New to group.

Whether new to RLS/WED or new to the site, we welcome you and invite you to share your history and experiences with RLS/WED, introduce yourself, and ask questions. Successful treatment starts with a solid understanding of this disease.
Gayle
Posts: 18
Joined: Wed Nov 28, 2018 7:29 am

Re: New to group.

Postby Gayle » Sat Dec 01, 2018 4:21 am

When I have more time, I will try to go back and read some of the members stories. My daughter suggested taking Unison. I took one earlier. So I will see how that goes. My husband is a saint for putting up with me.

Polar Bear
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Location: N. Ireland

Re: New to group.

Postby Polar Bear » Sat Dec 01, 2018 5:32 pm

Do you mean Unisom..... It is an antihistamine. An antihistamine might make you drowsy but it is also likely to annoy your RLS symptoms.

Many people who take the antihistamine diphenhydramine in allergy medications (such as Benadryl) or in sleep aids (such as Unisom or Tylenol PM) don’t realize that it can cause or worsen RLS.
I did a search and found that the majority of them — ZzzQuil, TylenolPM and Unisom SleepGels — contain diphenhydramine as the active ingredient, the same compound in Benadryl.
(Unisom SleepTabs use doxylamine, another antihistamine.)
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

legsbestill
Posts: 522
Joined: Tue Aug 30, 2016 7:22 pm
Location: Dublin Ireland

Re: New to group.

Postby legsbestill » Sat Dec 01, 2018 11:21 pm

Gayle, if you are really desperate it might be worth trying Kratom. It’s not legal everywhere but it can be ordered by post and is usually effective against rls - I find it more effective (and also easier to discontinue) than prescription opioids. Also, cannabis, taken as an edible can be very effective for inducing sleep but anecdotally it is only effective against rls urge-to-move symptoms in a minority of people.

Reducing and discontinuing pramipexole (mirapexin) is really hard and symptoms will most likely be very severe until about 10/14 days after the drug is discontinued. It is a great feeling once you get it fully washed out of your system however. You start to feel more like yourself and symptoms gradually improve. Other treatments, eg the anti-convulsants, are much more likely to succeed if the pramipexole is discontinued. In other words things will get better for you.

It is definitely worth getting your serum ferritin checked and starting an iron supplement if it is below 100.

Gayle
Posts: 18
Joined: Wed Nov 28, 2018 7:29 am

Re: New to group.

Postby Gayle » Sun Dec 02, 2018 12:38 am

Thanks Betty. I did mean Unisom but my spellcheck prefers Unison! I've always had trouble taking cold preparations, pills or capsules because they do wire me and so I stay away from those. I didn't realize those ingredients were also in sleep aides. Last night, I found an old bottle of clonazepam, generic for Klonopin. I took one and several hours later, I was very tired and relaxed. So I did take a Unisom about 2 hours after that. I slept like a log and no leg problems. I had also taken 2 Lyrica around 4 PM. Today, I've felt great but I'm so worried that taking that with good results was a fluke and tonight, I'll go through hell again. I hate thinking about bedtime anymore. And even if I have a good night, I worry about the next night. Thank you for letting me know about what's in the sleep aids because I had no idea. I should become a better label reader. I will definitely watch out for that from now on.

Legsbestill, I may check into the Kratom. The problem is with that is that my kids are all in law enforcement! My daughter and her husband are on the PD here in town and my son is a state trooper. If I ever got caught with it, I don't know what kind of damage that would cause for them! The headlines would definitely be interesting! Because I have a blood protein that can be a precursor to leukemia, I get iron and ferritin checks every 4-6. Last October it was good. I won't get it checked again until February this time. Maybe I could ask for a test this month, just to confirm it's good because when it drops, it drops fast. It's all I can do some days to just get to the next day. I know that it's supposed to get better, but when you're in the midst of the misery, you can't see that far ahead. I feel like I'm assured that there will be help but when I ask for help, I don't get any. I just don't understand why. I've never given any of my doctors any reason to think I'm a drug fiend, but that's exactly what I feel like when I ask, no--beg, for something to help me sleep and make it all stop. And I'm answered with a pat on the back.

badnights
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Re: New to group.

Postby badnights » Sun Dec 02, 2018 3:47 am

Hi Gayle! I'm glad you're posting here, You couldn't have come to a better place.

Clonazepam has some properties that seem to make it effective against WED/RLS symptoms for a minority of people. It would be nice if you're one but it seems to me that the severe and augmented cases don't get off so easily.

Re the Ambien episode: there is not only a problem with memory and strange behavior, but there is another problem you need to be aware of that pertains to any sleeping medication used with RLS/WED: it is going to cause you to stumble around the house like a drunk zombie except this zombie is being tortured by horrifying sensations - UNLESS your WED/RLS symptoms are controlled before you take it. A sleeping med will not control the symptoms. It will put your brain into a half-asleep state, which is exactly what triggers WED symptoms (they come on when you're relaxed, physically and mentally). The WED/RLS urge to move is much stronger than any known sleeping med; there is no magic pill that will knock you out. If your WED is not controlled by some other med first (or for the lucky few, by clonazepam itself) then a sleeping med will take your suffering to whole new level. (I have had that experience with clonazepam, so I am recommend caution).

Although you slept after taking the Unisom, I think you slept despite it, rather than because of it. Diphenhydramine is consistently - in everyone who has WED/RLS and some who don't - a trigger for WED/RLS symptoms. (Kind of kidding but you could say we should be wary of anything that makes "normal" people drowsy!)

Lyrica for RLS: is not always effective, and some of the specialists are making noises that they think it might not work for people who have augmented on a dopamine-type med.

Is kratom illegal where you live? It can be a godsend while withdrawing from dopamine-type meds. If you have taken Ann's advice and been reading, you may know by now that augmentation is a worsening of WED caused by the very medication that was intended to help it. It is caused by any of the dopamine-type meds (the ones typically used for WED are the dopamine agonists pramipexole and ropinirole, and the dopamine precursor levo-carbidopa). As long as you take the med, your symptoms will be worse than it can handle. Most doctors recommend you take more med to cover the worsened symptoms, since they're not familiar with augmentation. If you take more med to cover the worsened symptoms, the symptoms get even worse. And this repeats with every dose increase.

So that's Part 1 of 2. Part 2 is when you stop the dopamine-type med. You go thru a withdrawal phase, which consists of even worse symptoms. It is pretty bad, but it's essential to get thru it so you can rid yourself of the dopamine med, and your body's dopamine receptors can begin the long job of getting back to normal. This is where a short-term prescription for an opioid can be invaluable (or kratom). But with or without an opioid, it's worth it. Your level of symptoms - after the initial withdrawal period, which is only a few days in some people - will go back down, and be better than before you started augmenting or almost. Definitely better than the later parts of augmenting, and definitely way better than the withdrawal. If you don't do it, on the other hand, you can look forward to heavy medication use that is never sufficient, with the attendant lack of life quality.

What is your current dose of pramipexole? At higher doses (3 or 4 or more mg), some doctors say a wean is necessary. Whatever you choose, the wean should be as short as possible because once the torture begins, it is not going to get any better until the med is completely out of your system. No sense prolonging the agony once that point is reached.

I wish you the best of luck but aside from luck you can arm yourself with information, it will help you immensely!
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

stjohnh
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Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: New to group.

Postby stjohnh » Sun Dec 02, 2018 3:10 pm

Assuming you are in Minnesota, kratom is legal there, so you should be able to have it by Tuesday if you order today. I think it is the most effective non-prescription medication available for RLS urge-to-move symptoms. RLS is not on the Minnesota Medical Marijuana list, so you are out of luck there. I think edible cannabis is the most effective non-prescription treatment for RLS sleep problems.

Some of my family have problems keeping an open mind about natural supplements. I tell them the kratom and cannabis I use are "natural supplements" which is true. I just don't tell them the actual names (kratom and cannabis). Far to many people assume the government is correct when it makes its rules and regulations. Governmental regulations are HIGHLY influenced by special interest groups (law enforcement lobby, trial lawyers association, pharmaceutical lobbyists, alcohol manufacturers, etc., etc.) These groups have lots to lose if kratom and marijuana are legal.
Blessings,
Holland

badnights
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Location: Northwest Territories, Canada

Re: New to group.

Postby badnights » Wed Dec 05, 2018 7:05 am

Far too many people assume the government is correct when it makes its rules and regulations. Governmental regulations are HIGHLY influenced by special interest groups (law enforcement lobby, trial lawyers association, pharmaceutical lobbyists, alcohol manufacturers, etc., etc.) These groups have lots to lose if kratom and marijuana are legal
Too true. I used to be one of those people, until I had a reason to check into things for myself (this disease) and learned better.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

Gayle
Posts: 18
Joined: Wed Nov 28, 2018 7:29 am

Re: New to group.

Postby Gayle » Wed Dec 05, 2018 12:45 pm

Thanks ALL for your replies. There's been a few new developments since I last wrote. But I don't have time to write it all! I'll get back to you soon and let you know! Hopefully, later today. Thank you all.

Gayle
Posts: 18
Joined: Wed Nov 28, 2018 7:29 am

Re: New to group.

Postby Gayle » Wed Jan 16, 2019 1:36 pm

I apologize for not returning for so long. I kept thinking this was a FB page and then I couldn't find it by Googling until I checked through many sites.
Then the holidays... Anyway, I have truly been to hell and back with my RLS. There were about 3 days, while coming down off of the Effexor and Mirapex that I thought I would, and did, go crazy. Not one of my doctors would give me anything to get through it. I was angry, sleepless, suicidal, violent, and confused as to why nobody would help me. I finally came to a point of defeat. And all my emotions were dumped into my bucket of abandonment. THEN, I had an appointment with my primary doctor. She start me on a low dose of Wellbutrin and over the weeks, increased to 450 mg in a time released tablet every day. She started me on 75mg of Lyrica daily, 2-3 hours before bedtime. And increased that up to 450 mg each day before bed. Also, I take 1 mg of Klonopin at bedtime. My legs still wake me up with a dull pressure, wanting to move. It's not the sharp, intense, rapid-fire movement that I had experienced before. When this wakes me up, I can take another Klonopin if necessary and I have been getting a full night's sleep for the first time in years. Someone on this blog said Effexor can exacerbate RLS symptoms, and apparently that's what was happening for YEARS. Along with the fact that Mirapex augmented years ago so neither drug was helping me and making the RLS worse. I was so disappointed in my neurologist. He should have known this since the symptoms were getting worse but he just kept increasing the Mirapex, which was making the symptoms totally unbearable. Right now, I'm doing ok. I have to say that the RLS symptoms are 99% better. I'm sorry to ramble on for so long but I wanted to share this with you. Thank you for reading this.

Gayle
Posts: 18
Joined: Wed Nov 28, 2018 7:29 am

Re: New to group.

Postby Gayle » Wed Jan 16, 2019 1:40 pm

I'm looking back at all our comments and I see so many of you were absolutely spot on with your thoughts and words!

Polar Bear
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Re: New to group.

Postby Polar Bear » Wed Jan 16, 2019 3:15 pm

Gayle - forgive me if I have missed it. Are you now completely off your Mirapex?
I applaud you having coped with such bad time and getting to where you are now.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

badnights
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Posts: 5179
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: New to group.

Postby badnights » Thu Jan 17, 2019 8:35 am

Congratulations on making it through that hellish experience. Thank you for returning to tell us of it! You didn't ramble at all. But you're allowed to ramble here if you want to :)
Someone on this blog said Effexor can exacerbate RLS symptoms, and apparently that's what was happening for YEARS. Along with the fact that Mirapex augmented years ago so neither drug was helping me and making the RLS worse. I was so disappointed in my neurologist. He should have known this since the symptoms were getting worse but he just kept increasing the Mirapex, which was making the symptoms totally unbearable.
My heart pains me when I read that. Why is it that so many of us have to learn the bitterly hard way that neurologists don't necessarily know anything about this neurological disease and can oh so easily, oh so carelessly send us into the hell of augmentation? But now you know, and hopefully many others will read your story and learn not to depend blindly on their doctor !

Do you think you will continue on with the Wellbutrin ?
Do you think the Lyrica is helping with your symptoms or just with sleep?\
And the Klonopin/clonazepam - does that cause you next-day sleepiness? It often does because it has a long half-life. Be aware also that it can be worse than an opioid to get off of. I'm not suggesting you get off of it now, but always, know what you're getting into. Do your research. Clonazepam helps some people with symptoms but they;re in a minority. If the symptoms are really bad, the symptoms will force you to move right thru the clonazepam, while your brain is essentially asleep. Un pleasant and unsafe. But you seem to be one of the people it's working for.

All the best - have to sign off quickly cuz my zopiclone suddenly has hit me.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

Gayle
Posts: 18
Joined: Wed Nov 28, 2018 7:29 am

Re: New to group.

Postby Gayle » Fri Jan 18, 2019 10:06 am

Polar Bear wrote:Gayle - forgive me if I have missed it. Are you now completely off your Mirapex?
I applaud you having coped with such bad time and getting to where you are now.



I am completely off the Mirapex. It was hell going through the withdrawals of that and Effexor at the same time. For 3 days I was just crazy. Crying, angry, suicidal, RLS was off the charts... I can't believe there wasn't a homicide at my home. My husband went through it all, too, really. It was horrible.

Gayle
Posts: 18
Joined: Wed Nov 28, 2018 7:29 am

Re: New to group.

Postby Gayle » Fri Jan 18, 2019 10:36 am

badnights wrote:Congratulations on making it through that hellish experience. Thank you for returning to tell us of it! You didn't ramble at all. But you're allowed to ramble here if you want to :)
Someone on this blog said Effexor can exacerbate RLS symptoms, and apparently that's what was happening for YEARS. Along with the fact that Mirapex augmented years ago so neither drug was helping me and making the RLS worse. I was so disappointed in my neurologist. He should have known this since the symptoms were getting worse but he just kept increasing the Mirapex, which was making the symptoms totally unbearable.
My heart pains me when I read that. Why is it that so many of us have to learn the bitterly hard way that neurologists don't necessarily know anything about this neurological disease and can oh so easily, oh so carelessly send us into the hell of augmentation? But now you know, and hopefully many others will read your story and learn not to depend blindly on their doctor !

Do you think you will continue on with the Wellbutrin ?
Do you think the Lyrica is helping with your symptoms or just with sleep?\
And the Klonopin/clonazepam - does that cause you next-day sleepiness? It often does because it has a long half-life. Be aware also that it can be worse than an opioid to get off of. I'm not suggesting you get off of it now, but always, know what you're getting into. Do your research. Clonazepam helps some people with symptoms but they;re in a minority. If the symptoms are really bad, the symptoms will force you to move right thru the clonazepam, while your brain is essentially asleep. Un pleasant and unsafe. But you seem to be one of the people it's working for.

All the best - have to sign off quickly cuz my zopiclone suddenly has hit me.


I absolutely hate the Wellbutrin. It's not a good fit for me at all. I am currently in the process of trying to see a psychiatrist who also specialises in movement disorders so that he/she can prescribe an antidepressant that won't interfere with the Lyrica. The Lyrica has been a tremendous help so I don't want to mess that up! I'll be back later. I started another reply but suddenly, it disappeared! If you see it floating around anywhere, just know that I didn't finish it before it 'POOF'ed away!

Polar Bear
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Re: New to group.

Postby Polar Bear » Fri Jan 18, 2019 6:01 pm

I'm sorry the Wellbruitin is not right for you. A psychiatrist who also specialises in movement disorders sounds qyite a find.
I take citalopram 10mg and have done for many years, it seems to work ok (for me).

I started Lyrica several weeks ago, starting at 75mg x 2 daily and am now up to 150 x 2 daily from today. It does seem to be starting to have a good effect, my symptoms are just not so fierce, and I touch wood as I say this that it is indeed the Lyrica and not a coincidence. However, at the same time I am reducing my ropinerole, down now to 3.5 from 5mg. In a few days I will reduce further to 3mg, I'm holding off until Tuesday as we are going off for the weekend and don't want to perhaps rock the boat.... should this next reduction be the one that is the "step too far".

I'm happy to hear that the Lyrica is working so well for you.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation


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