thank you ver nuch for your effort an a very comprehensive site

You are very helpful dr Berkowski . Thank you very much

Thank you very much for this important warning . It is life saving .

Yes! Luckily have dental but 70% of my teeth deteriorated over 4-5 yrs. Had to get crowns and that was painful.

doctor ...when i start to sleep .. Between awake to sleep ...i feels like forget to breathe but it doesn't happen all night and also doesn't happen everyday...what it could be

My brother is a 21-year old male. He started waking up gasping for air during sleep about 1.5 years ago. He feels extremely exhausted during daytime. So he got several tests done: 1. PNS Scan: There’s not really anything abnormal in the scan. He doesn’t snore either and is normal weight. 2. Polysomnography: He got this test done at the sleep lab several times. He claims that he couldn’t fall asleep during those tests due to trying to sleep in a new environment. So, he got home tests done and was diagnosed with mild sleep apnea about AHI 10. But he later got another sleep study at the lab. There I see he slept for 315 minutes and was awake for 15 minutes in that time. His AHI is 1.1, and all the sleep apnea episodes were CSA. 3. Other tests: He got his heart test ECG + Echocardiogram + ETT normal. His brain MRI report also says normal. He got his blood tests done as well. Everything is normal except little high cholesterol. When he first got this symptom, he didn’t use any medication that now. Now he takes cholesterol med and Clonazepam before sleep. 4. He developed involuntary limb and leg movements during sleep. It’s pretty frequent in him. No doctor has been able to suggest an effective treatment. He tried different antidepressants because of doctors’ prescription. Nothing helped. He is struggling a lot in his university due to this. We really have no clue what should improve his condition. I truly hope you see this comment and share some helpful tips.

Kratom messed up my thyroid and gave me drug induced Lupus. Not for me............ I went through WD coming off kratom - and RLS was terrible!!!

I’ve had RSL since childhood, I’m now 68. Now it’s progressed to major contractions of my limbs at night. My pcp hasn’t checked iron or ferritin levels but I’m concerned about taking iron at my age as I’ve heard it contributes to cardiovascular disease. Are muscular contractions a form of RSL?

I am currently on Neupro 3mg patch along with Hydromorphone 2mg 3 x daily. I know since I am on this patch it is basically treating my system the same way mirapex did before the NEUPRO came into interest ? Can you recommend a regime that might help my symptoms but not take me down thr Agonist road?

very informative, thanks

😢 almost 8 years of 600 mg...

Hi! I was diagnose in 2016 and since I've been taking 600 mg pregabalin. I want to stop or take a lower dose. Does a TENS have some studies as a 2nd line treatment? 🫰🏻

Diagnosed with Pugalustica Dementia. The stimulate effect is A-MAY-ZING in helping my brain to wake up in the mornings. One of my past medics shunned me for saying that, and tried to get me to take prescribed "meth". Those types of stimulates make me so sick, and my heart feels like its about to jump out of my chest. My heart, nor body has never felt any of those types of side effects from Kratom. On the RLS. Well it had never helped for me. I can always get up when it gets really bad, and take a pain med. MY DISCLAIMER: I know there are many different strains/cultivars of Kratom. I only purchase a red/green blend, and so I honestly do not know what other strains are like, nor do i know their "side effects". I have been buying this red/green Kratom blend for nearly 10 years. 1 tablespoon per cup of decaf coffee and i will have an average of 5 cups. Then 1 or 2 cups in the late afternoon. 8 years ago, i learned that dosage amount is my perfect zone, and have never needed to increase it. There has also been many times where i had to choose bills before Kratom, and stop taking it for a month at a time. Sure there are withdrawal issues, but it is nothing like a good ole fashion opiate withdrawal. But if someone is havinf opiate withdrawals, even from morphine, a red/green blend can easily stop the sickness feeling. It doesnt do anything for the blasties, but it will let you feel like normal human during the day. Anyways, it always makes me cringe when people say Kratom does this or that to them, and the people never disclose the strain they take. That is a very important detail i wish people started including. Sorry for the rambling. 😊 OH CRAP EDIT: I was just seeking possible other methods for helping my RLS as its in my elbows also. I would like to find a better way to stop it besides taking one of my pain meds.

This has been exactly why the struggle with diagnosis had been so difficult for me. Although with NT1 I can honestly say the only medications that have sufficient effect are the ones I have been on for cataplexy. Although on one medication I developed status catiplecticus which was an absuletly horroble time that went on for some time. And even now that i have switched medications, i still have a battle with the condition, especially if my dosages are missed. I always have had quite severe cataplexy attackx post sleep, but when the medication began to cause it, it became a struggle throughout the day for very long periods of time and the fatigue i suffered from the cataplexy was horrendous. I can honestly say that misdiagnosis contributes a lot of problems. And the amount of false diagnosis in australia for type 2 has caused statistics to be altered which has massively affected study accuracy and results, which in turn isnt helpful for those of us with NT1/2

I have anxiety as I injured my back and I have been stressing and have had anxiety for past 2 months and my sleep is like this for weeks and weeks and idk what to do

So we are actually sleeping, just very lightly?

Would you say it's normal to have trouble falling asleep when I only had 12 hours of awake time then tried to sleep?

suggesting buprenorphine for kratom withdrawal is like recommending someone get a tiger to help with their mouse problem

Thank you. I just placed an order for my first CPAP. This was very useful in choosing the mask

I had restless leg for years. It started when I was 14 years old and no one believed me everyone thought I was making it up even my doctors thought I was making it up I was able to deal with it early on because it wasn't so bad but as I got older it got worse and worse and actually ruined my life and my sleep and anything you can name it is such a weird feeling I can't even explain. Then I started getting it in my arms which is odd as heck and that feeling was so terrible and by mistake one day in 2015 I had pneumonia and the doctor gave me some cough medicine which made my restless leg completely go away and I have never slept that good ever in 40 years. The doctor told me it was an opioid and I had no idea what that was but I had to see a specialist for my restless leg. So I got a specialist and he was the best thing that ever came to my life he put me on several different medications which didn't work but he wanted to try not opioids first then we went to opioids and oh my goodness it was amazing because I had no pain I have never been without pain. Then I was an opioids for many many years but I assume my body was gaining a tolerance and then I started to get scared because the restless leg came on just as fast as it went away with the medicine and I broke down crying. It's a long story short I'm on 5 mg twice a day methadone for my restless leg and I swear it is the best thing ever thank God I was able to be on it and I don't even know what restless leg is I don't think I can even describe it anymore LOL because I haven't had it for almost 4 years and I'm still on this low dose of methadone. Please seek help if you have restless leg it ruins your life absolutely ruins it I had a very severe and it was horrible it was in my arms and my legs , but now I'm restless leg free!

I have been on buprenorphine /naloxone for 17 years !( I KNOW, ITS CRAZY) I have also been clean and sober and free of opiate addiction for 17 years❤ honestly I don't need the medication anymore , but I can't get off of it and the doctors say if it's working for you and you're not having drug cravings then it won't hurt to stay on it . Well ,fast forward to t today, I am currently missing 7 teeth, I've got three that are broken in some way or another, and I suffer every day with dental pain of some kind. I would like to point out that I have had perfect, beautiful ,healthy teeth my entire life. When I would go to the dentist they would compliment me on the perfect condition of my teeth and acknowledge that someone has has spent a lot of time and money to make sure that my teeth were in great shape.( that would be my mother she was obsessed with taking us to the entist and making sure our teeth were perfect, so thanks Mom) . Anyway to make a long story short, yes the medication helped get over an opiate addiction however it has destroyed my life. Having all my teeth rot out has greatly affected my self-esteem which has had a huge impact on my life and my marriage because I am not the same outgoing bubbly person that I used to be. Instead of being outgoing a people person I now find myself being more reserved in the shadows because I am embarrassed of my teeth. All of this I believe has had a direct effect on my 22-year marriage which just ended last week ,and I know it's because I'm not the same person that he married. I live in a constant state of depression because of my appearance now and very rarely ever want to leave the house. I am not giving medical advice to anyone I simply want to share my story in case it can help someone in some way. May God bless each and every one of you❤

It's painful to me

Here I am again a year later unable to sleep because of foot jerking and spinning around finally stopping around 6 a.m. My Dr will only prescribe dopamine agonists which eventually worsens the condition. 80 years old suffering with this condition for 30 years!

If it didn’t do anything to your teeth, then why is there a huge lawsuit against the company over this. I know because I’ve receipts.

Yes yes yes I’ve no teeth left, it’s ruined my smile and has caused seriously severe emotional distress and anxiety over this.

I have been on suboxone for over a year an my teeth have had such a bad decay happening an I have been telling my doctor about it but I don't know what to do

I am 21 and have had this for a while now. I remember in 5th grade I was sitting down and had the extreme urge to get up and walk but of course in class you didn’t have the luxury. It was so bad to the point I decided Im just going to push my leg into the ground as hard as I could which provided very little relief. At around the time of my middle school years I had it occasionally through out the night but it was very mild. I never thought it was a big deal and thought maybe it was just me. I decided to Google the affects I was experiencing and found out this is something that happened to a lot of people but unfortunately doctors knew very little about it. Fast forward to my prime 18-21 It has gotten worse especially through the ages of 19-21. I had recently went cold turkey from multiple substances and wanted something to divert my cravings too. I had tried kratom before but never knew it prevented RLS effects in its tracks. I realized soon I made a big mistake. I started taking kratom for the effects and sooner than later I had become dependent on it. When I didn’t have it RLS affects came in hard. It is unbearable. Even if I stand up and walk it does little to nothing to stop it. On top of this bad side affects began. Loss of hair, nails breaking, flushed face, acne and more. Now I am stuck and do not know what to do. I do not have enough income to get a medical professional that could potentially put me on Suboxone (which is something I was also using recreationally as well) also I do not want to as I am almost 2 years sober and would like to serve my country sometime in my life but of course I wont be able too if In prescribed opioids. Im stuck and lost and do not know what to do besides keep dosing kratom but the doses have got very high as I take 340 grams within 5 days max. I am currently semi homeless living with a friend as a lot of stuff has happened to me currently that prevents me (mentally and physically) from doing things, but of course thats another story for a different set of people.) I am just wanting to tell my story so people know they are not alone. I felt like I was alone for a while as well but I know that is not true. I want the victims of this disorder to hear it and any medical professionals to know as well just to see one more story to understand and have some information as this is the only way I can contribute to this. I thank any and everybody for tuning in and reading my full story.

You have a great deal of knowledge about iron infusions. Thanks for sharing all your information! We are so badly in need of caring doctors like yourself that work hard to keep updated on the latest.

After 15 years of R.L. caused by a surgery, I have new info. from Restless Leg Syndrome Foundation. After one year of oral iron, TSAT test went up only one point. My level is 23 right now. Looking for doctor to do iron infusion. I have been through 4 doctors now. Dr. Berkowski, are you seeing patients and if so can one visit you and see if a iron infusion can be done?

Yes its true i have it from 4 yeas take tramadol now 2 months off but still have withdrawl and restles legs i Hope it ends soon?

What about taking Folate? Does this help?

How about those coming off bupe who has never previously had RLS, but develop it once the weaning off begins? Would you expect dopamine agonists to assist or is the etiology totally diff?

I don't even know what to do. I can't fall asleep anymore, and when I do, it's only for a couple hours at a time. I put on a pulse ox ring and it shows my oxygen dropping down to low 90s and mid-80s but when I try to fall asleep I feel myself feeling extremely short of breath with low oxygen levels and I wake up. I did a sleep study I'm waiting on the results I just don't know what to do, I'm fed up. I used to be able to fall asleep within seconds and stay asleep and now I just wake up immediately while I'm dozing off due to the low oxygen

I went from 15.8 AHI (mostly obstructive) pre-CPAP (APAP) to 2.7 AHI average after a month on CPAP and most of them are CSA. I know TECSA is quite common and can sometimes take months to clear and I suppose I should be happy that I'm now considered "normal" but I was just dx with Babesia. I read Babesia causes us to have problems with regulating oxygen-saturation flow properly due autonomic nervous system (ANS) issues and that Babesia attacks the sleep center of the brain. Wondering if that is what is keeping me from getting below 1 ? (Although I did get a 1.2 and a 1.6 in the past 3 weeks so maybe I just need to be patient while my brain figures it out ) Also highly likely that I have Lyme (tested postive for that too but less determinate than the Babesia was (which I have a ton of the symptoms of) How can I have a coinfection and not have the primary and Lyme doesn't help with sleep either (especially long term )

I'm on this medication for managing migraines as a preventative. My weight has gone up about 20lbs and it's damn near impossible to lose it. I do intense cardio 3-5 times a week and eat 1300-1500 calories a day and my weight hasn't budged in 7 weeks.

Is the IV type more expensive?

coffee makes many people able to go back to sleep including me.

I'LL BET THIS DOCTOR DIDN'T OPENLY INFORM HIS PATENTS ABOUT THE FDA WARNING. NOW, IF YOU LOST YOUR TEETH AND YOUR SUBOXONE DOCTOR DIDN'T DISCUSS THE FDA WARNING, LEGAL LIABILITY! IM ATTACKING MINE!!!

I'm 68 and have severe RLS, as did my mom. I treated it successfully for 2 years with Ropinirole, then the augmentation began. I tried one pill of Buprenorphine and it was a nightmare for 48 hours. I had all the side effects including vomiting until I strained my rib cage. Doc finally put me on Mirapex and the past month has been life changing. I expect it to falter in several years and if so may try bouncing back to Ropinirole. I know several who've had RLS and it eventually went away.

I realised one day that not only was i taking kratom but i literally would be thinking of the next dose already, i suffer from depression, RLS, anxiety, mood swings which i think alot come from when my birth mom smoked and took pills when pregnant with me. Being in a car crash with her because she was arguing with her side peice and he pulled the handbreak causing us to swerve off the road into a pond and i wasnt buckled in and smashed my head on the side of the window, i breifly passed out and woke up to blood coming down my face and water filling the car before she pulled me out. Alternatively i wonder if the physical trauma to my head may have caused me to lose some IQ points. I was just old enough to start seeing and remembering things. She told everyone she swerved to avoid a deer but i know that wasnt the case. I want to be able to deal with these issues myself, after 5 days of not taking kratom the RLS is back, ive been soaked in sweat when i wake up, right off the back in the morning my back hurts ALOT, my legs have been aching so much it feels like when i broke my arm and tried using it, i take 1 500mg of tylenol a day now and it takes the edge off but on night shifts it always flares up. Anyways im sorry for such a long comment i went a little too much into detail and may have went off track... i know this is too much to read.

if you take this do 5 days on 5 days off. Let it get fully out of your system unless you want to see satan

Hello, Thank you for this informative video. Would taking desiccated liver capsules be an effective alternative to iron supplementation (as liver is high in iron)? Many thanks, All best wishes

I was recently diagnosed with severe complex sleep apnea and I’m at a loss. When I was first diagnosed with sleep apnea earlier this year, I was sent a Resmed Airsense 11. The Airsense 11 works great in treating the OSA, but I also get a high number of CA, sometimes into the 90’s!! I have no known medical condition that’s causing the CA. After much struggle with insurance, I did get an ASV, but I haven’t been able to use it because the machine is set wrong and it’s causing terrible heart palpitations and chest pain. It seems that my medical provider is at a loss for helping me with my complex apnea, so I’m going to be looking for another provider.

This dr. Trying to push suboxen. I wonder if big pharma would benefit from suboxen or a leaf from Thailand 😅. I call this a bunch of bullshit!’

Do you this will work for somebody who has RLS and CMT?

I'm looking into it now with my provider and Nidra's website. Is there research being done to find the specific cause of RLS and work on that, rather than treat the symptoms?

Thank you! I am a 69 y/o retired nurse who has had painful RLS since the age of five. I used to wonder why my legs ached so horribly during pregnancy.

Yeah! I just found the best informative KZfaq for patients and the medical community that does not have effective training for this nightmare condition! I ❤

Ive just watched your video. Ive had rls since i was a kid am nearly 50 now and its getting worse i can hardly get any sleep anymore and feeling suicidal. Am going to try iron tablets. Hopefully it wll work

Thats an accurate description. As a type 1 narcoleptic..cataplexy episodes differ majorly from sleep attacks aye. Cataplexy episodes are scary. Sleep attacks just disruptive. Thank you for spreading awareness 🙂 my sleep clinic doctor will see me in 30 weeks, and i hope they understand and support me well. Some stimulants would be nice, and pain management for after the cataplexy episodes. Although the muscles paralyse, i get some sort of emotional tension and some of my muscles get cramped up..and my head is buzzing. It's weird. I just want to be awake and functional 🥲