Free of Dopamine Agonist But ... - Restless Legs Syn...

Restless Legs Syndrome

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Free of Dopamine Agonist But ...

RiversW profile image
43 Replies

Today, with the help of Buprenorphine, I am about 6 weeks free of Neupro. It is no exaggeration to say that I have not slept consistently this well for 30 years. It is absolutely a miracle. I could not be more thankful for the help I have received here that has gotten me to this place. However, there are some side effects that I would like to mention with the hope that someone here might be able to offer some insight.

I have noticed a steady decline in my mental health since starting the Buprenorphine and that's saying a lot considering the state I have found myself after struggling with RLS for so many years. It's difficult to articulate but for the first time through all of this I might describe myself as depressed. Despite my improved sleep, I am experiencing an total lack of joy in my life. An inability to relate to others or any desire to. I feel most comfortable when I am alone. Not exactly sure what to do. I am seeing a therapist. The second one actually. I am in Brasil and the first one struggled with English and I don't speak Portuguese well enough to describe the color of a flower. Speaking with the new therapist helps but not for very long. I am reluctant to start a RLS safe anti-depressant. No more drugs please if at all possible. But perhaps I should try.

Another side effect, insomnia. Not severe, but enough to keep me up too late a couple of times a week. I definitely need to stop binging on TV, but there are some outstanding series streaming now and they do offer me a bit of respite from this gloom.

The last side effect serious enough to mention is more delicate, at least for me. My sex life with my wife has always been pretty great. Even during the worst of my RLS. Unless of course I couldn't stay awake for lack of sleep. Since I started the Buprenorphine, I have a complete lack of interest in sex. This makes me very sad I'm afraid.

After reading so many post here describing the continued suffering of so many members here, I realize I am in many ways lucky to have found relief from RLS. Nonetheless, if possible, I want to continue to improve the quality of my life. If anyone has any helpful suggestions or insights, I would very much appreciate hearing them. Thanks.

Rivers

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RiversW
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43 Replies
SueJohnson profile image
SueJohnson

Depression and insomnia are common side effects. Lack on interest in sex is a less common side effect.

There are only 2 antidepressant that are safe for RLS - Wellbutrin (Bupropion, zyban) and trazodone. Joolsg found .25 mg of pregabalin helped insomnia.

RiversW profile image
RiversW in reply to SueJohnson

Thanks SueJohnson, I am already taking 150.mg of Pregabalin. but I appreciate the suggestion. Rivers

ChrisColumbus profile image
ChrisColumbus in reply to RiversW

Sexual dysfunction is listed as an 'uncommon' side effect of some forms of buprenorphine, including patches (which I believe you are using).

RiversW profile image
RiversW

Thank you ChrisColumbus, Yes you are right, I am using the patch. 20mg. Maybe I am just getting old! I hope not. Best, Rivers

ChrisColumbus profile image
ChrisColumbus in reply to RiversW

I don't know whetherJoolsg or any of the other bup users on here might recommend either a different dose patch or a different form... (I've not used an RLS med of any kind so can only pass on what I read, sorry!)

RiversW profile image
RiversW

Thank you ChrisColumbus, presently, in Brasil, Bup is only available with the patch. This works well except when it doesn't which on a 7 day patch is after 4 or 5 days. I will have to wait until I visit the states and my doctor there to see if I might experiment with Bup in sublingual form. Thanks for your response. Rivers

Biscuitface profile image
Biscuitface

I found the patches gave me dreadful anxiety and insomnia . I switched to sublingual tablets after speaking to Dr Buchfuhrer. I also started taking Pregabalin 25mg each evening and find this combination much better. Currently taking Buprenorphine 600 to 800 mcg

RiversW profile image
RiversW

Thank you Biscuitface(oh, the imagery) This is very helpful. Hopefully, I can explore the tablets when I visit the states in May. As I am so accustomed to not sleeping because of RLS, the insomnia is tolerable, but the anxiety/depression is indeed dreadful. Thanks again for you help. Rivers

707twitcher profile image
707twitcher

I felt quite depressed for 6 weeks or so after getting off pramipexole. I tried Bupropion, but it triggered my RLS. My mood seems to have improved a lot since then (I'm 3+ months post DA). So my advice would be to hang in there, and realize that it's hopefully a temporary side effect of DAWS. I would guess the sex drive would mirror overall mood, and improve over time. 🤞

And cannabis helps insomnia if that is an option for you.

RiversW profile image
RiversW in reply to 707twitcher

707Twitcher, I asked Jools this question as well. Do you think I would be wise to stay away from Wellbutrin to help with the depression and just wait until hopefully my moods settle? I know Wellbutrin is RLS friendly, but my understanding is that it is yet another medication that is not so easy to get away from. I understand this maybe an impossible question to answer.

Also cannabis is not an option for me in Brasil. If I am still experiencing insomnia I visit LA in 6 weeks, I can experiment with cannabis then.

Thanks again Rivers

707twitcher profile image
707twitcher in reply to RiversW

I’m a baby - why “tough things out” if you don’t have to. So I’d try the Wellbutrin. I was just surprised that it triggered my RLS. But supposedly not the case for most people.

RiversW profile image
RiversW in reply to 707twitcher

I'm a baby too! thanks

Joolsg profile image
Joolsg

As you have only been off DAs for 6 weeks, you will still be experiencing withdrawal. Your brain was flooded with extra dopamine for years. The pleasure hormone. That's suddenly been taken away.Your dopamine receptors will take up to a year to recover. Give it time.

In the meantime do everything you can to increase dopamine.

I didn't have depression on Buprenorphine but I developed anxiety. Pregabalin sorted that very quickly.

So, look up foods that increase dopamine, dp more exercise in the mornings and it should settle.

Cannabis will help reduce insomnia.

RiversW profile image
RiversW in reply to Joolsg

Thank you Jools, your point is well taken. I appreciate it. Rivers

RiversW profile image
RiversW in reply to Joolsg

Jools, cannabis is not an option for me in Brasil. If I am still experiencing insomnia in 6 weeks when I visit LA for a month, I can experiment with cannabis then. Do you think I would be wise to stay away from Wellbutrin and just wait until hopefully my moods settle? I know Wellbutrin is RLS friendly, but my understanding is that it is yet another medication that is not so easy to get away from. I understand this maybe an impossible question to answer. thanks again Rivers

Joolsg profile image
Joolsg in reply to RiversW

I am sorry I can't give more info on wellbutrin. I have never taken it.But if the depression and insomnia is an issue, you could ask for wellbutrin OR trazodone. Apparently trazodone helps with insomnia as well.

RiversW profile image
RiversW in reply to Joolsg

Thank you Jools. Rivers

SueJohnson profile image
SueJohnson

Most people don’t experience significant withdrawal symptoms when they stop taking Wellbutrin. For those who do, symptoms are typically mild to moderate. And of course withdrawing slowly will probably mitigate them.

RiversW profile image
RiversW in reply to SueJohnson

Thank you so much for that info Sue! Rivers

Typicallygaslit profile image
Typicallygaslit

I experience very severe depression (tearfulness, grief, definitely not my usual state) from Buprenorphine and it has also kept me awake at larger doses. You might like to read my recent article about this and the suggestion that Zopiclone can be helpful. The only other solution for me has been to try and lower the dose as much as possible. It’s now around 300 mcg. I’m lucky that my GP allows me to use Tramadol occasionally and this can settle me if I’m too wound up and RLS is on overdrive as well.

TheDoDahMan profile image
TheDoDahMan

First, I agree with your reluctance to get on an anti-depressant, for the reasons you state. Next, when I finally got prescribed low-dose methadone, my problems sleeping were over, but the depression that lack of sleep had engendered in me took longer to lift. Every month has been better than the previous one, but even after 5 years I may be only 90% back to my old cheerful self. My sex drive is now as good as ever. Best of luck to you!

RiversW profile image
RiversW

I want to thank everyone for writing and sharing their ideas. . I am both comforted and discomfited to know others have gone through what I am experiencing. Comforted because it just helps to not feel so alone with all of this. Discomfited because it breaks my heart to know so many have to deal with all the difficulties that come with RLS. Thanks. Rivers

Simkin profile image
Simkin

Interesting. Firstly simply great you have had 6 weeks of NO RLS of buprenorphine. Me too! It is bliss.Now I have had real depression over the last few weeks which is not like me. I went through a week of just shutting myself away and not wanting to face the world & doing a lot of crying.

But my GP thinks it is due to me having a lot to grieve about at the moment rather than the pills & I think she is probably right.

Anxiety. I am ridiculously anxious now & feel I can hardly drive a car. But I put that down to lockdown & having 2 bad bouts of covid rather than the pills.

As mentioned before to everyone I certainly wake up a lot every night but I just get up & do things & then sleep for an hour in the afternoons.

This won't be an option for you if you still work.

Finally I wish I could find lots of good TV to watch during the night!

RiversW profile image
RiversW in reply to Simkin

Hey Simkin,

Thank you for writing and sharing your thoughts. For me, this is a gift this site gives that has been invaluable to me.

It seems we are going through some of the same stuff. What I find difficult is delineating between what might be chemically induced depression and what is situational. Apart from the Buprenorphine I also am in a situation that could partly be a cause of some of my depression. However, I have been negotiating this situation for a while, long before I started the Buprenorphine and I was not experiencing this kind of decline in my mental state. Perhaps the Buprenorphine just gave me a push in a direction I did not need. I don't know. My reluctant solution is to start on Wellbutrin. I need to try because I really don't like living with this state of mind. Anxious about leaving the apartment, more fearful than usual of social settings and the list goes on. And I am not in this alone. My wife has to live with me through this and I know this is not easy for her. I will stay the course because even with the added depression my quality of life has improved so much since I am not dealing with the effects of a Dopamine Agonist.

And like you I am constantly in search of good television. Recently I discovered Slow Horses on AppleTV and managed to distract myself for a whole week.

Best of luck to you and I know you will find you way to a better place. Take care, Rivers

Simkin profile image
Simkin in reply to RiversW

Thank you Rivers.Finding this forum has changed my life. Before that no-one I met had ever heard of RLS.

Re the comments about your wife .... one day I was feeling particularly sorry for myself when a friend said "think of your husband & what it must be like for him when you keep crying"

Re Slow Horses we don't have Apple but we have been watching "The Dropout" on I Player. True story. Golly gosh. We had to binge watch!

RiversW profile image
RiversW in reply to Simkin

The same for me and holy moly there seem to be so many of us. Now I don't mind so much seeing the blank stares when I try to explain to someone that I have RLS and what that means.

As for me, I never cry in front of my wife, I always lock myself in the closet. However, she does ask why I am locked in the closet all the time.

Take Care, Rivers

SueJohnson profile image
SueJohnson in reply to RiversW

"she asks why you are locked in the closet" My laugh for the day😀although it is not funny for you.

RiversW profile image
RiversW in reply to SueJohnson

And you made my day by laughing! R

RiversW profile image
RiversW in reply to SueJohnson

I really does make me happy if I made you laugh. R

Simkin profile image
Simkin in reply to RiversW

And Rivers, as Sue says, you have made us laugh.The best medicine!

RiversW profile image
RiversW in reply to Simkin

You are right, the best medicine!

AnotherRLScase profile image
AnotherRLScase

If you are going to be in California and are looking to try cannabis, I can recommend a couple of brands of gummies that have worked well for me.

1: ABX: Sleepytime - contains THC & CBN. Haven't used this one in a while, because it is very popular, more expensive and often out of stock. Also doesn't work quite as well for me as the next two. It comes in capsules, tinctures, or as gummies. I prefer the gummies.

2: Froot: MySleep - pretty effective, contains THC & CBN. Usually the one I still use. It isn't as powerful if I'm having a big flareup of symptoms, though.

3: Wyld: Boysenberry - probably the most effective one I've tried, it combines THC, CBD & CBN. I only discovered it recently, but slept like a baby with half a gummy. It was amazing.

I also take 0.5mg ropinirole & iron. Am probably augmenting on the ropinirole, but hate to make changes when everything else is going pretty well. Honestly, I'm chicken about cutting down, but will get there eventually. The gummies, especially the Wyld, seem to keep the augmentation under control.

RiversW profile image
RiversW in reply to AnotherRLScase

Thanks so much for this info. I will be in LA in May and will definitely try to find them. If and when you are ready to ween yourself from the ropinirole, I suggest Buprenorphine if you have access to it. It made my withdrawal not so bumpy and I am sleeping better than I have in 25 years. Of course, it is different for everyone and as I mentioned in this post, I have had side effects to deal with.

Thanks again and good luck, Rivers

AnotherRLScase profile image
AnotherRLScase in reply to RiversW

Thanks, and good luck to you, too!

welschrispy profile image
welschrispy

Hello Rivers,

Congratulations on getting off those dreaded D/A meds. With regards your side effects. Depression is, in my experience, made worse when you are not taking care of something that is important to you. But otherwise I agree with the other replies. You have to give it time. Oh, and remember depression is better than Anxiety and Nausea!

You may also be suffering from PTSD. You have been through a war of sorts. It would be surprising if you didn't. So what's in a name? But naming a condition can help. Anything you can do to limit the many uncertainties.

Regarding your more personal issue. I have had the same problem. It coincided with taking Tramadol. For me also it could be age (75) but of course it isn't! Jokes aside it could be a coincidence but I am going to blame Tramadol! I plan to change to a better opioid if my doctor and various specialists permit. There are of course drugs you can take but then you get the side effects from those. It could also be partly as a result of Daws? I'm almost 3 month past my last Premipexole.

But hey, you start your e mail saying you are so happy you can sleep again. Keep that in mind when the gloom hits. Your logo suggests you may be a musician? If you are then play it! Learn a new song. Post it! There is also a little Zen trick. Try to keep a half smile on your face. Sounds ridiculous I know but it works. ..and even if it doesn't work it gets people wondering what you've been up to!

We are all in this together and I am cheering for you. You have done so incredibly well getting off the DAs. It's flippin' heroic if you ask me, and I have been there so I'm a good one to ask.

Very best wishes coming your way.

RiversW profile image
RiversW in reply to welschrispy

thank you for your encouraging words and wise counsel.. it means a lot to me and I am cheering for you too!

I am afraid if I post a song with me playing it could set you back months!

Take care, Rivers

Simkin profile image
Simkin

Ha! Ha!

SueJohnson profile image
SueJohnson in reply to Simkin

Yep he's trying to make me laugh again .

RiversW profile image
RiversW in reply to SueJohnson

Yes I am!

Simkin profile image
Simkin

I am feeling better already!!!

RiversW profile image
RiversW in reply to Simkin

That really makes me happy. R

Hi - I was really depressed for about 2-3 Months after discontinuing the ropinirole - even though I tapered it off slowly (started to take bup like you). Dopamine works on the pleasure centers of the brain. Thereefore it wasn't surprising at all, but I didn't make the connection for a while. It was withdrawal, as Joolsg wrote. The severe depression went away after a while. Take care!

RiversW profile image
RiversW

Dear Flowers, Thank you for your words of encouragement. Interestingly the depression for me has come in bouts. I can be fine most of the time and then suddenly, I just fall apart. Also, I have noticed, my social anxiety has increased. An anxiety that was present before but is worse now.

I believe and hope that like you said things will improve. Thank you. Rivers

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