Restless Legs Syndrome (RLS) Discussion Board

30 years on Clonazepam and 5 years on Pregabalin and I had my first sleep study. It's been offered since the first script and several times since but I always convinced them I've had life long RLS and there is no question to answer. It was an annoyance for almost 40 years and sleep was controlled during the end of my work years. My symptoms have changed, got worse and some would say that's not RLS, but its roots are. I call my condition severe RLS.

To please my wife and doctors, to some extent, I did a sleep study. Currently I have 3 neurologists. The Sleep guy, Script guy and a new one because I had what was probably a A Transient Ischemic Attack (TIA). I hope to make this Neurologist my new go to doc because he is young and sharp. Blood, EKGs, Brain MRI show nothing. Waiting results of Corroded Ultrasound. Scheduled for EEG, another Brain MRI and Cardiac Doc visit. Been a month and I feel fine but the wheels of medicine move slowly. Sleep study was scheduled for months before event. Doc told me to do study anyways.

I'm a 2 year throat cancer surviver and my Radiologist is the only one so far to say TIA. He says likely TIA from radiation scaring of corroded. Seems to check out online. Others want to run more and more tests.

Onto Sleep Study. Nice facility, murphy bed and very attentive Nurse. Hooked me up to dozens of electrodes. They fed into a master block that she would disconnect, put a loop over my head and I could walk down hall to use bathroom. I looked like hell in the mirror. Sleeping with blood oxygen pulse meter was not as bad as it initially appeared. I've been sleeping very good lately so I got some good sleep at least during a long third period. I sleep on stomach (brought my own pillow) turned to one side or the other. This actually worked and only pulled a few electrodes that were quickly resolved. Any time during the night I held up my hand, said her name and she was there in 30 seconds. At 5 o'clock she woke me up and I was on my way home in 30 minutes. Never saw her face behind mask but thanked her profusely. Only thing she said was good data, your legs were going crazy.

So my advise would be to relax, take it in stride and see the results. They are set up for people who don't sleep normal.

Hope they get data that helps you, Stainless.

You mentioned they woke you up at 5 AM. One thing I found so odd is that they seem to think ALL people go to bed at 9 or 10 PM. I NEVER go to sleep before midnight, and often it is later. They kept hounding me to go to sleep - I tried, but I couldn't sleep. I had symptoms that night and eventually fell to sleep around 4 AM. Then they woke me at 5 AM to take a shower and leave.

WHAT????? They had almost NO data, lol, so then they wanted to redo it. I told them the only way I would redo it was if I could go to sleep later and get up later. They were very confounded by that.

It seemed so odd to me that a place that deals with sleep disorders wouldn't understand that not all people are on a typical schedule.

Mine was great that way, Ann. Well, not great ( ) but much better than being woken at 5 AM. I think normally they got people up earlier but the doc left instructions to let me sleep til 8.

But the nurse or tech on overnight didn't seem to know anything about sleep disorders. I can't remember all the details, she was kind of mean and definitely ill-informed. I thought it wierd that they would leave someone in charge overnight who didn't have a clue about WED/RLS.

I discussed this with my neurologist/sleep doctor during our last visit. She wanted me to come to her lab in Denver (an hour away) for my test rather than go to a local sleep clinic. I pointed out that they would get me up at 5A and that with as little sleep as she already knows that I will get (this would be my fourth test for her), it would be too dangerous for me to try to drive through rush hour traffic to get home. I asked if they would let me sleep later and she said that they couldn't because the staff has to prepare for the narcolepsy tests that start later that morning. I told her that if she insisted on a study in Denver, that I would need to rent a hotel room for the night so that I could sleep until noon. She finally relented and moved my test to the local clinic with her same organization. At least I think that she has moved it because the lab still hasn't contacted me to set up a time.

I was surprised about the 5am wake up that no one told me before hand and concerned about driving an hour home. The strange thing is since I recovered from the assumed TIA it seems like the Cobwebs in my brain are cleared out. I'm sleeping very well, can remember things I stumbled on a few weeks before and 5 am was not an issue. I look forward to discussing with sleep neurologist and new local neurologist. RLS still bad but not to the extent it was before the event.

Stainless wrote: Tue Apr 01, 2025 12:51 pm I was surprised about the 5am wake up that no one told me before hand and concerned about driving an hour home. The strange thing is since I recovered from the assumed TIA it seems like the Cobwebs in my brain are cleared out. I'm sleeping very well, can remember things I stumbled on a few weeks before and 5 am was not an issue. I look forward to discussing with sleep neurologist and new local neurologist. RLS still bad but not to the extent it was before the event.

Inexplicable but heck, grab it and run with it!

I have had several sleep studies. Most of them I had a very hard time sleeping. One time the doctor gave me a sleeping pill and I was awake most of the night. They just don't get that our best sleep is later, not 5am. My last one I actually slept enough for them to get the results.

One time the doctor gave me a sleeping pill and I was awake most of the night.

When I had the second half of my first sleep study to both titrate my CPAP pressure and fit me with a mask, the lab tech knew that I didn't sleep well and gave me a dose of Sonata. He was amazed that I still didn't go to sleep and so he gave me a second dose around 1AM. I don't think that I ever did get to sleep that night. They were amazed that someone could take two doses of a sleep med and not fall asleep and this was a doctor who understood at least a little bit about RLS.

As for the 5AM "wakeup" time and moving my scheduled sleep study to a closer lab, they refused to delay the end of the test even though they know that I won't get good sleep. And, they finally scheduled my study after I had to call the lab to find out about the delay. Their first available appointment was Oct 1, six months out. I really don't know what my doctor hopes to accomplish with this. The only change is that my treatment for PTSD had dramatically reduced my REM Sleep Behavior Disorder, but none of my previous studies ever captured a REM Sleep Behavior event, so the absence of an event will tell her absolutely nothing and I will once again have to come home to get some sleep.

I had my follow up after my sleep study. Doc said I was kicking rapidly for long periods while asleep. Tell me something I don't know. He said I do not have sleep apnea. I'm sure I do have some on occasion (my wife has videoed it) but it is dwarfed by the RLS. He offered no solution but signed me up for another appt that I will soon cancel. I'm did this to satisfy my wife and doctors, now I'm done with it.

I asked about something to get me across the Atlantic for a Med cruise. I was really looking for suggestions but he prescribed 2 ambien pills, one for the flight over and one for e return flight. I picked them up but don't think the first time to test drug interaction is not when I'm half way over the Atlantic. I'll talk to my other neurologists.

Lastly I told him if I was in California I would probably be on something like Buprenorphine. He said that's not going to happen in Florida. Just wanted to verify. So much for the sleep study I waited 30 years for.

He said I do not have sleep apnea. I'm sure I do have some on occasion (my wife has videoed it) but it is dwarfed by the RLS.

If you are a physically small male and not overweight, there is a form of sleep apena that almost all sleep labs do not test for. It is called Upper Airway Restriction Syndrome (UARS). With UARS, your AHI stays below 10 and your oxygen levels above 92, which are the criteria for normal sleep apnea. However, each UARS even causes a microawakening, which will appear in the detailed results of your EEG during the night. UARS can often be treated with CPAP, just like regular apnea, but insurance will not cover it because they don't recognize it. Does all that sound hauntingly familiar?

UARS is not life threatening like sleep apnea because your oxygen levels stay good. The main problems with it are that all the microawakenings cause broken sleep, so you are not as rested in the morning and you snore just as much as someone with regular apnea.

UARS is primarily an issue for people with narrow jaws. The tongue slips back into the throat, which is what causes snoring. But with UARS, the individual wakes almost immediately and the tongue pulls back into position and then you immediately fall back asleep without realizing you just woke for a second.

When you get your results, look at your time in each sleep stage and your number of awakenings during the night. If you have a large number of awakenings and a minimal time in Stage 5, those are signs of UARS.

stainless wrote:he prescribed 2 ambien pills, one for the flight over and one for e return flight.

You probably know this, but I'll get on my rant anyway in case other people don't know it: never take ambien or any sleeping pill when your WED/RLS is untreated. In other words, ambien will be useless for the flight (unless you have some oxycodone or even Sinemet to use to control the symptoms first).

These doctors ought to realize that we can't sleep because of the urge to move, which is related to sensory abnormalities that are completely unaffected by sleeping pills. Giving us sleeping pills is dangerous because we keep on walking around to relieve the WED/RLS symptoms in a groggy, sleepy state; plus the relaxation induced by the sleeping pill triggers the WED/RLS, raising the intensity of misery. Double whammy.

I wonder if you can leave Florida, Rick?

This doctor is a sleep specialist recommended by Mayo where he used to work. I assume he understands I'm going to continue to take Clonazepam and Pregabalin during the flight. My concern is adding Ambien to the mix for the first time when flying over The Atlantic. I've never had a bad reaction to meds but... Very disappointed this sleep specialist had nothing to offer but I'm used to it after 30 years of medication.

I'm going to fire 2 of these 3 neurologists and keep the young, articulate, local one who is blunt about what he can and can't do in Florida. Too dry in Colorado and too expensive in California so I guess I am destined to spend my last years here hoping for a miracle cure.

Well, I'll just re-iterate that the Ambien has the potential to make things worse. Based mostly on my personal experiences, I think you should make sure your other meds have the WED/RLS largely under control before you take it. I hope it works out well for you! The best solution might be to just get up and walk the aisles, hopefully it's a smooth flight and walking is allowed.