Calm

Wiki says Midway, Utah (if what you meant is you didn’t know where he was originally from as the article is only telling you where he is currently from; the “but” is confusing me ) https://en.wikipedia.org/wiki/Chandler_David_Hendry

Title? Author please?

Possibly. Another possibility is the sad fact that gabepentin loses effectiveness for many over time and what might look like augmentation is simply return of symptoms, unlike the dopamine agonists that increase symptoms from the original baseline. There is a difference between a med slowly not working and so upping the dose to try to get the same relief and the drug making symptoms worse so one increases it, compounding the problem. Also note it’s a pediatric case. That rate for adults is much lower than for the dopamine agonists (given in an above study), but I did overstate that there was no augmentation. Good you corrected me. Thank you, Most people revert to pretreatment levels with the dopamine agonists after a few weeks, though it may be more gradual, thankfully. However some won’t completely reverse. Can be hard to tell because the disorder is progressive. I suspect mine had a substantial increase that wasn’t resolved given the dramatic difference between the increase over the 3-4 years I was on them vs the 25 years I have been on the other drug (RLS never increased for ten years based on no change in meds and has decreased some the last ten years). I know I am not the only one with permanent significant effects because of the group I was in, but I am grateful that I am atypical at least in this way. But thanks for bringing this study to my notice. It appears to be new, so may end up with other studies countering the usual explanation. Gabapentin has been used much more extensively in general than the dopamine agonists, so there’s some related data that’s been available through that already. I don’t know the extent of RLS studies on Gabapentin to know if the issue is not enough cases of long term use, I will be rather surprised if it is, but will research it before making any conclusion. Added: sorry for the additional post. There was actually a valid, informative link in this one, I felt it appropriate to respond to since I had already responded to the rest.

Again, you are dismissing the experts for your personal theory. Your choice. I will rely on the experts. The rest of your post is ignoring quite a bit of what I said, removing context, etc. Not worth any more effort. Don’t know how you came up with this stuff. Don’t want to know…which surprises me. I always want to know. Everyone observing, if you are seriously interested in RLS, don’t take my comments as doctrine. Just ignore BlipBlap on this subject. (I don’t think I have ever said that before on the board) RLS Foundation is a good first stop with the easiest to remember and type address (I so miss the days of LDS.org) https://www.rls.org also John Hopkins https://www.hopkinsmedicine.org/neurology-neurosurgery/specialty-areas/restless-legs-syndrome Mayo or Cleveland Clinic if you want less reading. Sorry for the detail and my too many posts due to my semi obsession with accuracy. I wouldn’t have hopped down this rabbit trail if I knew it would be mud all the way down with a disappointing view at the end.

So you are ignoring the recommendations of actual doctors and researchers based on real life responses to depend on an out dated oversimplification of the process involved? It gets complicated because dopamine both inhibits and excites. Then there are the negative side effects of long term use of dopamine agonists, especially augmentation, but also other effects, like compulsive behaviour, nausea, vomiting, dizziness and sedation, which has led to preferring Gabepentin and pregabalin as first line even if not as targeted. They don’t work for me, but Horizant and Gralise work well for my daughter. Her doctors, specialists in sleep and pain, have never suggested using the dopamine agonists. She started treatment probably 15 years later than I did, but had the same problem with doctors not listening and insisting on using drugs not recommended for those with the disorder (she went from waking up around 10 am to waking up around 2 pm, which defeated the purpose of the medication to help with her severe social anxiety and get her back into school). I warned the doctor, he stated he didn’t treat RLS and we were so desperate for our daughter to have some semblance of a normal life again (diabetes type 1 sent her anxiety through the roof, wasn’t great for RLS either, but besides sleeping later, it wasn’t a huge issue until after the psychiatrist refused to listen and we were too dismissive of our own knowledge and experience). BTW, the current model of RLS isn’t dopamine deficiency. It’s a complicated interaction of altered dopamine regulation, iron-dependent dopamine biology, circadian effects, and interactions among several neural systems. It’s not a straight forward drug in, increased dopamine, less RLS process. First line treatment after establishing it is RLS and removing any drugs that may be triggering it is more likely to be test iron and address and deficiency, but that’s difficult at times if people can’t tolerate iron supplements and don’t qualify for iron infusions, which are quite expensive. Lifestyle recommendations like exercise, reducing or quitting nicotine, alcohol and caffeine, sleep hygiene, and a couple of other things I can’t remember should be suggested as well. If someone is interested in supplements, magnesium has the best documentation. Then if medication is still needed, first choices are three α2δ calcium-channel ligands: Gabapentin, Pregabalin, and Gabapentin enacarbil. Horizant is the last and Gralise is an extended release that delays it for the small intestine. Horizant gave me ten days of pure relief, then stopped working. No vomiting or compulsive behaviour or augmentation thank goodness. So much better than the agonists. But it works great for my daughter. We react very differently to drugs. You don’t get augmentation with the Gabepentin versions, you do for a high percentage of the agonists according to documentation. I am not an exception. The experts working over years with patients knew this and were recommending against the use 20 years ago before I even started on any drugs. It is foolish to use a drug that is likely to make a disorder worse, not better. https://www.neurologyadvisor.com/features/restless-leg-syndrome-aasm-guidelines-update/ Your risk of augmentation increases the longer you are on it. https://pure.johnshopkins.edu/en/publications/a-10-year-longitudinal-assessment-of-dopamine-agonists-and-methad-4/

It would be more accurate to describe as possibly a dopamine dysfunction, involving altered dopamine signaling and regulation. Not all forms of RLS have been able to be linked to dopamine yet, but I wouldn’t be surprised if it ended up involved in some fashion.

It’s old (85) But was in clinical psych when first when getting the depression diagnosis, within 5 years for most of them, 8 years the last time. Not that hard to remember diagnostic criteria for depression and share that with the doctors. These are the current ones, would have to check, but assuming they are more thorough now, so will just use these. The 9 Diagnostic Symptoms Depressed mood: Feeling sad, empty, or hopeless most of the day. Me from age 22-42 (or whenever I got put on the dopamine agonist that rewired my brain so to speak): nope, definitely not Loss of interest: Little to no pleasure in all or almost all activities (anhedonia). Me: nope, definitely not. Weight or appetite changes: Big weight loss (not dieting) or weight gain, or big change in appetite. Me: only when put on antidepressant drugs (gained 5 lbs in a couple of weeks with all of them) or pregnant. Sleep changes: Trouble sleeping (insomnia) or sleeping way too much (hypersomnia). Me: massively both, hours to go to sleep, 12-16 hours once asleep if not woken up. Physical movement changes: Feeling overly restless or noticeably slowed down to others. Me: restless at times (duh) Fatigue: Tiredness or loss of energy nearly every day. Me: lots and lots of fatigue Worthlessness: Feeling worthless or having heavy, unneeded guilt. Me: nope, not at all, some frustration though Concentration trouble: Trouble thinking, focusing, or making choices. Me: nope, not at all Suicidal thoughts: Recurrent thoughts of death, thinking about suicide, or a suicide plan. [1, 2] Me: once, due to a drug, very scary, never took the drug again So explain to me why they went to depression instead of sleep issues? Heh, maybe because their training in sleep issues was minimal. Not their fault, just the way it was set up, but why not send me to a specialist instead of arguing with me I was depressed? “How can I be depressed when I am happy, in a good mood, enjoying university, have the best kid in the world and a sweet, noncritical husband, and having fun with my family?” Not saying they were negligent in not discovering my RLS. They were negligent for focusing on depression when I lacked the most obvious mood dysfunctions and only had sleep related issues. They should have focused on sleep. ——- I am well aware of how serotonin, dopamine, and norepinephrine interact with deficiencies or imbalances leading to a large variety of not nice stuff. Well aware dopamine is involved with some forms of RLS. Still undetermined if all as there are quite a few varieties, mine is a combo of genetic, iron-related, medication-associated, pregnancy-associated and possibly trauma as I was in a car accident at thirteen and my head crashed against the dashboard. I studied dopamine deeply when looking for alternatives to the Parkinson drugs that were driving me insane. Iron is tested because it’s indicated for dopamine synthesis. Please explain the connection between depression and RLS as you see it. Always interested in learning. I am assuming it’s more than just dopamine is involved.

And I would have a very good case for malpractice. Btw, you are out of date. Dopamine agonists are no longer the first line choice for long term treatment. While it was Sinemet that took my disorder in 3 weeks from primarily nighttime moderate, occasionally severe to all day every day severe with the bugs just moving in rather than visiting from time to time, the agonists just kept digging it down deeper and added nausea, vomiting, compulsive eating, migraines and chronic low level depression (emotionally numb, no lows but no highs, life like a treadmill, living in bubble wrap). https://sleepreviewmag.com/sleep-treatments/pharmaceuticals/prescription-drugs/restless-legs-syndrome-dopamine-agonists/ https://www.health.harvard.edu/diseases-and-conditions/a-major-change-for-restless-legs-treatment Tried all three as well as pergolide. Fun times. I would be out looking for another doctor before you finished typing your treatment protocol into my file. Ever heard of augmentation? projectile vomiting? That would be a horrendously obvious case of a doctor refusing to listen to his patient. Had one of those, so I know it’s possible. I went back to the guy who gave me my second sleep study…or was it the third? and had to beg him to take me on. I had been passed to the disaster doc when my neurologist who found my best solution moved out of town and she hated the opioids and just pretended me sleeping only for a few hours during the day on the drug she was comfortable with was reasonable after assuring me she was going to work with me no matter what to give me back a decent routine. She gave up after three tries with different drugs. I am a difficult case, but easy patient according to most of my doctors. I am good friends with a couple of them.

Wow. Okay…do you see insomnia as not a sleep disorder for the same reason…it doesn’t occur when you are asleep, only awake. Do you believe a sleep study is pointless for insomnia? RLS is technically defined as a sleep disorder because it interferes with sleep. RLS is technically a movement disorder because it affects movement. RLS is a neurological disorder because there is something dysfunctional in the nervous system. Guess what, it can fall into all three categories at once. I personally prefer “sleep-related neurological sensorimotor disorder” myself. Hits all relevant major categories at once, A disorder can belong in more than one category at a time, And btw, it’s not just “often” happening while you are awake, probably it is “only” as it is defined as sensations experienced while conscious delaying or preventing sleep.*** Of course, that includes being half or barely conscious, but your brainwaves probably wouldn’t show in a solid sleep cycle yet. At most fluctuating between alpha and theta (think that’s waking and light sleep, been awhile, so could be wrong on the label). Everyone I have heard describing them said it was preventing them from sleeping. Never mentioned they felt them while sleeping. I don’t feel it when I am partially awake and just drifting. I can think to myself hey, great, no RLS, I will be able to go back to sleep easily and the next minute it’s there because I focused on it. That is something I should research. Though I have dreamed talking about the sensations at times, I have never had a trying to find relief for RLS dream like I have had trying to find a restroom with a functional toilet dream when I have been asleep with a after drinking significant water. Pretty sure it was the PLMD that was throwing me out of my bed. That’s what pushes the blankets and pillows on the floor, tears holes in the sheets, and has my head off the side or down at the bottom instead of the top. RLS makes me twitch and scratch and then give up and bang my body against the wall or just rock and rock with loud music with a strong, consistent drum beat. Oh, and kick people who just lightly touch me. I actually hit someone once too, but generally it’s my legs that are trigger happy. Restless legs is not the movements, but the sensations nor does it directly/automatically cause the movements. My mother who had an occasional mild form of it found if she held herself still resisting the urge to move, it passed faster. For me, it made it worse, but I got my dad’s version (I don’t know if her dad had it, her mom didn’t, so it may not have been the vicious genetic version I got from dad). It’s the hoping for relief that causes the movements. Can be so intense, not moving is painful. PLMD is directly movement, the moving around in bed while asleep, otoh. They can get confused because so many with RLS have PLMD, but not the same. I have said 24/7 in describing my RLS, you made me think about this and maybe I need to switch it to 18-20/7 for precision.

Sorry to observers, please ignore… Who told you this? Please explain in detail your reasoning for this conclusion.

This is still making me laugh. How often do you do this kind of thing? Back between 97-05 when I was getting shuffled between doctors because they finally knew it wasn’t hypochondria after all, but weren’t comfortable drawing outside the very limited lines that were available to GPs and sleep specialists on it at that time, at least in Canada (at least the Canadians never treated it as depression, by then I had got the Chronic Fatigue label which was a step in the right direction). I would last 2 or 3 appointments and then get pointed in the direction of the next specialist. At that time a couple of these doctors assumed I was a medical professional (I used the correct terms in the correct way, was able to anticipate protocol suggestions and discuss with them why and why not for certain treatments, etc). Two said I was much better informed than they were and I know they weren’t just being nice because they were asking my advice of where they should go find the info. And one discussed with me in detail what his then experimental treatment he was thinking might be useful for rls and why and if he could use me to test it. I let him know it probably wouldn’t be that effective (more hinted as I didn’t want to discourage him from trying to find something that worked), but fun to try. That lasted a few times until he went to a conference and heard from the experts that I was right about the likely effectiveness. He then passed me on to a neurologist and that sleep study had that doctor telling me I ran a marathon every night….on the drug, which was validating, but disappointing because I wasn’t given any other option with his apology even though he knew there was one that worked for me (all the doctors knew, but Canada apparently said no…and I understand why). Still no questioning on the doctor’s part that maybe their preferred drug was actually making it worse like I said it was likely going to based on the experts and my experience with the first two versions. I am grateful that the US was much more careless (seems like another all or nothing case, selfishly yay! for stupidity working in my favor for once, tragic that many others have died because they shouldn’t have gotten the drug at least in the manner they did. I don’t think I could have lasted without the change to the med that doesn’t make things bearable at the cost of long term making it worst as too many things were breaking down due to the nightly trauma. Been going to the same doc for sleep for 20+ years now. We talk about the conferences he attends and research we both do, shares insights from other patients, and I used to let him experiment me with the latest thing. Nothing else has worked though and now with my fibro, experimenting is too costly. But please, tell me what I don’t know about RLS and the half dozen or more sleep studies I have been involved with over the years from various doctors once rls became known. 😛

Or because it’s expensive and time consuming to do it right (you have get wired up in a lab, head and legs…or at least they used to, haven’t had one for 15 years) and with a chance of it failing due to…lack of sleep. My daughter had a traumatic experience because the nurses would come in and scold her for not falling asleep…like that’s helpful telling a kid they will cause trouble if the can’t fall asleep in a strange room and bed all tangled up with wires? I finally went out and got her melatonin which she never used as too sedating and therefore that test provided very limited info, but they got to check the check boxes and not have to have the expense of booking her for another night. If she hadn’t slept, insurance wouldn’t have paid for it and the clinic would have had to swallow the loss. If we tried it again and it again didn’t work, we would have had to pay for it, so no more lab studies for her.

No, I wasn’t depressed and specifically told different doctors I wasn’t depressed and why they should not assume that (I have a psych degree, I know the signs of depression and let them know they were missing except for sleep disturbances). The only sleep symptoms they asked about and responded to for more details was how long I slept, when I fell asleep and woke up and if I fell asleep unexpectedly (it took hours to get to sleep). And once the first doctor wrote depression, no one questioned it until I insisted it was flat out wrong (with expert medical documentation describing protocol for diagnosis and treatment and presented it very diplomatically as I used to hate disagreeing with people) …and got ignored (I watched her eyes during the appointment expecting her to turn to the document to at least read what it was and where I got ot from. She never even looked at the file, but looked at my face the full appointment, leaning forward conveying attentiveness, speaking in her reassuring tone as if she was actuakiy listening to me instead of running through her routine…which was probably very useful much of the time as it was my first and only complaint I had of her…and then dropped by my doctor.

Nah, I didn’t look that one up. It was handed to me when I found my haven. There were doctors and nurses and researchers in the email group I belonged to that, everyone contributed what expertise they had, even if it was only what they found helpful or not in their own experience. And this shows you don’t know much of what you are talking about. Which is fine. It’s great you didn’t have to spend decades researching and experimenting yourself, thank goodness you didn’t, I wish no one had to experience this at severe or even just moderate level given sleep problems tend to expand into other areas of one’s life, but you need to recognize there are gaps in a brief summary that AI or a website might give you after ten minutes effort. I prefer doctors who have the same issue as what I or my family member is seeing them for. Makes such a massive difference in communication and detailed treatment. My daughter’s second diabetes doctor had juvenile diabetes. She has had 5 so far and he was the best. Our current pain management doctor has migraines himself and his wife has fibro and rls and he shares info on what has worked for him and family and does research on questions we come up with in part because it could help him and his family to expand his knowledge…plus he is just a really great guy. Most of my doctors couldn’t be bothered to look up what was beyond standard protocol. In the email RLS group, the people who came up with the best info were the sufferers; caregivers may have motivation, but they don’t usually have the intense focus and ability to pick up on small details in my experience. That group was years ahead of the usual online stuff in finding info. As part of the elimination of other possibilities as well as to see what other issues might be along side RLS (Periodic Limb Movement Disorder is often connected with RLS), a thorough work up for the diagnosis of RLS should include a sleep study even if a sleep study can’t demonstrate one has RLS. https://www.rls.org/diagnosis-treatment It’s not required for an official diagnosis, but given the likelihood of additional issues, it’s wise to get it done and if insurance covers it, the good doctors I know and have heard of will do them. One way to help rls is to remove as much stress as possible and especially to improve sleep. Finding out other issues through a sleep study helps that big time. Over 80% of those with rls also have PLMD, up to 30% may have sleep apea (I do, but not enough to require a cpap). Dismissing a sleep study as not that useful is viewing rls in isolation, which is rarely the reality Same with ferritin levels. If insurance covers it, it’s foolish not to do the test. My ferritin was just on the wrong side of ‘too low, pump it in’ to get insurance to pay for an iron infusion. Daughter got one off her ferritin test this last November, very helpful for several months, cut her meds in half. If I hadn’t insisted my doctors test me for that based on the experts’ advice at that time, I wouldn’t have a clue why contrary to expectations, my rls has improved in the last 6 years and I would likely be wasting money and causing other issues due to a couple of supplements I thought were helping as the only visible change in my routine, but weren’t and instead did cause issues for my tinnitus and could have potentially liver (ferritin levels have shot up recently).

I don’t have as much experience talking to men about these kinds of things so I didn’t feel comfortable in speaking for them in this way, but I have only met a handful of women who didn’t self blame at least at the start of realizing they had some issues…not in everything, but to act like everyone shifts blame these days, refusing to be accountable for oneself is ignoring why a good portion of people need to get to therapy. If people’s behaviour was as similar as some of these global descriptions suggest, there would be a lot less miscommunications and false expectations in the world because people would be a lot more predictable than they actually are. I do believe if someone gets connected to a group that sets up the dialogue into blaming others as I have seen with some former member groups, people start picking up the language and focus of that group***. And that can lead to some unhealthy habits. Always a good reason to stop and look at what kind of group one is joining, how they talk about themselves and others before the connections are too solid. Also there should a a distinction between behaviour in a group and behaviour on one’s own. Adopting a group’s language while interacting with them does not always mean you define life in the same way as others in that group or would describe things that way if outside the group. ***this can happen with members too. Preaching that exmembers who point to the Church as the reason they left are habituallly shifting the responsibility to others rather than accepting responsibility for oneself…how is that not doing the same thing, dumping all the responsibility on the individuals leaving rather then recognizing weaknesses and trying to improve the institution one belongs too?

Is this something you just looked up? If you haven’t experienced significant rls and attempted to go through diagnosis time and time again, you don’t know what you are talking about. While it is a syndrome that gets diagnosed by elimination, the only difficulty is getting insurance and/or doctors to be willing to give one the tests to eliminate the other possibilities. If you have it, it’s damn easy to identify, especially by the time you are throwing yourself out of bed in despair. I told doctors I was sleeping 16 hours a day, no sleep test offered. I told them 20 years later I was sleeping 30 minutes at a time a couple of times a day. Again, not one offered a sleep test. Nope, I was depressed, here’s more drugs. That last time, all I needed to do was type in ‘sensations in legs prevent sleep’ or something similar and RLS popped up. Less then 5 minutes after realizing I was going to have to solve it myself, I found all the info needed to get it diagnosed and on the right drugs. Unfortunately because the doctors didn’t bother to read the same professional medical info, took another 5 years and cranking my disorder up to unbearable 24/7 to get those recommended by the actual experts to pay attention…even after doctors told me I knew much more about it than they did. We are begging to be taken seriously and have rigorous studies done. Lots of us have donated our brains and bodies to the cause (after we no longer need them). Then there are all the women who have died over the years because of heart attacks being missed and other stuff. No one forced the researchers to only use men or to define diseases by how they were experienced by men. Then there’s stem cells in menstrual blood. We probably could have skipped the whole debacle over embryonic stem cells if someone had just bothered to treat menstrual blood as something besides icky waste. No one studied it until 2010’s because people just assumed the wisdom of ages on the subject was enough. https://www.theguardian.com/society/ng-interactive/2025/oct/27/menstrual-period-blood-testing-womens-health https://www.cellmedicine.com/endometrial-stromal-cells/ Recognizing institutions tend to get stagnant and rely on authority and go down familiar, safer paths is not saying institutions don’t have value. Doctors saved my daughter’s life multiple times, I survived birth due to a doctor’s intervention. I love doctors, vaccines, tests (if I had the money I would have been in there demanding everything possible just out of curiosity) and anything I can do for medical research (within reason of course) I would love to do. Unfortunately there is rarely something that needs me and works with my dependency on drugs to survive and inability to travel. But man, doctors are also the reason I also live a very limited life, never got to get my doctorate or have a career and even if they had just said “I don’t know, I can’t help you right now” instead of handing out antidepressants and guilting me into taking them and only then giving up, my life would much better. And look at women’s stories in general and those with chronic disorders online. I am not that unusual. Insurance companies making actually listening to patients not that profitable has really messed up the medical profession. Social medicine has the same issue. Burnout for doctors is ridiculous in some places. There was a pediatric surgical neurologist in our Canadian ward who couldn’t afford to send his kids to both missions and college because he had a cap on his salary. The house they lived in was tiny and old (he had a large family, 6 or 7 kids). He basically worked for free for the last three months of the year rather than let kids die. He ended up moving to the States even though he loved Canada. I really wish I could pick and choose the best of both systems as there is good and stupid in both (I would definitely put a major cap on malpractice).

You don’t hang around women much, I guess.

But what about the examples Analytics posted? I agree with all but probably one of your pictures, maybe two, but that would depend on actual behaviour, not stills. I bet everyone can guess which one I would be okay about. If they are feminine caricatures rather than just trying to be ordinary women, that makes a difference to me. That is calling attention to their choice, that’s more than just a struggle to be something that doesn’t fit well with your biology. Those who don’t want to be noticed, but can’t help it because of biology, but still put the effort in to look like the average every day woman…they are not going to be flashing penises around, so in the majority of cases I think should be okay.

I hope they are tracking the number of biological women that will be harrassed. I used to go out without my wallet all the time if not driving in Kansas. Now I would need an ID to be sure I could use the restrooms at the zoo and libraries and church (trying to remember what places I used the facilities when living in Wichita). I choose to wear men’s clothing, don’t wear makeup and have a man’s haircut at times and have been mistaken for a man from the back.

Nope, my view is practical. I don’t see how anything other than the past appearance based honor system, report the occasional problem to the police and let a judge decide if a bad actor, mistake that will be corrected in the future, or false report could feasibly work. IDs are useless without a system checking them. The number of passing transgender women that would be harrassed or assaulted if forced to use men’s restrooms are significantly higher in numbers than biological males taking advantage of transgenders being able to use the restroom that matches their outward appearance. Therefore, cost is higher with the first than the second just as cost is higher if obviously non passing transgendered individuals were allowed to use restrooms of choice and a large number of them chose to use their gender’s restroom rather than their sex….though from what I hear most are respectful of others’ trauma and fears and don’t, so perhaps I am wrong to just measure by numbers of assaulted and harassed women vs numbers of transgender women of all appearances.

Please no.

Using level of transitioning as the rule is not self identification, but appearance based. I am not against men using women’s restrooms when there’s a need. I was just making a list of biological males who might be accessing women’s toilets. And yet it worked for eons before….

Brilliant idea.

When did I say self identity should be the rule?

The ID in the purse or pocket was a stand-in for any type of legal restriction that ends up still being honor based and not with guards at the doors. Not conflating, wondering how the world such efforts are actually going to work and make any sort of significant difference in safety for biological women. Can you tell me what sort of restrictions will stop biological nontransitioned males from using women’s bathrooms if they are bad actors or who have too small of a bladder, drank too much, ignored the signals or whatever or who got hit with fluxus ventris (was looking for a Paraguayan dialect word because you know what it is as soon as you hear it…or should, lol, but couldn’t find it, so went with Latin) or just demand instant gratification with no instantly available men’s urinal in sight?