RLS after surgery

[branti]

Thanks for all the replies. It would be interesting to find someone here in BC. & even better if they were on Vancouver Island. I have exchanged a few e-mails with Dr. B. & understandably he can't really say too much but he did suggest getting off the Elavil & being careful with how much Mirapex taken to avoid augmentation. I have to say I was very impressed with how quickly he responded & the obvious concern.

Last night was another long uncomfortable one. I'm still playing around with the amount of Mirapex but now am going to try & be more focused on when I take it. Not sure how much that plays into it but have to try something. Anyone know if timing makes a differance? I don't want to start taking opioids as I just got off Morphine & then Oxycodone.

[ViewsAskew]

Hmmm, just getting off of opioids may be one of the reasons you have increased symptoms. They completed cover symptoms in large enough doses, so that could be related.

Keeping a low dose of Mirapex is definitely important. Between that and 100 or more of ferritin, and augmentation is much less likely.

If you were on the Elavil prior to Mirapex and noticed no increase, it's not likely an issue. But, if it was added after, it could be. It doesn't bother everyone, but definitely bothers some.

Timing does make a difference. It takes about 90 minutes to work, longer if you take it with food. Once you get "behind" the symptoms, the harder it is to compensate.

I also found good results splitting doses. I'd take 1/4 of my dose at least 2 hours before it would normally start, then take the remainder a couple hours later. It covered me a bit longer on the front end. I rarely had symptoms toward the end of the sleep cycle at that time, so I didn't need to have the full dose in my system at 4 or 5 AM, but did need to stay in front of it.

My new meds are kicking in - hope I explained that well...if it doesn't make sense - ask what I meant!

[branti]

Viewsaskew, I understand what you're saying & appreciate hearing how someone else times their meds. I spead the Mirapex out last night...1/2 at 6:30 pm, then 1 at 8:00 pm & then 11/2 at bedtime. Could be a coincidence but I did manage to get a good night's sleep. I also went to the Health Food store today & picked up some extra Magnesium plus a Vit. B complex as I've read that can also make a differance. At this point I'm willing to try anything (including having a bar of soap at the end of the bed). No opioids though!
Now that you asked, yes I was on the Elavil prior to the Mirapex, so that's okay then.
I hope you're doing okay with your meds. Haven't been able to read everyone's posts so not sure what you're dealing with, sorry. I do appreciate you taking the time to help me.
Rthom, by any chance have you heard of anyone in BC who might be good with RLS?

[ViewsAskew]

Glad my reply made sense - the Horizant makes me very sleepy and once it hits, I sort of have to go to bed. Unfortunately, it's the only benefit so far!

Hope the spacing it out wasn't a fluke and that is continues to help.

Per the magnesium and B complex - research shows that it only helps if your deficient...but most of us don't have clue if we are. Likewise, several of us have noted that when our D is low (and most of us are low), taking D seems to help, too. It's doubtful yours would be high given where you live. Could be worth trying.

One of the hardest things for those of us on the more severe end of the scale, symptom wise, is what do we do when the dopaminergics stop working. And, stop working they seem to do. It's rare to see anyone using them for many years. And, even when you've managed years, the stupid augmentation can still occur - one of our most recent members is going through that now. Many of us don't want to use opioids, some of us are alcoholics or have other addiction issues and are terrified of them, and none of us wants the attached stigma. I do hope they identify new alternatives soon.

[rthom]

Branti
Glad to hearyou got some sleep. I have sent the message requesting the name of the dr. No response yet. I will let you know as soon as I hear--I do check several times a day--if I don't hear by monday I will re-request. The person who knows is reliable so something must be up in their lives--maybe gone away etc... Sorry for the wait but I'll kee on it for you. Have a great day.

[branti]

Thanks rthom, appreciate you doing this. In Canada we are severely limited to expert consultations, can sometimes take up to a year. But to get the name of someone would still be invaluable.
Last night was another bad one so will continue to try different schedules. It would be so nice to have more direction but until I get a Dr. who really understands that's not going to happen.

[branti]

Just an update...still trying various times to take my Mirapex to try & get ahead of these ^symptoms since my surgery. The last 2 nights I've taken 1.5 Mirapex at 7:30 pm & repeat 1.5 at bedtime. Other than a bit of tingling in my toes (which my husband relieved with massage) , I was able to fall asleep & slept until 7:30 am. Too soon to say if this is the answer but will continue with this schedule, & continue trying if it isn't. It is such a relief to be able to come here & read all the various posts. I have learned a lot. Thanks to everyone & good luck to us all!

[Polar Bear]

Isn't it brilliant to get a night's sleep. I hope this lasts.

[ViewsAskew]

Very glad it's working....am very concerned that your dose is so high. Total daily dose is now recommended to be no more than .75 mg, I think. Might want to verify with Dr B. Not sure you can do anything about it, but watching it is probably a good idea. EDITED TO ADD: individual doses should be no more than .25 mg.

[badnights]

branti, sorry I haven't been keeping up with this forum. In case you have to look to Alberta for care ( I doubt if your insurance will send you out of province, but just in case: ) I paid my own way to a place in Calgary that advertised themselves as having an RLS expert on staff, the place was called Canadian Sleep Institute. I was not happy with the level of service or with the final treatment, they were ill-informed about RLS/WED, but who knows, they may have changed by now. Anyway I don't recommend them.

I have since (after waiting 2 yrs) gotten in to see Dr Pawluk at the U of A hospital in Edmonton. He knows the disease and how to treat it. I have no idea how you could get to see him, but he DOES exist and he is good.

If anyone from a sleep clinic you've been referred to calls and asks if you've ever fallen asleep while driving, say yes. Otherwise they will keep bumping you down the list in favor of people who say yes. Also, don't be afraid to ask your GP to re-send the referral if things worsen while you're waiting. Those are two mistakes I made... I said no (I thought I had never actually fallen asleep but I have since learned that by the time you notice you're nodding off and pull over, you've probably already fallen asleep for a bit), and I just waited while my life fell apart. It took one phone call from a neurologist (waited 7 months to see him) who said (something ?) (this person has been on your waiting list for two years and she's DYING) (something!) and then I had an appt booked within days.

First step is to get that referral! The more your GP knows about the disease , the better. It worsens after surgery, the GP should know that. It's progressive and serious. Bring the WED Foundation Bulletin for Healthcare Providers (I think that';s what it's called) - see Polar Bear's signature. Good luck, I bet there's someone in BC, you just have to press the right buttons to get in before you die. <- metaphorically that is

[cornelia]

I always read dr B's answers on RLS quenstions. He has repeatedly written that experts nowadays think that the highest daily dose of Mirapex should be no more than 0.25 mg (Ropinirole 1 mg). What does this mean for patients who cannot tolerate opiates I wonder?

Corrie

[jakesmom]

Are you kidding re: .25 mg of Mirapex. My neuro wants me take 1.5 mg mid morning and another 1.5 in the evening. When I asked the nurse if that wasn't a bit much and wouldn't getting me off DA's at this point be a better plan, I was told my dose was on the low side and no where near approaching Parkinsons dosing.

WOW

I have fallen asleep while driving, that's why I am forced to stay close to home. I was afraid to admit that for fear my license would be revoked.

[branti]

It was the Dr. from the sleep clinic that suggested taking up to 3 of Mirapex .25mg. I now take 1 1/2 at suppertime & 1 1/2 at bedtime (total of .75 mg. )I'm just hoping, cross my fingers & hope to die hoping, that the Mirapex will start working again. Badnights, you're right, I should get another referral but who knows if these Dr.'s know anything about RLS. Guess when you're caught between trying to diagnose & treat yourself & the alternative there's really no choice. Maybe I can get my GP to priorize the referral. I'm rather nervous of going off the Mirapex to try something else, if there is something else. The last 3 weeks haven't been pleasant. I have to admit, before my surgery, I did nod off at times, but I was also on high doses of Morphine. Can't recall doing that when not on narcotics. Guess I'm lucky & tolerate drugs well.

[ViewsAskew]

Are you kidding re: .25 mg of Mirapex. My neuro wants me take 1.5 mg mid morning and another 1.5 in the evening. When I asked the nurse if that wasn't a bit much and wouldn't getting me off DA's at this point be a better plan, I was told my dose was on the low side and no where near approaching Parkinsons dosing.

WOW

I have fallen asleep while driving, that's why I am forced to stay close to home. I was afraid to admit that for fear my license would be revoked.

It's low for a Parkinson's patient! But, not for WED! These high doses, they now know, make it worse!

[ViewsAskew]

I always read dr B's answers on RLS quenstions. He has repeatedly written that experts nowadays think that the highest daily dose of Mirapex should be no more than 0.25 mg (Ropinirole 1 mg). What does this mean for patients who cannot tolerate opiates I wonder?

Corrie

Corrie -I have assumed he meant .25per individual dose and that the total daily amount shouldn't be more than .75. Is that what you think he means?