Has anyone gone through their RLS treatment program? I'm an hour and a half from Baltimore and considering it. I don't know if they first do a sleep study, which I can't imagine I could possibly sleep with electrodes attached and having to get up several times a night to use the bathroom. Any comments on this are appreciated.
Thank you!
Sorry, auto correct changed Johns to Johnson.
Hi, treatment for RLS varies a lot according to which country you're in and apparently, varies a lot within the same country. I suggest you find out more about the particular "treatment program" offered in Baltimore.
Some health services class RLS as a neurological disorder others as a sleep disorder. I was diagnosed by a neurologist not a sleep disorder specialist, so it may mean that wherever you seek treatment, sleep monitoring won't be part of the program.
It might be a good idea, if you've already diagnosed with RLS, but not yet started any treatment, (which sounds a bit odd), that you find out more about treatments for RLS and their pitfalls. Unless the particular health professional you seek treatment from is knowledgeable about RLS, and there are many that aren't, it can lead to problems later on.
The main reason I'm responding is that you say you have to get up several times in the night to use the bathroom. Have you had any investigations for this?
If not, I strongly suggest you do.
I don't have an enlarged prostate, I've been tested for that. Johns Hopkins is probably the most respected research hospital in the country, and their RLS program is huge. That's why I'm lucky to be so close to it.
There are no doctors in my rural county that know much at all about RLS, so I've not been diagnosed properly. I've had it since I was a child. It's been on and off my whole life, and became constant over the last several years.
Thank you for your input!
The RLS foundation shows only two doctors in my state that are RLS health care providers. They are both at Johns Hopkins. This is why I'm going there.
Thank you.
I have heard of the reputation of John Hopkins, so that's great. Sounds like you are right to consider it.
Don't wish to be over inquisitive, but hope you have an explanation for your nocturia.
I also have a bad back and have been on all the opioids out there for years after my two surgeries, both laminectomies, fusion, and cages on my lumbar region. I've tried tramadol, lyrica, and many other meds to sleep. Cannabis is legal in my state and I've found out helps with sleep, but I still wake up several times.
Sorry to hear that.
Do you wake up during the night because you need to pee, or do you go for a pee because you're awake?
Is your insomnia due to RLS or pain?
Perhaps you suffer sleep apnoea.
Your story is complicated.
I hope the docs at John Hopkins can take that all into account and sort it out for you.
Joe I had a sleep study, and had the same concerns about sleeping with tubes and electronic gadgets. My sleep Dr prescribed Ambien, saying it would not grossly affect the results. I guess it worked, I remember nothing and I woke up with sleep apnea.
Keep trying different strains of cannabis. Gumbo & Gorilla Glue have saved my sanity during withdrawal!!!
I should think you will be in safe hands at John Hopkins, especially if you get Dr. Early to treat you. He has several video's on youtube on RLS.
Dr. Early is who I was going to make an appointment with!
Well, that's great, because he's the man, as the saying goes! Good luck!!
Johns Hopkins is one of the most respected rls treatment centres. I would definitely try them - particularly Dr. Early. If you go to their website you will see some short webinars in which he discusses various rls issues/treatments so you can get a feel for what they are like. It is hard to imagine they won't manage to achieve an improvement in your rls.
The RLS people at Johns Hopkins are highly respected for being at the leading edge of research into our disease. If you look through past posts and replies in this forum you will see that Doctor Buchfuhrer is often mentioned favourably by forum members. Doctor Buchfuhrer acknowledges that some of his treatment methods originate with the work done at Johns Hopkins. I live about 20 hours away from Baltimore but I have recently considered going there for treatment I couldn't get in Australia. They have done a lot of the work that supports iron infusion as the first line of attack to get the ferritin up to about 350 because this simple action helps a large fraction of RLS patients.
Recently reported in the forum is that Johns Hopkins is working on transcranial magnetic stimulation (TMS) for RLS so you might get to be involved in that work as either a trial subject or perhaps as a patient. See a post on the forum by Parminter•about 24Feb19.
I went to the sleep clinic at a large public hospital in Australia. They offered me a sleep test because they would not give me an iron infusion. Being anemic was the only condition that they recognised as justifying an iron infusion. I agreed to the sleep test in case they were right. I couldn't imagine being able to perform by sleeping while fully instrumented. At this time my RLS was mostly under control by following a diet and I was planning an iron infusion in the hope that it would allow me a less strict diet. For some reason my RLS decided to be active for a few nights including the night of the test. I had a terrible night of RLS which included walking around for a few hours and I would have estimated that I had about 10 minutes sleep. However their instrumentation showed that I had slept for a couple of hours when they added it all up. That was sufficient for them to determine that I had mild sleep apnea which was probably not contributing to my RLS. They certainly recorded a lot of RLS! They then annoyed me by trying to sell me a positive air pressure machine just to see if it would help with the mild apnea. I was disappointed that I felt I had been talking to used car dealers whose aim was to make the sale no matter what and they still refused me the iron infusion despite seeing the reports recommending it. They said that none of the experts working there had heard of any relationship between iron and RLS which I suggested indicated time for them to go back to their studies.
There is the following report that suggests that there is a relationship between having obstructive sleep apnea (OSA) and RLS and that using a CPAP machine to treat the apnea helps some patients. From a quick read there is a suggestion that if you have OSA AND RLS then there is about a 50% chance that a CPAP machine will help your RLS as well as the OSA. Losing weight is also a solution to OSA for some people.
The report is: Prevalence of restless legs syndrome among patients with obstructive sleep apnea before and after CPAP treatment, compared to the general population. The Icelandic Sleep Apnea Cohort (ISAC)
Bryndis Benedikstdottir, Erna Sif Arnardottir, Christer Jansson, Allan Pack, Sigurður Juliusson, Thorarinn Gislason
European Respiratory Journal 2012 40: P436; DOI:
erj.ersjournals.com/content...
I have no idea how reputable the European Respiratory Journal is but the study appears to be reasonable at first sight.
Incidently this means that if you have OSA and RLS its probably worth doing a sleep study to see if a CPAP machine is worthwhile
I dont know many people who have sleep apnea and RLS, but those who have , said having a cpap , they didnt notice it making any difference to their RLS. Apart from sleeping deeper because the sleep apnea wasnt disturbing their sleep. Of course when their RLS was playing up then all that went out the door.
I am referring to a sleep centre who didn't know about iron related to RLS and an Icelandic research report in a journal of unknown authority. Its not a very solid foundation to base a decision.
The report claimed that the coincidence of RLS and OSA dropped from about 25% to about 14% after two years on the CPAP machine. The fact they started with 25% is interesting and suggests some correlation.
I didn't bother proceding with the CPAP because I had high hopes that the iron infusion was going to be a saviour. That's still a work in progress but not promising in my case. Trans cranial ultrasound is my new hobby! I wish I could do the RLS stuff full time but there are still bills to be paid!
Now there's TMS in the game its hard to know which way to turn. I am suffering from Cure Decision Disorder (CDD)
PDF of Hopkins or Mayo DA Withdrawal protocol??
Sleep apnea?
I saw Dr Ray Chaudhuri at Kings Collage Hospital yesterday He has reccomended Neupro patch. Can anybody give me some advice
realy rough nights
