... way way over. I could have weaned over a few weeks, at the dose I was taking it wasn't possible to do it quickly. However, I took it to the other extreme. Weaned really slowly.... really slowly. Started in January 2019 and finally came off it in November 2019. I posted at every stage and each time was encouraged and cheered on. At the time I was taking Codeine and later added Lyrica.
And you know what, it was easy, I had no difficulty at all. This was because of my extremely slow taper, little by little by little.
I can't recall anyone else saying that they found it this easy regardless of how they tapered.
I just wanted to make the point that we are all so different.

It may take several attempts at changing/adjusting medications to finally settle on what will work. But it is all on the road to what will work for your husband. One thing's for sure, your husband needs to get off the Mirapex.
St. John is so right, if your husband will prescribe an opioid it will help.

When your husband has had spells of no rls could this have been when he was taking opioid pain relief following surgery.

[Silvrday]

Hmmm... when he lays down or sits quietly in the evening does he get an overwhelming urge to move his feet that if he stands up and walks around goes away almost immediately, only to quickly return if he lays down again?

Does he have problems sitting in afternoon and evening movies at the movie theater?

Because of all of his issues, we haven't been to a movie theater in quite some time. If he's sitting watching TV in the recliner he will occasionally get the urge to move his legs, but it does seem to happen as he's getting sleepy or if he's just exhausted...kind of twitchy like, if that makes sense, but usually not bad enough to actually have to get up and walk around. As far as I know, the only times it was bad enough to get up and walk around, was back in August, when it started and before he was on the Mirapex. Those nights were REALLY bad. The majority of the time, it seems to be when he's laying down trying to fall asleep; it's that moment when you get drowsy and just start going out...that's when it hits him and will just keep waking him up until his brain just gives up and falls asleep but that's not usually until 2 or 3 in the morning. And only once that I know of did he get one or two "twitchy-like" moments while standing, which actually happened like last week.

Silvrday

[stjohnh]

It's not clear to me that he has RLS. He may have RLS plus another problem. I'm glad he will be seeing the neurologist. That may help clarify the issues. It's possible some of these symptoms are from augmentation, though the usual augmentation profile is worsening urge-to-move (still with relief by getting up and walking), symptoms occurring earlier in the day, and symptoms spreading to other areas.

[Bridgercan]

Because of all of his issues, we haven't been to a movie theater in quite some time. If he's sitting watching TV in the recliner he will occasionally get the urge to move his legs, but it does seem to happen as he's getting sleepy or if he's just exhausted...kind of twitchy like, if that makes sense, but usually not bad enough to actually have to get up and walk around. As far as I know, the only times it was bad enough to get up and walk around, was back in August, when it started and before he was on the Mirapex. Those nights were REALLY bad. The majority of the time, it seems to be when he's laying down trying to fall asleep; it's that moment when you get drowsy and just start going out...that's when it hits him and will just keep waking him up until his brain just gives up and falls asleep but that's not usually until 2 or 3 in the morning. And only once that I know of did he get one or two "twitchy-like" moments while standing, which actually happened like last week.

Silvrday

Wow—you perfectly described my typical presentation of symptoms!

As stjohn mentioned, it’s good you’re going to see a neurologist. In addition to the classic urge-to-move symptoms, for a number of RLS people there is a circadian aspect to the disease, where symptoms occur in the evening or in bed as one drifts off but then they fade late in the night toward morning. One of the hallmarks of augmentation is presentation of symptoms earlier in the day and/or increased severity of symptoms.

[Silvrday]

[quote="Polar
When your husband has had spells of no rls could this have been when he was taking opioid pain relief following surgery.[/quote]

He was only on opioid pain killers for about a week. Although I just looked up the doctor messages from when we asked about upping the Mirapex the first time and our PCP consulted with their pharmacist about dose change who wrote him back saying that it could have something to do with coming off the Dilaudid but still okayed the dose change for the Mirapex. I just can’t for the life of me remember if he had ANY RLS episodes while still taking the pain killers. It was a very exhausting time either way due to waking him up on purpose to get his meds in him round the clock, after the surgery. And he got off the Dilaudid as soon as he could because it made him nauseous, dizzy, groggy, etc but mostly the dizziness and nausea was hell for him. They originally tried OxyContin for pain in the hospital and it didn’t even touch the pain so they changed him to Dilaudid but made him sick. He also absolutely hates the idea of going on opioids again due to family history.
Thanks for the insight there though...didn’t even think of that.

Silvrday

[Silvrday]

Wow—you perfectly described my typical presentation of symptoms!

As stjohn mentioned, it’s good you’re going to see a neurologist. In addition to the classic urge-to-move symptoms, for a number of RLS people there is a circadian aspect to the disease, where symptoms occur in the evening or in bed as one drifts off but then they fade late in the night toward morning. One of the hallmarks of augmentation is presentation of symptoms earlier in the day and/or increased severity of symptoms.

There’s definitely been an increase in episodes but severity I’m not sure of, although last night sucked big time. He was pretty much doing it all night...probably finally started sleeping around 5 am. Granted we went to bed late last night because we were watching the Pats vs. Titans and that didn’t go well either

Silvrday

[Bridgercan]

Forget to mention another indicator of augmentation: symptoms occurring in new parts of the body; for example, symptoms used to happen only in the legs, now they’d occurring in the arms or torso.

[Bridgercan]

They originally tried OxyContin for pain in the hospital and it didn’t even touch the pain so they changed him to Dilaudid but made him sick. He also absolutely hates the idea of going on opioids again due to family history.
Thanks for the insight there though...didn’t even think of that.

Silvrday

Having had some experience myself and my parents with especially negative reactions (nausea, dizziness, constipation, nightmares) to post-surgical heavy duty opioids such as morphine and Dilaudid, it doesn’t surprise me your husband hates the idea of them. From your research you are probably discovering there are a variety of opioids that are efficacious to one degree or another for their RLS symptoms. The hard part is finding the one that works the most with the fewest side effects.

Sorry to hear about the rough night and the outcome of the game!