I have RLS for which I take Ropinirole, Clonazepam, and Gabapentin. I went into augmentation and my doctor said to take less Ropinirole which I did with some success . I have always had trouble sleeping and I developed insomnia . I was and still am sleep walking , falling, and over eating at night. My restless legs are worse. I had two sleep studies done. I barely slept enough for them to get information. I think my Doctor should be focusing on my RLS instead he's treating my insomnia. Haven't had a good nights sleep in years, but I think if the RLS were under control the insomnia would be easier to manage. To add to this misery I am tapering off clonazepam without the aid of any other drug. Sometimes I feel like I'm going crazy, I have flu like symptoms,I walk around all night because my legs go nuts,My Doctors take this very lightly. Finally I was put on mirtazapine and I has sleep paralysis on it so I was switched to lorazepam which made my legs so bad I was crying and trying not to scream. I went through 12 hours of hell. My doctor said there's nothing else to give me and I need to give this med. a chance by taking it for 5 straight days. I haven't done this I haven't done this and I won't ,but I don't know what else to do. I am hoping some of you can give me your opinion I feel like I am in trouble and my doctors aren't taking it seriously. Pam
DESPERATE : I have RLS for which I take... - Restless Legs Syn...
DESPERATE
Hello. I am very sorry to hear this! Your feeling that you describe is beyond-awful! What I’m about to suggest might seem all too simple (and plus, you might’ve already done this), but I think it might help.
I would tell your doctor(s) exactly where you are at the moment (physically and mentally). I would actually tell them what you write here.
I was in an awful place a few years back with Augmentation and everything that comes with it. I was beyond desperate. The worst part was not having the words to describe the Hell I was in. Since I seem to express myself better in writing than I do speaking, I wrote everything down and showed it to all those involved in my treatment. I don’t remember everyone’s reaction to what I wrote, but I can tell you that I had never seen a seasoned therapist rendered speechless and cry before that moment.
I hope I have helped somewhat!
Stay strong,
I think that's a very good idea. They only hear parts at a time and I doubt they have the whole picture. The real problem is I have never been to a doctor who really understands what RLS is like and how it takes your life away. Thank you so much. This is exactly what I am looking for. I know there is no cure, but if enough people respond I should have more ideas to work with and it will carry me through. Again, thank you. Pam
You are most welcome, hon! 
I wish you well!
Oh dear Sweetiepye. You have always been a good inspiration for me on this site and I hate to hear you are struggling so severely.
I greatly agree with Sails. If you haven’t already, writing has been a tremendous help to me because my brain moves to fast and I have great struggles trying to explain how I feel. Writing has given me the the time to find the words to best articulate my feelings. It’s a mess and an extra step but it also helps me lighten my load once I get all the crap out on paper.
Also super strict bedtime routines and self care is a big deal. Please take care of your self and keep posting.
Aye aye Captain and thank you.
Pam, this sounds really awful. Have you read the Allaying augmentation paper that quotes Dr Buchfuhrer? I happened to do so earlier today and read yet again that DA’s like ropinirole paradoxically may worsen the RLS, which is far different from when a medicine stops working. I suspect this may be an issue for you, as well as the long term very bad nights, the wear you out anyway!
May I ask you how much ropinirole you are still taking? And what had been your highest dose and for how long? You may have to come off the ropinirole completely and find put the state of your ‘basal’ RLS and than try alternative treatments. The alpha2delta ligands gabapentin and pregabalin are the first alternatives. They generally also help with sleep. If they fail, opioids are an option, but to het them is very dependent on your doctor. Painlillers like codeine and the more often used tramadol (Ultram) may help with reducing the ropinirole to nill, especially with the last bits. And going slowly.
As Sails says, talk to ypur doctor and tell her/him exactly what it is like. Also, bring relevant info. I would suggest this one: sciencedirect.com/science/a.... Towards the end of the paper there is a section about treatment of augmentation, including severe augmentation (from tour story I suspect you would classify).
Final words: trust your gut feelings! If an option doesn’t feel good good, say so, if possible also why. Good luck.
I'm sorry to hear about your distress. I can't really add anything to what Sails and Lotte say.
You have my sympathy., it all seems a bit if a mess. I hope you get sorted out.
Although it's not included as one of the symptoms of RLS insomnia is associated with it, for 3 reasons
1 The RLS symptoms can prevent you from getting to sleep
2 RLS causes hyperarousal which prevents you from staying asleep
3 Dopamine agonists cause restlessness and can prevent you from staying asleep.
It sounds as if you have all 3
I addition, the overeating may be due to the Dopamine agonist which can cause Impulse Control Disorder OR the Gabapentin, which stimulates appetite
You tried to decrease the benzodiazepine, Clonazepam, but your doctor gave you another benzodiazepine, Lorazepam.
One of the tbings you couild do is get as much information as you can about all the treatment options for RLS.
Another is to see if there is some underlying cause e.g. Anaemia, low iron stores (even if no anaemia - needs a ferritin test)m, diabetes or thyriod dysfunction. Do you have any neuropathy?
Are you taking any other medications that might be exacerbating the RLS, e.g. Antidepressants, antihistamines or Antacids?
I misspoke , I am not taking Lorazepam . I was given Quetiapine Fumarate 25 mg tab. This is the one that really sent me round the bend and doctor wants me to do 5/7 days to see how it works. I would never make it. I was taking 2 mg of Ropinirole 3 x a day . I have it down to 2 mg 2x a day. Clonazepam was 1mg take 2 at bedtime I now take 1 at bed time and I will cut that in half next week. In addition to RLS I have A fIB. and SVT, Diabetes, Hypertension, Asthma, Osteoarthritis, and Major Clinical Depression. I am on Insulin, Singular, and Cymbalta. I am trying very hard to reduce the amount of drugs I take. I just got my A1-C down to 7. It was up to 10! So I am having some success but as far as the RLS is concerned I don't feel like I'm getting the support I need. Did I mention the insomnia and turning into a crazy woman? I do appreciate your knowledge and help.
Cymbalta is one of the medications that can make RLS worse!
I was put on both cymbalta and seroquel.
They both sent my rls through the roof, and the cymbalta kept me up for 72 hours.
Thank you for responding. It helps me to know what has happened to other people. It's hard for me to get a handle on these meds and what they can do to you. Thank goodness I didn't stay on Seroquel, a problem avoided I'm sure. I'm thinking about staying where I am on requip for the time being and going off the Cymbalta . Which will take some time and then going back to going off the requip. The thing that disturbs me is how wonderful these doctors think these drugs are. I was told Seroquel was a great drug and nothing for me to worry about. I want to find a doctor I can trust. Pam
Manerva, I was looking for ‘ropinole and gabapentin’ posts to see if some people take both to lower the gabapentin from 200 (I took 300 yesterday-2 at night as I couldn’t sleep and I became more irritable).
You mentioned appetite increase and I’ve been looking up gabapentin side effects for possible crazy appetite cravings leading to a 15-year-old bulimia return. It’s horrible and I feel like I have no control over it and feel listless a lot. My running and workout routine had been forced instead of enjoyed.
I would rather go back to trying an increase in ropinole that didn’t work (lowest dose, didn’t think of increasing before I was put on gabapentin).
Need some help here. Thoughts? I can’t see anything but that the gabapentin has a bad effect on me and may be making the RLS worse too.
Sorry to hear that you’re struggling again, looking back at your post you had just stopped your 100mg Gabapentin 3 weeks ago, as you were doing the restless legs “cure” regime.
I recently tried cutting down my Gabapentin from 200 to 100mg and initially it was fine, then after just over a week later I wasn’t sleeping as well. I wonder if it goes out of your system gradually in the same way that it takes a few weeks to work?
I’m still trying to stick with my rlcure.com diet but when a bizarre craving for disgusting cake or sugar and eating disorder foods attacks like an old newly risen from the grave; it’s disrupting. So I started with 100, then 200 gabapentin and desperate to sleep and not have RLS, took the extra 100 last night. Bad decision. It made me irritable and today I’ll pay for it by being sleepy, fuzzy and likely experience food cravings. After the past year of Keto, fasting and no sugar, juicing to address a cancerous eye tumor (Ocular Melanoma) successfully; its bizarre to find myself thrown back to an eating disorder long forgotten. Gabapentin is probably pharmaceutical hell for me
It is possible to take both a dopamine agonist AND Gabapentin at the same time. I've confirmed that with Dr Buckfuhrer!
Quote
"We often use combination therapy which can include gabapentin and a dopamine drug like pramipexole. The gabapentin should add significant RLS relief when the pramipexole does not fully control them. "
for Pramipexole read Ropinirole.
Gabapentin apparently causes weight gain, I have just read, in 2 to 3% of people.
So any "compulsive eating" may be more driven by the Ropinirole than by the Gabapentin.
It's dopamine agonists that cause Impulse Control Disorder.
I'm not sufficiently knowledgeable about bulimia to say how it's affected by either of these drugs I'm afraid Sorry.
You mjght find some help here
healthunlocked.com/anorexia...
Thanks, Manerva. I listened to Dr. Buckfurher Hour Long Utube this morning. Not only helpful, there’s a Thursday web group live calls at 10 am for RLS sufferers. They also have group meeting in Downey weekly and I’m close by. Nice!
Hi,
sorry to hear of you mujtliple heath issues.
The Diabetes may be contributing to your RLS, but all you can do is your best to keep it under control. I see the A1-C at 7 seems OK
I doubt if your asthma or the meds you take for it are exacerbating your RLS, nor your heart problems and BP.
If you're taking something for depression, your antidepressant may be exacerbating your RLS
The main thing is though, that you appear to be suffering augmentation, and you need to get your doctor on board with this.
I agree with you. I helps to see someone else say it. This particular Doctor doesn't take kindly to my suggestions although he is always polite and kind, however, that really doesn't help my situation. I will write every thing down that I'm experiencing and try to suggest other alternatives to him. He wants to focus on sleep and I need to focus on RLS.
Thank you
'Less ropinirole"? Does that mean you are still on it?
You are augmenting, you have insomnia, you are behaving compulsively - this could all be the ropinirole if you are still taking it. Compulsive behaviour is the red light that says STOP.
Please, change your doctor if you possibly can, and find one you will consider, for example, gabapentin and an opioid.
Yes I am still on ropinirole. I have been on it for 10 years . Yes I think a different doctor is necessary. I am behaving compulsively how can you tell ?
You mentioned food - and I became horribly compulsive (and insomniac) on a dopamine agonist.
It is absolutely awful, as one feels shame and becomes secretive even though it is the drug doing the damage. For me, a lot of money disappeared on compulsive shopping, also in the middle of the night.
DAs can also cause insomnia, adding to the insomnia of RLS - they did with me.
You MUST get off it, and clearly your doctor is ignorant.
So either dump your doctor or inform him/her.
The rule is that if and when compulsive behaviour appears the drug must be stopped.
Why don't doctors read?
Parminter, more on what to do or take for RLS if 200 mg of gabapentin is causing compulsive behavior? I’ve been looking up gabapentin side effects and only see ‘sleep eating’ but I have a return of 15-year-old bulimic compulsion and irritation at night with sudden RLS symptoms when I can’t sleep. What can we take instead of gabapentin? It seems ropinole is not good either?
There's a difference between stimulating appetite and causing water retention which is what Gabapentin does and "compulsive" eating due to an Impulse Control Disorder caused by taking a dopamine agonist. The result may the same, but the process is different.
Gabapentin = appetite up and water retention
Dopamine agonist = compulsive eating (gambling, shopping etc).
I have not heard of gabapentin causing compulsive behaviours, but these drugs are all affecting the brain, and anything can happen. Anti-epileptics are very powerful drugs and the usual list of side-effects is very, very, very long. Not all side-effects are reported, so you could well be correct.
RLS is associated with several other conditions/disorders, so-called 'co-morbidities' (how awful is that!). These include lifelong anxiety, repeated depressive episodes, OCD and ADHD.
So many of us have underlying compulsive behaviours which go hand-in-hand with the RLS. It is all about dopamine, and it should not surprise us. Nevertheless, most of us will feel shame and isolation when faced with these issues.
Ropinirole will be so much worse. It is a dopamine agonist which really messes with the dopamine system.
Normally, SSRIs would be given to help with compulsivity, but we cannot take those........perhaps there are other drugs, but taking another pill to ameliorate the effects of the first is mad.
If you have a good doctor you should discuss this with him/her. Let it all hang out, don't underplay it - it is just awful to see oneself out of control, and be unable to do anything about it.
The only way to be sure is to stop the drug, but what to do then? If you are really distressed, and you are not a candidate for DAs (no-one with known compulsive issues should be) then the only drugs left are the opioids. Will you doctor prescribe an opioid?
Gosh, how much we have to cope with.
Opioids are not an option for me but apparently neither is gabapentin. I will try 100 gabapentin tonight and one ropinole to get away from gabapentin completely.
I will see if my doctor will refer me to the doctor recommended in Downey who seems to have experience with this hard-to-treat RLS. Yes, feeling out of control is awful
Another thing, Sweetiepye - it is my experience that DAs interfere radically with the action of other drugs, so your mirtazapine etc may not be doing their job properly.
With me, DAs blocked/altered/interfered with the action of benzodiazepines, opioids and even BP meds.
This is nasty stuff.
I believe mirtazapine is an anti depressant . I only took one pill and refused to take more. The side effects were horrible also I was on Cymbalta too.
Cymbalta is worse, another monster.
I think saying that you're behaving compulsively is perhaps an overstatement.
Impulse control disorder (ICD) is a side effect of taking a DA for some people. It can manifest in various ways. Compulsive is when you can't seem to stop doing it, even when it's causing you harm.
Some people suffering ICD compulsively gamble to the point of debt, some compulsively shop and bankrupt themselves buying stuff they don't need. Compulsive eating is to the point that you gain a lot of weight.
It isn't impossible that you have ICD, but it is different than simply being awake in the middle of the night feeling peckish. I often do.
I did suggest you might have ICD, but I've no real evidence that you have. Do you think you can't control your eating?
Cymbalta will make RLS much worse. Safe anti depressants are Trazodone and Wellbutrin. I suggest the first thing you do is change your doctor as he clearly knows nothing about RLS or how to treat it. You sound as if you’re in Augmentation and the anti depressant is making it worse.
Most doctors and neurologists know very little about RLS or dopamine agonists and DAWS or that anti histamines and anti depressants and Benadryl make RLS worse.
4mg of Ropinirole is still too high BUT you need to replace the cymbalta first and see how your RLS is after you do that.
Read everything you can about RLS because knowledge really is power. The more you know, the better you can educate the doctors treating you by politely showing them the information and asking them to help you achieve the best treatment.
I know how horrible Augmentation is and I remember how certain meds made mine even worse. Amitriptyline sent my RLS through the roof ( I was taking it for MS nerve pain). I’d rather have severe nerve pain than RLS.
Thank you for the advice, It is like a piece of sanity to hold on too. I feel like I'm in a crazy place and my thinking is compromised . I am determined to get through this but it's rough, and I think it will get worse before it gets better. I am alone through this as husband and family don't get it and consider me a pain in the butt. This web site is my life line. I am so grateful to all of you. Pam
Dear Sweetiepye, It really touched me when you said your family do not understand. This is horrible for you. Unfortunately RLS is a silent demon which tries to destroy those of us who suffer it. But it won't win. Everyone here supports everyone else so when you need to let off steam we are here and we understand. Sending you love and hope
Hi
I agree with the point that Sails has made about you telling your GPs your feelings as it has quite clearly affected you very badly & if they can finally give you further advice it might help a little & at least put a little more pressure on them to help you further
In the meantime please keep positive .I hope a solution is found that you will be eventually be happy with
Try neupro patch and regular Ropinorole at night that’s what I take and no rls
That would make her augmentation worse. If you are suffering augmentation increasing dopamine agonist or adding another, like the patch, is like pouring gasoline on a fire. Have a look at the Pinned post on Augmentation and watch the video by Dr Early on this website.
By experience everyone throws augmentation around like it’s the plague
the action or process of making or becoming greater in size or amount.
I respect this forum but you guys use this word all the time if it comes to acme ration and sanity I’ll take augmentation from personal experience the last three months have been hell since I was told on this forum that I augmented because I was on a 5mg neupro patch and 3 mg Ropinorole at night then I started my desend from dopamine I switched the patch to 4mg Ropinorole ER and 3mg Ropinorole then 2mg Ropinorole ER then zero only 3mg Ropinorole and I tried 1200 gadapentin lyrica and a prescribed sleep aid none worked and I said to my self do I want to live like this for the rest of my life I said to hell with this now I’m back to a normal life I did lower the patch does to 2mg and 3mg Ropinorole at night so people who cares about what we take as long as we have no RLS I’ve had it for 33years I don’t know what
Most people on this forum that talk about augmentation are simply concerned, because they have lived through that hell and the withdrawal phase and the difficult and tedious phase of finding an effective treatment afterwards. I think you have done yourself a favour to at least succeed in reducing the Neupro and ropinirole doses. I hope they last and that you will not be forced or tempted to increase them. Meanwhile, enjoy your current level of control.
I don’t mean to ‘throw it around like the plague’ but Sara has explained that she is augmenting.
I know from bitter experience how horrible Augmentation snd withdrawal from Ropinirole is. I went through it on 2016 and like you found it was horrible when I started to reduce the dose.
If you have managed to stop your RLS by taking both tablets and the patch then that is great. Long may it continue.
Yes but we need to ask more questions before we mention augmentation they might not know if the augmented or not I was at 5mg neupro and 3mg Ropinorole before I was told I augmented I slept great with no rls symptoms I just wanted to try something different and at the end I determined that the best combination of meds was the patch and ropinorole
To Bat3353. If you continue to read the posts here you will see that a piece of advice always given is "if it works for you and you are comfortable with it that's fine". We are all different (another statement that is oft repeated here. No one tries to make you do something you are not happy about!
I can and only refer to myself when I reply or post but some of these people that post here are desperate and I’ve been there that’s why I often don’t see posts recommending patches and I was one of those advocates against it but after trying all of the meds prescribed for RLS if they haven’t tried the patch they should priority one on this forum is a normal life with RLS again I speak for my self
Please don't take offence. You are taking what works for you, it is working and the fact that it is working means you have no augmentation.
A lot of members here have suffered augmentation which can significantly affect your quality of life. They therefore don't wish to see others suffering the same so warn them of the risks of taking DAs.
My view is it's best to simply state an informed opinion about the risks, then it's up to individuals to either heed the risks, or ignore them and carry on taking a DA.
It's their choice and it's also a matter of trial and error, some people can manage to take DAs without a problem.
There's no call for anyone to be forceful in stating their opinion and there should be no need for anyone to be defensive about their choices.
I do not think however that making one line statements to anyone telling them to take a particular drug is particularly helpful and is really up to a doctor.
Apparently, I need to be (defensive about my choices). I’ve essentially been told to be quiet about my experience all because it doesn’t fit with research and with what “the majority” say. What a shame!! Some in this group (not you) have a long way to go in learning how to accept differences. Thanks for your pm btw! I will respond tomorrow.
Round two in trying the bed here I come!
Good luck with bed, don't get into a fight with it.
I won’t 😂
The first time I augmented I was taking 4mg of ropinirole 3 x a day , I asked to have it lowered 3 mg 3x a day, and now I'm at 3mg 3 x a day.It seems once you augment you will keep on doing it as soon as your body gets use to the lower dose. My doctor wanted to raise the dosage. He uses the amount given to Parkinson's patients as his standard so he doesn't think I was or am taking too much. I know he is wrong because of the increase in side effects at a higher dose. This is an insidious drug in my experience.
I think it is crazy to take any of these drugs more than once per day. The drug you take at noon does nothing to help you sleep at night. If your legs are restless during the day, then just get out of your chair and do some walking or running in place or walking quickly in place. While RLS is annoying during the day, what is damaging long term to your brain and sanity is poor sleep quality. Every time you take one of these drugs during the day you decrease its efficacy for nighttime use. I take 1.5mg of ropinirole and 2mg of gabapentin each night about 20 minutes before bedtime and have been doing it for over a year. I also take codeine. I always start at 16mg and over about 8 weeks it grows to 24mg. When that stops working, I quit the codeine for 2 weeks and then start again at 16mg to repeat the cycle. On nights when this does not work perfectly, I get up and run in place for 11 minutes, which is about 2200 steps. Then I can get back to sleep.
I see you say that you take codeine 16 mg or 24 mg.
I assume this is a tablet like paracetamol combined with codeine. Codeine by itself comes in 15, 30 and 60 mg strength. If you are taking codeine along with paracetamol be careful not to overdose with the paracetamol as this drug comes with its own set of problems.
I take the codeine in liquid form, so I have complete flexibility in the dose amounts. There is no paracetamol involved in the formulation.
I have osteoarthritis . I stand and walk as much as I can , but I fall often. What I am able to do every day is different.
Hi I'm going through a similar situation at this very moment with severe insomnia my rls is not too bad but slep is impossible I'm walking about all night watching TVs reading etc etc unless I take zopiclone 7.5mg I don't sleep but the side effects next day re so bad I try not to take gut at 3am and no sleep on the horizon I usually give up and take one and I'm scared of getting addicted. My mental health is suffering. I year ago I went through the same episode as you and I wasn't taken seriously by my doctor and it was only when I told her I was suicidle that that they took me seriously and they started to act differently towards me I told her in no uncertain terms that I felt I was being shunted to one side and after an argument her attitude changed to the better it's not easy but all I'm trying to say is be forceful with your doc. I wish all the best and I sympathise with you good luck
It's not a good idea to watch TV at night, nor use a PC, laptop, tablet, Smartphone etc. The backlit light is telling your pineal gland "it's daytime, wake up"
I do however, sympathise with everything else you say
Yes, desperate is definitely the word. I agree totally with sails and you should follow Sails advice.
Gabapentin and Clonazepam are both treatments for epilepsy and ropinirole is dopamine agonist. Maybe you need short term sleep treatment, for a start. i.e. Lorazepam?
Do you live in the United States? If so try to get a appointment with Dr. Buchfuhurer. He is in Downey Ca. He is helping me. I had the same symptoms you have. Only I am not sleepwalking.
Do you take iron supplement
I started a series of iron infusions last week. One a week for five weeks.
Hi sweetiepye....I also suffer from RLS. It is just awful. I haven't had a good nite solid sleep in a year. I have been taking Ropinarole and it helps get me to sleep, but I wake up to go to the bathroom and that's it. I cannot go back to sleep without my symptoms of RLS. I have found a cure for me, and is Codiene. Codiene is really hard to obtain here in US, I get it from a neighbor of mine. I hope that you can try this. i just take 1 pill at about 11:00 at nite. I take all other meds at 8:30.
May I remind everyone of the forum rules :
healthunlocked.com/rlsuk/po...
"Please can we ask that everyone remembers the following:
If there is conflict or a discussion between a small number of individuals, those affected should do everything they can to keep the disagreement between themselves and to work towards a solution. Very often the solution will simply be that you agree to disagree and do not engage with each other any further. Name-calling is not a solution. Posting your private messages on the forum is not a solution. If you wish to discuss a concern with a specific person, please message them privately and not in a public capacity. To send a message, click on the person’s icon image or their name and it will bring up their profile. Click on ‘send me a message’.
Posts should be of interest to the wider RLS forum rather than just individuals. Posts should never be used to 'have a go' at someone else. I have noticed a few people trying to circumnavigate the 'no names' rule by putting up statements which clearly are directed at particular individuals but which are often poorly disguised as something else. Please, let's stop this.
Please support each other and if someone expresses views you disagree with, please think carefully before you respond. We all have different views - we should all be allowed a voice, to express an opinion in a safe place where we won't be ridiculed. Goodness knows most of us have been ridiculed for years for having this condition so we should do our best to ensure this stops when it comes to the forum. However, we should also be ready to be challenged for what we write without feeling we are being attacked just because someone else has a different view. We are all here because we need the advice and support of other fellow sufferers."
If you look on drugs.com you can see how your drugs interact so if you are taking certain drugs which interact to produce other symptoms then this might be helpful. Each drug you type in may have a list of other drugs or foods which may interact with. AS you have a metabolic disorders with your diabetes, the other illnesses you have may contribute to restless legs. I am type two diabetes, and have benefited from a full panel of bloods to indicate B12 vitamin D and minerals which if deficient can produce restless legs. Muscular weakness is common with diabetes. As you are taking insulin getting your levels right must be a constant problem. Magnesium is a good mineral which can aid restless legs. Even if you have not got any handy eating a banana may relieve the spasms . I know you have to address your augmentation, but it would be worth checking that B12 and iron and ferritin levels are ok. Mental health problems can be associated with low vitamins and minerals. I take two 340 mg magnesium carbonate tablets which helps. I get it under one leg if I sit on a hard edge chair. The artery seems to go into spasm. I lie on the bed lifting my legs so my feet are on the bed and my knees are up. Magnesium is used to prevent heart attacks in some hospitals so think this might help you. The doctors seem to be relying on drugs for mental health problems and have forgotten your metabolic problems so the extra information to see how your general health levels are may be a break through especially the iron, ferrtin and vitamin D. Too high uric acid might be a problem with some drugs or foods. I have to cut down red meat and eat cheese and fish with vegetables, as the uric acid can create restless legs and cramps. If you have diabetic neuropathy the restless legs are likely to be associated with your restless legs. A protein called L Acetyl Carnitine is used for pain recommended by the Mayo Clinic. As you are on so many drugs the effects and interactions may be making you feel awful. As for insomnia this can be due to your symptoms keeping you awake at night, but finding a good sleeping pill and removing other drugs such as quetiapine may help. The yellow card gov website has a drug profile analysis tab with graphs of the drugs that you may be taking such as gabapentin. If these drugs are giving you side effects then they should be removed. Gabapentin is notorious in the UK for side effects.
Out of interest have looked up your ropinirole and found on drugs.com it has a high list of serious side effects affecting the liver and giving rise to hallucinations and psychosis. Have found it has over 259 side effects with interaction with other drugs.
Reviews and information recommend Pramepexole as a safer and effective alternative to Ropinirole.
You can compare the drugs on drugs.com with the ones you are taking and get an interactive response. The other two drugs you mentioned Clonazepam and Gabapentin both have serious side effects cross matched with yellow card MHRA uk gov website. Think you should print off information graphs for your doctor and revise your medication according to your metabolic disorder. If drugs are affecting the liver, this will explain some of your side effects. No need to reply.
5 mg of methadone. Got off everything else. Symptoms are gone. Have not had to increase dose in 3 years. Sleep well now. Prescribed by an RLS specialist when the augmentation specialist couldn't understand the hell.
I had terrible rls . 300 mg of gabapentin would work great for me for 2 or 3 hrs but over a 10 nites would augment to 900 per .
Then I switch to levodopa cardoba for thee nites and that would reset my gabapentin dosage .
When I got a dr to get me iron infusions my rls vaporized in 2 weeks .
Sweetiepye, my heart goes out to you! I hope you can benefit from my experience, and perhaps find something in my story that helps you deal with the physical and psychological torture of RLS.
I suffered with RLS as a child. I couldn't sleep from the "itchies in my leg bones" and would crawl into bed with my parents, hoping to find sleep and comfort. But eventually my kicking and twitching would drive them crazy, and they'd send me back to my bed so that they could get some rest.
I believe that I also had Sleep Apnea since childhood, because I was always physically exhausted and mentally drained, not like a normal young person at all. Having apnea explains a lot of my physical and mental health problems, but wasn't formally diagnosed with CSA or RLS until my early 50's, which is a looong time to go untreated. I'm sure a lot of damage was done.
When I was 50 yrs old, I was referred to a neurologist for symptoms that mimicked early dementia or a brain tumor, and was told that I had RLS and Complex Sleep Apnea. I was essentially sleep deprived, even though it seemed I was always sleeping, or fantasizing about sleeping.
The neurologist had me try a few different meds for the RLS, eventually settling on Ropinerole, but said nothing about rebound / augmentation; when those symptoms started he suggested taking a dose earlier in the day in addition to my nightly dose. Eventually the RLS symptoms were starting around noon and I was always on edge, not knowing if that tingle would morph into another torture session. I decided that I had to do something, because the treatment was making me worse. It was time to do something radical. So under an Internist's supervision, I decided to wean off of Ropinerole. At my request, he prescribed Baclofen (a muscle relaxer) to take as I tapered off the Ropinerole, and to take as needed once the Ropinerole was out of my system. That was 5 months ago, and today I am completely off of both Ropinirole AND Baclofen!
A big part of controlling my RLS without meds is by sticking to my Do Not Do List: no sugar several hours before bedtime, no caffeine after 1 pm, avoid foods with preservatives/ nitrites/ nitrates/ MSG, and ABSOLUTELY NO ALCOHOL, PERIOD.
If I'm under mental stress, I'm extremely aware of my vulnerability to RLS, so I guard my emotional state by avoiding all negativity, disturbing movies, etc. I even refuse to look at the news anymore, and I'm a much calmer person now
Very rarely I'll have the slightest twinge that portends another attack, but that is almost always due to something on my Do Not Do List, or my other nemesis, Anxiety. If it's anxiety, I do some soul searching to address and face what's causing it. I know I'm getting close to the answer if my body starts to crawl; I believe it's from my mind not being able to cope with whatever is lurking in the background, and that state of emotional unrest is causing fight or flight reaction through out my body. I realized that the combination of my emotional anxiety and the physical torture of RLS starts a cycle where each would feed off the other and both would grow stronger, at the expense of my sanity.
People who have never experienced profound RLS simply cannot understand how truly awful it is. There were times that I sat in tubs of ice water, times I hit my legs with a wooden paddle because pain was preferable to the intense crawling sensations. There were also times that contemplated how to end it... that's no place to be, so I feel so grateful to have broken this cycle!!
I know from experience that it won't be easy, but you WILL find your way out of this. God bless you! I will be praying for you!
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Desperate for some relief Moderation team
