Need help getting treatment

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achoden
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Joined: Sat Nov 08, 2014 2:14 pm

Re: Need help getting treatment

Post by achoden »

I'm still not sure what my disorder is. All I know is that I don't have a lot of the symptoms that are described for RLS (the sensations in the legs for example.
When I first started taking it, I didn't see any difference in my sleep. Still had the same symptoms I had before.

What kind of sleep disturbances did you have from Pramipexole?

badnights
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Re: Need help getting treatment

Post by badnights »

and tell him how this problem (RLS, PLMD or whatever it is) has affected my mood over the past few weeks.
It;s actually probably the lack of sleep that is affecting your mood, not the movement problem itself. (Although it is true as Ann says that a lot of WEDers have anxiety and depression that does not appear to be caused by the WED, but travels with it somehow. But you implied that your mood was OK before these sleep issues.)

I wish I could help you, but I don't know much about the trials and tribulations of dealing with PLMD (if that's what you have :) ). I hope you can get a new sleep study arranged, while taking pramipexole, to see if it actually is helping; then armed with that knowledge, a plan can be formed.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

ViewsAskew
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Re: Need help getting treatment

Post by ViewsAskew »

achoden wrote:I'm still not sure what my disorder is. All I know is that I don't have a lot of the symptoms that are described for RLS (the sensations in the legs for example.
When I first started taking it, I didn't see any difference in my sleep. Still had the same symptoms I had before.

What kind of sleep disturbances did you have from Pramipexole?


We know from the study that you definitely have movements. And, we assume that the sleep doc read the study correctly and that these movements are keeping you from getting "good" sleep. By that I mean that you do not get enough REM or deep sleep, most likely. It's the WED/RLS that we aren't sure about.

When you are tired or sleepy or after you try to fall asleep, do you feel an urge to move? Some people would describe it as an anxiety in the body - but you feel you MUST get up and move - walk, run, ride a bike, do yoga - anything!

Per me, I had PLMs for many years before I took the pramipexole. I was SO tired when I saw the doctor. I was awake as many as 30 times a night and would sleep up to 12 to 14 hours and still be tired. I could always immediately fall back to sleep (it wasn't insomnia). I rarely had WED, so I didn't really care about it.

When I took the pramipexole that first week, I had lucid dreaming. I was dreaming - vividly - but aware of it and sort of awake. It was such a strange feeling. My sleep felt very strange and fractured and I was awake multiple times. I didn't sleep any better and didn't feel any better. Additionally, I developed an odd tremor in my hands that scared me. I tried it for a week and my doctor told me to increase it to .50 mg because I said I didn't know how to tell if it was helpful. After a few days of taking the increased dose, I wrote to Dr Buchfuhrer. He told me my dose was too high and that I should take .125 at the most, or even try cutting a .125 in half. So, I took .0625. It took about 3 weeks for me to acclimate to it and for the lucid dreaming, awakenings, and tremors to go away.

At that dose I found that I did sleep through the night more frequently and was rarely awake. It actually knocked me out - I had to be in the house 90 minutes after I took it because I would literally fall asleep no matter what I was doing (including one time during sex). Over time, however, the drug caused more and more side effects for me, the worst being augmentation. I rarely had RLS/WED before I took it. Within a week of taking it, I had WED every day.

I hope the doctor will work with you to find a solution. It's hard (at least to me) when they do not tell you what they are thinking and explain things. My first doctor was much like yours, it seems.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

achoden
Posts: 13
Joined: Sat Nov 08, 2014 2:14 pm

Re: Need help getting treatment

Post by achoden »

It's actually probably the lack of sleep that is affecting your mood, not the movement problem itself. (Although it is true as Ann says that a lot of WEDers have anxiety and depression that does not appear to be caused by the WED, but travels with it somehow. But you implied that your mood was OK before these sleep issues.)


I agree, it's probably the lack of sleep that is affecting my mood. I've become irritable, impatient, get angry at small things at work, become argumentative, etc

Before the sleep issues, I was being treated for anxiety and depression by a psychiatrist and the medication was working. The anxiety and depression were under control. I discussed whether the medication was causing my sleep issues and he prescribed sleeping pills. None of them worked. I had the sleep study and started on the Pramipexole which didn't work and the doctor increased the dosage. My sleep issues didn't improve and my mood worsened. I have an appointment with the psychiastrist on Monday for a med check and to discuss the mood change.

achoden
Posts: 13
Joined: Sat Nov 08, 2014 2:14 pm

Re: Need help getting treatment

Post by achoden »

When you are tired or sleepy or after you try to fall asleep, do you feel an urge to move? Some people would describe it as an anxiety in the body - but you feel you MUST get up and move - walk, run, ride a bike, do yoga - anything!


No, I don't. I'm not aware of my legs moving when I sleep. I wake up suddenly but don't feel that I have to move; I just have to go to the bathroom. Then I get out of bed, go to the bathroom and then I go back to sleep until it happens again and again, until it is time to get up. When I arise, I feel exhausted and anxious.

If I don't t feel the urge to go to the bathroom, I just lie in bed awake and toss and turn until I fall back to sleep.

ViewsAskew
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Re: Need help getting treatment

Post by ViewsAskew »

achoden wrote:
When you are tired or sleepy or after you try to fall asleep, do you feel an urge to move? Some people would describe it as an anxiety in the body - but you feel you MUST get up and move - walk, run, ride a bike, do yoga - anything!


No, I don't. I'm not aware of my legs moving when I sleep. I wake up suddenly but don't feel that I have to move; I just have to go to the bathroom. Then I get out of bed, go to the bathroom and then I go back to sleep until it happens again and again, until it is time to get up. When I arise, I feel exhausted and anxious.

If I don't t feel the urge to go to the bathroom, I just lie in bed awake and toss and turn until I fall back to sleep.


That is classic PLMD behavior - not RLS/WED behavior. You do not have to have the sensations to have WED, but you do have to have an urge to move. Without it - not WED/RLS.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

badnights
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Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Need help getting treatment

Post by badnights »

I have no personal experience with PLMD; and my PLMs are obscure to me although apparently I have them.

achoden wrote: I discussed whether the medication was causing my sleep issues and he prescribed sleeping pills. None of them worked.
achoden wrote:I wake up suddenly but don't feel that I have to move; I just have to go to the bathroom. Then I get out of bed, go to the bathroom and then I go back to sleep until it happens again and again, until it is time to get up. When I arise, I feel exhausted and anxious.
If I don't t feel the urge to go to the bathroom, I just lie in bed awake and toss and turn until I fall back to sleep.

What you're experiencing seems identical to the hyperalertness that afflicts many (all?) WEDers (certainly me). This wide-awakeness beats the snot out of sleeping pills, and wakes me up even when the WED itself (the urge to move) is silent, multiple times nightly for no apparent reason.

Do you feel as if you never sink into deep sleep, that you are always sleeping lightly?

Ann, when you had PLMD without WED, did you have that nighttime hyperalertness? Or was the awakening then different somehow?
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

achoden
Posts: 13
Joined: Sat Nov 08, 2014 2:14 pm

Re: Need help getting treatment

Post by achoden »

What you're experiencing seems identical to the hyperalertness that afflicts many (all?) WEDers (certainly me). This wide-awakeness beats the snot out of sleeping pills, and wakes me up even when the WED itself (the urge to move) is silent, multiple times nightly for no apparent reason.

Do you feel as if you never sink into deep sleep, that you are always sleeping lightly?


Yes, I would describe it as hyperalterness. When I wake up, I feel like I've just had a shot of adrenaline.

I don't know if I ever go into a deep sleep. I feel like I close my eyes at 10:00 p.m. and the next thing I know, I wake up suddenly several times during the night and realize I'd only been asleep for an hour or two. The night seems endless.

badnights
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Re: Need help getting treatment

Post by badnights »

I wish I knew more about whether other people with PLMD (not WED) felt that hyperalertness (sleepdancer??). I assumed it was more an issue of the movements themselves waking a person up, but maybe there is something more going on, similar to or the same as what's going on in WED.

How are things, have you seen the psychiatrist? Did he have anything to suggest regarding the lack of refreshing sleep?
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

achoden
Posts: 13
Joined: Sat Nov 08, 2014 2:14 pm

Re: Need help getting treatment

Post by achoden »

How are things, have you seen the psychiatrist? Did he have anything to suggest regarding the lack of refreshing sleep?


Yes, I saw the psychiatrist and he recommended that I take a low dosage of a mood stabilizer to help with the anxiety symptoms caused by lack of sleep until I can see the sleep doctor. This medication is sedating and has reduced the number of times I awaken during the night. The problem is that I feel hung over when I get up in the morning. But I can stop taking the medication at anytime if I feel it is too sedating.

NEW DEVELOPMENT: Yesterday, I received a referral to a neurologist from my primary care doctor for a second opinion on my sleep disorder. (Why she didn't do this sooner, I have no idea.) I was lucky to get an appointment on December 1 and will have a copy of my sleep study records transferred to him.

ViewsAskew
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Re: Need help getting treatment

Post by ViewsAskew »

badnights wrote:I wish I knew more about whether other people with PLMD (not WED) felt that hyperalertness (sleepdancer??). I assumed it was more an issue of the movements themselves waking a person up, but maybe there is something more going on, similar to or the same as what's going on in WED.


I had PLMs for years without WED. And, for the first 15 years with PLMs, I had WED very rarely. I do not remember the alertness. Even with mild WED, I do not remember alertness. In 2004, I went for help because of the PLMs. At that time, I would wake up, think I needed to pee, go to the bathroom, go back to sleep.

There were times I couldn't sleep when I'd first go to sleep. In retrospect, it wasn't the alertness of WED, it was typical insomnia - mind whirling, worrying, thinking about what I needed to do, etc. I do not remember waking up in the night and not being able to go to sleep. And, I never remember the strange alertness of WED. It's completely different, in my experience.

The alertness didn't happen, for me, until I the WED was severe. That could just be my experience, too.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

badnights
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Re: Need help getting treatment

Post by badnights »

I think my alertness evolved, too. It snuck up on me. It got worse - more blatant - when I started opioid medications.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

ViewsAskew
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Posts: 16571
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Need help getting treatment

Post by ViewsAskew »

badnights wrote:I think my alertness evolved, too. It snuck up on me. It got worse - more blatant - when I started opioid medications.


People who take opioids for other reasons discuss this. I think it's just worse for us.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

achoden
Posts: 13
Joined: Sat Nov 08, 2014 2:14 pm

Re: Need help getting treatment

Post by achoden »

achoden wrote:
How are things, have you seen the psychiatrist? Did he have anything to suggest regarding the lack of refreshing sleep?


Yes, I saw the psychiatrist and he recommended that I take a low dosage of a mood stabilizer to help with the anxiety symptoms caused by lack of sleep until I can see the sleep doctor. This medication is sedating and has reduced the number of times I awaken during the night. The problem is that I feel hung over when I get up in the morning. But I can stop taking the medication at anytime if I feel it is too sedating.

NEW DEVELOPMENT: Yesterday, I received a referral to a neurologist from my primary care doctor for a second opinion on my sleep disorder. (Why she didn't do this sooner, I have no idea.) I was lucky to get an appointment on December 1 and will have a copy of my sleep study records transferred to him.


Update: Have stopped the mood stabilizer because it was too sedating, even at low dosage. Back to bad nights. Got up this morning exhausted with painful TMJ, neck pain. I grind my teeth at night. Could there be a relationship between the PLMD and TMJ? Will discuss with sleep doctor on Dec. 1. Getting by on clonazepam and Ibuprofen until then.

Anybody else have PLMD and TMJ?

ViewsAskew
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Re: Need help getting treatment

Post by ViewsAskew »

A lot of us grind our teeth.

For what it's worth...I have neck and headache pain - turned out to be something called myfascial trigger points - these can mimic TMJ, as I understand it. Not saying this is what you have...just something I've noticed. Mine is greatly exacerbated by poor sleep and by some medications.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

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