Please help, I don't know what to do. Stopped requip and 10 days later still can't sleep

[rikku9]

I had been taking Requip/Ropinerole for about 5 years and was up to 2mg every night but I was experiencing horrible augmentation and side effects (anxiety, depression, anger, tired all the time, compulsive behavior, memory loss, etc). So I went down from 2 mg to 1 mg for 4 nights and then from 1 mg to .5 mg and then completely stopped taking requip Wednesday May 4, so it's been about 10 days now. In those 10 days I haven't gotten much sleep if any at all. I no longer have the daytime augmentation and the violent thrashing symptoms I had the first few days are not quite as bad now, but I'm still not able to get any sleep really at all.

I'm starting to lose it and don't know what to do, am I going to get better or is this my new baseline?

I was lucky enough to be able to book an emergency appointment with a sleep specialist who gave me Tramadol to help me through this but even taking 100 mg of it doesn't alleviate the symptoms much. I'm lucky if I get 20 minutes of sleep at a time even on that.

Is this normal? Am I just going through a really bad withdrawal? From what I've read for most people they start to get better after 5-10 days, I'm already at day 10 and there's no improvement in my sleep.

I'm really starting to get desperate and my doctor didn't have much of a solution except to try to get me onto Gabapentin. I'm wary of any drug now after what I went through with requip. I honestly wanted to try to see what my baseline is without any drugs for a while, but I can't believe this is it

Please help, if you've stopped taking requip, please tell me how long it took for you to be able to get some sleep and how did you know that you were getting better?

[Polar Bear]

I have no experience of coming off Requip (which I've been on for 10 years).

It is very variable as to when people start to feel better, you are at day 10.... and although there is no improvement in your sleep you no longer have the daytime augmentation--- which is some positive improvement.
However, Tramadol 100mg doesn't sound (to me) sufficient to treat withdrawal.
You have done really well to get to 10 days, please don't give up now.
For what it's worth I don't believe you are at your baseline at day 10 but you are on your way to baseline.

Others will be along who have experience of coming off a DA and their experience.

Well done so far.

[rikku9]

Thank you. That helps a lot and it gives me hope that you don't believe I'm at baseline yet. I don't want to believe it either since my symptoms were manageable without any meds at all before I started on the Requip but 10 days off the drug and so little progress is really taking a toll on me, I haven't had a good night's sleep and it's looking hopeless for me right now. My doctor reasssured me that withdrawal normally takes 10 days and not much longer, but the logical part of me realizes that everyone is different. I just don't know why I'm not seeing much improvement in such a long time, maybe I was on the requip too long after augmentation started

I tried to call my doctor on friday to ask for an alternative to Tramadol but he was out of the office and the doctor whom I talked to didn't have any other alternative except for starting on Gabapentin. What do people usually take to help with the withdrawal?

[badnights]

Strong opioids are the only thing that can touch a DA withdrawal. This simple fact is, for some reason, obscured from most doctors. If a non-opioid med was required, it would be a much better known fact by now. Instead, people are left in the cruelest states of suffering, as you're in.

I feel really badly for you, 10 days is more of an average than a norm, so you could have quite a bit longer to go. I doubt you're at baseline yet. Granted, there could have been a long-term worsening of your baseline, based on personal experiences here (me, Ann,) but it shouldn't be too extreme and you're nowhere near being able to say that's what happened yet.

If you can fire some literature at your doctor in support of the strong opioids -- - two examples are in the post linked to from my signature line (below): Clincial_Mgmt_Augmentation_Treatment.pdf is an extract from a book on RLS/WED (book info is on the last page) (See especially the red box), and
Buchfuhrer 2012 _GOOD _Strategies for the Treatment of RLS.pdf is a paper published by one of the book's author's.
If you can print these and get them to your doctor, that might work.

[rikku9]

Thank you so much, that last article you mentioned is perfect, I didn't realize that withdrawal could actually last that long. My doctor and everyone online seems to mention 10 days as being the magic number, I haven't heard anyone say it can last longer so that gives me hope.

I am going to email my doctor this article and I really hope my doctor is reasonable and prescribes me something that will actually help me through this, otherwise I don't know what to do. I can't survive another few days let alone another few weeks like this.

It is really reassuring to know that I most likely am still withdrawing and that it can in fact take this long. Thank you. I will take that to heart and this is an encouragement for me to keep on going. Right now I need all the hope I can get to keep this going. This is truly hell on earth and no one seems to understand. Knowing that there is still hope and that it will get better if I persevere gives me strength to keep going

[Polar Bear]

Please know that badnights really knows what she is talking about.
I hope your doctor has compassion and will take note of the advice in the documentation and provide you with adequate medication support.

[stjohnh]

My experience coming off augmentation from mirapex is that gabapentin and tramadol help minimally. If you want to stay off requip and other DAs, you will need stronger narcotics or suffer through the torture you are experiencing. Likely after finishing withdrawal, your only effective choices are going to be stronger opiods. While SOP for many RLS docs is never use a DA again if a patient has augmented, there are several people on this board that have so, and there is research report from Germany describing successful switching between the long acting DAs for people that have augmented. I augmented on mirapex, withdrew (with the help of kratom and Vicodin) and subsequently used Neupro for a month, then gone back on mirapex at a much lower dose. Doesn't seem like gabapentin is effective very often in people that have augmented.

[badnights]

research report from Germany describing successful switching between the long acting DAs for people that have augmented

I was intrigued by this at first, but on reading the report, I recoiled, mentally. The three subjects were switched to a different DA whenever they augmented. For two of the patients, the period between starting a new DA and experiencing severe augmentation was from 2 to 10 months. The third patient was relatively stable (one dose increase due to worsening symptoms) for almost 3 years before experiencing severe augmentation.

The good news is that the patients experienced rapid relief from symptoms after each switch to a different DA, but the bad news is that they also experienced severe augmentation before each switch. Even worse, during the so-called stable periods between major medication changes, more often than not, dose increases were required, which means the patients were dealing with gradually worsening symptoms for a lot of the time.

So I wouldn't say that these people were experiencing a good quality of life. Their treatment basically caused them to endure augmentation every few months. The worst case is this one: the patient was experiencing severe WED and not using medication when he/she came in, got 2 months of relief on rotigotine before severe augmentation, got 4 months on pramipexole (with symptoms increasing, so there was one dose increase) before severe augmentation, got 5 months on ropinirole (again with increasing symptoms that required a dose increase partway through) before severe augmentation, and was put back on rotigotine. The poor person augmented severely three times in less than a year.

[stjohnh]

....

The good news is that the patients experienced rapid relief from symptoms after each switch to a different DA, but the bad news is that they also experienced severe augmentation before each switch.....

So I wouldn't say that these people were experiencing a good quality of life. ....

Beth makes good points here. My initial plan had been to use mirapex or neupro for a month and then maybe a week or so on kratom to avoid augmentation. My current plan is to continue on low-dose mirapex @ 0.125 milligrams nightly plus kratom and medical marijuana as needed, with the intention have not increasing the mirapex dose, and when jumpy legs are not adequately controlled, stop the mirapex for a week or two until my dopamine receptors have re sensitized, then restart mirapex or neupro. In other words, don't wait for severe augmentation but at the first sign of any augmentation, stop the DA for a spell. I have also been on a ketogenic diet and it clearly helps controlling the jumpy legs, however it is not adequate to control symptoms by itself.

I fully expect to end up on methadone at some point. If I was sure that I could take methadone without significant side effects I might switch sooner rather than later. Problem is, it appears to me that most people with more than mild RLS have significant side effects from their medications, no matter what the medicine is. I'm not sure that many people with more than mild RLS can be said to have a good quality of life. Certainly the RLS and/or treatment causes changes to how a person lives their life.

I do understand that a forum like this attracts people with more severe forms and that those who are taking a medicine and doing wonderfully are not likely to post. But after reading thousands of posts I really don't see very many people who have said take "such and such" and it will be wonderful.

[stjohnh]

.... I can't survive another few days let alone a few weeks. ...
Knowing that there is still hope and that it will get better if I persevere gives me strength to keep going

What may help NOW is ketogenic diet (start today) and (if legal where you are) get some Kratom and medical marijuana. Also you could ask a friend for some left over Vicodin or similar narcotic to use for a few days until you get help from your doctor. You can probably get kratom by Monday if you are willing to pay for expedited delivery. If you live in California, you can probably get medical marijuana today, though kratom is more effective for many people.

[badnights]

@stjohnh
You're right, there seems to be nothing that works really well for most of the severe WED/RLS cases. I react too strongly, perhaps, to the DAs, because of my experiences with them; I am positive I was permanently worsened by taking DAs, or by the resulting augmentation. But if you kept a jump ahead of it, and stopped before augmentation happened, maybe you could avoid permanent damage or, I should say, long-term changes (and I admit that no one knows if long-term changes really happen).

@rikku9
stjohnh has a great idea, get hold of some kratom. (MM might help a bit but you need something much stronger - kratom would be better).
If you do get something from a friend, pay close attention to your dose, and write down what you take and when.

Hope you're hanging in there.

[rikku9]

Thank you. I'm barely holding on and the doctors are being so unhelpful. They basically told me my only choice is to start on Gabapentin and when I told them I don't want to start on anything yet, I really just want to see what my baseline is first, they tell me ok and basically imply that if I want to do it my way I just have to tough it out. They won't give me anything stronger than Tramadol and I'm at my wit's end. I can't keep doing this but I can't go back to requip either and what's the point of starting something new if I don't even know what my real symptoms are anymore. I'm starting to really lose all hope. I don't even know what to do anymore, I can't live like this much longer but I'm not going back on requip.

@badnights, do you really think that DAs/augmentation can permanently damage you? I'm afraid that might be what's happened to me too. I used to live with my RlS just fine until a 2 week streak of hardly any sleep (which was really rare for me) happened once so I caved in and took Requip. I have no clue now if my body will ever go back to how it was and I'm so afraid that I've permanently damaged it. I mean I can't sleep at all since I stopped requip and it's been 15 days now When did you quit DAs and are you doing better now? I'm at a loss now as to what to do...

[badnights]

rikku there is no evidence of long-term worsening, just anecdotal stuff, meaning a few of think it may have happened to us, but we don't actually know. If it did happen, if it wasn't just a progressive worsening, there's no way for me to know if it was actually permanent, or just longer-term than expected. But I've been on hydromorph contin for years, and since it's a pretty potent opioid and has been treating me fairly effectively, I haven't had much incentive to stop. Now too much time has passed now for me to know if a raised baseline is the result of DA use or natural progression.

Order yourself some kratom, if at all possible. Take all the Tramadol they'll give you - a bit is better than nothing.

I don't know what to say about the gabapentin. It's not likely to help much but it might help a bit. It might just make you groggy which would make the sensori-motor symptoms harder to deal with, but then you would know that after the first try and could simply stop taking it. I do appreciate your desire to not start up with it until you know what your baseline is, and I think it's a valid point.

But you also have to consider just how much torture you're going to endure. Maybe you could pick a date on which you'll re-asses. Meantime, record the severity of your symptoms at various times every day. Pick a simple scale like 0-5. On the set date, check your numbers to see how much you've improved. If it's a clear improvement, consider setting a new date to hang on until. I'm not sure if this is a good idea or not. The best idea is to order kratom.

[ViewsAskew]

In terms of the permanent worsening, I had a similar situation to Beth. I was augmented for a very long time and when I used an opioid to get through the withdrawal of pramipexole, my symptoms really didn't decrease that much. Instead of having it 24/7, I then had it about 18/7 and that took at least a month or two. I can manage several hours after I get up without many symptoms, but they start in within 4-6 hours. I'd say that for the first year, it decreased slowly. Since then, the only thing that seemed to really decrease symptoms was an iron infusion.

I have always wondered what would have happened if I would have done what you are doing and if it would have made a difference. I can say that given what others who have done it your way have said that you MUST give it at least 15-20 days. Sure, some people are better after 5, some at 10, some at 15. But, even Dr. Buchfuhrer advises that some people take 3-4 weeks to really have fewer symptoms.

He also says there is nothing in the literature to suggest a permanent worsening. The doctors look at it this way: RLS can get worse at any time. Aging hormones, and so on are the known reasons, but some people go from few symptoms to daily symptoms without any medication or problems prompting it. They believe that this is what happens to people like us. We want to assign blame to the meds and augmentation, but given how few of us feel that way, it's more likely it just plain happened.

If I were you, I would consider trying what the doc wants you to try. Here's why. If it's going to get better, it will do so while you take the other drug. In a month or so, you can try to decrease it and see what happens. There is no augmentation with gabapentin. The second reason is that if it doesn't work, you might as well find out now - gabapentin doesn't work for all of us. It may not for you. Doctors have to move on to another drug or option is something doesn't work. Third, you're tired and you need some rest! If it works, use it for a short time, then reassess. If it doesn't work, you tried and your doc will feel that you worked with him, which will go a long way to getting him to work with you in the future.

Kratom is another option as Beth suggested. There are many places to get samples without paying a fortune and you can try different types and see how they help. This could help you get through another 2-4 weeks to see if it has changed.

[rikku9]

@badnights and @ViewsAskew

Thank you so much, I don't know what I would do right now without the support and information from this board.

I will look into kratom and maybe just resort to that for now if it works so that I can wait this period out and find my baseline.

I've also wondered if maybe giving up on this and just trying the Gabapentin like the doctor wants me to might be best. It seems the easier way to go now and would hopefull end this misery but at the same time I've read that a lot of times Gabapentin doesn't really help people who've gone through DA augmentation so I don't know if the doctor would even listen to me if I tried Gabapentin and told him it didn't work for me.

If I did start Gabapentin and it worked for me I don't know if I'll be able to go through this again and wean off of Gabapentin to try and find my baseline. I've read that Gabapentin can't just be stopeed, it has to be tapered off and that scares me. At this point though I don't know if finding my baseline is even going to help me, I don't know if it's going to stay this bad (right now no daytime symptoms unless I try to sleep but my RLS when I try to sleep is so bad that it prevents me from sleeping AT ALL).

Again thank you so much, your posts have kept me going and given me hope. No one else really understands what hell this is and I've given up trying to talk to anyone about it. It's so nice to have all of you to turn to