Trying a new neurologist

[Valthinking]

I’ve waited six months to see a new neurologist. The appointment is scheduled for mid-April, 2022. I’ve lost my business. I’ve lost almost 35 lbs. I’m putting one foot ahead of the other every day and trying to do something good for someone, somehow.

My current neurologist had me on pramipexole for 13 years. Augmentation started after about ten years and I could no longer sit through plays. I was also shopping like a maniac only by the grace of God I also returned items like a maniac. My neurologist told me to take additional pramipexole but right away it made the evenings worse, so I pulled back immediately. After a few months of this, my neurologist asked me for the first time in 13 years if I noticed any compulsive behaviors and the light bulb went on. “Well,yeah . . . “ So he pulled me off pramipexole. That was a year and a half ago.

Little did I know how hard it would be withdrawing from that 1 mg pill!

The withdrawal took months. It was absolute agony. To my doctor’s credit, he gave me his cell phone number and told me to send a text—in a specific format—and he’d get back as soon as he could. I though it was so kind of him and texted only a few times, desperate as I was. I didn’t want to burn my one bridge. But when I tried to tell him how bad the withdrawal was, his response was, “Yeah, because you’re right back where you started.” I was baffled. This was SO MUCH WORSE than anything!!!! My legs were jumping all over the place on the inside and nothing I could do would stop that jerking, twitching, tickling; there were nights when walking didn’t even take it away.

He gave me gabapentin, but in a low 200 mg dose. Like using a sprinkler on a house fire. Eventually I got up to to 900 mg, which turned me into a zombie all day, and I still couldn’t sleep until the wee hours of the morning. He gave me some T3’s, and told me to use them only in an emergency. And the T3’s were the only meds that did anything! He gave me pregabalin, first a 75 mg dose, then a 150 mg dose, then on to 300 mg. Pregabalin didn’t help either and the side effects were worse than gabapentin. He gave me Xanax. The Xanax and the T3’s taken together made me black out in a weird way; I’d wake up and find myself about to take a handful of prescription pills or holding a box of salt upside down, about to pour the salt down my throat. Nothing like that has ever happened to me before. But I’ve never been on meds other than a statin and the pramipexole.

After a couple of months he said, “Something’s going on here,” it was almost funny. Ya think?
He decided he needed to do a sleep test, which indeed showed that I have RLS. No apnea or PLM. He said, “I promise we’ll figure this out.” That was over a year ago. But he just couldn’t; it was out of his wheelhouse. I gave him the Mayo Clinic Proceeding but he dismissed it; said he’d read it but didn’t think there was anything helpful. I got nowhere.

My doctor applauded when I said I wanted to consult with the Mayo Clinic Sleep Center. “I really think this is a good idea,” he said. So I had another three month waiting period for an appointment, and finally had a televisit with a renowned sleep specialist. Very thorough, with a diagnosis of ‘Familial Intractable RLS’ and an action plan.

Honestly, I was afraid of his solution: opiod monotherapy. I figured I’d be bound to get addicted. Plus insurance doesn’t cover it. Can I do this for the rest of my life? I frantically looked for alternatives and found Tramadol slow release, which sometimes augments. Scary again, plus only 24 hour slow release is available in the US which meant being woozy every day, all day. My neurologist didn’t like the idea of opioids but had no alternative either, and sort of disappeared after one post-Mayo appointment. Appointments got canceled by his office and my two texts got no reply.

In the end I sent my neurologist a message via the medical messaging system (so his staff would notify him and he’d be accountable to at least respond) AND a text. He finally allowed a small dose of Oxycontin slow release, which moved me forward, but left me in limbo. It’s just not enough. I sleep at night, but wake a minimum of five times and most nights the longest stretch I’m asleep is 1.75 hours. I’m still using T3’s and weaning myself off Clonazepam, which was what the Mayo recommended but my neurologist has never spoken to me about, because he’s never spoken to me about ANY of it.

So I booked this new neurologist, after scouring the Chicago area. His web page had a link to the RLS Foundation and specified (with warnings) that sometimes opioid therapy was necessary. So at least he may be in accord with Mayo.

In the meantime I’m on a low oxalate diet, I take vitamin D, C, B6, Iron, magnesium, Citrical (calcium citrate, zinc, copper and manganese). I have 1/2 caf coffee in the morning just to keep the pipes moving. I’m not eating much any more. I fight depression every day. I’ve started an aluminum detox, which helps with epilepsy. I thought might slow the brain signals to my legs but since I’ve started, there’s been a disruption of my odd sleep pattern. Right now I wake every hour on the hour until 3:00 am (about when I take more meds) and perhaps because of the detox can’t get back to sleep. My legs are quiet though, until about 6:00 am when some RLS starts up for a bit. This may quiet down once the detox takes hold; it’s only been a few days. Argh! The lengths we go to!!

I’ve learned a so much from the discussion boards. But I just don’t have the bandwidth to go through months and months of trial and error with this new neurologist. I’m hoping for a quick-and-dirty list of what meds I should never go on so I can be prepared. Also if anyone sees something I’m missing, I’d be glad for advice. Thank you!!!

[Rustsmith]

Opioid monotherapy shouldn't be scary. The keys are to keep the dose as low as possible (this is usually less than what is prescribed for things like post-surgical pain) and finding the med that causes the fewest side effects.

As for risk of addiction, that risk is very low at the doses used to treat RLS as long as the patient is screened for risk. This involves asking about things like past issues with addiction (alcohol, gambling, etc) for both the patient and close blood relatives. This can even be addressed when the risk is high by subscribing something like Suboxone, which includes naloxone to prevent the high feeling that leads to psychological addiction. A number of years ago, Blue Cross/Blue Shield did a study of addiction in patients that had been prescribed opioids (usually for chronic pain). The study found that the risk was less than 0.1%. The risk for RLS is even less because the dose we take is about 1/10 of what they take.

As for Tramadol ER, the risk of augmentation is low. Yes, there are reports in the literature of augmentation with tramadol, but the number of times that has happened is quite low, especially compared to the almost certainty with the dopamine agonists. You mentioned price with the opioids, Tramadol ER is expensive. With my insurance coverage, a one month prescription of methadone costs less than $5. A month of Tramadol ER costs me around $185. I liked Tramadol ER, but I always warn people of the fact that tramadol is both an opioid and an anti-depressant (something that was news to every doctor I have asked). The anti-depressant properties are not enough to be an RLS trigger, but it does complicate getting off of it. You cannot just switch to another opioid. You MUST taper to avoid anti-depressant withdrawal syndrome, a condition that I can attest is absolutely horrible and will be with you for many months. Also, the anti-depressant properties carry a different set of side effects, which can include a total loss of libido.

You mentioned that you are taking iron as well as a number of other minerals. I hope that you are not taking them around the same. All of the minerals that you listed are adsorbed by the same cells in the intestines. Unfortunately, the body gives adsorbing iron the lowest priority. So if you take an oral iron supplement at the same time as calcium (or even TUMS), almost all of the iron is going to pass through without getting into the blood stream.

Finally, the opioid that most of the RLS experts prefer to start with is methadone. Methadone has a lower risk of addiction since it is less likely to give you the pleasant feelings that addicts crave. It also has some minor secondary interaction with the dopamine receptors that the other opioids do not provide. Like any medication, it can have side effects that will vary from person to person. For example, it can depress testosterone production in men that can lead to severe depression, but this can be treated.

Hopefully this helps. I have been on methadone or tramadol combined with gabapentin now for six years. Both my RLS movement issues and insomnia are under control. Over this time, I have gone through withdrawal from methadone, tramadol and pramipexole and the worst (by FAR) was the pramipexole.

Finally, I wish you luck with your new doctor. It is horrible that your experience with doctors who are uninformed about how to treat RLS is very common. Almost all of us have been where you are, so we can sympathize and assure you that it gets better once you find a doctor who understands RLS or who is willing to learn from a well informed patient.

[Valthinking]

Wow, thank you so much for reading my post and writing such a thoughtful, detailed response. After I posted I worried I’d written too much (and I left out a LOT!) I was afraid no one would read it! You’ve given me several important insights. Now I wonder if I’ve been so scared of opioids I’ve short-circuited my own recovery.

Mornings I feel shaky and breakfast is hard to eat, probably because of constant indigestion. I used to have an iron stomach, but not anymore! I try to stay busy but fight low spirits all day. I look forward to bedtime because when the meds kick in, it’s the only time I feel good. Even though I’m up and down at least 5X a night and working to sleep, at least for the first part of the night I’m not feeling horrible. That’s been worrying me; that I might slowly become psychologically dependent. So the idea of suboxone is definitely something to try, if I can.

The current opioid I’m on is breaking the bank at $173.00, and I’m well aware the dose is too small. At this point it’s sort of, ‘My kingdom for a good night’s sleep’, but it’s frustrating that although there is a generic substitute available, none of the major pharmacies carry it. Probably because of the legal opioid fracas they’re dealing with.

The more I read about Methadone, the more I wondered about it. I checked and it’s reasonably priced, but I wondered about it lasting through the night, since there’s no extended release that I could find. What I want, what I desperately crave, is a stretch of sleep that lasts six hours. The longest stretch I have now is always shy of three hours, and some nights just an hour and forty-five minutes. I can’t remember names, I can’t remember why I walked into a room, and haven’t driven in months because I’m dizzy all the time. So would Methadone, in your experience, keep the RLS at bay so a person can stay asleep for any length of time?

I’ve been taking the iron with everything else. I used to take it at night with vitamin C but the growing trouble with indigestion has made me just take all the supplements when my stomach isn’t in protest mode. Looks like I’ll have to change that, though, and find a way to take the iron and C separately.

I’m glad for you that you’ve found solutions! It seems like a hard-won victory, with lots of learning curves. I’m thinking of all your withdrawal experience and marveling at it. You made it through so many! If you don’t mind my asking, do you switch from Gabapentin+Methadone to Gabapentin+Tramadol? I’ve read that some need to change things up for their regimen to stay effective.

I can’t thank you enough for your response and for sharing your experiences. This forum is astounding in its breadth of information and the depth of kindness. You’re a shining example, let me tell you!

[Rustsmith]

The half life of methadone ranges from 24 to 60 hrs, depending upon the patient. This is compared to 4 to 8 hrs for the other opioids (except tramadol ER). That is why you don't see an ER version of methadone. It is a 1/day medication. I take my pill at lunchtime and on the few occasions when I forget to take it, I don't notice the early signs of withdrawal until late afternoon. The sleep issue that I have with methadone is that it keeps me awake. But fortunately, the "alerting" properties seem to wear off after about 8 hrs. That is why I take it at lunch rather than at night (which is what my doctor told me to do).

For a number of years, I was switching between methadone+gabapentin to tramadol ER+gabapentin and back about every six months. This wasn't due to issues with them not controlling my RLS, it was due to problems with the side effects. Methadone was causing me to become very seriously depressed and I am intolerant of anti-depressants. But last year I learned that the depression was due to very low testosterone levels, which is a methadone side effect that is specific to men. Treatment for low T has fixed that and I expect to stay of methadone now for a long time. As for tramadol, it has the chemical properties of an anti-depressant with all the side effects of ADs. Two of these are anorgasmia (an inability to have an orgasm during sex) and a loss of libido. That combination left me very tense and frustrated about not being able to do anything about it other than demand a medication change. Tapering off of tramadol also proved to be a complicated thing to explain to docs since most of them know how to get patients onto drugs and not off of them.

[Valthinking]

Ohhh, now I get it! Looks like the methadone takes care of the RLS but doesn’t make you dopey (quite the opposite!) So sleep hygiene becomes more important. (I’m used to taking things that make me sleepy at night and dizzy the next day.) Very, very interesting! Thanks so much; this is the kind of information you just can’t find online.

The depression part sounds awful. I know from experience what it’s like to carry that around, so finding a way out is one of those fall-on-your-knees and thank God moments, and I’m happy for you.

Again, I can’t thank you enough for taking the time to share your experiences and the wisdom you’ve gained from them. It means the world to me and is a huge comfort and encouragement.

[badnights]

Steve covered a lot of things, but I can add a bit. You mentioned that your sleep sucks but not always from WED/RLS symptoms. That's pretty common, especially for those of us who have augmented. There are some things you can do to help. These things can help with the sleep, not the WED/RLS symptoms.

This is difficult if you don't live alone but can be a game-changer. You could buy some clamp lights and put red bulbs in them and set them up wherever you hang out in the evenings. One or two hours before bedtime, turn off all the overheads and white lights and turn on the reds.

Also install Nightshift and f.lux on your phone and computers. These applications remove the blue light and enhance the amber light from your screens. (If you watch TV, I don't know if there's anything for that. )

Also try melatonin, very little at first, 1 mg or less. (Caution, they sell it in 3, 5, 10, 30 mg pills). Take it at the same time every night, an hour before bed.

If possble, sleep until you wake up in the morning, without alarms. I believe that our bodies have been so terribly sleep deprived for so many years that our lower brains become conditioned to respond as if sleep is dangerous, and wake us up whenever we sleep deeply. It can take a long time to re-condition our brains into responding as if sleep is good. Sleeping in until our bodies wake up is important to that re-conditioning.

Finally, as soon as you get up, ideally you walk outside to get sunlight on your face, for 15 or 20 minutes. If you can't get outside, get ahold of those blue or green goggles (google Luminette or Re-timer) and wear them for an hour immediately after getting up.

All of these things work together to help re-set our circadian clocks.

As for opioids, and psychological dependence - - let's not confuse the sensible craving of a desperately sleep-deprived person for good sleep with psychological dependence on a medication. Opioids can be life-savers to people with WED/RLS.

Take iron WITH vitamin C, but not with other minerals (calcium, zinc, etc.) Good luck

[Valthinking]

Badnights, that makes sense—I didn't know why my body was waking me up over and over again. I just didn't know.

I thought it was not enough meds, even though I'm dizzy, down and unmotivated all day. I did wonder whether I was on too much T3 (3.5 pills, taken in stages from 5:30 pm to about 3:00 am). Or if I was not taking enough Oxycontin ER (10 mg). I also cut in half a 5mg oxycodone IR tablet, and take half at 10:00pm and the other half anywhere from 2:30am - 4:00am. I kept trying to cut back on the T3's but every time,I got socked with a really bad evening or night, which I can't afford anymore. I'm just not as resilient at this point. It's one foot in front of the other until the day is finally over. Trying to keep the day's troubles to that day and not toss them all over the rest of my life and especially the people in my life.

I'm going to give this a go! I've installed f.lux on my computer and got that figured out. I watch TV on my computer before bed and f.lux has a movie mode, so I'm hopeful that will work. I have Nightshift on my phone already, so that's done. Have some clamp lights, and was trying to research what kind of red light bulbs. There's a lot of conflicting information and a lot of advertising on the quality of red light/dangers of the wrong kind. I'm thinking, because of the way you put it, that red LED bulbs might be okay?

Found a pair of Re-timer glasses on Amazon and put them in my cart for now. I already have a light box (I thought it might help with Seasonal Affective Disorder) and stopped using because I didn't notice any benefit. But using it to re-set my circadian rhythm might make it useful again. Do you think the light box would be effective first thing in the morning in lieu of the glasses, as a start?

I've studiously avoided melatonin because I heard it worsened WED/RLS. But if a small dose helps, I have absolutely nothing to lose. I'm going to rummage around the house; we have some somewhere! I'll order the light bulbs as soon as I hear back. I had a friend say the same thing—that my Circadian Rhythm was seriously off. She recommended melatonin and seeing a pricey nutritionist, but she's never had WED/RLS, so I let it slide. Hearing it from someone like you gives it a LOT more gravitas!

Oh man! Words just fail. Many, many thanks for jumping on and sending your thoughts and your help my way. I deeply, deeply appreciate you and Steve and your incredible generosity. My heart is full.

[Polar Bear]

I live in the UK and our prescriptions are ' free' to the patient. Each medical practice will have a budget and will try to watch the cost of what they prescribe. If the doctor is willing to prescribe a medication it is of no cost to us. The same as in the USA, doctors are aware of the prescribing of opioids. At one time I mentioned Methadone to my (previous) GP and he was appalled at the idea.... like I'd asked for gold dust.

My story is with the not as often mentioned use of Codeine, it is at the low end of the opioid scale and I've been using it for about 15 years, being prescribed 12 x 15mg pills each day, having been reduced from 15 pills daily following a change of GP. I can tweak these and generally will have 4 pills at 5pm, 5 pills at 9pm and 3 pills around 3am. am prescribed Codeine Phosphate at my own request. This is because the more commonly prescribed Co-codamol contains Paracetamol and this is generally not helpful for RLS symptoms - I didn't want to be taking an unnecessary drug.
I also take 300mg Lyrica morning and evening. Lyrica is prescribed for peripheral neuropathy and have the added bonus of helping RLS symptoms. This is at maximum dosage, which does concern me, but just to note that I'm unaware of any awful side affects - perhaps some weight gain which I work at keeping in check.
If I am busy, mobile and active all day, and I find it is 6 or 7 pm and have forgotten to take my Codeine meds I may be able to save the occasional pill here or there. This will gradually add to my stash and allows me on a bad day to be taking an extra pill. I usually don't take any Codeine until 5pm but if I have reason to be immobile before that time, say... on a long car journey as a passenger then I will have to take my meds to deal with that. This is where my stash can become very useful.

As previously mentioned, Codeine Phosphate is at the lower end of the opiate scale and my doctor prescribes even that with a grudge. I can't imagine my GP even considering anything stronger. Fortunately I am recently attending a Consultant in a Movement Disorder Clinic and she fully understands.
She has said she will always be a support and if necessary will prescribe the necessary medication directly.

[Valthinking]

That's really interesting—you're the only other person I've ever encountered that uses codeine. For a while I was on four or five T3's (each has 30 mg codeine), Horizant, 2 mg clonazepam and a teeny tiny amount of pramipexole (.03 mg) and slept for six or seven hours at a time. I had a whole month of sleep and felt normal for the first time in a year. Alas and alack, it was a blip. When I told Dr. Silber I was taking the pramipexole after going through withdrawal he almost put his head down on the table in despair, finally saying, "If you find you need more pramipexole, stop taking it altogether." As long as the regimen was working he didn't want to change it, but he knew it would stop working and he was right. It did. He wondered aloud why my neurologist wasn't just prescribing codeine instead of T3's, which have Tylenol and really can't be taken at the rate I was taking without putting too much of a load on kidneys. I wish I lived in Minnesota so I could be under his care, but I don't so he can only consult. Now if this new neurologist will listen to Dr. Silber's advice!

I totally get the stash! I read somewhere that Dr. Buchfeurer (I know I've mangled his name!) recommends giving people a med for breakthrough symptoms, but it's not standard, that's for sure! And when you need something you need something, full stop.

I'm thinking the Lyrica plus the codeine together have been seeing you through. I'm sorry that you have to take more pills at 3:00am, and VERY glad you are beginning with a new consultant from the Movement Disorder Clinic. I hope this is a breakthrough for you!! Thank you so much for sharing this! Can I ask, do you have any dizziness during the day from the codeine? I realize it might be hard to say but if you're groggier when you take more, that might be helpful to know. I'm holding onto walls during the day sometimes and trying to figure out which of my many meds is the culprit!!

[Polar Bear]

I don't have any dizziness whatsoever from taking the Codeine. Something is definitely not right if you are holding onto the walls.
My only issue is constipation which can be quite severe if I don't take something to deal with it. I can go 3 or 4 days without a bowel movement and will take a small dose of a laxative, or use the orange flavoured fibre sachets where you add water, just to get things moving. I don't take regular or max doses of a laxative.

When I say I take more pills at 3am, it really can be any time, just when I wake up. This is to get ahead of any breakthrough rls symptoms.

I do feel the appointment at the Movement Disorder Clinic is a breakthrough. Very nearly didn't go, almost cancelled the appointment because I'd lost faith in doctors. What a mistake that would have been. She totally got the entire scenario. I had a list of questions and didn't get a chance to ask them, she answered them without my asking. Just imagine, I've suffered from RLS for 30+ years and have only now felt understood.

[Rustsmith]

Any opioid can cause the heart rate to slow (and breathing) and this can result in lower blood pressure. If your blood pressure is less than about 100/70, then it is possible that it can drop a bit more when you first stand up from a chair or after resting in bed. If that sounds like it might be what you have, then it is something that you need to discuss with your doctor. Most doctors get very concerned when they hear about dizziness in an older patient because the are afraid of falls and broken bones.

I should add that I have had low blood pressure for most of my life, so I am very familiar with having to use walls and furniture to steady myself. When I was working, all of my co-workers learned to accept the fact that I would stand up after a long meeting and immediately grab the table or a chair to steady myself. That scared them at first, until the realized that it was something that was normal for me.

[badnights]

LED lights work. I have some LED bulbs, a big red bulb designed to warm reptile cages, and some red bulbs from the hardware store that were probably designed for mood lighting. I think we don't have to be perfect with the red, just so long as it's reddish. One of mine seems too bright so I draped a kitchen towel over it, I worried about fire at first but it doesn't get that hot.

Yes ,the light box would be perfect in lieu of glasses but keep in mind you have to be pretty much motionless to stay in front of it. I have to move and do morning things, I can't just sit. But if you're ok with just sitting (and reading or something) then it should be fine. I used my Re-Timers for over hour a day at first,but after I noticed a shift toward earlier times, I cut it back to an hour, then half an hour.

"I've studiously avoided melatonin because I heard it worsened WED/RLS."

I did for years, too. But the study only says that melatonin concentrations in the blood rise at the same time as WED/RLS symptoms start up. There is no indication that one causes the other. Only the completely predictable coincidence of a circadian disorder (WED/RLS) starting at the same time as a circadian-controlled hormone is released. I wish I had tried it over 10 years ago, instead of zopicline.

"[Dr. Buchfuhrer] recommends giving people a med for breakthrough symptoms, but it's not standard, that's for sure! And when you need something you need something, full stop."

Exactly so! Most doctors don't seem to appreciate that the symptoms wax and wane, and that a certain dose of a medication might be good most of the time but fail often enough too. I don't know why they find it so hard to write prescriptions for that reality. My GP finally now writes a script for 1 mg immediate-release hydromorphone to go with my 9 mg of hydromorph contin, for breakthrough. I also get levo-carbidopa for breakthrough, a renowned causer of augmentation, but I use it very cautiously (never more than 3x/week, never more than 2 nights in a row, and never sooner than 5 hours before I'm getting up because it has a rebound effect with me).

I really hope some of this helps. It's a lonely journey by yourself, but keep reading and learning! Never ever give up hope, even when things seem bleak!

Does your dizziness only manifest when you stand up suddenly (i.e. then it's due to low bp as Steve suggested). But if not, then maybe it's caused by one your meds, as you suspected, or an interaction between two meds. This is something you should talk to your doctor about. What other meds are you taking?

[Valthinking]

No dizziness—good to know, thank you! I'm on some opioids too. I thought I had mastered the constipation issue with a daily salad, bran muffins, prunes and a gallon of liquids throughout the day, but then I went on a low-oxalate diet to see if I could break the curse of evening RLS. In two weeks, it worked, and I was able to go out with friends two times and had no RLS. I honestly didn't think it would work but it did. Unfortunately it's not a high-fiber diet and I'm really struggling with finding low oxalate foods that provide enough roughage; I understand the quandary! Sugar and white bread products are recommended on the low oxalate diet, yet are triggers for me. And my constant acid indigestion seems to be causing pains and problems. I wish I could cook again—my husband is a doll and deserves great food; hw LOVES to cook and be cooked for. I need a little more time and help, but hope to get back to that soon.

And you, with your brilliant woman at the movement disorder clinic! I'll be watching for your reports and expecting good things. SO nice to have someone who knows the answers before you even ask the questions. Reassuring and remarkable. A good direction for you, yay!!

[Valthinking]

Steve that is interesting! I don't know how to do the quote thing yet, but I'm referring to your statement 'I should add that I have had low blood pressure for most of my life'. Mine is either normal or on the low side, and always has been. So maybe the opioids are lowering it. If the new neurologist doesn't like the sound of dizziness, and tackles it, I'll be thrilled. I live in a home with five levels; it's up and down, up and down all day and night. Woe betide I left something in the dryer and have to trek from the master bedroom down two hairpin flights, two more short flights and a long flight into the utility room. I hold on to the railings for dear life now. II didn't know opioids lower it more. OK, going on my list of concerns for the new neurologist! Especially since today I slammed a microwave door right onto my nose. I cried because my nose felt broken—only for a minute—and then laughed. How nuts is this? I can ride a bike and play a rather dodgy game of pickle ball and yet I'm so clumsy now! The dizziness has got to go.

[Valthinking]

Hi Badnights, (Oh how I love these monikers! Makes everyone an instant friend because you think,"I know! I know! Me too!" I am sitting under a red light now. Went to the hardware store and got two different kinds of LED lights and then thought, "What if she meant the fancy near-infrared and red with 600-800 something or another? And bought something off Amazon which my husband rigged up for me. I started a little melatonin the night before last; less than 1 mg. Last night was a bad night because I had a random stomach ache, which I never have, and it kept me up, so it's hard to know. But the first night I just lowered all the lights, made sure those that were on were orange-ish, used all the screen filters before bed, took the melatonin and got up to take a walk in the rare Chicago sunlight first thing in the morning. It was a good day. So I'll pursue this and tweak as needed, and am very, very grateful for your response! I have plenty of red lights now LOL.

Right now I'm taking one T3 at 5:00 pm. Then at 9:00 pm I take 10 mg OxyContin, another T3 and .25 clonazepam (which I'm currently weaning off of, as Dr. Silber said it's only a sedative and doesn't help with the RLS.) At 10:00 pm I take 2.5 mg of oxycodone and 1/2 of a T3. Then when I wake anywhere from 2:30-4:00am I take another T3 and 2.5 mg of oxycodone. I must be on too much of something or I wouldn't be so dizzy, I was hoping the clonazepam was the culprit.

You are so right, there's nothing for it but to keep learning and reading and listening to those who've gone before and gained good insights. Having had nothing but rude health all my life, 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. I see how well so many of you are handling this long-term illness that the medical world will barely own, and I'm encouraged and so much more hopeful. I want all of us out of this. God's goodness shine on each one of you! Thank you again for such open-handed sharing. Such kindness!