Sleep Study Question and issues ?

[James333]

Hello everyone,

Its been a while since I last posted I need help and advice with a sleep study I am signed up for and hopefully will show up for at The Stanford sleep disorders clinic in California. I have never had a sleep study done by an Ekbom’s syndrome / RLS specialist. (I still think the disease needs to be renamed to something sounding more serious that would give it the respect and recognition it needs so badly in the medical world today) Anyways enough said.


The Stanford Sleep clinic which I got referred to through my insurance is one of the best in the USA. Anyways the thing I need help with is do I take my meds the night of my sleep study for my RLS?? I know the doctors will probably want me to take my meds of course that night. On the other hand since my RLS is so bad I take many strong meds to help me sleep. One which was prescribed by Dr B which works very well he knows everything about RLS.



Not taking my meds can be a bad Idea I just feel personally they will not see my symptoms because of my meds? I take so many that my symptoms are not nearly as strong as they used to be, some doctors would have an opinion with the amount of medication I am on its a safe amount its just about five or six different meds a night. They work and are safe so why do I have this issue? Its because with out them I am visably disabled at night and in the morning with my legs and body. With no meds its a nightmare I am almost non ambulatory sometimes with out them when I wake up and in bed at night.


I was in the phyc hospital just 3 months ago for 5 days and had my sleep monitored, timed and watch by a nurse and hospital staff. It was somewhat normal but I was on a very strong amount of meds as I am most nights now so they did not see very much. I wish I would have had a serious RLS attack when I was there but did not.


I want to go cold turkey for the study and not take anything and suffer the whole night in the study having full symptoms I feel its important for them to see if its all RLS and PLMD or something else with me they need to see the true James ? This may be a bad Idea and I most likely should do what my doctor tells me to do. The medication is working great most of the time but when I don’t have it its a crisis!


Also I wanted to just hear about other peoples thoughts and experiences on sleep studies if they are any good?? My insurance is paying for it so I might as well do it. Can they be scary? Are they worth it? I really do not want to do it I don’t know why but two people strongly suggest I need to do it. Do you think its important for someone like myself with such strong RLS to do it at least once in there life time?



I know I will do the sleep study because maybe there now is something else neurologically going on with me besides my RLS. My RLS I have suffered, survived, and lived with for 28 years now and its been tuff. If its just RLS and PLMD thats expeted. On the other hand it could be a mix of something else which could be worse and need to be diagnosed and treated another good reason for me to do the study. I need to stay stong and do it for myself I need support.


I hope my posting and ?'s make some sense here? I am not all over the place and unclear? I always appreciate the support I get from this board.


Happy New Year everyone and good health.
Cheers

James

[badnights]

Hi James. The straighforward answer is to get a message to the specialist who's supervising the study. List the meds you take every night, and ask him if you should take them the night of the study. I had the same quandry! They should be more explicit but unfortunately the lines of communication are tangled and it's hard to get that answer. But do try!

That said, I can identify with your desire to have them SEE the way you suffer without the meds. I was miffed when my specialist said he didn't "see" any "restless legs" in my sleep study. My meds at the time were subduing the urge to kick but weren't relieving the sensations completely. He didn't get it.

It really comes down to why they're doing the study - why was it recommended? What was your complaint that prompted the suggestion you have a sleep study done? Are you feeling daytime sleepiness? I would think they're checking to see if there is something wrong besides the RLS, because RLS cannot be identified in a sleep study (though my specialist thinks he can "see" it !!!). Anyway, in reality RLS cannot be seen in a sleep study, so the only reason to have one is to look for other problems.

Sometimes the other problem is just insomnia, the fractured sleep that's often associated with RLS. They'll also look for breathing problems like sleep apnea, and other disorders of sleep that express themselves in brain waves, and of course PLMS. So if you think about it, it's important to have the RLS controlled while the study is being done, otherwise you won't sleep and they won't be able to tell if you have additional problems.

So you can go with that, if you can't get an answer from the person running the study. But I think you should try to get an answer. Does that sound reasonable?

[Betty/WV]

Hi James: I have had RLS for many many years. I recently had a sleep study, my doctor told me to take all my meds. And as beth told you a sleep study doesn't diagnosis RLS. It can PLMD and other disorders. It was found with my sleep study that I had sleep apnea. And I am now using a CPAP.

As for the sleep study being scary--not really. They made me as comfortable as possible, the room was very nice, private bath, TV etc. They gave me tea and crackers or what ever you want before bed. The next morning, you shower and they bring you breakfast. At least they did where I was. They observe you through out the night. And you can communicate with the techs whenever you want.

Wish you the best with your RLS. Let us know how your sleep study goes.

BETTY/WV