want to scream- doctor rant etc

[Andreadrea]

Hi guys. I haven't been around much because I was doing better. The iron supplementation seemed to be working. My neuro had given me klonopin, which I only took a couple times because it was so sedating. I know that benzos aren't part of the Mayo Algorithm, but it worked somehow. So after several months symptom free, they came back out of nowhere 3 days ago. I can't think of a reason, there does not seem to be a pattern. Now I'm back to staying up all night until 4 am or so, and I've called in sick three times this week. I contacted my neurologist to let him know and to see if I could get a few days of sick leave to try to fix this. He replied that RLS is not an indication for sick leave, and wanted to know why I won't take Mirapex or Requip. THis is the same doctor that said I could not possibly have augmentation after only a month on Mirapex, and pooh-poohed the involuntary muscle movements I had on Requip. I suspect if my Neuro slept only 2 hours, he might want to take the day off too! So I'm a little pissed off. I think I need to look into getting my HMO to assign me a new doctor (fat chance).

Basically I'm just frustrated and confused with this stupid disease. I'm used to things having cause and effect, patterns, making sense. I can't figure out what causes it to get better or worse. The meds the doctor gave me make me too drowsy to get up the next day, so I am missing work, and he won't give me a note for work. Luckily I don't have to work until 3 pm tomorrow, so I can take a klonopin tonight and actually get some sleep for a change. But man, my doctor really angers me. I've been in tears all morning because I feel stuck. I've missed enough work that I'm out of sick time, and I'm worried about losing the house I just bought. I know I should be grateful that my symptoms are intermittent, and that I'm still able to work, and that I bought a house. I am just having trouble seeing the positive, on this little sleep. Does anyone else have these fluctuations between being fine, and severe symptoms? Thanks for listening, I was kind of losing it.

[Polar Bear]

Losing it, sounds familiar....
I have never been able to come up with anything in particular that does or does not make my symptoms better or worse. Bottom line is that I have symptoms 24/7 and take meds 24/7. When I awaken in the morning from whatever sleep I have managed to get, the symptoms are there so having a 'lie-in' is never an option, even tho I am retired.

For you to have had relief from your symptoms and then have them bounce back is soul destroying, and combined with lack of sleep, it is difficult not to feel vulnerable and frustrated and in need of support from someone who should know how to provide this i.e. your doctor.

What about an email to Dr B. see what he says about your neurologist saying that augmentation on Mirapex after one month is not possible....

Has your Neuro discussed the Mayo Algorithm with you and the alternative medications? Do you think he would be accepting of the Algorithm. .... or taking note of any reply that you got from Dr B.

[Andreadrea]

I brought the Mayo Algorithm to my first and only visit with the Neurologist. He glanced at it, including the place where I showed him that you CAN augment on Mirapex, and then tossed it away. He was not interested, and does not seem to take this very seriously. I am going to call my HMO a little later and see how I request a second opinion.

[ViewsAskew]

Yes, do call the HMO. Very important to find someone else. I'd be furious with him, too.

My EkD/RLS has ALWAYS been very erratic - I think it's that way for most of us (except those in the 24/7 cataegory*), which is why we ascribe "cures" to anything and everything (it just stops when we had hot-n sour soup, so hot-n-sour soup must be what did it....) and why it's soooooooo hard to figure out.

*Now the the RLS is all day, every day, it has evened out a lot, but there are still some fluctuations. Meds that might control it completely today might work only 85% tomorrow or only 50% in 2 weeks, but then completely again for another 2 months. But, it doesn't usually stop working all together.

[dogeyed]

Oh, I do know the fear of missing work, but soon you will be back to work and all will be well, doctor's excuse or not, is my experience, even if they should perhaps treat you bad for a day or so. And if you lose this job over missing three days, well, you can always get another at McDonald's to make enough to pay that mortgage bill until you can get resituated in a better job that isn't so strict. My suggestion is also, of course, eventually get thee a new doc. For your doc not to give you an excuse is UNBELIEVABLE. So mean! I think if your work asks how come you missed, just be honest, tell them you have a neuromuscular condition in your legs, which a couple times a year can keep you awake for days at a time, and you can bring a couple of your last doctor's bills with you as an "excuse."

As for the Klonopin, timing can matter, so another thing to try is take one with dinner instead of bedtime and see if that helps. Another idea is cut back by 1/4 pill for a couple days, and then back to a whole pill, sometimes that helps. I take it for another illness, and while it is sedating, it can occasionally create sleep problems. But, of course, so too can RLS.

So, one way to go to sleep when RLS keeps you awake at night, is get some compression or support stockings, I use knee-highs, and sometimes when RLS acts up, I put them on right when I climb in the bed, and the way it holds the muscles tight allows me to fall asleep... I usually pull them off in the middle of the night without thinking and I still sleep. Also, sometimes anything with antihistimine in it can cause RLS to get worse, so if you took, say, Tylenol PM or allergy stuff, that's what probably did it to you this time. But as with all RLS people, it waxes and wanes, no way of knowing what it's gonna do.

Next time promise yourself to go into work whether you like it or not, just drag in, go slowly, take a quarter Klonopin if you have to, to keep calm thru the day, so that if you get a whole year in at work without missing, you will be a "regular" and forgiven any further time-offs that come up in the future.

[Andreadrea]

Dogeyed, my manager at work is aware of the RLS, and is sympathetic. I had a 3 week medical leave for this in the past (granted by a doctor that retired since then), so she knows it is "real". So I'm not so worried about losing my job, just stressed about missed wages because I have run out of sick time. With medical leave you can use vacation time, etc. I have dragged myself to work on 2 hours of sleep or so, but find that I can't do it on less. It is strange that when my RLS is acting up, I can function on 2 hours of sleep (barely), but when it is "dormant", I cannot function on that little sleep. But I think you're right, I should just drag myself into work. The more days I take off, the worse it seems to get. Luckily today and tomorrow I work evening shift, so I can sleep as late as my body will let me!

Viewsaskew- I too have attributed anything and everything to symptom increases and decreases. My head spins thinking of all the causes. "Well my symptoms are better today and I ate carrots yesterday, so carrots must be key!" Etc Etc. I guess people always want to know why something happens. One thing that seems to work for me is acupuncture, and I had missed a month of it due to life chaos. Perhaps I just need to get back to that.

[badnights]

Yes, go back to what worked! You're the only person I've heard of for whom acupuncture seems to have worked; you must have the right acupuncturist or something, But you were so convinced it was fixing you, so of course you should go back to it if at all possible, and see if you improve again.

It is strange that when my RLS is acting up, I can function on 2 hours of sleep (barely), but when it is "dormant", I cannot function on that little sleep.

I know what you mean. I'm convinced there's a hyper-alertness associated with the RLS symptoms, that no research has addressed. There was a proposal translated and copied here by someone in another thread a while back, but I don't know if that group got funded. At least they acknowledged the strange increase in alertness that seems to go along with EKD/RLS, at least for some of us. It's bloddy frustrating when you've finally gotten meds to subdue the abnormal sensations, and the urge to move, and you're still stuck with the hyper-alertness!

[cornelia]

I nknew there was some research done on this:


Sleep Med. 2009 Jan;10(1):134-8. Epub 2008 Jan 28.
Evaluating daytime alertness in individuals with Restless Legs Syndrome (RLS) compared to sleep restricted controls.

Gamaldo C, Benbrook AR, Allen RP, Oguntimein O, Earley CJ.
SourceDepartment of Neurology and Sleep Medicine, Johns Hopkins University, Asthma and Allergy Building 1B.75A, 5501 Hopkins

Abstract
BACKGROUND AND PURPOSE: Restless Legs Syndrome (RLS) is a common sensorimotor disorder often associated with significant chronic sleep loss. Previous studies looking at the effects of sleep loss on daytime function in RLS individuals, using subjective reporting techniques have yielded mixed results. In this study we used more objective measures of alertness and compared RLS subjects who are off treatments and chronically sleep restricted to chronic sleep-restricted controls.

SUBJECTS AND METHODS: The final sample consisted of 20 RLS subjects (10 male and 10 female) and 13 sleep-restricted controls (seven male and six female). Thirteen controls underwent a 14-day chronic partial sleep-restriction protocol in order to closely match the degree of chronic sleep loss reportedly experienced by untreated RLS patients. On the final day of the protocol each subject performed a morning and evening Suggested Immobilization Test (SIT) which served as a modified Maintenance of Wakefulness Test (MWT). RLS and control groups were compared for differences in alertness as measured objectively by the sleep latency on the morning and evening SITs.

RESULTS: The RLS subjects had a longer sleep latency on the morning and evening SIT than controls (t=3.80, p=0.001, U=31.0, p<0.001, respectively). Even after controlling for the potential arousal impact associated with increased leg activity, RLS individuals still demonstrated a higher degree of objective alertness (p=0.023, p=0.006, Fisher's exact test).

CONCLUSIONS: RLS subjects, despite having, if anything, greater sleep loss, displayed greater sustained alertness than sleep-restricted controls. Thus, the heightened degree of alertness demonstrated by RLS patients may be in contrast to the perceived impairment in mood, vigor, and vigilance commonly reported in previous studies.

Corrie

[sleepdancer]

Hmmmm. I guess one with RLS just could test as more alert because who can relax with RLS!?

[Polar Bear]

Hmm... I'm reading it as meaning that even if our rls symptoms are under control... if others get as little sleep as we get (even while symptoms are not active) we rls-ers are still more alert.

[badnights]

I read that study a while back, and was sorely disappointed with it. What a let-down. They used the inability of RLSers to fall asleep while holding themselves immobile as an indication of alertness. They didn't seem to understand the effect of the "urge to move" in their subjects. The urge will prevent sleep (d-uh).

They used a SIT to simulate a MWT, for some bizarre reason. In a Suggested Immobiolization Test the subject is told to stay awake and not move. In a Maintenance of Wakefulness test, the subject is given a boring, repetitive task in a shadowed room and told to stay awake. Can you imagine being in a SIT test with untreated RLS? It was designed to help discover if a person had RLS. Can you imagine falling asleep while trying not to move? The fact that they thought that was possible for an RLSer shows in my opinion that their study is flawed. Why on earth didn't they use a real MWT? At least then the results might have meant something.

They say they controlled for the possible wakening effect of "increased leg activity" by doing an additional analysis using only subjects who had no PLMs. This means they have assumed that limb movements are the disturbing thing about RLS. No, no, no, it's the URGE to move that's disturbing, and the sensations that go with it for most of us, not involuntary PLMs! (Not saying PLMs can't be disruptive when they get bad enough). You can't use the presence of PLMs to reveal the presence of the RLS urge to move, but that's what they did.

I might be missing things but I really think not. I'm dismayed, not only that the authors seem to be so ignorant of the disease they were studying, but that no one caught it and rebutted it. All they "discovered" in that study is that there's something keeping us awake. No news at all.

[dogeyed]

Andrea,
Glad it's just a wage thing and not loss of job, sorry I got mixed up! I agree with the others, acupuncture again might help.
GG

[Andreadrea]

Cornelia- interesting study. Although the last line irritates me, because it seems to belittle what we go through. "Thus, the heightened degree of alertness demonstrated by RLS patients may be in contrast to the perceived impairment in mood, vigor, and vigilance commonly reported in previous studies." Just because I can function on 2-4 hours of sleep at work, does not mean that I should have to do this. For example, I went to work on 3 hours of sleep on Saturday. I am an ER nurse, and I was working the triage area Saturday. While I survived the shift, there is no doubt that my lack of sleep affected my judgement. I made a few mistakes I normally would NEVER make. I was irritable and could not tolerate frustration the way I usually can (working triage at an inner city emergency room is quite annoying at times). My job performance was clearly impaired. I did not get in any accidents driving to and from work, but my reflexes were way slower. On the flip side, most of my coworkers that day said that there was no way they would ever try to drive or go to work, without 5, 6, one even said 9 hours of sleep!

Bethf- yes, the study is flawed for sure. A SIT test is not an adequate replacement for a MWT.

[cornelia]

Yes, I have gone through the same things you describe and eventually had to give up work completely because of RLS. Being a nurse makes the 'side effects' of RLS even more difficult to live with I suppose.
I also gave up driving completely, although I managed to get 6 hours of sleep most of the time. The quality of it was so bad that I was a danger on the road for others and myself.

Take care,
Corrie

[Betty/WV]

Andreadrea, and Cornelia: Just read your posts. I am 74 yrs. old have had RLS/EKD for so many years, maybe 40 or 50. Anyway, I sleep only about 3 hrs. a night. And I have functioned all these years like that. But I don't think I functioned very well, just made it through. Now, I am not driving which is terrible, because I have always been an independent person. The reason I'm not driving is that I have fallen asleep 3 times while driving. My neuro. says its simply because I'm sleep deprived. (No kidding?) So I'm waiting to go back to the sleep specialist to see what is next. I have been put on a CPAP machine and he wants to give it time to see if it helps my sleep. I am tired all day, and I'm sick and tired of feeling this way. I am on Mirapex which helps my EKD but one of the side effects of Mirapex is INSOMNIA> Isn't that weird.

BETTY/WV