Need help getting treatment

[achoden]

I am a 65 year old woman who was diagnosed with RLS in September after taking part in a sleep study at a Kansas City hospital. The doctor prescribed PRAMIPEXOLE, starting with 0.25 MG titrated to 0.75 MG TABLET over one month. I did not get any relief from the medication and wake up several times during the night. I called the doctor's office and explained the problem. The doctor through his nurse told me to stop taking the drug and that it was not abnormal to wake up several times (2-3) during the night and I should come in for an appointment in one month. He does not have any time to see me before then. I have been waking up several times during the night and falling asleep at work.

Should I go without treatment and wait a month before I can see the doctor. What are my other options since this condition is affecting my life and work?

Thank you.

[Polar Bear]

Welcome to the Discussion Board.
First thing that comes to mind is that your doctor prescribed the pramipexole starting at .25mg and titrated up to .75mg.
Were you instructed first to see if the .25mg helped, or .5mg helped before going to the .75mg. I ask because 1mg is now considered to be a max daily dose.
However, the end result is that you didn't get any relief from the medication. Was there no relief at any level.
I have read that a good way to diagnose WED/RLS is to find out if a DA medication helps.

Also, if you took the pramipexole for one month and then doctor told you to come off it, did you stop it cold turkey, or wean off it.

It's a shame that your doctor cannot see you for another month - is this the sleep doctor?

Unfortunately it can be a side effect of DA medication (pramipexole is a DA) that sleep becomes difficult.

Were you sleeping through the night before starting on the pramipexole.
Were you getting to sleep without difficulty.
Please tell us a little more of how your symptoms are affecting you.
Do they occur only at night.
When do the symptoms start.
Any day time symptoms.
How long have you been suffering from WED/RLS.
Does 'walking off' the symptoms provide relief i.e. does movement help.

If you are waiting to see the sleep doctor, I wonder if your GP could help you in the meantime.
Indeed many of us find that a good GP is our best friend. If he is willing to learn about WED/RLS and work with you it can be a blessing. Printing off good information about treatment option, for discussion with your GP, could be an option. If you go to the Just Joined section and to the thread 'A good place to start' you will find really useful links which could help guide you and your GP.

[ViewsAskew]

i would echo Polar bear's question - did you never get any relief?

I'd also ask - what time of day did you take it versus what time of day do symptoms start? It takes about 90 minutes for pramipexole to work and it is MUCH more effective if you take it prior to symptoms starting.

And, Polar bear's question about RLS/WED itself and how you experience it: Does movement help when you have symptoms?

[achoden]

Thank you for your reply. I will try to answer your questions the best I can.
>Were you instructed first to see if the .25mg helped, or .5mg helped before going to the .75mg. I ask because 1mg is now considered to be a max daily dose. Yes.
>However, the end result is that you didn't get any relief from the medication. Was there no relief at any level. NO
>Also, if you took the pramipexole for one month and then doctor told you to come off it, did you stop it cold turkey, or wean off it. Told to stop cold turkey.

>Were you sleeping through the night before starting on the pramipexole. NO. I went through a Sleep Study because I couldn't sleep through the night.
>Were you getting to sleep without difficulty. Yes
>Please tell us a little more of how your symptoms are affecting you. I wake up two or three times during the night and when I finally get up I'm exhausted.
>Do they occur only at night. Yes
>When do the symptoms start. At roughly 1:00 a.m. Then go back to sleep. Wake at 3:oo. Sleep. Wake at 5:oo. Get up at six.
>Any day time symptoms. Never
>How long have you been suffering from WED/RLS. Don't know. Diagnosed after several months of insomnia and sleeping pills didn't work.
>Does 'walking off' the symptoms provide relief i.e. does movement help. That's the odd part. My only symptom is I move my legs 20 times/per hour according to sleep study. No other symptoms in my legs.

>If you are waiting to see the sleep doctor, I wonder if your GP could help you in the meantime.
Indeed many of us find that a good GP is our best friend. If he is willing to learn about WED/RLS and work with you it can be a blessing. Printing off good information about treatment option, for discussion with your GP, could be an option. If you go to the Just Joined section and to the thread 'A good place to start' you will find really useful links which could help guide you and your GP. I see a psychiatrist and he had prescribed sleeping pills for me before the sleep study. The pills didn't stop waking up at time and left me groggy in the morning. He prescribed Clonazepam to help me go to sleep.

I took the pramipexole 2 hours before bedtime.

One more comment: When I wake up in the morning, my top sheet and blanket are on the floor from all the tossing and turning during the night.

[ViewsAskew]

It sounds to me as if you do not have RLS/WESD, but rather have periodic limb movements.

RLS/WED is felt while you are awake (though some of us may feel them during sleep, it's different). You feel icky, uncomfortable, electrical, or painful sensations in your limbs. At the same time, you feel as though you MUST move. You walk, exercise, do yoga - whatever - to MAKE those sensations and that need to move go away.

PLMs occur during sleep. They may have no effect, or may make some of us very tired over time. Sometimes we wake up, unaware of why we are awake. Other times we are not aware of how many times we were taken out of sleep.

The problem - to me - is that the doctors do not know much about PLMs. And, as a patient (I have them, too), you just cannot tell if the medication is helping as easily as you can tell if your RLS/WED is gone.

It is very possible that the pramipexole did help (and you might even need less than your starting dose) but that side effects were awakening you. You can't know without a sleep study or someone to watch you sleep and determine if you are moving.

[achoden]

Yes, I was wondering why I had been diagnosed with RLS since I didn't have a lot of the symptoms I had read about.

I had a sleep study in September and that was the diagnosis. They took a video of me sleeping in addition to all the monitoring that was being done electronically. Looks like the doctor will have some explaining to do when I see him next month.

I haven't taken any pramipexole since Thursday night and no other sleep medication (except for clonazepam, which I was taking before the sleep problems started). This weekend, I went to bed an hour or two later than I normally do to see if it would make any difference. I woke up fewer times than usual and woke up and got up at 6:00 am which is my normal waking time during the week. I was not groggy as I usually am when on sleep medication. I will continue this and see how I feel during the week and record my waking times. Hopefully, I will either see some improvement or I will have some other symptoms to report.

Thank you so much for your opinion. I will post a message on how I'm doing later this week.

[Polar Bear]

I agree with Viewsaskew - you just do not appear to have the criteria for WED/RLS and I'd suggest that you do a bit of research on PLMs (Periodic Limb Movements) and see how much you relate to that information. You will then be in a better informed position to discuss your symptoms with your doctor.

Good luck with your sleep.

[ViewsAskew]

Because you do not have RLS/WED and you do not have any other sleep disorder - they may diagnose you with PLMD. People with other sleep disorders who kick in their sleep have PLMs. But when the kicking is teh ONLY thing you do, it's considered a disorder on its own - periodic limb movement disorder.

These movements used to be called myoclonus. Sometimes people will still refer to it that way.The problem, as I noted above, is that is is VERY hard to know if it is working because we do not know if we are moving or not.

per the pramipexole, less is more! If you do try it again, you may want to try no more than .125 mg.

[achoden]

Yes, I was wondering why I had been diagnosed with RLS since I didn't have a lot of the symptoms I had read about.

I had a sleep study in September and that was the diagnosis. They took a video of me sleeping in addition to all the monitoring that was being done electronically. Looks like the doctor will have some explaining to do when I see him next month.

I haven't taken any pramipexole since Thursday night and no other sleep medication (except for clonazepam, which I was taking before the sleep problems started). This weekend, I went to bed an hour or two later than I normally do to see if it would make any difference. I woke up fewer times than usual and woke up and got up at 6:00 am which is my normal waking time during the week. I was not groggy as I usually am when on sleep medication. I will continue this and see how I feel during the week and record my waking times. Hopefully, I will either see some improvement or I will have some other symptoms to report.

Thank you so much for your opinion. I will post a message on how I'm doing later this week.

Update: I am still suffering from RLS/PLMD. My sleep doctor has taken me off pramipexole and is unable to see me until Dec. 10. I contacted my primary care doctor who referred me to the sleep doctor and told her about the situation. I asked if she would order lab tests to determine if I have an iron deficiency, maganesium def., etc.that might be causing the symptoms. She deferred to the to sleep doctor. I thought I could go back to her as my primary care doctor for help, but that proved not to be the case. I am continuing my current sleep schedule, but some nights are really bad. I am also falling asleep at work. Any suggestions on self-care for PLMD until I can get to see the sleep doctor?

[ViewsAskew]

It's highly unlikely that you have too much iron in your body - it's likely safe to take oral iron. It doesn't often help quickly, but some people find it does.

Other than that, the only suggestion I have it to take a teensy amount of the pramipexole. I have cut a .125 tablet into 4 pieces before and found that it is helpful. Your doctor prescribed MUCH too much of it. Another option is to write to Dr Buchfuhrer. Sometimes something from a well-respected expert can encourage a GP to help. My guess is that the sleep doctor isn't your best resource - this is my opinion, but I wouldn't want to see someone who knows less than I do. That the doctor prescribed such a high dosage, that the doctor didn't call it by the right name - that the doctor won't help you even though you NEED it now - those things make me mad for you!

With info from Dr B, you could go back to your GP and say that you understand his/her position but that an expert in the field has given you differing advice and you are not sure the sleep doctor is the right person to see. The GP might either help, or help you find a new specialist. Either might be better.

[Polar Bear]

You can contact Dr B at somno@verizon.net.
He is very good with responses and is direct and plain speaking.

[achoden]

I will try a small dosage of pramipexole and see if that helps.

Thanks for the advice and information.

I have a appointment with my psychiatrist next week who knows about my condition and may be able to refer me to another sleep specialist for consultation. I'm very disappointed with my GP. Although I can understand why she wouldn't want to provide treatment that might be conflicting with the sleep specialist, I think she could have at least offered to contact him for me since she referred me to him in the first place.

I'll post a follow-up next week.

[ViewsAskew]

Here's hoping it helps.

The sad truth is that there just isn't much info about PLMD or PLMS that interrupts your sleep cycles.

The best thing your doctor could do, in my opinion, is to send you home with a monitor to wear in bed for a week. You'd have an idea, then, how the medication was working.

It could be that you're just tired - from years of not sleeping - and it will take awhile to feel better. There also could be something else going on. Without more data, the doctors may not be able to tell what is happening.

[achoden]

Thanks for the support.

Took .25 mg pramipexole 2 hours before bedtime (9:30) last night after being off the drug for a week. Wanted to see if symptoms improved, stayed the same, or got worse.

In short, I ended up having a bad night, waking up and getting out of bed to use the bathroom three times. Finally, woke up at 5:20 am and got out of bed for good (normal wake up time is 6:00). Felt restless and exhausted and needed about 30 minutes of just resting until I was alert enough to get ready for work. Not sure if taking the pramipexole caused sleep interruptions.

In any case, I am going to completely stop taking the drug and will see my psychiatrist for a routine med check on Monday,17th and tell him how this problem (RLS, PLMD or whatever it is) has affected my mood over the past few weeks. He may have some suggestions of what to do until I see the sleep specialist on Dec. 10.

Does anyone else suffer from anxiety and depression in addition to RLS/PLMD?

[ViewsAskew]

I think the research shows that we are 15 times more likely to have an anxiety disorder and 2 or 3 times more likely to suffer from depression than people without WED/RLS. PLMD is different. It really isn't studied.

The movements in sleep are often related to RLS/WED, apnea, and other sleep disorders. Because so many people have them and are not bothered, I don't think the researchers cared much about them. Only a small fraction of people ONLY have the movements, which is then called a disorder in and of itself.

But, it makes sense to me that people with any of these issues would suffer anxiety and depression. We know that WED is related to dopamine, opioid, and GABA disturbances/disruptions. Whenever the brain's chemistry is variable, it's extremely likely that these type of problems will occur.

Pramipexole causes side effects for me. For what it's worth, I had sleep disturbances for about 2-3 weeks before it all settled down. It could be that your body is adjusting. I still think that .25 is much too high of a starting dose and is likely to cause side effects. I'd take one quarter or one half that instead.