Trying a new neurologist

[Valthinking]

If anyone sees the meds I'm on and has any other thoughts on dizziness AND why these meds aren't keeping me asleep, I'd love to hear them. I've been keeping a sleep diary for the doctor, which he requested. I pour over it and try to figure out why a "not bad" night, which is 7-8 hours of very broken-up sleep, still results in my feeling awful the next day (awful being down, dizzy and struggling.) I'm worried the new neurologist will see that as a success when it's not livable for me. Is anyone on this string getting unbroken sleep? Like 5-6 hours straight?

Also since I started the .75 melatonin, which makes three nights now, I've woken up with slight RLS at 2:00am. I started taking another 1/2 T3 which doesn't help with my daytime dizziness, my theory being any time you go up on a med, even for a night, your body has to adjust.

Another question—it may be a stupid one but I'll ask anyway, because you've all seen enough that you know more than I do—could the oxycodone and oxycontin be contributing to the next day's low spirits or dizziness?

Sorry to pepper you with questions but there are more stresses than usual (a grandchild in the hospital and all the attendant stuff that comes with pitching in during a family crisis!) It's making the RLS more wicked. And I'm preparing for the new neurologist. Since it's only a 30 minute time-slot I want to maximize what I can get out of it.

Thank you for any help!

[badnights]

Oh how I love these monikers! Makes everyone an instant friend because you think,"I know! I know! Me too!"

Isn't it great? I'm making a collection of names from this board that describe the condition or the effects of the condition. Don't know what I'm going to do with it, but there are some very good names on here.

One thing I will mention regarding the recent WED symptoms at 2 AM - stress is definitely a contributor to breakthrough symptoms and to an increase in duration and intensity of symptoms (from my personal experience). It is wild how much some little stress that I think I am dealing with well expresses itself as breakthrough symptoms in the middle of the night.

I would guess the meds aren't keeping you asleep because they just are not enough, even without the added stress. You're taking clonazepam (0.25 mg), oxycodone (5 mg), oxycontin (10 mg), and T3 (codeine 30, acetominophen 300, caffeine? 15 mg per pill; 3.5 pills is 105 mg codeine, 1050 mg acetominophen, 45 mg caffeine). Nothing else for other conditions?

Codeine is the lowest potency opioid available. When I was taking it, I took 90 - 120 mg plus up to 1800 - 2400 mg gabapentin and still had symptoms keeping me up at night. Plus you take 15 mg oxy, a fairly low dose for WED/RLS. And it might be counteracted by the caffeine, if you have it in your T3s. More on that later. ..

As for why you feel unrefreshed, Maybe your sleep efficiency is low. That's something that can be calculated from a sleep study. It's the amount of time you spend asleep divided by the amount of time you spend in bed. They can measure short arousals that you may not even be aware of, in addition to the larger ones you notice.

They also measure the amount of time you spend in deep sleep (Stages 3 & 4) vs light sleep (Stages 1 & 2 and REM). Most of us are missing out on deep sleep, and what we do get is not in an uninterupted 1.5 hour stretch, which is the best way to get it.

Your neuro will likely know about these basic things and will not say "your sleep is fine" just because you say you spent 8 hours in bed and woke up 5 times.

But the question becomes, why is your sleep efficiency low, why aren't you getting enough deep sleep? Answers might be: 1. caffeine intake (do your T3s have caffeine in them? Tell your doctors that people with WED/RLS should not take caffeine, and definitely not at bedtime, since there is good evidence now that our adenosine receptors are messed up, and caffeine messes them up big time - sorry, I'm too tired to look it up so I can say this correctly). 2. Your total meds are not enough. 3. withdrawl from clonazepam is making WED worse?

Possible causes of dizziness: 1. clonazepam - but you've been taking that for a while, no? and the dizziness is more recent? 2. caffeine? (also why you can't sleep). 3. it's listed as an uncommon but not rare side effect of oxycodone 4.I don't know, I hope you make your neurologist understand the impact the dizziness is having on your life - give examples like hanging onto the stair railing.

You should probably be taking oral iron, as long as your doctor has ensured you're not in danger of iron overload. WED/RLS is thought of by many (most) specialists now as a brain iron deficiency.

I finally am learning compassion for the many people who don't. Especially since now, I am one of them! I never knew something could be this debilitating and take so much away. And you have no choice! You can't beat it back, will it away or wiggle your way out of it. oh my god yes.

I thought I was compassionate and understanding before, but there really is no substitute for having your life turn to crap. Now I get it! And I've become much more patient with people who don't pick things up quickly - again, I thought I was patient before, but now I really really get it, because I am quite slow now too.

Sorry I'm a bit disjointed. Sleepy now.

[Valthinking]

Oh Beth, thank you! There is so much good stuff here I'll have to unpack it carefully and look at it all. Feel like a kid in a candy store. Let's see, I've been taking iron and Dr. Silber from the Mayo Clinic had my current neurologist draw blood and conduct three iron tests. I can't remember the test names now, but the levels were okay, according to Dr. Silber. Nevertheless I'm interested in the IV iron; I think it should be tried, for sure. Right now I just want to get the meds/dizziness straightened out. I do take a statin, but that's the only medication other than what you have on your list.

The T3 and caffeine. OMGosh. That's messed up. The T3 will have to go as soon as I have something better. I can't believe it. I take that back. As nice a guy as my current neurologist is, he really had no idea how much he doesn't know. So not surprising. Just frustrating.

The dizziness started big time when I went on Horizant. I used to be on 600 mg of it at 5:00 pm, but it was adding to the low spirits, which, if you're predisposed at all, can happen. So I got rid of that after taking it for four or five months (with the current neuro's permission.) Oddly, at first the dizziness came at the same time each day anyway, just after 5:00 pm, even though I was off the Horizant. Now, some days it's worse than others, but always there. Sometimes it's as if I'm carrying a bowling ball on the top of my head, and the weight is just pushing down. I thought at first it was just my body reacting to being off the Horizant, but I've been off for at least four months now. The clonazepam was first prescribed in Oct. 2021. He started me at 1.5mg and I've been working my way down for five months. At first withdrawal from clonazepam was murder, so I decided for me, slow is better. I'm at half of a .5mg pill now (.25mg). Almost free. Maybe the dizziness is a withdrawal effect. I just don't know. I suppose when I'm off clonazepam completely, and have given my body some time to come back, it will be clearer.

It's encouraging to hear you say the amount of oxycontin/oxycodone is low. I thought someone would read my list and say, "What is the MATTER with you? You opioid abuser!" Dr. Silber recommended getting off the clonazepam, and going to 20 mg of oxyContin, and going up to 30mg if needed. I looked at those morphine equivalent calculators and thought all the T3's I'm taking put me over the top. My current neurologist didn't exactly recommend my current regimen; I just texted him what I was taking when I just couldn't stand it anymore. I wanted to be accountable and I wanted his feedback. He just shot back a text saying not to change anything again. (I'd been taking 10 mg oxycontin and wrote to say I'd added 5 mg oxycodone, cut in two.) I mean, he was prescribing them for me. He has actually been prescribing one 10 mg oxycontin and two 5 mg, oxycodone every month. Each bottle says take 10 mg at night. But he never gave me verbal permission to take both of them during an appointment, just the extended release. The prescriptions were just there, at the pharmacy, so I bought them. And the prescriptions have continued to be there, every month. I'm afraid to take them unless I have explicit permission. e

The quality of sleep thing, oh, yes! A friend lent me his Fitbit for a couple of weeks. He'd been having trouble sleeping. He showed my his sleep panel/score; it was in the mid-eighties. Mine was all over the place, and because I'm up so frequently, sometimes entire blocks of sleep were missing and on one day only did I have deep sleep. I did have a sleep study done over a year ago, because my neurologist couldn't believe I wasn't sleeping with all the meds I had. I tried reading the results but it was beyond me. I had no idea there was a formula. I'll go back, take a look and apply the formula you provided; that's incredibly helpful! (I just hope I can get my brain to double down on it. Honestly, there's Swiss cheese up there now!)

I'm also encouraged by your saying my new neurologist won't assume 8 hours of sleep with five awakenings adds up to good sleep. Not having enough sleep unbalances my judgement. I start catastrophizing! Predicting disasters that never happen! It was good for me to read your calm words. Another big thank you!!!

Now I'm wondering if I should again take the bull by the horns and go up another 2.5 mg on the oxycodone, in lieu of the T3's. Something to consider. I hate making that decision on my own, though. Ugh. Just 2 1/2 more weeks until the new neurologist.

Hope your sleep surpasses your kindness, Beth! Enough good, restorative sleep to last a lifetime!! I am so grateful you are a moderator, and that you give so much of your time and knowledge. All I have are thanks—you deserve more!

[badnights]

Dizziness is a possible side effects of Horizant as well. But that is certainly weird, that the dizziness came with the Horizant but didn't go away with it. You'll need to tell that information to the neurologist, too.

Clonazepam withdrawal is a complicated thing and there are entire discussion boards devoted to it. I don't know if it might cause dizziness.

If you have enough of a supply of oxycodone to go up for the next 2.5 weeks, then it might be a good idea to go up. I understand not wanting to do so without the doctor's ok; I put myself through lots of torture that way. But think carefully about your sleep needs. If you choose to go up, then when you see him/her, emphasize that you didn't want to and you considered long and hard but decided your chronic sleep loss was severe enough to justify the move.

There's also a paper - have we mentioned it to you? the 2018 consensus paper on prescribing opioids for WED/RLS. Click the link in my signature - it's the second paper listed, I think. This would be a good one to print and give to the neuro. He.she may not be aware of it. (Read it yourself first, and perhaps highlight for the neuro one or two points that seem especially relevant to your situation - hopefully without coming across as a drug seeker).

My GP, who was prescribing my opioids on the advice of the sleep specialist, at first thought I used the opioids to get to sleep. She thought they didn't do anything for the symptoms, just made me groggy. I was shocked. I explained to her that they actually did address the symptoms, and that they had an alerting effect on me, not a groggy effect. (I also showed her a research paper that told how petri-dish rat brain cells that were iron deficient were saved from death by opioids.) She knows a lot better now, but I tell you the story to show you what to be alert for in your own doctors. You are not using the opioids to get groggy enough to sleep! You're using them to get rid of the symptoms, which can be described as pain.

As for your kind words, thank you and I wish we all could have enough restorative sleep to last our entire lives. Before I was a moderator here, I joined the board as a very desperate person, not quite wanting to die yet, but not seeing any possible way to go on. I was helped immensely by the kind, compassionate, and wise moderators and members here. There is always hope, always something else to try.

[Valthinking]

Hearing, "There is always hope, always something else to try" is so comforting! I feel pretty desperate right about now. I was sleeping from about 2:30am to 6:00am, often able to go back and sleep some more. It just shifted and although the RLS was gone, so was sleep! And I'm uncomfortably constipated, even though I've been drinking a lot and have eaten prunes, raw fruit, salads etc. If it's not one thing. . . Thank you for your response Beth! The link is a Godsend. I went on Dr. Buchfeurer's Southern Cal email page, with his responses. t's heartbreaking to see how many people around the world have this, with no adequate care. It's a stunning negligence.

I've been looking back in time and trying to figure out when and why the dizziness started. It does wax and wane a little but I've been unable to drive, for others' sake, not mine, in case the dizziness swoops in more strongly at the wrong time. If I look back, I've been on and off so many different medications in the last 18 months that alone is bound to have some effect. That plus the weird sleep! I looked back at my sleep diary and about a week ago I titrated clonazepam down. Three weeks earlier I'd done the same, and before that, I'm pretty sure I dropped the dose in late February, but it was so tough I decided to stop. Previous to that, I stopped the Horizant. So I haven't really given my brain/body a chance to get to homeostasis. I'm going to check out the discussion boards about clonazepam. I flipped over in bed five days ago and the whole room started spinning. I tried to sit up and look at a point of light, but my eyes weren't obeying me. They were twitching back and forth. I tried to get up to walk and managed, and it helped, but did not make the extreme dizziness stop. I thought it was from sitting in a room with red lights for an hour before bed!! Now I realize it must have been clonazepam withdrawal. Ugh.

I just found out my new neurologist wants an in-person appointment, not a video appointment. I'm really happy about it; how can you have a meeting with a doctor about something this serious and not have a face to face? It will also give me a chance to hand papers to him, so I will print off several from the links you sent. I don't know him yet; I chose him only because there was a link to RLS.org on his page, and he mentioned OxyContin being one way to treat RLS (although with a disclaimer that it may cause addiction!). I've waited seven months to see him because he got great reviews and was the only doctor in the entire Chicago area that seemed like he might have some kind of knowledge base of Recalcitrant RLS, since oxycontin was on the table.

The research paper you showed your GP is spot-on! How perfect! I do like to read your posts elsewhere. I feel like a groupie but all of you have so much experience, and share things so willingly, there's a lot to be gleaned from every post. Thank you, too, for helping me feel not so alone. It means more than I can say when I hear back from someone. I have plenty of people in my life who love me, but they can't help with this and don't understand it. I hope they never have to. I want them happy and whole. But it does make for a lot of isolation. You are a blessing!

[badnights]

I've been looking back in time and trying to figure out when and why the dizziness started. It does wax and wane a little but I've been unable to drive, for others' sake, not mine, in case the dizziness swoops in more strongly at the wrong time. If I look back, I've been on and off so many different medications in the last 18 months that alone is bound to have some effect. That plus the weird sleep! I looked back at my sleep diary and about a week ago I titrated clonazepam down. Three weeks earlier I'd done the same, and before that, I'm pretty sure I dropped the dose in late February, but it was so tough I decided to stop. Previous to that, I stopped the Horizant. So I haven't really given my brain/body a chance to get to homeostasis. I'm going to check out the discussion boards about clonazepam.

The withdrawal may be at the root of the dizziness and I'm glad you're checking it out as much as possible. But it could also be something else, completely unrelated to your medications. It almost seems like something you should make a separate appointment about, maybe you could get in sooner.

Re constipation, I manage by eating lots of raw vegetables - - it's jaw-dropping how much one needs ---

[Valthinking]

Hi Beth, you're right, the dizziness could be completely unrelated and due to an unknown reason. I have 10 days before the neurologist appointment, so it's not too far off now. It's so incredibly difficult to find a good doctor, let alone a good neurologist who gets this life-draining phenomenon. I'm trying to 'manage my expectations' and not get too excited. The same time I made the upcoming neurologist appointment, I made an appointment with an internist who is apparently so well trusted it's taken seven months to get in to see her, too. That is also happening in April. God willing, this will be the month that heralds a way out of this.

Certain things give immeasurable help; prayer, walking outside, spending time with friends and family. Right now all of these things are out of the window because another precious yet chronically ill grandson is in crisis.These crises happen every 2-3 months. (My daughter is heroically throwing all her considerable love into helping him, and refusing medical advice that would ease things, because she's fearful of shortening his life.) But by the grace of God, my legs aren't going crazy and we've been able to help out quite a bit. I kept thinking about something you wrote, about having put yourself through unnecessary torture by withholding meds. So I've carefully, in a small way taken a bit extra of one thing or another at night, to make things a little easier.

Listen, my husband has two huge HUGE salads every day, and often a big bowl of yogurt, fruit and granola in the morning. His 93 year-old mother is the same way. So I see jaw-dropping daily and have a good idea of how much of it you're eating! Whatever it takes! Good for you for finding a way and doing it! I think now the horrible constipation came from taking too much Pepto Bismal for bad indigestion. I had no idea that it helped diarrhea too, which is code for constipates you. Well, I know now!

Thank you Beth, aka Polar Bear!! You've gone and helped again. I so deeply appreciate you!!

[badnights]

I love when I can be helpful to people.

I am very sorry about your grandson. What a dreadful thing for your daughter - and you! - to have to live through. The children themselves can be so resilient and face things with equanimity, but it's very hard on the parents. (I'm assuming he is still a child.) Try to take some time for the things that help you, because you won't be much good to others if you're worn out.

P.S. I am Beth aka badnights, and Betty a truly lovely lady is aka PolarBear! Even though I'm the one who lives in polar-bear country lol. EDIT: Ah ha - I just saw on the other Topic that you noticed that. All good!

[Valthinking]

Wanted to report that I saw the new neurologist. It was a complete bust. I chose him because on their website was a link to rls.org, and in the list of treatment meds was OxyContin. However, when I met him and mentioned rls.org, he didn't know what I was talking about. And he categorically said, "I NEVER prescribe opiates. NEVER." He saw the Mayo Clinic's recommendation for 20mg OxyContin. Shrugged. I asked him if he'd ever treated anyone with recalcitrant RLS. He said once, a long long time ago, and he referred them to someone in another Sleep Center—the one I'm using now! I waited seven months to see this guy on the strength of his website, where, he said, he would never list the OxyContin. Wanted me to find it and show it to him.

I'm furious. It's as if there's no one to go to for help; I'm in this on my own with nothing but hurdles, and just when I feel at my absolute worst! Sorry. Just spewing. I hate being this much in charge of finding the right answers. Dr. Silber at the Mayo Clinic said I could go back to him for a consult if need be. I guess I'll use my current neurologist. I do still have an appointment with two weeks from now. I'll try to enlist his help to implement Dr. Silber's plan.

Could I ask for advice? I'm currently on:
- 1 T#3 at 5:30pm for evening RLS
- 10 mg oxycontin, .25 mg clonazepam and a T#3 at 9:00 pm
- 2.5 mg oxycodone and 1/2 a T#3 at 10:00 pm
- Another 2.5 oxycodone and 1 T#3 at 2:30 am or 3:00 am, whenever I awaken.
Occasionally I'll take another 2.5 oxycodone at 4:00 am or so, if I awaken and can't get back to sleep.

With this regimen my RLS is at bay. However, I'm not sleeping much if at all from lights out at 11:00 pm (I'm already in bed) until 1:30 am or later. I wrangle usually enough sleep BUT the next day I'm wobbly, dizzy and have no motivation. AND not much to do because of it, which is depressing. I try to keep as busy as I can with housework and helping out with grandkids but in the last four months I can see I've really gone downhill. Weight dropped another 10 lbs, wobbliness has increased but what really bothers me is the low spirits.

Dr. Silber recommended monotherapy with 20 mg - 30 mg of Oxycontin. Do you think the oxycontin and oxycodone I'm taking are making me dizzy, in your experience? Or the T#3? Or could the .25 mg of clonazepam be reading with anything to make me dizzy?

I told this new neurologist about what happened when I lowered the dose of Clonazepam. I dropped .125 mg, waited two weeks and dropped another .125 mg. The second night I flipped over in bed and the entire room started spinning like a circus ride. I sat up and tried to focus on something, but couldn't. So I looked for a brighter point of light and tried again, and realized my eyes were twitching back and forth, and I couldn't get them to stop. I got out of bed and held onto the wall and went into the bathroom. By the time I got there, my eyes didn't seem to be twitching anymore. This 'new' neurologist, who I will never see again, told me I should get an MRI, that it was not a normal response to going off Clonazepam. He also said my blood pressure dropped 20 points when I stood, which is the point at which they say something's wrong. I told him just send the info to my cardiologist.

Sorry for the treatise! I'm back at square one and thought I had hit the lottery. Far from it! So I'm trying to work through next steps. Any advice would be so welcome!!

Thank you,
Val

[Rustsmith]

You aren't the only one with issues with a new neurologist. My current neurologist is very knowledgeable when it comes to treating RLS, but she is over an hour away across a mountain pass that frequently gets closed in the winter it it often takes two weeks to get any sort of response out of her, even in "emergency" situations. So I had been waiting for six months for an appointment with the best local neurologist who was supposed to be familiar with treating RLS. Let's just say that her knowledge was at least 10 years out of date and she flat came out and said "I don't do methadone", which is my primary RLS med. I was also hoping that she could help with some sleep issues being caused by my RLS meds, but she said that I would need to see the pulmonologist/sleep doctor down the hall. Oh well, at least she can help with my migraines.

As for your current RLS therapy, that is a lot of T3, which means that you are taking a lot of Tylenol that isn't doing anything for you. This can be a problem since continual use of Tylenol can be hard on your liver and is something that doctors generally try to avoid these days. It would be better to take plain codeine than continue with the T3.

As for the rest of the opioids, is there a reason why you are taking oxycodone and oxycontin rather than one or the other? They have different half lives, but not that much. That also means that you have lots of scripts to be filled each month. It seems it would be simpler to just take one med rather than that complex combination.

Finally, clonazepam is a very difficult med to stop taking, but one that you probably need to get off of. Years ago, it was a first line treatment for RLS. But that was in the days before dopamine agonists. The problem now (other than difficulty getting off of it) is that research appears to indicate that it can hasten the onset of dementia. That is NOT a known fact yet, but better safe than sorry. As for your now non-doctor's comments about an MRI, my experience over the last few years is that many doctors have very little knowledge about what is involved with getting a patient off of a prescribed medication. They are great at passing out prescriptions, but are often totally ignorant of what is involved with stopping, for example the huge number who know nothing about getting off of dopamine agonists. If you do some online research, you can find guidance for what is needed to get off of clonzepam. You can even find some comments on this board by Stainless about the process that he is currently going through. You can also talk with your pharmacist since they often know more about this topic than most doctors.

[Valthinking]

Hi Steve,
Wow. So many hurdles! I'm impressed with your fortitude. And your grace! "At least she helped me with my migraines." Glad you got SOME good out of the visit. I'm also glad you have at least one neurologist you can (sort of) count on. She's far and has communication issues, but she's golden in my book because she's helped you.

I'm beginning to think better of the neurologist I've been using for the last 14 years. He at least gave me SOME opioids. The reason I'm on this split dose of Oxycontin and Oxycodone is a little bizarre. My neurologist prescribed OxyContin 10mg but insurance wouldn't cover it. So I asked for 10 mg. Oxycodone and he gave it in the form of .5mg pills (take two.) After a couple of nights I broke down and just bought the OxyContin 10 mg and paid the $150.00. I started the above regime and contacted him to let him know. He said fine, but don't change anything. That was about three months ago; I've been trying to get in to see him ever since to ask for 20 mg. OxyContin, so I could just take that. I have an appointment with him in two weeks. Kept it in the books as backup, and I'm glad I did!

Dr. Silber said the same thing about the T#3. It's my neurologist's 'drug of comfort'. That is to say, he doesn't seem to mind how much of it I take. I'm actually afraid to ask him to prescribe codeine instead because he was so hesitant about the OxyContin. I've been with him for 14 years or so, so he knows me; otherwise I'd probably have no hope of getting anything useful out of him. I'll screw my courage to the sticking point and ask about Codeine without Tylenol. I need a breakthrough med for evenings or times when too many stressors make my legs kick into high gear.

If there's a better breakthrough med though, I'm all for it. Do you have any suggestions, since you've seen so many things in this forum? Can Tramadol be a good breakthrough med?

I've been working to get off the clonazepam for months now. I'm going to stop taking the last .25 mg as soon as I can. I would like to be a little less crappy-feeling than I am before I put myself through more withdrawal torture. Fortunately dementia isn't anywhere in my family, thank God, but I take note that it's bad for my brain and am committed to getting off of it. I'll bet you're 100% correct about the MRI and the new neurologist having zero experience in weaning from Clonazepam. I was SO angry today I could hardly speak. On the one hand, it's not his fault he doesn't know about recalcitrant RLS. But it's galling that his website leads readers to think otherwise. I'll look on this board and other places for advice on getting off this last bit of Clonazepam, and thanks for the direction!

I was hoping for a neurologist who was versed in Recalcitrant RLS specifically so I could get help if needed, moving from drug to drug. Especially in this class of drugs! I'll just have to keep looking. Maybe a Pain Management Specialist would know more, IDK. I'm in the Chicago area. You'd think with all the great medical centers here there would be someone who treated this! I looked on the rls.org website and the problem is that the docs they list may only treat garden variety RLS, not Recalcitrant RLS. The challenge will be how to find out if they do or not, before actually going to an appointment! It's like a code you can't easily break.

Thanks so much for your reply and insights. My emotions are so roiled today, it's a great comfort!

Val

[Rustsmith]

Val, there are two "flavors" of tramadol. There is a plain tramadol and an ER form. I have taken Tramadol ER, which is sort of nice in that it is a once/day med (like methadone). All the other opioids are like your oxy's in that they require multiple doses during the evening or at night. The issue with the ER form is that it is more expensive.

Tramadol is sort of nice in that it is a Sch IV med, which means no 30 pill/30 day prescriptions. They can do this because it is almost impossible to get an overdose of tramadol due to the way that it is metabolized. The two words of warning have to do with the fact that it is also an anti-depressant (but it is okay for RLS). The first warning is that it is like many ADs in that it will suppress your libido after about six months. The second issue is that you need to wean yourself off of it and stopping too abruptly can cause a condition that goes by several names, such as Anti-Depressant Withdrawal Syndrome, which is something to be avoided (I say this from personal experience). Fortunately tapering off of tramadol is much easier than clonazepam.

If you current neurologist is someone who might be willing to learn, there is a recent publication by the RLS experts that describes all of the issues involved with treating RLS. Here is a link to it: https://www.mayoclinicproceedings.org/a ... 0/fulltext

Some patients have had good luck by handing a copy to their doctor with certain sections highlighted and asking "what do you think about this?" If I were in your shoes, I might explain that your current regime is complicated and that you would like to consider switching to methadone because it is a one/day pill (and it is dirt cheap). It is also the first choice opioid of many of the RLS experts because it has a slight affinity for the dopamine receptors in addition to acting as an opioid. It can have a side effect of suppressing testosterone in men, but this can be addressed with testosterone supplementation treatments.

As for living in Chicago, you would think that there would be a doctor in the city who understands RLS, but Florida is the only area that produces more questions by people searching for a doctor. One of our moderators (ViewsAskew) used to live in Chicago and ended up moving to Los Angeles to be near one of the RLS experts. She tried educating a few doctors and eventually gave up and moved across the country just because of her RLS.

[badnights]

Hi valthinking
I'm travelling right now but I'm finally in one place for a few nights so I can get back into this conversation.

Dr. Silber recommended monotherapy with 20 mg - 30 mg of Oxycontin. Do you think the oxycontin and oxycodone I'm taking are making me dizzy, in your experience?

I can't answer that question but I can say that monotherapy with oxycontin would remove your ability to address breakthrough symptoms, except for the codeine. Dr Silber is recommending a higher dose which I suppose he hopes would prevent breakthough symptoms, but it's something maybe to ask him about. Codeine is not as potent as oxycodone.

If there's a better breakthrough med [than codeine] though, I'm all for it.

You're already taking oxycodone. It has as good a time to onset of action as anything out there (10-15 minutes).

This 'new' neurologist, who I will never see again, told me I should get an MRI, that it was not a normal response to going off Clonazepam. He also said my blood pressure dropped 20 points when I stood, which is the point at which they say something's wrong. I told him just send the info to my cardiologist.

This is good advice. He is not totally useless. He is only ignorant of WED/RLS. The dizziness is weird and should be checked out. But also, as I've mentioned, getting off clonazepam can be really messed up and you should find one of those other forums I was talking about. There's not much on here compared to some other resources that I've heard exist.

I'll screw my courage to the sticking point and ask about Codeine without Tylenol.

Please ask about codeine without acetominophen. Tylenol 3 has acetopminophen and codeine in it (and if it was made in Canada, also caffeine - ugh). Regular Tylenol is just acetominophen. Steve meant to say acetominophen.