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Thanks for this info, much of which was lacking in my journey through 2 sleep clinics. But I wanted to say that when I was given IV iron, I got a severe burning sensation in my blood vessels. Also, it was expensive, as it was given in-hospital in a clinic that treats cancer patients. I had to return to supplementation, but the IVs at least helped to quickly boost my ferritin level.

Just learned of buprenorphine tonight! Severe RLS sufferer since age 15. Is it possible to work as a nurse while using this medication

Drugs, the devil, destroy us, we are always without money doing things to support the vice, many work and have no money to spare, they have to deal drugs, live well, sometimes they are sick, they leave them because they do not have the money to buy them, they humiliate us thanks to fios, I quit and I am on 2 milligrams of suboxome but soon that will end, I already have a lawsuit and we have all the evidence that this crap did me a lot of harm and they will have to compensate us.

if it damages your teeth i have been drinking them for 6 years and they pulled out 2 molars, they did a root canal on me, they put 9 crowns on all my front teeth, they turned yellow and at night I would bite them, they were wearing down and breaking, I would keep moving my tongue from side to side in my mouth until I had little balls of flesh on my tongue at the back almost in my throat they looked like warts like the ones you get with human papillomavirus similar in the mouth they are pieces of flesh that grow like a pimple, the doctor did sexually transmitted tests on me and I had nothing, it was the pills, I drank 18 milligrams a day when I would fall asleep when I drove, if you take that please leave her, go on a detox, it keeps you off drugs but it hurts you little by little, it's another addiction much worse, to get out of that you get sick 3 times more than if you used heroin.

if it damages your teeth i have been drinking them for 6 years and they pulled out 2 molars, they did a root canal on me, they put 9 crowns on all my front teeth, they turned yellow and at night I would bite them, they were wearing down and breaking, I would keep moving my tongue from side to side in my mouth until I had little balls of flesh on my tongue at the back almost in my throat they looked like warts like the ones you get with human papillomavirus similar in the mouth they are pieces of flesh that grow like a pimple, the doctor did sexually transmitted tests on me and I had nothing, it was the pills, I drank 18 milligrams a day when I would fall asleep when I drove, if you take that please leave her, go on a detox, it keeps you off drugs but it hurts you little by little, it's another addiction much worse, to get out of that you get sick 3 times more than if you used heroin.

Yes

I collapse from strong emotions and it looks like a seizure. Now I have trouble going to sleep but not narcolepsy. It’s scary. It strong when crying it’s a mess. I have ocular migraines, have had a massive brain hemorrhage at 17 years old with a sub cranial aneurysm 14 hour neurosurgery with a mental clip… I have trouble sleeping not narcolepsy. There were times I felt I was being electrocuted while sleeping. That’s five times thought my life. I’ll be 66 in two days and senses these cataplexia of events are more frequent

Very interesting. I have been taking iron for years for RLS, and my GP just checks my ferritin level once a year. I am concerned, because my father had hemochromatosis, along with RLS and Parkinson’s.

I just had mine today and having chest pains

I've been on a nasal mask for years and I wasn't getting great improvements in switched to full face.mask and have a new lease on life!!!! I've experienced dreaming for the first time in YEARS it was all because my mouth was constantly opening with the nasal mask

Is it less addictive than Pregabalin (Lyrica)?

"Bed partner." That should be spouse and spouse alone.

To even hint that it's not real is irresponsible! I have been tested for everything. My MLST was miserable because I didn't fall asleep within 20 minutes. I slept for 15 hours straight after that and it took me 3 days to feel like I was ok. I've had MRIs, Emgs, sleep tests, epilepsy tests, a lumbar puncture, genetic testing, endoscopies, and so many blood tests. I have seen 10 neurologists of different specialties, plus a slew of other specialists. My sleep hygiene and schedule are top notch and yet I can't function on less than 9 1/2 hrs. of sleep plus a daily nap or two. No wake promoting drug or stimulant even phases me. I went from a very active energetic, intelligent person to feeling like a zombie who's lost half their brain. Idiopathic means no known cause, but it does exist and we are out here living with it the best we can.

I stand against your ideology here. I have IH and I am none of the things you describe. I sleep 20-22 hours a day and the MSLT revealed I have excellent quality of sleep. My sleep schedule and habits are excellent. This disorder started when I was a teenager. Per the nap study portion of the MSLT my sleep latency is too short, but not short enough for a diagnosis of narcolepsy without cataplexy, particularly since there was only NREM staging during the map study. All that being said, your beliefs that many of these patients have poor sleep habits or quality is just absurd. I would sleep a normal 6 hours or a full 23 and still fall asleep standing or sitting up the next day. Just because doctors haven't found the cause doesn't mean it isn't there.

Was and wasn't flying?

I have restless legs syndrome due to ongoing Sacroiliitis, , , I take rapinirole because gabapentin or Lyrica has to many side effects, , , I take kratom occasionally, but never tried it for restless legs.

Excellent advice. Thank you!

I was prescribed Gabapentin @ 300mg, did nothing, another Doc said the starting therapeutic dose is 900mg, works great! I tried 600mg after watching this video and it did not work. So it looks like I am absorbing more than 600mg, I take 3 x 300mg caps 2/3 hrs before bed.

Is the urge to move the defining diagnostic criteria for RLS? My right leg gets a fizzy feeling in the shin and the odd crawlies in the calve, worsens at night but it doesn't necessarily give me the urge to move, but moving can help reduce it. My doctor and neurologist don't think it's RLS but nothing showed up in nerve conduction tests either.

What does it mean if one has both sleep apnea types?

What do you think of this new machine that they have for RLS it’s called toxic or toxic something. It’s some sort of machine I think that vibrate or something I don’t know. Came out a few months ago.

I’ve had RLS for 10 years and it’s a very very bad case. I’ve been taking dopamine antagonist Ropinole and the side effects include compulsive gambling, which I have. I’ve lost everything extreme sexual behavior have that and hoarding food. Now I have extreme augmentation and the higher the dose to try to get the bouts to subside has increased. Now I must get off that drug go back on methadone. I was on methadone for two years and it worked great and I was only taking 2.5 mg but when I got off of it was nonstop and arms and legs for 12 hours straight for two days I was told afterwards not before that. I should’ve gotten off of it very slowly and I wouldn’t have had that problem. Gabapentin does not work. I’ve tried it. Do you have any other suggestions besides methadone

I have been taking methadone (5mg A.M. and 7.5mg P M) for about 4 years due to augmentation from tramadol. Some of the side effects have made me curious if switching to buprenorphine would be beneficial. After watching this i don't think it would be. So thank you very much for this video.

I appreciate your expertise in rls. I’ve been treated for the condition for over 30 years and have had every rx available. My doctor recently prescribed suboxone to replace methadone which I took for over five years. He did so because the primary pharmacy chains here in California made it unavailable regardless of insurance . It appeared to be politically motivated. Interestingly I’ve never had an iron workup which you recommend. At my insistence recently my blood was tested and showed I’m deficient in every aspect. He dismisses iron oral supplements and recommends an infusion. After 6 months of trying I’ve yet to find a facility to administer it under Medicare Part B. So I’m stymied once again. Thanks again for your informative videos

I have calm muscles twitching all day a fizzy feeling and when I’m sleeping my feet move like I’m swimming and my thighs twitch I have no knowledge of this but my wifey is kept awake because of the movement.. she videos it to prove to me it happens. Is it a normal thing 😳

what are the typical effective dosages for each ?

Doc . I’m going through this now . The withdrawals are terrible and I’m not able to sleep. My legs have somewhere to be!

Also is there any correlation in central sleep apnea and memory issues?

So taking suboxone can't cause central sleep apnea?

100mg three times a day controls mine beautifully

Mine feels like needles poking my legs on top of the uncontrollable urge to move my legs. I don't know what I did but it's flairing up something crazy and the last 3 nights I've been unable to sleep. I'm also feeing the same needle feeling in my arms and hands now.

How can I start Gavapentin while weaning off of Ropinirole?

Can Ventolin inhaler be the trigger of Rls?

I wish you were my doctor!

I forgot i get bad allergies during the night and with meds my nose still gets stuffed by the morning.

I have used a full-face mask. But I am a grinder, so I need use a mouth gard to save whatever teeth I have left. Is it difficult to use the cpap at times. Is there is a mask for me or something I can do to help this issue?

Thank you for all you do. Would you happen to have a connect with a doctor in India who could help? We have consulted 10+ doctors and all are out of touch with augmentation

Mine is so low. The rls is horrendous. I’m outside walking it off. The mirapex is working barely after months. Dread night.

Ache and pulling accompanied by compulsion to move, all alleviated by moving. About an hours sleep a night if we are lucky

I keep one of my clocks on standard time all year.

I’m with you 💯

I was diagnosed with type one narcolepsy back in 2015. I can not understand why the hell anyone would want to have it. It sucks ass, it is life changing, thinking about all the things you may want to do in a day and not being able to accomplish between ¾ to ⅔ of those planned tasks even with medication. I wish I didn't have it. I wish that I didn't have to lube with the narcolepsy, cataplexy, sleep paralysis and restless syndrome. Medusa definitely helps, but it is far from perfect.

I have to comment. I need to send you videos of my plmd. I can’t even believe you would dismiss this and speak about it as if we are all just making it up! Check your self! You are one of the reasons why people hate going to doctors, have problems even talking about anything that is wrong with them out of fear of being ridiculed. I have suffered since I was a child. Stop with your videos.

I have painful RLS since a kid. My mom used to tell me it was growing pains, but I'm only 4'11" and 48 yrs old! I'm on gabapentin enacarbil and it helps, but not always. I also seem to have a caffeine sensitivity. I drink 1 cup of coffee, and hurt for 48 hrs. Energy drinks are torturous. I'm also severely low in iron. Right now haven't slept all night bc I'm in pain. The skin on my legs feel like it's on fire, and it feels like my leg bones are breaking. It's awful. Plus caffeine causes the excessive movements. Luckily I found a good neurologist who diagnosed my pseudotumor cerebri and helps me with the RLS.

Thanks

Your RLS must not be bad. 34 years here. Trumpbtook my meds away. So I'm thinking about Switzerland.

Why isn't the blood test done more often in cases of suspected narcolepsy?

As a type 1 narcoleptic, this video does a very poor job characterizing cataplexy, especizlly while driving, standing, or mid setence. Some of us can go straight down for 3-5minutes with very low bp, hr, and electrical activity. I am a theraoist for young kids, they all get informed about my condition in the first session, including when to use and where is the panic button in my office.

Please do a video on trigger medications (SSRIs, H1 antihistamines, Melatonin, antipsychotics). Thank you.

Opioids for rls, you should revaluate your treatment, Primum non nocere….. who funded these studies and who’s payroll were they on? Science so called is extremely muddy due to conflicting interests regulating themselves through kickbacks, favors, job promises to the ones that “regulate” their industry. Our life span has been reduced ever since a certain “safe and effective” medical intervention (gene therapy) was rolled out on mass. We now have an epidemic of young people passing of undiagnosed heart issues and rapidly progressing cancers.Buprenorphine also has an affinity for bone marrow, and causes physical dependence. It absolutely slows a patients heart rate and respiration…. Idk there’s got to be a safer option for antsy legs then a synthetic opioid that binds/blocks receptors in the brain and body with a ridiculous half life. How bout looking for the cause of the symptom rls, and addressing the cause rather than masking the symptom with narcotics