Advice needed

[Kimberly]

My sleep/wake cycle for over a year has been @ 8pm - 5-7am movement/torture time, 7am - 11-1pm sleep, 1pm - 8pm normal life. Lately, the movement/torture time is increasing, reducing the time I am able to live a somewhat normal life.

My problem has always been finding a med that will either 1) stop the movement and allow for a normal onset of sleep at @10pm.....or, 2) a med that is strong enough to knock me out and allow sleep in spite of the movement.

So far I have had no luck with either. I've been unable to find a med that will stop the movement and allow a natural onset of sleep (augment on DA's). And, the heavy duty drugs prescribed to put me to sleep in spite of the movement cause the movement/torture time to be unbearable and dangerous because it's difficult when all drugged up to do the wakeful activity needed to stop the movement (i.e., walk). The heavy duty drugs also cause, in addition to other things, daytime sleepiness which, obviously, sleepiness triggers daytime movement and ruins my only 'normal' part of the day.

Surely, I'm not the only one facing this......Is there a solution? I've had this condition for 30 years and this has always been my ongoing battle. The ONLY solution I see for me is a non-existant drug that will stop the movement. Yet I spend all my time trying to find a strong enough drug to put me to sleep in spite of it and dealing with the consequences of using it.

[ViewsAskew]

My situation is similar.

Right now I'm alternating DAs with the heavy opioids. It's not perfect, but keeps the opioids from building up and making me a zombie, and keeps the DAs from building up and causing augmentation.

Just so my schedule doesn't change much, I take Mirapex 4 nights and methadone 3 nights in the following pattern:

Thursday/Friday - Mirapex
Sat - methadone
Sun - Mirapex
Mon - methadone
Tues - Mirapex
Wednesday - methadone

If I get any inkling I may be augmenting, I immediately take the opioid 3-4 nights straight.

So far, I've been doing this for several months - at least 6 or more, but could be longer, and I've had no horrible problems. It does seem to mitigate the worst side effects of each and still allow me respite from the RLS.

[Polar Bear]

My situation is also similar. Symptoms for 30+ years, and now 24/7.
Fortunately I am still able to take the Requip although it is not sufficient and it is supplemented with tramadol, and I am medicated throughout the day. Otherwise I just would not function.

Sleep is a different issue. My meds help control my symptoms more or less, with some breakthrough which is horrible. Insomnia keeps me awake. My GP precribed my Zopiclone which was insufficient and now has me trying Circadin 2mg which is melatonin slow release and I believe is actually less potent than the Zop. But I am going along with him temporarily so my sleep diary will show the results. Sleep at present is around 3 - 4 hours per night (on a good night) fragmented. Sometimes it is only 1 hour.

None of my drugs are heavy duty but I do take them all the time, and any next day sleepiness and fatigue that I have I am assuming is literally lack of sleep.

The Circadin -Melatonin SR - is presumed to encourage the natural onset of sleep but doesn't do a lot for me in the dosage that I take.

The Circadin is a new drug specifically aimed at the over 55s.... don't think my doc realises that it isn't strong enough to fight chronic insomnia and the insomnia that is a side effect of some of the drugs.

I think that perhaps Circadin is not available in the US but melatonin is available tho perhaps not SR.

I empathise with you.... it is a long long night.

[Kimberly]

[quote="ViewsAskew"][/quote]

Wow Ann.....That's some schedule! Let me ask you this....with all that medication, what have been your results, exactly. Can you tell me what your sleep/wake schedule is like as I described in my post....i.e., number of torture hours, number of sleep hours, number of 'normal' (non-medicated) hours. I'm just curious to know how all those meds are helping.

[Kimberly]

My situation is also similar. Symptoms for 30+ years, and now 24/7.
Fortunately I am still able to take the Requip although it is not sufficient and it is supplemented with tramadol, and I am medicated throughout the day. Otherwise I just would not function.

Sleep is a different issue. My meds help control my symptoms more or less, with some breakthrough which is horrible. Insomnia keeps me awake. My GP precribed my Zopiclone which was insufficient and now has me trying Circadin 2mg which is melatonin slow release and I believe is actually less potent than the Zop. But I am going along with him temporarily so my sleep diary will show the results. Sleep at present is around 3 - 4 hours per night (on a good night) fragmented. Sometimes it is only 1 hour.

None of my drugs are heavy duty but I do take them all the time, and any next day sleepiness and fatigue that I have I am assuming is literally lack of sleep.

The Circadin -Melatonin SR - is presumed to encourage the natural onset of sleep but doesn't do a lot for me in the dosage that I take.

The Circadin is a new drug specifically aimed at the over 55s.... don't think my doc realises that it isn't strong enough to fight chronic insomnia and the insomnia that is a side effect of some of the drugs.

I think that perhaps Circadin is not available in the US but melatonin is available tho perhaps not SR.

I empathise with you.... it is a long long night.

Thanks for the reply. I'm trying to get a better understanding of how other people who take meds are coping. You are taking Requip, tramadol, and Circadin and still have daytime sleepiness and fatigue and are only getting between 1 and 4 hours of fragmented sleep....correct? With all those meds...how long does your 'torture' time last before you are finally able to sleep? How much worse do you think or know your symptoms would be if you took none of the meds? I ask because what you are experiencing is what I'm experiencing with no meds at all and no matter what meds I try, I'm seeing no improvement. thanks for helping me to understand.

[Polar Bear]

I don't know exactly what my WED symptoms would be like without my meds of requip and tramadol. But I reckon they would be utterly horrific. As it is I still get some breakthrough but this is generally because I have been a bit late in taking my medications. The breakthrough can be any time at all but usually the afternoon or evening.

My 'torture time' would not be because of symptoms, 'torture time'would be the time when I should be sleeping and when everyone else is asleep and I am awake. I do not have WED symtoms at this time.

For example, tonight I took my Circadin and
went to bed at 11.30pm, the same time as hubby. I do this even if not sleepy so as to keep a semblence of normality and routine.
At 1am I was still reading and so got up. Did some more reading downstairs and then onto the computer.
Back to bed at 2.30 as my eyelids were dropping.
Woke up at 3.45 and got up.
It is now 4.45 and I shall go back to bed.

My symptoms are definitely more manageable with medication and I would never go without it.

My insomnia is chronic, has been for years, but got worse one year ago when I started steroid medication for a different condition.

A side effect of the requip is insomnia, plus the tramadol is energising, However........ I would rather be awake because of insomnia, that be awake with wed/rls symptoms. Either way I am awake!!

I don't know how much worse my WED symptoms would be without the WED medication, and no way am I going to try to find out.

[badnights]

Hi Kimberley

So far as I know, there is no sleeping medication on earth that can overcome WED symptoms. If the WED is not controlled, there is no sleeping, period. As you've discovered, it's dangerous to take sleeping meds without the WED being controlled; you end up in a waking nightmare. Those are some of the most horrifying experiences I've ever had.

Have you tried anything besides the DAs? A lot of us don't react well to the DAs but do have excellent to acceptable control with other meds, mostly the opioid class.

Some people have success with anti-convulsants Neurontin/gabapentin and Lyrica/pregabalin. There's an extended-release anti-convulsant ,very similar to gabapentin, called Horizant, but no one has been using it for long.

I am taking hydromorph contin (an extended-release form of hydromorphone) which is quite effective. I have mild to moderate and sometimes severe daytime symptoms that I can usually deal with by standing up to work. Evenings can be bad, and I often lose all productivity during that time. About 60% of my evenings are mild, the rest are moderate to severe. When the drugs kick in (2 hr wait) I experience the very annoying side effect of becoming hyper-alert and ready to take on the day - at 10 PM.

Because of this, though there may be other reasons as well, my body can no longer maintain sleep at all. So I now have to take a mild sleeping pill (Imovane/zopiclone) as well (and god forbid I ever take it without enough hydromorphone in my system! - it still happens sometimes, then I get that waking nightmare).

I have no other discernable side effects from either drug. I sleep 7-8 hours, usually waking up 2-3 times and going right back to sleep. I would sleep longer most nights if I could get my butt to bed sooner. Occasinoally I have breakthrough WED and need to walk around for 1/2 hour. Occasionally my 1/2 zopiclone isn't enough (when my boyfriend is in bed with me) and I'm awake most of the night. I usually can't sleep in, sometimes because there are overt WED symptoms but other times just because (maybe the insomnia?).

I also have small amounts of Mirapex/pramipexole and Sinemet/levo-carbidopa in my arsenal. These are invaluable. The Sinemet is the only thing I have that's fast-acting, very useful for daytime naps when I absolutely have to sleep, and for nighttime breakthroughs, but it exacts a heavy price: rebound symptoms when it wears off after 4 hours.

The pramipexole is a god-send, and my back-up emergency life-saver. I can't take pramipexole only, because I would sleep my life away, but it does stop the symptoms. It is useful for breakthroughs when I can handle the 2hr wait. I also want to have it on hand for when this progressive disease progresses. I know I'll have to wait 3 months betweeen the time I'm sure my current presciption of hydromorphone is no longer enough and the time a doctor actually prescribes me more, and during that time I will have the pramipexole to keep me from shooting a hole in my head.

With the zopiclone and hydromorphone, I have a life. I'm about 75% of what I used to be. I am still tired most of the time, but every now and then I experience the same level of energy I used to have. (I was always way more energetic than everyone around me, so most people think my level of productivity is normal but I know it's not normal for me.) I just endured 3 years of being 20%, and taking drugs that made me augment, made me suicidal, made me sleep all day; I was a mess, so I'll take the 75% and charge into the rest of my life with that.

[sleepdancer]

I've gone thru several meds that have proved to have either limited effectiveness, diminishing effectiveness, or downright have an opposite effect. I am currently using a TENS Unit and my sleep is better than it's been in years - with no side effects. Not perfect, but after so many years of utterly miserable nights, even my bad nights now aren't miserable - just a bit restless. My next step in meds would have been narcotic types, but my daytime sleepiness was already rendering me non functional. Had I not stumbled upon the TENS being effective, I would have pursued an effective med(s), but for now I have stalled if not avoided that need. Everyone has to figure out what works them. We've GOTTA sleep!

[ViewsAskew]

Wow Ann.....That's some schedule! Let me ask you this....with all that medication, what have been your results, exactly. Can you tell me what your sleep/wake schedule is like as I described in my post....i.e., number of torture hours, number of sleep hours, number of 'normal' (non-medicated) hours. I'm just curious to know how all those meds are helping.

Synopsis: Because of the insomnia with the methadone, I rarely can move my sleep schedule to that approaching normal. I usually get to sleep between 1-3 PM on Mirapex nights and 3-6 AM on Methadone nights. I sleep 7-10 hours each night. I do not awaken with WED when I take Mirapex. I do awaken multiple times (3-5) with WED on methadone nights. WED during the day is controlled by staying focused on work and taking frequent short walks. Total torture time: 0-5 hours per week. Number medicated hours: About 10-12 daily.

Lengthy explanation
I'd say that the WED/RLS is 80-90% controlled. There are days where I only have a bit during the day when I'm not medicated and have none at all at night. The week before my period is a different story - then it's probably only 60-70% controlled.

The Mirapex removes 100% WED symptoms as long as I take it early enough. I now take it in small amounts over a several hour period, literally biting off bits of the tablets once an hour, until I've consumed the whole dosage. Keeping the amount lower but more constant in my system seems to work well for me in reducing some of the side effects I do not like, such as not being able to have an orgasm or having multiple songs playing in my head at the same time. Mirapex tends to cause me to awaken after 5-7 hours of sleep and then I have a very hard time going back to sleep. The first day I take it, this is mild. The second day, it's more pronounced. That's another reason I alternate the days, besides the augmentation issue. When I can fall back asleep, I only stay asleep for 2-5 minutes.

The methadone controls my WED about 90% during normal times, so I tend to awaken every hour or so with minor symptoms. I do leg lifts (WED shows up in my thighs more than my calves) until my quads are shaking and then I can fall back to sleep. Methadone tends to make me more tired, but only taking it one day isn't bad - I tend to sleep 9-10 hours if I don't need to be awake earlier.

The problem that is not controlled for me is that methadone has a paradoxical effect on me - it energizes me. So, at midnight I'm wide awake; I often can't get to sleep until 5 or 6 AM on the nights I take it. if I'm paying attention and get in bed no earlier than 50 minutes after I take it and no more than 1 hour and ten minutes after I take it, the WED is controlled and I'm not yet energized and I can get to sleep. But, if I miss that window, it's a fight.

[badnights]

Not to hijack the thread but a quick aside to Ann: It sounds bad in some ways, but it's so much better than where you were a few months ago.., is that largely attributable to the vit D?

[ViewsAskew]

Not in relation to the WED, Beth. I think it's just variable - hormones and perinmenopause seem to be making that part much more difficult.

Now, in terms of mood? And body pain? Definitely the D. For the last several months I really was a mess. I think most of my angst was over how to figure out what was causing the problems and if it was related to the WED or separate. Now I now it was separate.

[Ineed2stretch]

..... some of the side effects I do not like, such as not being able to have an orgasm

What! I didn't know Mirapex had sexual side effects! I thought it was me turning 50......

[ViewsAskew]

..... some of the side effects I do not like, such as not being able to have an orgasm

What! I didn't know Mirapex had sexual side effects! I thought it was me turning 50......

I have no idea if it happens to other people, but it definitely caused problems for me. I honestly can't remember if desire was a problem, but not being able to orgasm was hugely problematic. It was as if you were on that precipice and no matter how much time or energy was spent, you just stayed there.

Very dissatisfying!

Within a short time of stopping it, all was back to normal.

[cornelia]

On the other hand: dopamine agonists can have 'enhanced desire' as side effect too!

Corrie

[ViewsAskew]

On the other hand: dopamine agonists can have 'enhanced desire' as side effect too!

Corrie

I always wished it had been that way, lol....so did my husband