I have been in .5mg Mirapex since sept.Gp started me at that high dose! After being on it a few months it didn’t seem to be working very well anymore and symptoms were starting earlier in the day. I had hip replacement in Jan and RLS was a nightmare. I have since cut Mirapex dose in half and GP prescribed 900 mg gabapentin . Nothing helping much! What should I ask neurologist when I see him next month. It took a months to get an appointment , so I don’t want to waste it.
Suggestions for first neurologist appt - Restless Legs Syn...
Suggestions for first neurologist appt
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Canterberry
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You were obviously augmenting on the mirapex and do need to come off it. However you are trying to come off it too fast. You should reduce by only .125 every few weeks. I would go back up to 3/4 of a tablet and stay on that for a few weeks and then go down to 1/2 a tablet, etc. The gabapentin won't help much until you are off the mirapex for several weeks and your withdrawal symptoms have settled down a bit. You are going to suffer, especially the last 2 reductions but it will be worth it in the long run. You may need a low dose opioid temporarily. Once you are off the mirapex for several weeks, increase it by 100 mg every couple of days until you find the dose that works for you. Take it 1-2 hours before bedtime. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin daily." Most of the side effects of gabapentin or pregabalin will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. If you take magnesium, take it at least 3 hours before taking gabapentin as it can interfere with gabapentins absorption. If you haven't already, check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know about it including the latest treatment and refer your doctor to it if needed at
Https://mayoclinicproceedings.org/a...
Have you had your ferritin checked? Increasing it to over 100 helps 60% of RLS folks.
Are you taking any other medicines or over the counter supplements. If you can list them I can tell you whether they are likely to increase your symptoms and if so may be able to provide you with a safe substitute.
I’m not taking any other meds. Ferritin level was mid 200 s
Sue and Canterbury: great advice and I would add that Dr. B warns that Gaba may not work for some if they have augmented on DA's.
Best of luck-I am in that cycle, too, and opioids can prove troublesome for many reasons. All of the meds have serious drawbacks but at least no augmentation on gaba and opioids.
Praying something helps. I’m 73 years old and need help so I can enjoy my Grandbabies! I have a special needs 7 year old grandson who desperately needs my help and right now I’m useless! I can’t believe this is my life now! Is there any hope?
Absolutely! You will be FINE-all you need is the right medicine that is not a DA. From my experience, an opioid worked the very first night I took it, and I was able to stop the pramipexole/ropinirole DA's in about 3-4 weeks time while taking a small amount of methadone. And I needed to take nothing else-it was a clean and easy switch to the opioid.The problem came after that, when I had a horrible withdrawal night after only 2 months of methadone.
Consider the great Gaba advice from Sue but know that it takes time to work. And then also the caveat I gave you above-it may not work if you augmented.
So, to reiterate: I took 7-10 mg of methadone and easily got off the DA's that I had been taking for 20 years or more.
I don't particularly like methadone though and it is hard to get, depending. I have been through hell when getting cut off from it by 2 doctors.
If you read my old posts, you see that I ran out and could not get an appt anywhere in the states to get a new prescription. I finally have a big appt. tomorrow-Friday-but I am very worried they will not be up on all of this and the latest opioid research.
If you want, and you are desperate for relief and sleep right now-you could do what I did (suggested by DoDahMan on here):
order Kratom (red borneo powder or capsules) from Mitragaia.com. It is an opioid powder, of sorts, but you can get it yourself, unlike other opioids. And it is natural.
It stops RLS within 5-10 minutes! No kidding!
Just know that you may have to take it several times overnight, you want to take the least amount possible, you can get addicted so you may need to withdraw from it at some point. But, that withdrawal is easier than methadone, I am fairly sure.
For me, the side effects of Kratom have been more tolerable than methadone. But, I do not know the long term effects. It is a very good, reputable company.
Perhaps just order it so you have a backup for terrible nights? Or, use it toget off the DA's before your appt.?
I hope this helps you!! You absolutely do not need to suffer much longer and the only reason you ARE suffering is because of that awful Mirapex!! You are withdrawing from that still and I think I still am, as well. It takes a long time. So, our symptoms get way worse.
An opioid or Gaba are the only things that will get you through this transition! Best of luck to you, and to all of us!
I can let you know what a big sleep center at Rush in Chicago says tomorrow, if interested. They are going to get an EARFUL from me, as you can SEE!!! omg. lol.
Yes, please let me know how your sleep study goes. Thank you all your help.
Hi. You are quite welcome and I hope I helped you a bit.
I haven't yet done a sleep study but they did want me to set one up at my last Friday appt. he was shocked that i'd never had one done. I am not sure if I will or won't do it-it depends on how awful the whole thing is!
So far, they have recommended that and Horizant. But I do not think Dr. B would recommend that-I would bet on it. We shall see!
Right now, I am stuck taking kratom and not sure what to do. I could start Buprenorphine on my own.
Best of luck!
Just a note regarding kratom: it's really not an opioid - it's actually related to the coffee family. However, it is possible to develop a tolerance to it after long-term use. But it's not as susceptible to overdose problems since it doesn't suppress breathing as opioids can. I consider that kratom saved my life in that it tided me over until I could procure a prescription for low-dose opioid therapy. Prior to that, RLS symptoms prevented me from getting more than a couple of hours of sleep and I was deteriorating rapidly and losing my will to live.
Thank you for your advice. Every little bit helps! Be well!
DoDah-thank you for clarifying. Do you believe that I was able to stop the methadone with Kratom because it is that similar to an opioid?I hear you-it saved me, too! Actually, YOU saved me by suggesting it when I was so desperately counting down my remaining methadone pills. I did not go through the horrible withdrawal night that I had last Fall. But, I can feel kratom withdrawal coming on in the evenings.
Another question-for me, drinking that dirt water kratom every 2 hours has also been hellish. The capsules aren't working as well.
Did your kratom intake last only 2 hours in the middle of the night? Or did you take much more than I am taking? Which is about 2 teaspoons every 2 hours-starting in the evening but far more necessary when I go to bed and I am trying to sleep.
Thank you!
I always took kratom mixed in with a packet of Carnation Breakfast Essentials (formerly it was called Instant Breakfast) and 8 oz. of whole milk. Tastes like a milkshake.
Originally I only needed a couple of grams of kratom per day (1 teaspoon = approx. 2 grams), but by the time I quit (because I finally was able to secure a prescription for low-dose methadone), I was taking 8 grams per dose (always mixed with the "milkshake") x 4 doses per day, for a total of 32 grams, (because of a buildup of tolerance over a period of 1 to 2 years).
Based on what you have written, I would say that you are having roughly the same experience with kratom that I had. Except for the taste, in that we used different methods of administration!
Thanks! But, so you slept through the night mostly? That has not been my situation at ALL. Ugh. Although now I am off of it completely, thankfully. I would still like to know the answer, though, in case I go back to it. Thanks, again.
Yes, I did sleep through the night mostly. But, as noted, my tolerance to kratom gradually increased the more I used it. Have you now secured another prescription for a low-dose opioid? Did you have to visit Dr. B in California, or did you see someone in the Chicago area?
I can't believe you slept through the night and I wonder how that is possible!? Did you take a huge amount at night? That never happened for me because the amount I took-2 teaspoons-wore off SO quickly.
Nope-I have gone through all of this hell and fear and withdrawals all of these months for nothing. I am now back to the DA's...taking little bits as needed overnight. It is so sad. The nights are awful. I have also started Horizant but it will take a while to see any results, if they occur.
Trying to make it to the appt with Dr. B but I now no longer ever want to be on an opioid again. No idea what he will say or do with that.
What a roller coaster and what a horrible realization to know I went through the methadone and kratom and DA withdrawals for nothing.
I had a night last week where I took 1 Horizant, then some kratom every couple hours, woke up in a horrible drenched sweat with terrible rls, then took my brother's BUP for the first time along with a bit of ROP.
The next day I vomited for hours. The magic was-I no longer had kratom withdrawals from that day on. I was getting them earlier every day! It is a great great relief to not feel that way from methadone or kratom any longer. I am thankful kratom got me through getting cut off from the methadone.
Oh, and none of my Chicago appts. helped and I had a large number of them.
Thanks!
If I were in your situation, i.e. had been cut off from methadone but had access to a prescription for BUP, I would take the BUP, but would make sure that I would get the dosage amount right. You do know that BUP is also an opioid, right?
Yes, of course I do! What you must not know is that BUP is not in the same class as Methadone and switching from Methadone to BUP is complicated. You are supposed to stop the methadone and start going into withdrawals first before starting BUP. BUP itself can make you quite sick, on top of those withdrawals. It can also throw you IN to full blown withdrawals, depending on how you transition and what guidance you get. I was completely unwilling to put myself through that.
This is all totally unlike Kratom, which was much easier to get and worked immediately.
I had a doctor who was willing to prescribe the BUP and guide me through but it was going to be the first of many appts that started at $350 per appt. On top of all of the appts. I was already paying for. Only to then turn around and pay Dr. B and travel to CA with rental cars and flights and hotels.
My sister mailed me my brothers' BUP, but, per above, very dicey to do on your own. As evidenced by the hours of vomiting I went through.
So, please don't assume, presume, or mansplain; you know I have been through the wringer. You also know, or should easily deduce from my posts, that I am more than intelligent enough to determine BUP's opioid classification.
I had no idea that the switch from methadone to bup was so challenging. it's good to know I suppose. I think they work on slightly different receptors?
I had my appointment with Dr. B today. I flew down from Oakland. One of the first things he told me was that he has a 97-98% success rate treating RLS, and in most cases, patients no longer realize they are afflicted. He spent most of an hour with me. He does NOT like D.A.s. We talked about treating with opioids. If anything, he almost seemed a little overly eager to get me off my 1 mg of ropinerole and get me going on methadone. (I also have been on pregabalin. I started 6 months ago with 150mg and had a horrible reaction. I'm tapering down and currently take 50mg. I know this stuff works for most people but it has been a nightmare drug for me. I have found it extremely addictive. It is the worst medication I have ever been on in my life, and I have been more preoccupied with this issue lately than my RLS).
After following your story, I am more nervous than ever about starting on methadone. As you are keenly aware, having future access to it is a big unknown. Dr. B told me that he hopes to keep working for another 10 years or so, and that he had thoughts of passing his business on someday to another sleep specialist. He does exude a strong sense of compassion and care, and seems to genuinely want to be there for his patients. There is a patient portal where you can leave him messages, and he usually responds within 24 hours.
While I was getting ready to leave I asked the receptionist to check with my local pharmacy to confirm they would fill my prescription. When the pharmacist learned it was for RLS, they denied it, and said they would have to check with their manager, who was not available until the following week. The receptionist tried another pharmacy, but told me that Dr. B would have to call, and he had just left the office, and I had to leave to catch my flight.
So...do i walk the opioid tightrope? I know that DA augmentation is a "when," not an "if". Should I buy more time with the ropinerole? I do have daytime symptoms and don't use a the DA until evening, trying to take as little as possible. Sometimes the daytime RLS gets REALLY uncomfortable. I have tried the dipyridomole, and it can provide a few hours of relief but produces a significant headache. (Dr. B is not crazy about this med, and he is not too hot on kratom either).
Fatniss-thank you so much for posting all of this info about your appt! First I want to say that with the right doctor, the switch to BUP from methadone is probably just fine. In my case, the 2 doctors didn't know about RLS but they did deal with addiction every day. Because of the different receptors or properties or whatever it is-they wanted me to go into withdrawals first before starting a tiny bit of the BUP. (Yes, even from the low dose of 10 mg of methadone.) Dr. B also said something to me about different receptors. But, I don't know all of the details and don't want to discourage anyone. I had a weird situation.
SO! I am having such a tough time with your post. I hear you. The way you feel about pregabalin is exactly the way I feel-the methadone and getting cut off and the fear of withdrawals and then the whole kratom and BUP thing-had me so preoccupied and it was another HUGE issue on top of dealing with RLS. I totally missed my seemingly normal DA days.
I am so not surprised about your pharmacy. That kind of crap happens all the time. I'm sure you will get it worked out, but still. It just gives you this constant awful fear of them doing that every month. I literally had fear even single month. Because even though they did fill it, you never knew until the last minute if there would be another issue. And by then, you HAVE to have it! And of course I hated being treated like some sort of junkie. Although I acted like one after I went through withdrawal.
On the other hand, you can't stay on the DA's and the methadone works very well for RLS. Dr. B would certainly want you to get off of the ROP or any DA, so that is why he would be pushing it.
Is it worth the side effects? I guess you will have to decide after all you have gone though with pregabalin. What is that anyway?! Is it a gabapentenoid?
I thought I was just fine on the methadone but now I don't miss the sweating/heat flashes, the constipation, and the sheer laziness one feels. I feel back to my old self and it feels great. Other than awful RLS.
I wonder if I should keep my appt. I probably will but at the same time-I don't know what else he can do for me. I was kind of hoping for the dipyridamole or something.
Back to YOU, gosh. I guess you have to try it? You will get relief from it and will easily get through the DA withdrawals. It is just the rest of it that one has to decide-is it worth it?
Btw, BUP is much easier to get prescribed. Nothing like at all like methadone. I found this out firsthand. Did he discuss BUP at all?
Pregabalin is chemically very similar to gabapentin. It is absorbed more readily. Folks often switch over to it after gabapentin stops working. It is a far more intense medication than gabapentin. It works for most. If the Horizant doesn't work for you, that may be your next option. Like the other gabapentinoids, it takes a few weeks to really work. Side effects can be intense though. The other option is try higher doses of gabapentin.Dr. B and I did talk about BUP. Bottom line though is, it is very expensive, up to $400-$500 a month out of pocket. No way I can do that.
My guess is that Dr. B will want to see how well you do on the Horizant, and if that doesn't help, move you right into pregabalin. So it could take some time before you know if these meds will work for you. And if they don't.....?
Thanks for the info. Did you switch to Preg after Gaba then?! I can't imagine going on Pregabalin, especially after what you described. And many others, too. That's a big fat no for me. I think Horizant is bad enough and I may quit any day now.I think the answer for me might be small amounts of a couple of things, as another poster on here does.
So many people take BUP that I am shocked at the price you are describing! So very sorry! There were quite a few docs here that had no problem prescribing it but freaked out about prescribing methadone. Hence, my resorting to Kratom while I sort out the BUP issue. I had to to avoid withdrawals from meth.
So, you need to start the methadone and get off of the ROP. Just take as little as you can-PLEASE. Try to get away with .5 if at all possible. This will serve you well in so many regards.
I bet you anything you will lose weight, too! Bonus!! (for me, anyway) I gained a lot of weight on the ROP and PRAM and now I am thin and back to my old body. I never knew! Nobody ever told me this! I thought it was other issues! Then the weight just melted off my body with no effort while on methadone and off DA's.
Enjoy the fab naps, too.
Let me know how you are doing!
Teddi how was your Dr B. appointment?
Hi, Fatniss. Thanks for remembering. Well, he is great, of course. So incredible to finally talk to a doctor who knows far, far more than I do (which shouldn't be hard at all but has proven to be very difficult, as most of us here know).
We are still at the trial stage of figuring out exactly what I will take. However, I am SUPER disappointed that an opioid, or an opioid combo, is my only option.
And, par for the course, there is a problem with the prescription and I don't have it days later.
A wild guess: just more opioid rollercoaster hell ahead for TeddiJ.
I don't think your information is correct. This may be for long term opioid ABusers, which is no where near how you have taken the methadon. To be honest and direct, I get the impression you are overly anxious about the switch. It is very good to be wary and cautious and to inform yourself. But make sure the information you get is not only reliable but also applicable.
So what is you situation now? Are you going for a serious trial of the Horizant? I think you are aware that is may take several weeks and some dosis adjustment before you can decide whether it is sufficiently effective for your RLS or not. And I do wish you find an effective treatment very soon, without any more distressing events or effects.
That's ok-I would want anyone to be direct and honest. But, just so you know, I was talking to 2 addiction specialists/doctors at the time and that is what they said. I am not anxious about the switch NOW and anyone who has to do it will be fine with the right RLS doctor.
What I was describing was during the time when I was running out of methadone (counting down the pills every day) and I was SUPER fearful of going through major withdrawals yet again.
I was told by those 2 doctors that I would have to start withdrawals before starting BUP. They were the ones helping me but they knew nothing about RLS. I was told by many others that I would have terrible nausea with BUP, as well. (Which proved to be true.)
ALSO, I had email responses from Dr. B that added to the above impression about receptors.
But, yes, I was on such a low dose of Methadone and I don't know if it would have been that challenging. The only doctor I had to help me, however, was going to follow that path of letting me start to withdraw. AND, the appts. with her were very pricey. All fine if you aren't waiting for a big expensive trip to see Dr. B.
My situation now is: I am totally off Methadone after using Kratom. Now also off of the kratom. If you'll recall-I had no choice with any of this since I could not get a doctor to continue prescribing the methadone.
But, I feel so much better overall-back to my old self. But the same self with terrible RLS at night.
Yes, I am taking Horizant. Yes, taking it seriously for the full trial time. I also do whatever I have to do to get through the nights waiting for my Dr.B appt. Which has included going back to the dreaded DA's. As little as possible though. But, still, sad and ironic.
However, now I am worried I have been waiting for something I no longer want. That was hell to get off of and had side effects that I hated. Especially after Fatniss' post just hours ago.
Thank you, Lotte-I really hope so, too! Honestly, being off the opioids feels like one giant problem that I had is all over! Being cut off like that was absolute hell. It did cause me great anxiety and fear, for sure. If you have ever had a night of withdrawal from an opioid, you would understand, although I hope you haven't!.
Anyway, thank you.
Teddi, if you don't want to go on opioids again, I would totally understand. Do consider to cancel or reschedule your appointment with dr B. Eg to first wait and see whether the Horizant works for you.
There are also quite a few more people on a combination of meds of different classes, and it is not unlikely that a combination can work better than a single medication and each at a smaller dose too. As to the DAs, you know what to watch out for, I assume, the telltale signs of augmentation. Symptoms returning sooner after taking a dose or needing more after a long time on a stable dose. And of course the spreading to other body parts and daytime symptoms. Of you can buy time this way, mist likely new treatments will get developed in the meantime.
Yes, so I am trying not to take much of the DA's each night. I just feel so upset that I went through all of that hell with methadone, then looking for new opioid docs, then taking disgusting kratom- to get OFF of DA's. If I take them again then it means I did it all for absolutely nothing.
I never dreamed I would be put in this position of having to go back on DA's. Never. But, that is what happens when doctors cut you off and the system breeds fear into all docs prescribing opioids, esp for RLS. I was such a victim of all this and treated like crap in the meantime.
I was wondering if I should do the same thing-reschedule. But, I have all of the flights, hotel and transportation already set. I can't imagine re-doing this another time. It is very expensive and a long trip-so you aren't going to just stay for 2 days.
It's just sad that I am starting to feel like I will have to go through another difficult appt of explaining and lobbying. I didn't think this appt. would be like that.
But, as you say, some are doing combinations. One person on this site is taking horizant, BUP, and dipyridamole.
It would be so great if new treatments could get developed soon! Thanks-I hadn't even thought of that possibility!
Teddi, dr B is one the most experienced RLS specialists who sees loads and loads mostly very difficult to treat patients with refractory RLS. He wil recognise your story.
If I were you I would put the essentials down in bullet points, and bring two copies: your RLS and treatment history, your inability to get opioids in your state and your unwillingness to take them again. I hope you will already have succes with your current combination treatment of Horizant and a DA. You can then discuss how to continue and what to do if you start augmenting again.
Good luck.
Edit: Two copies, one for yourself to refer to, one for dr B.
Hi. I thought I wrote you back about this but what I was saying was: excellent idea, Lotte! I had already started writing down some key questions. But this is much more specific and a better way of handling it. Thank you! I know he is seeing SO many people so I want to be sure things are clear with my situation. The poor guy is going to get an earful-lol. I will try to boil it down to just the key points.
Plus, he has had emails from me as I struggled for information after coming off of the DA/s last Fall and then over these lasts months getting cut off again and using Kratom/having BUP available.
Thanks, again. Be sure to ask me what happens, if interested, in a week's time or so. Otherwise I will plan to post anything helpful. Although nobody seems to get cut off from their methadone twice like I have! So, they are probably fine.
Enjoy your sleep-filled weekend!! Mine won't be! oy-sad lol.
Okay, thanks for the explanation.
It's kind of funny, too, DoDah, as you were the one who told me to try the Kratom. Which I am SO grateful for, as it got me through the nights after I had no methadone and prevented those withdrawals.
I did get access to BUP somewhere around that time, but, again, they were appts. that were $350 a pop to guide me and I had/have been waiting for the big Dr. B appt.
I was spending so much time and money on other appts. in my area, too, that I just decided to stick with the kratom until I talked to Dr. B. Unfortunately, that path was not easy at all with having to take it every 2 hours and those withdrawals that started earlier every day.
Anyway, you did help me and I appreciate that. I was just a bit confused about this comment.
Hi, Teddi,
I wasn't meaning to be snide - I guess I misinterpreted your comment about not wanting to deal with methadone again, as you meaning that you didn't want to get involved with any medicine that might be difficult to quit if your supply got cut off, like happened with the methadone. Please forgive me, as I meant no disrespect.
Of course I do, DoDah. It's fine. It was more about the BUP being an opioid comment-lol-anyway. You have helped me a lot and I appreciate it.
I actually AM quite worried about going back on another opioid. It's just odd that I was forced off of them but now that I am off, I do feel so much more like myself. I didn't realize how lazy I was and how nice it is not to have those side effects. Too bad that nasty RLS is still a massive issue!
and PS-I know you are newly on the Methadone and like it. I did, too other than the somewhat icky side effects.. I just didn't realize things that were changing over time, a bit of personality change and general laziness on top of the sweating/heat flashes/itchiness and constipation.
My advice (now that I really know what I am talking about and I'm off of it) is to take as little of the 10 mg's as you possible can. Even if it means adding something else. Try not to get hooked on the full 10 mg's. Try to stick with 5 mg at the most.
Enjoy sleeping now! You will probably fall asleep during movies, etc. too. The best sleep of your life.
And you will lose weight! I lost a ton of weight getting off DA's and while on methadone. Without trying at all.
Teddi, have you considered that it might have been not withdrawal but something else? Sounds a bit like food poisoning? Just an idea...
Hi, Lotte. No, I hadn't eaten anything in at least 16-20 hours and the vomiting started then-the next afternoon after I had been in bed all morning, still taking bits of BUP.
I am quite sure it was all of those bits of BUP, on top of many teaspoons/capsules of Kratom, one Horizant, and bits of ROP. I had never taken BUP before. It was such a desperate night of RLS and I shouldn't have mixed all of that. When it is 3 am and I am exhausted and miserable-I tend to throw everything but the kitchen sink at it.
BUT, somehow that whole thing totally got me off of the kratom-I never had withdrawals symptoms again! I was getting them every day by 4 or 5 p.m.-sweating, anxiety, very very antsy. That is all gone.
It has to be the BUP that was in my system long enough to get me through the withdrawal period.
Luckily you have only been on for 7 months, so it is unlikely the gabapentin won't work.
Thank you so very much! I just need to know that there is hope! Best of luck to you in this journey.
I have been lucky. After augmenting on ropinirole I slowly weaned off it and am now on 1500 mg of gabapentin which completely controls my symptoms.
Doing what Sue did would be ideal! Then you could avoid the opioid track altogether.But, you may need one (use it very short term!) to transition off the DA. Much less suffering that way!
Also, dipyridamole is a new drug they are using w success. (For adenosine in treating RLS.)
It’s in the latest newsletter.
Research that and the new opioid info-before your appt!
Because the RLS was spreading to your arms and also because you were having to take larger doses of Mirapex, these symptoms are indicative of augmentation. Augmentation is when the medication - in your case, Mirapex- is actually making the disease worse. I know because this happened to me, too. And after total knee replacement my RLS got a lot worse also. Doctors know that this can happen after major surgery but don't know why. I suggest you go to YouTube and enter "RLS. Dr. Silber" He is an RLS specialist at the Mayo Clinic and in his 2 YouTube presentations he describes the new treatment algorithm for RLS. Hope this helps!!
You are suffering...I was started on Gabapentin 900 mg 3x a day....It was not helpful...my Psychologist, who specializes in RLS for sleep problems switched me to Lyrica....and it worked much better. I am still taking Ropinerol, but have decreased from 2.5 mg to 1.5 mg...pretty successfully. I wish you much luck and I hope this is helpful to you.Take Care....You are smart to prepare for the Neurologist appointment....
Well, neurologist appt. was a waste of 1.5 hrs! He did not agree with anything I quoted from Mayo, Hopkins, or RLS foundation!
Said .5 Mira. is not “max dose !” Told me to “just stop taking it” if I didn’t want to take it anymore!” Cold turkey! He said I’m getting “some bad information off the internet.”
Only thing he suggested was a sleep study.
I ll keep trying to reduce Mir pex very slowly on my own.
I ll try to get an appt with Dr Koo in Conn
Dr B and Dr E seem to be only seeing patients
Who live in their states!
Oh, no! I just had a version of that experience a couple of fridays back at a large sleep center hospital neurology clinic. i was so deflated and disappointed. I also had many other appts around my city-while waiting for the BIG BIG BIG dr. B appt in Downey. Dr. B is seeing me and i am out of state. I know of another poster who has an appt around my time and lives in another state, too.
I think what you were told was that they would only do telehealth appts in the state that the doctor is IN. You have to be in their state-even if it's at a coffee shop on the state line-for a telehealth appt. First appts. have to be in person, in their office.
Let me know. It is clearly time for both of us to see the real experts; who know what the heck we are talking about!!!
Your doctor is egocentric and an ass. He doesn't care about learning new research or helping his patients with something new. You gotta move on-those docs are a dime a dozen.
How long is the wait for an appointment?
I think we all knew this appt. would be a bust for you-that is why most of us are on this forum. We've had a million appts just like that over the years. It is also why most of us had to detox from the DA's-because we just kept getting more and higher-dosage prescriptions.
I called around to all of the rls centers in the US listed on the rls.org site. I posted the full list on here, too. Under each center is a list of doctors within that center. Do not use the zip code-find a provider tab. You will be disappointed. Just like I was, even in a very large city. More time and money lost using that tab, even on rls.org. They may or may not understand or use opioids. You need someone who knows the very latest, no matter what you decide to do.
I made appts. with most of the rls centers. For me, calling around back on Feb. 11 or so, the first appt to pop up was Dr. B for mid April. I couldn't get in to Dr. Rye until mid JULY and then just today they cancelled that one on me. But, anything is possible and you might get lucky and be able to grab a cancellation with any of them.
This trip is difficult and expensive but when you spend so much time, energy and mental hell dealing with the wrong medical professionals, you wish you had just concentrated on the best from the very start.
In my case, by not doing that and using a local neurologist, I got cut off from methadone 2 different times by 2 doctors who didn't want to help and didn't care about withdrawals. Although the blessing now is, I was forced to get off the methadone with kratom and then had to get off the kratom. So now i will not be going back on an opioid, if at all possible, as I feel far better without one. (I still have horrible RLS overnight.) Though we shall see what he says.
Take my advice and get several appts. right now, if you can, and then see what you have to do to make it to the first one.
(Meanwhile, don't suffer: remember Kratom will eliminate RLS almost instantly, so keep some by your bed. You can order it online. Just try to use it very short term, if possible, and do your research. It worked great for me although disgusting to take. Or try some THC or Hawthorn Berry on Amazon. Or try tons of potassium, which is in the dr. berg powder -someone just posted his videos from you tube on here the other day.)
Thank you for all your help! I ll start calling around on Monday! Also, thank you for explaining the “out of state” situation!
You're quite welcome. I am happy to use my miserable experiences to make things easier for others-it is some comfort to me!
Let me know what you find out!
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