Sifrol withdrawal, need Help Please. - Restless Legs Syn...

Restless Legs Syndrome

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Sifrol withdrawal, need Help Please.

Dina1234 profile image
31 Replies

Hello all together,

I took my last Sifrol 66 days ago. I didn't go the cold turkey way, I started in November 2020 tapering to dosage of 0.03 Mg. (I started with 0.09mg 3 years ago) I don't have restlesslegs anymore. Since I quit i think I do have DAWS. Not all symptoms but extremely anxiety, panic attacks, strong hartbeat, depression, every day which is not stopping. Since 5 days ago I got a burning pain in my chest. I don't know what to do. I do take B Vitamins, Vitamin D, Magnesium, Iron, folic acid. For sleeping i do have Zopiclon and during the day I do take promathezine.my neurologist gave me Targinact but I'm afraid to take them, because of possibly withdrawal. I desperately need information how long it's gonna take until it gets better ,or any other Information which can help me.

Please forgive my English I'm from Germany.

Thank you!

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Dina1234
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31 Replies
Madlegs1 profile image
Madlegs1

Hi Dina-- sorry for your troubles. Your English is fine-- better than many reared in that language!!

I found this on the internet, which may help.

"Many anti-nausea drugs (trimethobenzamide, prochlorperazine, promethazine, hydroxyzine, meclizine, and metoclopramide) block the dopamine system and thus may worsen RLS [56].25 Aug 2012

ncbi.nlm.nih.gov › pmc

Strategies for the Treatment of Restless Legs Syndrome - NCBI"

You can follow that up, and maybe someone else will come here and offer alternatives for the promethazine.

Daws can take a long time to get over.

The important things to do in your case are to get your serum ferritin checked- it needs to be over 100, otherwise supplement with gentle iron (ferrous bysglicinate) every second night with vitamin C.

Secondly, check triggers-- (like I did with the promethazine). , food, drink , medications etc.

Keeping a diary can be very helpful.

You will get through this episode in your life.

All the best.

Dina1234 profile image
Dina1234 in reply to Madlegs1

Thank you!

Joolsg profile image
Joolsg

Dina,Your English is excellent. It is fantastic that you no longer have RLS but the DAWS symptoms are a problem. I don't see how Targinact will help DAWS. In fact opioids are more likely to increase the depression/anxiety.

You have only been off Sifrol for 66 days but DAWS can take months, over a year ti resolve. A better option might be low dose pregabalin for a short period as it is an anti anxiety med, or occasional diazepam to help with the panic.

I really hope it begins to settle.

Huge congratulations for getting through withdrawal and off those horrible drugs.

Dina1234 profile image
Dina1234 in reply to Joolsg

Thank You!!

Nettles68 profile image
Nettles68

Hi Dina, I am so sorry to hear of your struggles.If it's any comfort I am going through the same/similar.

I dropped my last 1mg ropinirole 48 days ago and I am in a very bad way just as you describe.

GP prescribed small dose of Pregabalin to help with the horrendous anxiety but it made me feel even worse and turned me into a complete mess, so I have just stopped taking it.

Like you I am at a loss.

I am barely sleeping, horrific anxiety and depression, barely able to function, basically I'm a mess.

I take 35mg Oxycontin plus 5mg Shortec a day.

I am no longer frantically pacing like I was but I have distressing creeping crawling, in my lower back, abdomen, right leg and even neck. The muscles either side of my spine go hard like rock and when I lean forward it feels like my flesh is ripping, it's horrendous! I get cramp in the back of my right thigh! I have no idea if this is normal or how long this will carry on for or if it's my new normal...

My GP is contacting neurology to see if I can try temgesic for better sleep and symptom control. Dr Buchfuhrer in the States feels this would be a better option for me.

I am depressed, exhausted and beyond demoralised.

Please know you are not alone in this.

Dina1234 profile image
Dina1234 in reply to Nettles68

Thank you so much for sharing your story. I know really how you feel. Please stay strong!! ❤️❤️❤️

Nettles68 profile image
Nettles68 in reply to Dina1234

And you Dina, you stay strong too! 🤗Starting today I am trying Passion flower extract drops to help with the anxiety and insomnia. If it helps I will report back and let you know. 😊

Dina1234 profile image
Dina1234

Thank you!

Elffindoe profile image
Elffindoe

I'm afraid that there is no treatment for DAWS,except to start the sifrol again.

I wouldn't do that however so the only thing you can do is seek treatment for the symptoms.

The burning pain in the chest is possibly acid reflux due to anxiety. If the promethazine is intended to deal with this then it's not really appropriate as it's not antacid. It's for nausea. It can also make RLS worse as Madlegs says.

A better antacid would be a proton pump inhibitor. Sadly, this can make RLS worse, but see below.

You say you have anxiety and depression, but don't have RLS any more.

One option then could be to take an antidepressant. The most effective of these can make RLS worse, but you have to weigh that up against the anxiety/depression. Which is worst?

Another option is to take gabapentin or pregabalin which can both counteract RLS symptoms and anxiety.

The targinact could also counteract RLS symptoms if caused by antidepressant or antacid.

I don't think there's an easy solution, but I hope this gives you some options for coping with DAWS until it resolves.

Dina1234 profile image
Dina1234 in reply to Elffindoe

Thank you very much for all information!! ❤️

in reply to Dina1234

As a person living in the U.S. your story angers me. Not that we have the best medical care in the world, but it sounds to me like you're not getting the proper medical care. First off, always remember you're in the healing process, which is very slow. You don't have a disease, your body is frantically trying to return to homeostasis or equilibrium. It sounds like your symptoms of RLS are at bay, but the DAs have left your mind and body with a medical term called "generalized anxiety disorder" or GAD for short. The doctor best suited to treat things like anxiety, panic, depression and insomnia is a psychiatrist.

Even though this is all a result of the DAs trust me on this one, if you can find a good and kind psychiatrist they will know what to prescribe for these temporary conditions. I'm not a doctor I just think I'm one. I don't like Zoplicone unless you have a true sleep disorder such as fibromyalgia. I prefer treating the anxiety - the true cause of your insomnia - with a low dose of trazodone and/or Clonazepam. The lowest dose for Trazodone is 50mg, but can be cut in half. Even at 25mg it is ridiculously sedating and calming and is an old drug with a good safety profile and was originally developed to be an anti-depressant. For the panic attacks the psychiatrist should prescribe a benzodiazapine, with Clonazepam being preferable. Once again, the lowest dose is .5 mg which can be cut in half as well. We're talking micro-doses here, yet they will be so helpful until the pendulum swings the other way for you.

I always have a bottle of Clonazepam in the house and have never taken more than .5 mg. I have a wonderful shrink, everyone should. It's nothing to be ashamed of. Life is hard, really hard, for just about everyone. I read a story in the paper many years ago about a passenger who was having a panic attack on the plane and possibly some related cardiac issues. Fortunately there was a doctor on the plane. He told the flight attendant to see if any one on the plane had any valium. The flight attendant asked over the loud speaker if any one had any valium and over half of the passengers raised their hands. I rest my case.

You should also see a cardiologist, not just a GP. Your blood pressure might be slightly elevated because of the anxiety. Then the cardiologist is likely to prescribe a small amount of a beta blocker such as one called Metoprolol. It's a great drug and like all beta blockers it will bring the anxiety down a notch. Not enough to completely treat your GAD, but combined with the other ones it will help get you through. Metoprolol and Trazodone carry little to no risk of addiction or withdrawal. For the most part the same is true for Clonazepam when used at doses of .25 and .50. Clonazepam at .5 is equal to a few ounces of alcohol. What most people don't realize, but doctors do (or should) is that whenever you stop a substance that has either a tendency to raise the vibration of your body (such as stimulants and coffee ) or relaxing substances such as those described above (or alcohol or cigarettes) your body has to recalibrate. So you will feel ill at ease for a while until balance is achieved. Studies have been done showing that people who don't know this fact have far fewer symptoms of withdrawal and when told about it they say things like "oh yeah I guess I did have a little more restlessness when I stopped the trazodone." Muchas suerte!

Dina1234 profile image
Dina1234

Thank you so much for all the information. It's good help knowing that the process is"normal"for my situation. I will try to get some clonazepam. ❤️

in reply to Dina1234

And think about the trazodone. It is one of two anti-depressants (though it really is no longer used for that) that is RLS friendly. It is something you can take every night at the doses I suggest and then stop when you like and probably have little to NO withdrawal symptoms. It's not a "fun" drug. It has no street value. It's sedating in the same way that anti-histamines are, only it is RLS friendly, whereas Benedryl and the like are not. I guess it's possible for someone who takes Benedryl every day and then stops that they too may have withdrawal, but if it's anything more than mild and fleeting it's imagined or simply a return of the symptoms they had prior to it. Sometimes people mistake the return of symptoms for some kind of withdrawal from the drug. I knew a man who had horrible 24/7 panic attacks (except for no physical reason whereas yours is physical) and went on Prozac which was a miracle drug for him. When he chose to stop the Prozac the panic attacks returned after several weeks. He was a brilliant man and knew it had nothing to do with withdrawal, but rather the return of the same old. What I'm trying to say is that I prefer trazodone if you need something daily and then Clonazepam for the panic attacks.

I think alot of people experience panic attacks at some point in their lives and I'm not talking about the lesser "anxiety attacks" that you get before a school exam. I went through a period of panic attacks. I had to. It was my path to becoming a warrior. I have a sensitive soul, too sensitive, too fearful. I can't really call them panic attacks because they were so much worse. I was "taken" when they came. I couldn't speak, it was almost like a death - that once again - had to happen...to me. The .5 Clonazepam barely touched them. The attacks would pass after about an hour, usually by forcing myself to engage in some activity, even as silly as putting eyeliner on, perfectly. Then I would get a slight sense of bliss when they passed. I have a friend who is a depth psychologist and she told me to just try to take a step back and look at myself and the panic attack from a distance...which I did. Plus, I read some interesting articles that took a different perspective on panic attacks and called them "the dark night of the soul" that we as humans must all have. We must all have dark nights of the soul, lest we be boring, shallow, ignorant creatures. The articles I read indicated that these panic attacks aka dark nights of the soul are actually our "spirit guide" in disguise leading us to new heights we never before achieved (spiritually speaking). Well, I bought into this theory, hook, line and sinker. As a panic attack would come on I would ask my spirit guide what lessons are you bringing for me today and I would look around to see if I was missing something. Do you want me to notice that homeless man on the street or the two rabbits playing on the lawn or do you want me to call my mother-in-law. Needless to say my spirit guide left me at that point. I miss them now. All I can do is pass on the wisdom they taught me.

Dina1234 profile image
Dina1234 in reply to

Thank you so much for sharing your story with me❤️❤️❤️❤️❤️

Elffindoe profile image
Elffindoe in reply to Dina1234

Dina, just to remind you that DAWS is a known condition and it is caused by cessation of a dopaminergic agent.

It is not the same as Generalised Anxiety Disorder (GAD) or any other psychiatric condition. However it does have some common features which may be mistaken for GAD.

see these links

sciencedirect.com/science/a...

pubmed.ncbi.nlm.nih.gov/236...

jnnp.bmj.com/content/84/2/130

Given that you have only recently withdrawn from a dopamine agonist, it seems more likely you have DAWS than a functional disorder.

I wonder if you suffered an Impulse Control Disorder (ICD) whilst taking the sifrol. People who have an ICD are more likely to suffer DAWS.

Unbfortunately, the only thing you can really do is to suffer it out and it should resolve, although it is normal for it to last months.

I know that when in situations like yours, your worst fear is often that it will never end. It should end, just hang in there with that thought.

Elffindoe profile image
Elffindoe in reply to

Please note that Dina may be suffering DAWS (Dopamine Agonist Withdrawal Syndrome) which occurs in some people when tapering off a dopamine agonist. It has physiological orgins then. It is not a psychiatric condition.

Although in some respects it may sound like GAD, for example, it isn't.

There is no recognised treatment for this condition, onlt symptomatic relief and time.

The best treatment is to have never started on a dopamine agonist in the first place.

sciencedirect.com/science/a...

pubmed.ncbi.nlm.nih.gov/236...

jnnp.bmj.com/content/84/2/130

in reply to Elffindoe

Are you advising Dina not to see a psychiatrist or cardiologist? Plus, if you wait around to see what the medical field comes up with when they finally get around to doing in-depth research into DAWs there will have been a lot of potentially needless suffering. Plus there’s no money in researching drugs like trazodone for use in withdrawal. When there’s a huge public outcry like there is with opiate withdrawal then you get some serious research. therecoveryvillage.com/opia... I see numerous articles dating back to 1979 with regard to the use of trazodone and withdrawal syndrome, particularly opiate withdrawal.

Birdland profile image
Birdland

I also experienced DAWS after ropinirole withdrawal. Mostly extreme depression. Most difficult part was no one had absolute information on how long it would last. Are you familiar with rTMS? Repetitive Transcranial Magnetic Stimulation. The psychiatrist at my GP’s office suggested it for me. I’ve had 19 out of 36 treatments so far and am starting to feel a lot better. Before this treatment I really thought I would never be able to function normally again. Good luck to you,

in reply to Birdland

A friend’s boyfriend actually did those treatments for his PLMS/RLS. He felt it helped. Gotta Google that now. Gotta understand it’s mode of action.

in reply to

Here’s the most recent article I could find. Sign me up. healthline.com/health/tms-t...

Birdland profile image
Birdland in reply to

Eitheror, I wanted to share something I just learned about rTMS treatment. As I said, the psychiatrist at my GP's office recomended it for me, saying it could help my depression and RLS. He does not do the treatments himself so his knowledge is limited. I thought, ok, great, I'm game to try it. So I had a consultation with the psychiatrist who would give the treatments. I explained to him my issues with depression after coming off ropinirole and also my horrible issues with RLS. I quickly realized he knew nothing about RLS but as long as I would be receiving the treatments I didnt think that was of huge importance. I am so used to knowing more about RLS than 99.9% of doctors so it seemed par for the course. Last week after 14 out of 36 treatments, I told him in frustration that my RLS wasn't getting better. His response was extremely frustrating. He told me that to treat RLS a different part of the brain has to stimulated. So treating depression with rTMS is very different than trearting RLS. The movement center of the brain has to be stimulated to possibly improve PLM/RLS. I didn't mention this to Dina1234 because she/he said their RLS was gone but was suffering with DAWS. At this point I am continuing the current treatment to treat DAWS and not expecting any change in my RLS. But, since this treatment "resets" the brain I am hoping that it may reverse some of the damage that Ropinirole did to my brain, because before I started that devil drug my RLS symptoms were never as bad as they are now. Time will tell.

in reply to Birdland

Yes, I kind of saw that in the articles. It’s really been an evolutionary process for those rendering that treatment. However, I think now, after about 20 years, they have a handle on where to place the band. I’ll give you my usual schpiel regarding RLS. I take one or two capsules of ferrous bisglycinate on an empty stomach about an hour before bed and it rids me of RLS for the night. This works for some, but not others. Please keep us up to date on your treatment.

Birdland profile image
Birdland in reply to

It’s great that you get relief from taking ferrous bisglycinate. I wish it was that easy for me. I get iron infusions regularly and my ferritin is kept above 200. My problem is I started taking ropinirole 16 years ago and augmented so badly I was taking 8mg a night. I fear I might never recover from the damage that drug did to me. I will keep you up to date as my treatment goes forward.

in reply to Birdland

Nah, our receptors are like shrinking violets. A little proper care and they’ll return to baseline or better. It’s almost like magic the way they shrink and grow. Too much food to the point of obesity and they shrink per Pet Scan. Severe calorie restriction (even without weight loss) and they grow. All over the internet are people who are trying to up-regulate their receptors because they down-regulated them via illicit drugs or porn. It cracks me up because they don’t want to stop these practices they just want to get back to that big dopamine rush. Your receptors are growing as we speak. And each and every day you are off the agonists.

Nettles68 profile image
Nettles68 in reply to Birdland

Hi Birdland,I hope you don't mind me butting in here.

I'm so relieved for you that you are beginning to feel a bit better now.

Can you tell me roughly how long it took for the symptoms of DAWS to begin to ease please.

The rTMS information is very interesting.

Birdland profile image
Birdland in reply to Nettles68

Hi Nettles68, No problem butting in. Thank you, I have just started feeling a bit better in the last week. I took my last major dose of robinerole on May 6. I say major dose for a reason. I plan on posting about my med situation in a day or two. But back to the point, I'm assuming the rTMS is helping although I sure can't say I feel anything close to great yet. I'm just a little over half way through the treatment. One day at a time. Check out my response to Eitheror (just about to start typing it) regarding something I learned about the rTMS treatment.

Nettles68 profile image
Nettles68 in reply to Birdland

I really hope you get continued relief and that the rTMS helps.I will look forward to reading the update on your med situation when you post.

As you say Birdland "one day at a time." 🤗

Mum007 profile image
Mum007

I took a very low dose anti nausea drug fro about 3 days (metaclopromide). I have never had so many side effects in my life. Whole body restlessness day and night. I couldn’t keep still. Was agitated. Had tremors in arms and legs which lasted about 6 months. Horrendous! My takes a high dose of magnesium for depression but it has to be the right sort of magnesium. A general magnesium tablet is no good.

Munroist profile image
Munroist

Hi, lots of good advice already. Can I suggest:

1. See a doctor about the chest pain if it doesn't go away. It may indeed be acid reflux related to anxiety as Elffindoe mentions but it might be something else. Even acid reflux is worth sorting out if it doesn't go away. You don't need more things to worry about though.

2. I have found meditation useful in reducing anxiety and coping with difficult challenges. It can help balance some of the problems you are having with some of the great progress you've already made. Anything which reduces your state of anxiety is good and can be part of a virtuous cycle where your body and mind become less dominated by pain or problems

3. Although I personally try to avoid any medication I think it has its place and as Elffindoes suggests pregabalin and gabapentin are good against both anxiety and RLS if nothing else is helping. The key for me is to see it as a transition, and ideally take it for a limited period to help you reduce the anxiety and come to terms with your new situation. I took it for a year and it was beneficial for those reasons.

Best wishes

Elffindoe profile image
Elffindoe in reply to Munroist

Excellent advice!

Dina1234 profile image
Dina1234

I'm so thankful for all compassion and information from all of you. I don't feel alone in this anymore. I'm gonna make it thru this hell. Never ever I'm gonna take any DA in my life again. God bless you all❤️❤️❤️❤️❤️

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