10th day off Mirapex but it was pure hell getting here.

[Cats2]

After 20 years on Mirapex during which time my dosage was quadrupled, a well known sleep researcher informed me that I was going through augmentation and needed to come off of the drug. Unlike other neurologists who sometimes bridge their patients with a less addictive drug during the Mirapex weaning process, mine suggested no bridge. I was just to have an iron infusion, wait that 4-6 weeks and then wean by 1/2 of a .5 mg tablet every three days. I was told it would be horrendous; what I was NOT told were the following things that happened to me when I reduced my dosage to 0:

1. At 72 hours of sleep deprivation I began having blackouts. They were brief. I would sometimes arouse and catch myself before I hit the ground. Other times I was too late. I whacked my head on bathtubs, desks, chairs.....anything in the way of my fall. I had mad my neuro aware of this when it happened on one of the first tapers - he was unconcerned.

2. By 100 hours of sleep deprivation, these blackouts were happening 12 times/day at least. Unable to reach the neuro - he does not have coverage when he's off.

3. Unable to rest or get off my feet at all. Any attempt to sit resulted in immediate sleep but I was reawakened within 15 seconds by a violent return or RLS symptoms.

4. At the end of Day 4 with no Mirapex I had to go to the ER. My blackouts were occurring in rapid succession; I was seriously sleep deprived and required 24 hours monitoring.

5. In the ER the neurologists were a LOT MORE UNDERSTANDING than the sleep specialist. I needed respite from the symptoms and sleep. They gave me morphine which stopped they symptoms.

6. After the morphine I had huge muscle spasms resembling full body seizures in which I shook the bed so hard it rattled. I could not stop them and I had no control over my body. They ran an EKG to make sure my heart was okay. It was, but my pressure started to crash. I was given a light sedative until the spasms stopped. The theory was that the muscles that I had tightened so much trying to relieve the RLS symptoms had gone into spasm since they were now unopposed. I'm not sure I understand this but I am grateful to those attending neurologists who worked so hard together to treat something they had never run into before. The spasms had gone on for several hours.

7. A good night's sleep went a long way to making me feel better and I was sent home the next day.

I'm still fighting the effects of sleep deprivation; I still have blackouts and cannot drive yet, but I will get there I hope. I still occasionally just stare into space totally forgetting what I was doing.

I have to see the sleep specialist one more time. I believe I will fire this "expert". It does no good to be an expert if you don't give a damn about your patients.

[Hidden]

Someone should have given you some morphine pills to take during the time you wean off Mirapex. Sounds like torture what you went through. I do not think you should wean off that fast, I lowen the dose with 1/2 a 0,18 mg Sifrol every third week and I had no problems at all, but we are all very different.

[Cats2 in reply to Hidden]

The neurology residents in the hospital kept asking me what medicine he was using to bridge me through withdrawal and seemed shocked when I told them he wasn't bridging. Fortunately I had a copy of his instructions so I could prove it to them. I had suggested that since the tapers were so difficult a slower taper might be in order, but all that go me was a "nastygram" about following orders. I agree with you... the wean was too fast! I also think that it is not necessary the amount of mg's by which you wean but perhaps the percentage of the decrease. I started at 1.0mg, than cut back to .75mg (25% decrease), then from .75mg to .50 (33% decrease), the .50 to .25 (50% decrease) and each decrease was worse than the previous. I think researchers are looking at the wrong factor.

[Hidden]

Sounds like the worst is behind you Cats. Is RLS your only medical condition? Like that isn't bad enough! I wonder why your sleep doctor had you do an iron infusion?

[Cats2 in reply to Hidden]

My iron transferrin and a few other measurements were at the bottom range of normal - okay for day to day functioning but not conducive to sleep since iron is essential for the transport of dopamine. Other than some subclinical hypothyroidism, it's the only medical condition I have. Oral iron supplements could have accomplished the same thing but they are not well tolerated by most people and take longer to have an effect.

[Hidden in reply to Cats2]

Yes, I believe you are right, iron is essential for dopamine transport. How did you know that? Some people on here have had success with iron gluconate taken on an empty stomach at night. Doesn't appear to be a cure but gives relief. Maybe because it helps transport dopamine through-out the body, at least for that night? I think that is the form that is non-constipating. Others on here swear by magnesium oil rubbed into their legs and body or capsules taken orally. Also some have found relief by giving up sugar, coffee, alcohol, grains and even potatoes? And I'm sure you know that there are many over the counter medications that worsen RLS. The neuro-talk sounds fascinating. Just think, if you pioneer it for RLS, something good will have come out of this devastating experience. Since you tend towards the low side of iron I would try a capsule at night with your doctor's permission. My sister in law gets complete relief from her nightly RLS with the iron but still wakes up every hour due to Fibromyalgia. But at least my brother is off the couch and back in the bedroom. Be well.

[Cats2 in reply to Hidden]

I think I'm supposed to have another iron level measured. I started reading about the whole dopamine cycle when my husband (who is in family practice) mentioned that iron infusions were proving somewhat useful for restless legs. Then it was a matter of finding someone who agreed with that practice. Every once in a while I sit down and look up journal articles on restless legs in the hopes of being able to tie everything together and maybe handle this through diet, etc.

[Hidden in reply to Cats2]

How did you feel the day and night of the infusion?

[Cats2 in reply to Hidden]

Sorry for the delay in replying. It has been a rough weekend. The day of the infusion was okay. Since I have a couple of allergies they gave me a dose of IV prednisone before starting the iron; then a small test dose of iron, waited 15 minutes then did the infusion. I drove home (about on hour) and then worked in the garden. At that point I became very lightheaded and went inside the house to find that my heart rate and blood pressure were elevated. Stayed in the rest of the day and drank plenty of fluids. The following day my torso had a purple rash in some areas - but not painful. Would do it again if it becomes necessary.

[Hidden in reply to Cats2]

Do you take anything for your allergies?

[Cats2 in reply to Hidden]

I carry and allergy pen for the bee and nut allergies. Haven't had to use them yet. I'm extremely cautious and only work outside in the very early am and late afternoon. And I'm one of those awful people who grill the hostess about anything that might contain nuts just so I don't turn blue and collapse in the middle of a dinner party.

[Hidden in reply to Cats2]

You have that extreme nut allergy that everyone is racing to find a cure or treatment for so that it never comes to the epi-pen. Just wanted to make sure you weren't taking antihistamines which are known to make RLS worse. Good luck with neurotraining.

[Cats2 in reply to Hidden]

We're going to start the neurotraining in about 3 months once I'm fully recovered. I'll let you know what happens. I may check with my doctor on the iron pills but in the meantime I'm horking down the leafy greens and red meat.

[nightdancer in reply to Cats2]

how is your RLS now? Do you think the infusions helped you? Glad to know ferritin was at least low, before he gave you infusions. I had 3 1 week apart, was no help, but we tried it so we could say we had tried everything ( me and my neuro)

[Manifestinghealing in reply to nightdancer]

I am new here, and have suffered this extreme withdrawl , with an unconcerned neurologist. I am looking for support and knowledge about severe RLS. Dr. Doesn't understand it's more like having seizure than restless legs. I feel I am being dropped from 20'. Every 20 seconds. I have thyroid cancer and can't keep moving. My lungs are 10% collapsed. I don't know how to live with this. I became allergic to ropinerol then mirapex. Now starting to have symptoms with the neuropsychology. Dr don't seem to know what is going on or concerned at my suffering. I don't even know where to look for help. Does anyone know about this kind of thing or where to look. I am at the end of my rope. Thank you to anyone who replies

[SUMMERBOY]

I am astounded. I think that if I were to be mis-treated like you have been I would have to be restrained from giving the so-called specialist a bruise or two. I hope that your recovery continues. Best wishes.

[Cats2 in reply to SUMMERBOY]

Thank you for your best wishes. I have been making notes in preparation for my last visit with the "specialist" and my husband plans on accompanying me. He went without sleep as well since he has to make sure I was safe. I was surprised when the head of the Neurology Department came to see me before I was discharged. I let him know what my feelings were about the weaning protocol and that some of the consequence could be QUITE serious. There seemed to be some attempt at damage control going on. I just don't want anyone else to be put through this.

[Hidden]

Good grief..!!!! What torture you have been through...! As Swedish has said, you should have been given a strong pain killer like morphine to get you through the withdrawals. No one should be made to just stop or even wean off a dopamine med without help. That sleep so called specialist needs more than you firing him. He needs to be struck off...!!! I hope to god no one else he has on his patient list has gone what you have. Thanks for sharing. Wishing you the best from now on. And find someone who will treat you better. And never ever ever, have a doctor give such a huge dose of a dopamine med again. That doctor also needs a lesson or two on how to deal with RLS.

[Cats2 in reply to Hidden]

Thank you. I am calling a different neurologist who seems well liked by his patients on Tuesday; I still have to see the specialist one last time just to tell him to kiss off. I'm also considering "neurotraining" which I did with a neurologist nearby about 15 years ago. It was first used to treat epilepsy but he used it for RLS but me and it backed off the bothersome hours quite a bit. It is time consuming, but knowing what I know now, I will make the time.

[Hidden in reply to Cats2]

Speaking of neurotraining (gotta look that one up) I wonder if you could train yourself to imagine yourself off balance or even falling while lying down? The reason we get relief from RLS symptoms when we stand up is because our brains immediately release dopamine to spinal cord to stabilize us, decrease muscle tone, and make movement smooth and coordinated. That's the problem with Parkinson's patients, no dopamine, so uncoordinated movement. But people with RLS have plenty of dopamine, just lousy release/transport when sitting or laying, possibly due to lack of iron in brain. This is a guess, but I imagine that the release of dopamine from the brain in order to stabilize you while standing or walking might come from a different part of the brain or via a different transport system than when you're trying to relax. But dopamine is dopamine I guess and as its going down our spinal cords and through our central nervous system when we stand and walk our RLS disappears. I wonder if sitting on a stability ball instead of a chair would allow a person with RLS to sit for greater periods of time because you have to make micro motions to stay stabilized? Might be enough to signal the brain to send some dopamine down? By the same token I wonder if some type of imagery (or maybe a water bed ;)) would trick the brain into releasing dopamine when lying down. Something to think in the wee hours.

[Hidden in reply to Hidden]

On a cruise recently on the nights the sea was vvvv rough and my bunk swayed my rls wete still so could be onto something there about movement x

[Cats2 in reply to Hidden]

I tried riding a stationery bike during the height of my withdrawal. For every 20 minutes of riding, I got roughly 3 minutes of rest. The law of diminishing returns seems to apply.

[Hidden in reply to Cats2]

I guess it depends on how desperate you get. Maybe have your husband rig up a slant board against the wall and see if your RLS disappears while on it. I believe that our brains tend to want our heads even with or above our feet, it's almost instinctual. So like with walking, dopamine may be released in an effort to right us. I know the yogis claim that head stands cause the brain to release all kinds of endorphins, including dopamine. Can't sleep in a head stand though.

Or try an exercise ball, at least while watching tv. Always have the ball kind of soft so that when you sit on it, it becomes slightly concave. When you sit on something convex it is hard on the lower back. The micro-motion it takes to keep you upright on the ball should relieve the RLS not only in your legs but your whole body because it's not the exercising of your legs that's doing the trick but the brain's release of dopamine to help coordinate your movement and keep you balanced on the ball. Just like when you walk. Even if you have RLS in your arms, it goes away while walking. Only you don't want to walk and watch tv. Then try lying down and see how your RLS is after the ball.

Or try restricting grains (including potatoes), tea, coffee, dairy and go easy on the sugar. Low fat would be good too. Especially avoid in evening. Never eat to over-fullness. I say that because it's a trigger for me.

If you tend towards constipation try a purge for just one day, no more than that. I like plain old citrate of magnesium from the drug store. It's a liquid and comes in lime and strawberry flavor. I mention this because I have IBS and my RLS acts up during an IBS attack. Other people on this site have similarly gotten relief by emptying their intestines.

My emergency med is an iron tablet at night during an attack. I read about it on another site years ago now. Don't take with food or magnesium or anything but water. I take an IBS friendly form of iron. One that won't stay in my gut. Or take a regular kind but with vitamin c. I only use iron sporadically so I don't have to worry about overload but other people do.

You're in the army now Cat, fight back.

[Hidden in reply to Hidden]

Hi could you tell me which kind of iron is the IBS friendly one pls? About the slant board do you mean with the head end raised or lowered? How sevete/often do you suffer with RLS and have you used any medications? X

[Hidden in reply to Hidden]

I've had mild RLS since childhood, as well as IBS and allergies. I would always eventually fall asleep and would go years without a peep. With the discovery of new antacids and antihistimines (which I took both of) my RLS slowly became worse. During periomenapause I developed severe reflux and took zantac and benedryl nightly. The RLS became ridiculous. Sleep was impossible. I would have to say that within the first week of the severe RLS I read about the iron so I never needed to take the RLS meds. Never even researched it again. But I certainly would have taken medications if the iron didn't work. After about a year or so I decided to look into the RLS a little more and found out that those H2 blockers cause or make RLS more severe. Goodbye Zantac and Benedry.. Now I'm back to mild, sporadic RLS. I'm at work and can't remember the name of the iron. Plus it varies with what's on sale at my health food store. I know iron oxide is the bad one. I believe iron gluconate is one of them. The iron's that end with "ate" I believe are the good ones. Go to your local health food store and tell the clerk you want a form of iron that will go from your stomach to your bloodstream in a nano-second. Any substance that is already broken down and enters your bloodstream should not constipate you. You never want to be constipated and have RLS, that's a recipe for disaster.

In terms of the slant board it has to pretty much be just that, not legs elevated on bed. You want your brain to sense instability, trouble if you have it, and there's nothing like a slant board to give you that feeling of instability. I would put myself at a 45 degree angle. Picture yourself lying on the floor flat. Now picture a headstand. Your head should be halfway between lying flat and being in a headstand.

If the slant board is going to work, it will work immediately. Just like when you get up to walk. It should be that fast. If it isn't, give it up.

[Hidden in reply to Hidden]

Same with the exercise ball, it should work immediately. If not then what's the point.

[Hidden in reply to Hidden]

Thanks for info very much appreciated x

[Hidden in reply to Hidden]

The iron should work as fast as an aspirin. When I get a headache I take Excedrin. ALWAYS works for me. One day a friend said she had a headache. I offered her an Excedrin. She said that they don't work for her. I thought WTF? This stuff is great for a headache, how can it not work for her? That's how I feel about iron. It's GREAT stuff, yet some people swear it does nothing for them. Seems impossible, yet I have come to accept that it is true. On the other hand, Excedrin is wildly popular, and the manufacturers are gazillionaires. So I think my friend is in the minority. And I think in the majority of cases, the iron will work as well.

[Hidden in reply to Hidden]

I always say whatever someone comes up with if it works for you great ! X

[nightdancer in reply to Hidden]

Iron does not always work immediately, so I het for people to read that and think it will work like an aspirin, because it takes time to get your levels up if you are low. A lot of time for many of us. I could not get my iron/ferritin up with oral supplements after 2 years, so that is why we did infusions. And one always has to mention iron overload. People can't just go get iron and start taking it. Too much can be a real health , as in it can kill you if you do not need it, so all should make sure they get a ferritin level done before running out to buy some. Doctors must be consulted on even iron, which sound harmless, but it isn't, like may over the counter supplements.

[nightdancer in reply to Hidden]

I know this conversation is old, BUT, iron does NOT work for everyone, and it certainly does not work as fast as an aspirin . And, nooooooo Exederin does take care of ALL headaches. One thing this person who is hidden seems to forget, is that we are all individuals, and not all things work for all people. To get relief form iron, you need to take it over time ,and build it up in your system. Yes, I have had infusions done also, and have studied pharmacology.

[Cats2 in reply to Hidden]

I am convinced that we are the infancy of figuring out what causes RLS and what can stop the symptoms. I'm willing to try anything and have decided that the doctor who put me through a fast cold turkey withdrawal just has a particular theory he wants to prove.... his. Doesn't know his &%$ from a hole in the ground about it. I'm going to start trying the different recommendations I've heard on this website. At least those come from people who know what it is like. Thanks to everyone participating here.

[nightdancer in reply to Hidden]

RLS does not go away while I am walking at 3 am or during the day. I have to wave them around, so I hope the neighbors are not watching while I am out on the porch! lol But moving like you are describing does not work for all. Some can move or walk all night and 9 or 10 hrs later, MAYBE it will calm down after a bad attack. Interesting theory, but still a theory, since movement does not work for everyone. IF I am having one of my worst nights, I will be up and down 50 times a night, and as soon as I try and hit the bed again, it is like something wants to throw me out of the bed, and it isn't my teddy bear. Like cats2 said 3 minutes maybe of rest, if you can call it that, and boom! back up I go. Thankfully these nights are few and far between now.

[nightdancer in reply to Cats2]

Too MUCH exercise can raise your core temperature, also making it harder to sleep.

[Hidden in reply to Hidden]

Use great caution when using a stability ball if you have never used one before. They are quite easy to sit upon however getting up can be a huge problem if you don't have good balance/muscle.. Shoes may help with this but know that the ball is very tipsy and unstable..you will wobble and you might even fall. Don't grab onto something unsteady to help yourself up. It is a good idea to try it when someone else is in earshot if you need help getting back up. With that being said, I have no doubt that use of a stability ball would work better than sitting in a hard chair. I love your thoughts about standing up so the dopamine falls down the spine to do it's work.. I'd be interested in knowing other's thoughts on this - from the medical community.. did you ever suggest this? If not, you should.

[nightdancer in reply to Hidden]

Pretty hard to trick the brain into releasing dopamine while laying down. I am most interested in the spinal fluid aspect of this, since it is the transport system. I read several studies about "excitability of spinal fluid" and it could be a cause of RLS. By a stability ball, do you mean the ones you blow up, we call them exercise balls over here in the US. I often sit on mine and bounce a little while watching TV. It helps some on "antsy" evenings".

[Hidden in reply to nightdancer]

Oh my god I so have to go to bed. I read about the excitability of spinal flexors. Here's the latest I found on it:

Iron–dopamine hypothesis.

The improvement in RLS with dopaminergic agonists and the worsening of symptoms with dopaminergic antagonists that cross the blood–brain barrier, combined with the lack of effect of the dopamine antagonist domperidone, which does not cross the blood–brain barrier, suggest an important role for the dopamine neurotransmitter system in the central nervous system in the pathogenesis of RLS. Positron emission tomography and single photon emission computed tomography studies have found a decreased activity of the dopamine D2-receptor in the striatum in RLS, consistent with a role for a subcortical dysfunction of the dopaminergic system in RLS (Turjanski et al 1999; Michaud et al 2002).

Reflex studies suggest that RLS involves increased (rather than the normal decreased) spinal cord excitability with sleep, probably due to impaired subcortical regulation of spinal function (Bara-Jimenez et al 2000; Aksu and Bara-Jimenez 2002). Functional MRI studies showing activation of the thalamus and cerebellum during sensory events (without movements), and of the pons and red nucleus during sensory events that were accompanied by movements in RLS are also consistent with subcortical dysfunction (Bucher et al 1997). The dopaminergic A11 cell group is postulated as being centrally involved as they are the only neurones which provide dopaminergic axons to the spinal cord; lesions of the subcortical A11 dopamine system in rats produces increased startle response and increased locomotion, possibly suggesting the motor restlessness of RLS (Ondo, He, et al 2000).

Iron is an essential cofactor for tyrosine hydoxylase, the rate-limiting enzyme for dopamine synthesis. In animal studies, iron deficiency is associated with hypofunction of dopamine D2 receptors that is corrected by iron replacement (Erikson et al 2003; Burhans et al 2005). The fact that the established secondary causes of RLS share disturbance of iron metabolism as a common feature, that the degree of iron deficiency correlates well with symptoms, and that iron is an effective therapy, at least in iron-deficient patients provide clinical support for the importance of iron deficiency in the pathogenesis of RLS. Further support comes from cerebrospinal fluid analysis of iron indices suggesting brain iron deficiency (Earley et al 2000), and from magnetic resonance imaging (MRI) (Allen et al 2001) and autopsy findings of regional basal ganglia iron deficiency (Connor et al 2004).

Thus, the current hypothesis is that RLS involves a functional disturbance of dopamine neurotransmission in subcortical areas of the brain, provoked by regional iron deficiency or by genetic factors or both, resulting in decreased inhibition of the sensorimotor cortical system and (particularly during sleep) of the spinal system.

***Nightdancer, it seems it's the old "the knee bone is connected to the shin bone"

You have to look up stream of the spine to the subcortical areas of the brain that just aren't able to send the good stuff (dopamine) down wind and calm those hyper-excited spinal flexors and legs. The reason being regional iron deficiency. At least that's the latest theory. And that theory can change on a dime. For whatever it's worth, I agree with the above theory.

[Hidden in reply to Hidden]

I once had an American doctor that considered my treatment plan to consist double dosage of what's recommended for RLS. I decided not to go with his advice thanks to reading up on here and DR. B's website rlshelp.org Now I am sure that I made a right decision at the time. His train of thought was that the pramipexole would improve sleeping for me and totally stop the RLS. More is not always better.

[Hidden in reply to Hidden]

Thats so right.Every time I increased my dose of mirapex I eould be better for a few weeks then rls would return worse than ever the dreaded augmentation had set in but of course I didnt know that then! Only from this site did I learn about that x

[nightdancer in reply to Hidden]

Thankfully many people know about augmentation. Every group I am in, it comes up every day, for sure. The issue is getting really well known.

[Cats2 in reply to Hidden]

I started at .25mg pramipexole 20 years ago. As symptoms worsened, the doctors increased the dosage because the disease was assumed to worsen with age. Then I saw the cold turkey doctor who said it goes away with age. Has anyone ever heard of that happening? Everything I read says it gets worse.

[Hidden in reply to Cats2]

Hi Catz, how did you go on with the 2mg patch any better? Generally RLS is progressive so the doctor again is wrong! My mum was told after the age of 80 it tends to improve a little but we have members over 80 who are still climbing the walls with it x

[Cats2 in reply to Hidden]

Hi - not well at all. I had muscle aches when I started the 1mg patch, but the muscle aches from the 2mg were much worse. Ended up going to bed at 8 both from the discomfort and excessive fatigue and slept 10 hours. Then I spent about an hour trying not to throw up and lost that battle. No fever and no one has it so it's got to be the patch. I took it off and washed the area and now I'm starting to feel a little more human. At this point I think I'll try the 1mg patch again and maybe look for those iron pills I'm hearing about.

I'm disgusted with research from the medical researchers - none of them seem to be able to agree on anything. I know they find differences in hormone levels, etc. in the brains of people with RLS but that doesn't mean that is the cause. The two things may just happen to occur together with no causal relationship.

I'm going to try different things and see what happens. I may check into acupressure; it worked on my knee and had no bad side effects - unlike the knee surgery before it. This website is such a help here; I can see what everyone is trying.

Heck, now that I think about it my father treated his with a manhatten each night and a warm bath and then slept with his legs elevated. At least he didn't have to go through withdrawals.

[Hidden in reply to Cats2]

Hi Catz, sorry no joy with 2mg due to side effects but it sounds as though it settled your rls down if you slept 10 hours! I am sticking with the 1mg and have found taking a tiny dose of painkiller and a pregablin with it is working for me, Think it is true what many say a low dose of 2 or 3 meds often works better than a high dose of one, I have also bought some iron gluconate today so will take that at bedtime as it is supposedly less constipating than the other sorts of iron.

I will try to avoid moving ip to 2mg of Neupro for as long as possible. Good luck , keep in touch ., kim

[Hidden in reply to Hidden]

Sorry it has duplicated for some strange reason!

[Cats2 in reply to Hidden]

I think your plan sounds better. I took off the 2mg patch this morning and have not replaced it. No overwhelming depression today for the first time since I started this whole withdrawal mess. I also bought some iron and manganese to try. Good luck sleeping tonight.

[Hidden in reply to Cats2]

Thanks just off to bed now, hope you sleep well too.Just a tip you may be better starting a new post its getting hard to find stuff you have had such a good response x

[nightdancer in reply to Hidden]

yes, a cocktail of meds and supplements at low doses DO almost always work better than one med at a high dose.

[nightdancer in reply to Cats2]

I have a group where a lot of my members are in their 80's and 90's and their RLS is just as bad as it always was. RLS is progressive, does not get better with age, well documented on that one.

[nightdancer in reply to Cats2]

RLS is progressive and does NOT go away with age.

[qualll]

I am sorry you went through such suffering! Your post was interesting to me as I recently was diagnosed with RLS, mild sleep apnea, and sleep behavior disorder. My energy has increased greatly since starting the c-pap three months ago, but my active legs apparently wake me up many times a night. My sleep doctor gave me Mirapex to try and I filled it but have not starting taking it yet. I had such a awful experience with Gabapentin that I am nervous to try another. I am sixty and this is all new for me, not sure what to do, will continue to read and learn here, thank you so much for posting.

[Kaarina Administrator]

Hi Cats, I could hardly believe what I was reading. You have been through hell. How dreadful for you and so scary. It is a horror story. He should not be allowed to do this to patients. Sounds like he should be struck off. I have a feeling you are not in the UK. Is that correct?

I wish you well at your last appointment with this person. If you have had no dialogue with him since you were sent on your way, he is in for a shock at your final appointment.

You are one brave soul to have endured all that. You have a lot of fight in you and that is so good to read. You will get there. Please do let us know how you go on.

Hugs

Kaarina

[Cats2 in reply to Kaarina]

Thank you and your assumption is correct. We are not in the UK. There seems to be a much better understanding of RLS in the UK and a much kinder approach to Mirapex withdrawal using bridging medications. I wish I had known that when we were in the UK this past spring.

I don't know that I'm brave; you do what you have to do and I will get there. It just seems exceedingly slow. Three years ago I had knee surgery followed by a saddle pulmonary embolism and a major bleed into the knee and my recovery from that was 10 times easier than this. I have made notes for my exit interview with the specialist and you are right, he is in for a shock. I will let you know how things progress.

[Kaarina Administrator in reply to Cats2]

Bless you Cats. You have a very high threshold of pain, that I all I can say. I have had two total knee replacements with no complications each time but loads of pain post op and it took about 9 months each time for me to become friends again with my knee(s). That sounds terrible what you suffered post knee surgery. You do not go in for half measures do you and through no fault of your own either . We in the UK complain that our doctors generally are not up to par with help for RLS and medication but after reading about you, I may well have to change my mind, for a time anyway. I hope your exit interview with the specialist is not only verbal between you two, it should be in writing too. Others ideally should be warned about him but perhaps much easier said than done. These medics stick together, don't they?

Well done you, having made notes for your final exit - you do not appear to be a shrinking violet to me, thank goodness. I am sure you will give him hell. Look forward to hearing from you again and in the meantime, all the best with your recovery and your appointment.

Power to you,

Kaarina

[Cats2]

Kaarina, 2 knee replacements!! You have my utmost admiration! Mine was just an arthroscopy and something called microfracturing that the surgeon did on a whim without my permission. That is probably what caused the embolism by releasing all kinds of microscopic debris into my bloodstream. Had it not been for that it would have been an easy in and out surgery with quick recovery. Knee replacement is painful; I have several friends and relatives that have had it. It's nice when it's all healed and rehabilitated but it's a very difficult process.

Most of the time I manage to pick pretty good doctors, but once in a while I really pick a loo-loo. The exit interview will have a written part.... actually I think some of that has already been submitted by the Chief of Neurology who was quite shocked by the events and what let up to them. I'm not sure mine will be the first salvo in this battle.

[mitziblue]

Bless Your Heart!!! I'm so sorry of the horrible effects you are having!!! I have RLS and OA, Fibro, and other health issues but the Opana ER I take helps with all of them. Hope this helps sweetheart!!! xxx Mitzi

[Cats2 in reply to mitziblue]

Thank you for the info, Mitziblue. I have an appointment with my old neurologist who is not in my health plan but I will pay out of pocket if it comes to that. He's more reasonable and actually views us as patients... not lab rats.

[mitziblue in reply to Cats2]

Good luck Sweetheart!!! xx Mitzi

[Hidden in reply to Cats2]

When is your appointment Cats? How are your rls symptoms now? X

[Cats2 in reply to Hidden]

I saw the new neurologist yesterday and I have started on the Neuropatch. Last night I slept 8 hours! My husband said I never even moved all night. I know it is another Dopamine Agonist but this neurologist (who also happens to be the one that diagnosed me 25 years ago) went over the treatment options. He made a lot of sense. I have and always have had severe RLS - so did my father. Since my iron levels were low normal, the idea that raising them would cure it was ludicrous. I think you had kind of cued me on the fact that might be the case. You were right. The fact is my dopamine levels are just low.... period. The cycling of the Mirapex (only taking it at night) was mimicking augmentation. Actually only about 15% of people go through augmentation on Mirapex if used correctly. I'm on the 1mg patch Neuro patch and it is slow release. So far so good and I go back to see him in 3 months. At that time, we can talk about neurotraining. He was very disturbed by what I had been through and told me it will take 4-5 days to make up the deprivation; until then I'm not to drive. I am, however, able to lie down and take naps and go to sleep at night. That is all I want.

You mentioned that you had been in the hospital and had a similar experience to mine. Did you have "seizures"? No one seems to be able to tell me what caused them but they were frightening and very strong and I know they weren't voluntary. I can't seem to get an explanation.

[Hidden in reply to Cats2]

Hi Cats, so pleased you are getting some relief, I have just started on Neupro patch too with good resultsI took advice about it from DR B.He said yes augmentation can occur with Neupro as it can with all the dopamine drugs but not usually as wuickly or as often or as severe. That was good enough for me!

I was taken into hospital 3 weeks ago but different circumstances, I had been off mirapex for a few months and using slow release morphine, but had to stop it due to side effectd.I changed to targimacy and it eas durimg this change over as the targimact was a lower equivalent dose to the morphine.

I went with only 4 hours sleep snatched in 10 minute blocks over a period of 4 nights.Just like you I would be pacing and find myself coming to on the floor a minute or two laterI could manage 3 minutes sitting before I had severe rls symptoms so up again.My heart rate went very high and as I have an over active thyroid there was the danger of thyr6 storm so I was admitted by paramedics to hospital.They had never come across it before my arms , legd were goimg all over thecplace, I was chronically sleep deprived, I wouldn't call it seizures in my case but my shoulders head etc wete twitching out of my control. I was basically knocked out with drugs to sleep.I stayed in 3 nights and saw the pain team, I was put on fentalyn opiate pain patch but as usual had to stop due to side effects.Again a horrendous weekend weaningbfrom that.I am now on Neupro and tiny dose of morphisms which is working well.

I see a neurologist in 3 weejs time, it is a different system in UK, I have never seen a neuro in the 30 years I have had rls.My ferratin iron is good at 80.

Just so glad we both doing well on Neupro ......for now x

[Cats2 in reply to Hidden]

So glad to here the Neupro is working for you! The information you have about augmentation matches what I was told. The neuros treat RLS here because so many are involved in Sleep Medicine Centers. Thankfully I've never had a sleep study. The idea of sleeping in a room with wires hooked over my head, an air mask over my face while some stranger sits in the corner with a clipboard noting my every move is not conducive to sleep. They would not get much data.

It's interesting that we both have thyroid issues - your's being hyper and mine being hypo. Makes me wonder if there is a connection with RLS.

Anyway, I'm awake and it's daylight! So work to do.

XO Terrie

[Hidden in reply to Cats2]

Hi Terrie, its bad news here I am afraid! After 8 symptom free days and nights the RLS made its return last night quite severely including arm involvement. I have put up a new post.Dont know what to think maybe I have augmentation already.DR B said once you have had augmentation from ome dopamine med it can happen in days again. Have pit on a new patch at 5pm so will see what happens tonight .I am hoping and praying this is not the end of the line for me with the dopamime agonist meds........but if I am honest I think it is kim x

[Cats2 in reply to Hidden]

Oh, I hope not. I had trouble sleeping the past two nights but I'm not sure what is going on. I thought last night was some upper arm (left side only) but what is more disturbing is that I seem to wake up with an unexplainable depression. Calling the neurologist in the morning.

[Hidden in reply to Cats2]

Hi Catz2, will you let me know what the neurologist says please.Last night I slept , legs ok except for my left leg from the knee down.Its like burning tightening mixed with painful pinscand needles somi am wondering if there is something else going on such as neuropathy. However because I need to shake and move my foot then I think it is restless leg related.It was this left calf /foot that caused me to end upmin hospital , Still got over 2 weeks to go before I see a neuro and I have no idea how good he is.Its a completely diggerent way of working in UK, Couldn't just ring him up you have to wait for a consultation which can take up to 18 weeks. X

[Cats2 in reply to Hidden]

I'll most definitely let you know. I'm so sorry it takes that long for a neuro appointment. Over here it depends on what insurance plan the patient has. Mine does not require a referral so it speeds the whole process up; of course that little luxury comes with a price.

You mentioned neuropathy.... are you diabetic?

[Hidden in reply to Cats2]

Hi, thanks, no I am not diabetic but my symptoms in my left foot fit exactly with peripheral neuropothy.This is just an option I am and my GP are considering.I confused though because when I have had times when my rls treatments are actually working really well such as when I first started years ago on mirapex or first week on Neupro patch then that symptom eases off too.It only started when I started lowering my mirapex last November. Thetefore this points to it being rls related not neuropothy! I will have to post and ask if anyone else has a stubborn area which causes them the most trouble.good luck x

[Cats2 in reply to Hidden]

It does sound RLS related, doesn't it? I'm wondering if you can still have Mirapex withdrawal symptoms even while on the Neurpro. The past two days I've been hit with depression which is not something I usually have. There is no situational reason for it - job is doing well, new grandbaby, all good things - but it is like a cloud that rolls over me ever since coming off the Mirapex.

[Hidden in reply to Cats2]

Lots of people say they feel low for ages after coming off mirapex and its put down to coming off dopamine as it is a sort of feel good chemical or whatever the correct term is for dopamine! However Meupro also lifts dopamine levels so eould think it would counteract it.Maybe its a delayed reaction to horrendous time you had in hospital? X

[Cats2 in reply to Hidden]

Tonight the Neupro isn't working but there is no depression - maybe I've just come to terms that this isn't going to work. Calling the neuro in the morning. Don't know if he will want me to go to the 2mg patch already. I kind of hate to do that.

[Hidden in reply to Cats2]

Its 6am here and I haven't had a wink of sleep, should be going out at 9am but no chance now not fit to drive.Dont think my doctor will give me 2mg patch I had to plead for the 1mg! Its so strange we both only had relief for a week.What time is it where you are.Think I done with dopamines will have to be painkillers x

[Cats2 in reply to Hidden]

Funny you should say that. I took one of my hyrdocodones left over from hand surgery I had a month ago and after about 30 minutes went to sleep. I'm waiting for the phone lines to open at the neuro's office this a.m. It's 9:10 a.m. here in Maryland. Truthfully I was better off before I weaned off the Mirapex and I'm wondering about going back on it despite the higher risk of augmentation. I don't know. I wish I had never gone to the sleep specialist who started the whole withdrawal thing.

I hope you decided not to drive today. You're right. It would not be safe.

XO

[connie50]

oh I do feel for you, you must be going through complete hell, I thought I had it bad but reading this its only mild compared to yours, I do honestly feel for you,luckly I don't have the RL anymore I just stopped taking all the dopamine & now I only take 2 tramadol + 1 trazadone been free for 5wks now I just hope its not a fluke

[Cats2 in reply to connie50]

I have heard it can be treated with tramadol/trazadone and it may come to that. I'm seeing my old neurologist even though he is "out of plan" today. We'll see.

[connie50]

oh I do feel for you, you must be going through complete hell, I thought I had it bad but reading this its only mild compared to yours, I do honestly feel for you,luckly I don't have the RL anymore I just stopped taking all the dopamine & now I only take 2 tramadol + 1 trazadone been free for 5wks now I just hope its not a fluke

[suemont]

I'm reading this thread with interest mixed with horror. Weaning off addictive drugs is awful under any circumstances, but what Cats2 has been through is beyond belief. I do so hope the Neupro works for everyone and I'm going to look it up because it's new to me. For me, if I can sleep properly then I'm a happy bunny. I've had breast cancer (in remission after 5 years, thank God) but the docs told me that a good night's sleep is imperative ...off to check Neupro because I hate, hate, hate the addictive ones (diazepam and Xanax etc.) because sooner or later they stop working but you still have to go through withdrawals.

[Cats2]

It's Neupro (Rotigotine Transdermal System). One patch lasts 24 hours. I am on the smaller patch (1 mg); it also comes in 2mg. The advantage from what my neurologist has explained is that it keeps the dopamine levels more even with a more natural fluctuation since it is steadily absorbed. A pill (like the Mirapex I was taking) is absorbed when taken and then wears off making a larger fluctuation that is sometimes mistaken for augmentation. About 7% of Mirapex users go through augmentation in any one year so it doesn't happen to everyone.

So far so good on the Neupro - a few muscle aches at first but those are almost gone. I love not having to plan sleep in order to take a pill at the right time (mine was always 2 hours prior to bed) and there is nothing I appreciate more than an unplanned afternoon nap. Still catching up on sleep deprivation.

I hope the Neupro is a viable option for you. You are right.... sleep is crucial. (And congrats on your 5 year remission - you are a tough person).

[Hidden in reply to Cats2]

Good explaination Cats, of the Neupro patch. It also comes in 3mg and that is the highest dose for that patch. When meds like Mirapex start to wear off before your next dose. and you get RLS symptoms, then its called rebound.

[Cats2]

Thank you, Elisse. Actually the neurologist did mention rebound with the Mirapex. I'm finding the Neupro is a lot less sedating than the Mirapex. It makes it possible to sleep. Now I am working on adjusting my mental attitude at night. Incompleted projects still keep my head spinning, but that is psychological - not physical.

[Hidden]

I take it that you have nothing to do with the former practice that handled your sudden departure from Mirapex? That was an unreasonable request or the doctor has some misinformation from the sales rep that this is a drug that you can just quit with after being on for some time.. Sounds like the doctor put you through hell. Aren't you glad to have that behind you now. Thanks for enlightening anyone thinking of just pulling themselves off the drug. =)

[Cats2 in reply to Hidden]

I fired him as my physician last week over the phone. Frankly, I think he is a self-proclaimed expert in RLS. I see a lot of articles coauthored by him on very small studies, but nothing substantive. He implies that the "addiction" to Mirapex is emotional. No, there's a very physical aspect to it. It's behind me; I just hope he reads up and doesn't do that to more people.

[nightdancer]

Why your doctor would not "bridge" your meds, I have no idea. how irresponsible! Did he give you an infusion because your ferritin level was low? not iron serum, but ferritin level which shows how your body stores iron. I hope your ferritin was low, because really irresponsible, again, if he thought infusing you would help with the Mirapex which was a huge shock to your body. It is now recommended by experts with the US RLS Foundation, and the international RLS Study Group that if Mirapex or any dopamine med is going to be stopped, the ones I am in contact with highly recommended in a seminar a couple of months ago, that Mirapex should be stopped cold turkey ( like ripping off a band-aid) but to use opiate pain meds to get you thru it. So now that you are off the Mirapex, what are you going to do? I am on slow release morphine every 12 hrs for chronic pain issues, but that is also my RLS med. None of the approved meds ever worked for me, and not iron infusions either.

[Cats2]

He measured ferritin (86), iron (60), TIBC (301) and saturation (20%) - all within normal limits. He insisted that you could be within normal limits but not have enough iron in the brain to promote sleep. He's extremely hardcore on the Mirapex withdrawal deal - not even allowed to contact him until you have been totally off for 10 days - that's why I ended up in the ER - he would not even return a priority email from another physician. I'm on Neupro. Supposedly since it is sustained release it is less likely to cause augmentation. Of course we all remember when Mirapex was a miracle drug, too. I'm also paying more attention to my diet and taking iron and magnesium. I'm on the 1mg patch to see if it works with my really following the directions. Maybe in another post I should quote the directions for Mirapex weaning that he hands out. They are absolutely horrifying. I just don't want to scare anyone who may go through it at some point.

[Hidden in reply to Cats2]

It's almost midnight in the US

And not a creature is stirring

Not even one with RLS

Hope everyone is having sweet dreams.

[beady3 in reply to Hidden]

You got to be joking,my legs were a B up at 2.00 ,May be sweet dreams later. Beady 3

[Hidden in reply to beady3]

If you still can't sleep then I might as well change the way you look at the world. This is not a joke. This drove Einstein insane. He went screaming to his grave that he would figure it out. Alas, poor Albert did not figure it out. Maybe you can?

youtube.com/watch?v=Q1YqgPA...(Not working as expected?)

[orrell in reply to Cats2]

Are you still on neupro? I started it (2mg) two weeks ago and was told to keep on taking my usual dose of mirapex (.25 mg. twice a day) until my next appointment on Jan.6/15. Then the doctor will begin to wean me off mirapex. I guess (hope) the neupro will cover the withdrawal symptoms.

After a few days on neupro I had breakthrough symptoms between 3 and 4 o'clock. The

specialist told me not to take off the old patch after 24 hours but leave it on for 48 hours. Thus I am wearing two patches. So far it's working. I guess there is some residual value in the old patch.

[Hidden]

Put some music on, lay on the floor and put your legs up on the couch (don't hurt yourself).

[Artsy]

Hi this was 2 years ago I know I was needing to know how you are doing now? I tried to get off of my meripex taking 1 mg a night and I just stopped all together I thought I would never sleep again it was so bad. On the third night I felt like I was having some kind if seizures and I couldn't get relief even if I walked when this would start. It scares me to think these Drs put us on this medicine and done even tell us this can happen when we should know every detail since this is our body. The dr that put me on this medicine I haven't seen in years I'm going to go back to her and tell her what is happening and see how she reacts to me. I know one thing when any of us decide to stop this medicine we should tell our Drs and they should admit us into the hospital and help us with withdrawals because it is to violent to get off of alone a person should be watched and help because it is very harmful emotionally and to much pain I understand how you feel I hope you are doing well I feel for you.