WHAT DO WE DO?????

For everything and anything else not covered in the other RLS sections.
maxietobias
Posts: 22
Joined: Sat Feb 23, 2008 11:46 pm
Location: Washington State

Not able to sleep

Post by maxietobias »

Jan and others--

I too take Mirapex ---and temazapam for sleep and yet I keep waking up several times in the night!!! I have diabetes, lymphedema of both legs, arthritis and a new one called Polymyalgia Rheumatica, and sleep apnea that
requires the use of a c-pap machine. I see a sleep doctor but he has not been able to come up with a solution for my sleep problem. I take Vicodin for pain but not near bedtime as it acts as a stimulant for me.

I don't think there is a solution---so I just keep on keeping on---and, oh yes, I am 100 pounds overweight!! :shock:

Ruth

ctravel12
Posts: 2125
Joined: Mon Jul 03, 2006 2:02 am
Location: Lake Havasu City, Arizona
Contact:

Post by ctravel12 »

I have reread all of the posts again and it comes back to Mirapex which I have been taking and am not sure but think it has been for at least one year. I only take .125mg which is the lowest dose; however I am taking half of the .125mg around 4 pm to stop the onset of rls. This has been working fine until three nights ago.

My concern is that the past three nights just before I take the medication .125mg of mirapex and 1mg clonazapem my legs start up and this has never happened before. It usually starts a little bit before 9 pm for the past three nights. Could this be a coincidence or the start of augmentation at this low dose and can it happen this quick? I really hope not.

I know that I had mentioned that about two weeks ago I was having symptoms in my right arm for about a week and now it is not as much. It was bad today and nothing yesterday. Go figure.

I am seeing my neuroogist on the 11th of Apr. as we are going on a 15-day hawaii cruise the 16th of April and do not want any problems. I am not going to up the meds as I feel it would make it worse. I fee like am at a quandry and caught between a rock and a hard place.

As far as sleep that is still a problem. I do go right to sleep. My problem is staying a sleep. May get 2 hrs at a time and finally go back to sleep for another hour or two. Why would this be happening after being on it for a while. I know I have not been on as long as Jan and my heart aches for her for what she is going through.

I would appreciate any advised anyone can give me. I know we are not drs but some input I would appreciate.

Thanks for listening to me.
Charlene
Taking one day at a time

ViewsAskew
Moderator
Posts: 16259
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Post by ViewsAskew »

Charlene, I augmented at the same dose as you. Actually less. I augmented on .125 mg. So, yes, it can happen at a low dose. It often is worse at higher doses, but it can happen.

And, yes, it can be that fast.

I augmented in a week. I took the Mirapex for PLMD, not RLS. Within a week of taking it at .125, I had daily RLS. Before that, it was once or twice a month. I questioned my doc, and he said to take .25 a little earlier. That was the beginning of the end of my life as I knew it.

The average time to agumentation is somewhere around 12 -18 months. So, you've had a good ride on it.

Chances are, you may be able to use it again. Just get to the doctor, have him or her decide if it's augmentation, and then if it is, get off it for awhile. Some people can back on it relatively quickly, some can't. But, maybe you can.

This ranks right up there with the RLS, in my book - this never knowing what's going to happen and that horrid sinking feeling when the meds stop working.
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.

jan3213
Posts: 1706
Joined: Wed May 26, 2004 8:46 pm
Location: Illinois

Post by jan3213 »

Well, here it is, 2:03 a.m. (I honestly thought it was 5:00 a.m. and was thrilled for about 2 seconds! LOL)...and I'm up. I went to bed at 10:30 p.m. and promptly fell asleep.

Anyway, here I am and I see a post from Lynne! And, another from Ann. I just want to say "thanks" to you all for your replies and for your honesty, as well.

Oh, Lyndarae, I completely forgot to say something---CONGRATULATIONS!!! I am so happy that you now have two precious little babies--two more to love--to add to your other grandchildren. Twins! What a joy, what they will bring to your daughter's life--a lot of work, for one thing. I know!! My own twins will be 31 in June.

Lynne, you are right to mention other meds. I currently take 6 different meds every day---none of which are o/c drugs or vitamins. Yikes!!! Anyway I know that doesn't help the situation, either.

Ann, thanks again for the names of the books.

Well, I'm going back to bed to see if Mr. Sandman will come back.

Love
Jan
No one is alone who had friends.

jan3213
Posts: 1706
Joined: Wed May 26, 2004 8:46 pm
Location: Illinois

Post by jan3213 »

Charlene, you must have been posting when I was. I hope you feel better soon! I'm sure I've augmented several times during my use of Mirapex. My symptoms have appeared in the evening before I take my next dose, as well.

As you see, I haven't gone back to bed yet, but am now. Hope you all can get more sleep!!!

Love
jan
No one is alone who had friends.

cmoore1958
Posts: 232
Joined: Wed Jan 23, 2008 11:47 pm
Location: Texas

Post by cmoore1958 »

Char,

Your symptoms mirror mine exactly when I started my augmenting on mirapex. I took mirapex for about a year when I started having "episodes" just before taking my meds a night. Over the next month it got earlier and earlier. I also slept very little in a stretch. Even though I could usually go back to sleep easily I still didn't get much sleep at one time.

I sue hope you are not starting to augment on the mirapex. Unfortunaely, I have heard of augmenting on meds at a low dose for after being on them fofr s short period of time. I think you need to see if you can get in to your doctor a little sooner to talk to him about this. Since he has rls too, I'm thinking he will do what he needs to help you NOW - whether you're augmenting or not he'll know what to do or you.

Girlfriend I hate that you're going through this rough patch and sure hope it is not augmentation. Anything but that is my prayer for you. Don't try to tough yourself through this. Call your doctor and find out what is going on. I will keep you in my prayers and always.

Love you girlfriend, you helped me so much through my augmenting and the adjustments to my new meds. I am there for you anytime you need me just call.

Love and hugs,
Cyn
Even when we are by ourselves, we are never truly alone.

My motto: It's MY pitty-party and I'll vent if I want to.

cornelia

Post by cornelia »

Jan, I feel your pain. I have too little energy right now to write you a long email, but I will keep you in my thoughts (not prayers, as I'm not a religious person). Please try to live only in the moment. Don't think of the future, it's much too scary. But.... good things can happen too, new meds e.g., better treatments we don't even know about yet.

Corrie

jan3213
Posts: 1706
Joined: Wed May 26, 2004 8:46 pm
Location: Illinois

Post by jan3213 »

Awww, Corrie...I was just coming down to right something else on this thread and I saw your sweet post. Thank you so much for your words.

I've been thinking about some things since I started this thread yesterday morning. And, I want to share them with all of you.

Lynne said this to me one time, and I'm para-phrasing, of course. She said that, even with RLS, there are blessings. And, I know what she means. She and I both feel that RLS is bad, of course. But, if we didn't have RLS, we wouldn't have met each other, met the rest of you, been involved in this community.

I know that may sound ridiculous, but when I stop to think about it---really stop to think about it all---I know that I can find such good things if I look beyond the obvious, past all of the pain and the problems that RLS brings. I'm not the same person I would have been if I didn't have RLS. Sometimes, I'm not a very nice person. I've shown that on this board a few times and I apologize for that. But, it's a process and I believe that because of the circumstances in my life, I'm being molded into the person I should be--if I just choose to look at it all with different eyes.

I'm not a size 6 anymore. I don't sleep well and I have medical problems. But, as I've grown on the outside, I have also grown on the inside. I will be down again, I'm sure--that's human nature. But, I am grateful that I have met ALL of you.

I know that my compassion for others is greater than perhaps it would have been before. I AM grateful for being able to walk. I am humbled by the fact that with all of your problems everyone, that you all care so much about other people and are ready to come to the aid of anyone who needs help.

This is truly a special place. We are all different with different personalities and different ways to cope. But, somehow it works, even when we don't think it will. Even when someone gets unhappy or there's a problem, we manage to work it out, overlook those things and come together when it matters most.

Thank you all for coming to my pity party. I appreciate all of you so much. When it's time for yours, I'll be there! We can still vent and whine and know that here, no one will turn away, no one will tell us to shut up. We know--I know--that arms will be opened, kind words will be said, good advice will be given and good thoughts and prayers will be with us.

Love to all
Jan
No one is alone who had friends.

KBear
Posts: 393
Joined: Fri May 04, 2007 11:41 pm
Location: Wisconsin USA

Re: controling weight

Post by KBear »

mackjergens wrote: . . . after becoming diabetic, and HAVING to watch what I eat, cutting out ALL white stuff, such as bread, potatoes, rice, and of course all the SWEETS. I lost 30 lbs. with NO exercise. So what has this taught me?? Its really not that hard to lose weight IF only you eat healthy. . . .

How ever I do have a big helper for me, as IF I do not eat this way I FEEL awful, eyes get weak, head hurts, etc./etc.
I dont go hungry, as I eat 3 meals a day and 2 snacks aday. Those just happen to be healthy foods.


Mack you are my hero and your post bears repeating, (I selected the key sections) I know I can do it and I know that my problem is that I often make the wrong choices. I'm learning not to buy the bad stuff just avoid those aisles completely. My cart should be filled with vegetables, fruit, whole grains, lean meats, and low fat milk and cheeses. The rest is garbage.

I'm also learning to buy fruits and vegetable that I like. No more carrots and celery sticks (so sick of them) instead I buy zuchinini, yellow squash, green and red peppers, onion, and mushrooms sautee them in a little olive oil (in various combinations) and eat them over brown rice or Quinoa yum! Breakfast and snacks always consist of fruit; cantalope, bananas, oranges, and I can't wait for the price of fresh berrries to come down. (I know diabetics have to be careful about how much fruit they eat but you certainly don't have to give it up.

It takes a little planning to eat this way but it really does work. I have also become more aware of how I feel when I eat certain foods and I try to only eat enough to satisfy. No more automatic eating. If I splurge on a crunchy salty snack (I'm not perfect) I give myself a single serving size and eat just that serving really enjoying it. Sometimes I only take half a serving so if I want more I can go back for the other half, sometimes half a serving satisfies. Never, never, never sit down in front of the TV with a bag of crunchies (insert you favorite here) you can easily consume hundreds (maybe even thousands) of calories without realizing it.

I'm glad the the media keeps us aware of all the risks of being overweight etc. because it reminds me that my health is in my hands I control what I put into my body and what I do with my body. In this world there are so many things we can not control. This is something that I can control.
Kathy

Link to the Mayo Clinic Algorithm:

http://www.mayoclinicproceedings.com/pd ... 907Crc.pdf

ctravel12
Posts: 2125
Joined: Mon Jul 03, 2006 2:02 am
Location: Lake Havasu City, Arizona
Contact:

Post by ctravel12 »

I appreciate all of your input. It is like everything else you hope for the best and do not want to hear the bad stuff and I also felt the same way. Ann thanks for the info about you being on the same dosage as mine. I just did not think that being on a low dosage that someone could augment that quickly.

Jan you are so sweet and and appreciate all that you say and wanted to let you know that you have NEVER been unkind to anyone on this board. Yes we are all being sleep deprived but we all understand and we are here for everyone.

Cyn thanks for your input as I did not know yours started the way mine is now doing. I will get ahold of my dr and let him know what is happening as I am not going to have another cruise ruined like I did in 2006 when I was on requip. It was a nightmare.

Thanks everyone for your concern and I know wthout all of you and the help of God I would of never met any of you. Like Jan said having rls is the pits (not her exact words) but without it none of us would of ever met.

I told hubby this morning I was going to get up at 3 am and iron as I was awake but stayed in bed for awhile and finally fell back asleep. Like Lynne once told me if you cannot sleep to get up as I should as I feel like a zombie now. Jan you talk about venting, listen to me.

Love you all.
Charlene
Taking one day at a time

jan3213
Posts: 1706
Joined: Wed May 26, 2004 8:46 pm
Location: Illinois

Post by jan3213 »

Kathy,

I didn't pick out one thing from your post to respond to because it is all relevant and important. I know everything you said is absolutely right. What we put in our mouths is under our control and because of that, I suppose it is a lack of will power on my part that I've let myself get in this shape. I really can't dispute that at all.

Thanks for taking the time to write such a thoughtful response. I appreciate it.

Charlene, thanks for your sweet words.

You all have a great day.

Jan
No one is alone who had friends.

lyndarae
Posts: 620
Joined: Mon Jul 19, 2004 6:55 pm
Location: pocatello,Idaho

Post by lyndarae »

Good Morning ya'll..... I love this thread, so many good ideas and positive thoughts. With all we go through you would think we would all be a bunch of crabby nut cases, but no NOT US!!! We should all give ourselfs a pat on the back, we are stong loving people and my hats off to everyone.

Someone I cant remember who talked about being able to sleep during the day and this has got me to thinking. I could never lay down on the couch and have a sleep, but here in the last six months or so I have been doing just that.

I was feeling guilty about it (DUMB) cause I had it in my mind I was being lazy or if I slept during the day I would then be up all night. But then I had a light bulb moment.............sleep is sleep. If I can get some good daytime sleep and even to have dreams on the couch in the middle of the afternoon then why not??? I have plenty of things I can do during the night when I am laying there tossing and turning, its just me here so I wont be anyone else.

I agree that a good schudle is important too, but I have never been able to work that way. So I think I am just going to go ahead and take a nap and do my work at night if I cant sleep. What the hey!!!!

It actually feels really good to lay down on the couch and start falling asleep to the tv, and thanks to this thread I am not going to beat myself up for it anymore.

Also there was mention of some type of patch that was out I guess I dont know about it can someone share? I want off the mirapex too. But only going to do that with help. Love ya all, and again Jan thanks for such a wonderful thread and for you being you, your the bomb(thats a good thing)~~~~~~~~~~~~Lyndarae
You cant be brave if you have only had wonderful things happen to you

ViewsAskew
Moderator
Posts: 16259
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Post by ViewsAskew »

Jan, consider starting with The Four Day Win.

She spends a LOT of time talking about how it's NOT about will power. She talks about how strong, smart, and powerful we are...we just need to tweak how and why we do things. And, she gives the tools to do that.

No more need, EVER, to say that we don't have will power or that we are weak.

Seriously, think about the thousands of things that you've done in your life. Could you have really done them if you had NO will power? Not a chance.
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.

jan3213
Posts: 1706
Joined: Wed May 26, 2004 8:46 pm
Location: Illinois

Post by jan3213 »

Ann, I'm going to get that book this weekend! I so easily slip into that way of thinking. Kathy's post was terrific and had some great advice. She wasn't telling me I had no will power. I'm tell me I have no will power! We ARE our own worst enemies, aren't we? Thanks for the pep talk! :)

It's good to get these thoughts we have out in the open, I think, don't you? Again, thanks!

Lyndarae, take a nap!!!! Enjoy sleep when you can. Dream, honey--anytime you can!!!!

I mentioned the patch--I don't know the name of it, but my doc says there has been a lot of successful use of it. I'll find out and let you know, ok? I don't know much about it yet. But, I'll find out before I go on it. However, I AM seriously thinking about getting it. I'm up to 2.5 mg. of Mirapex and do not want to increase that dose. I had night terrors on 3 mg. UGH!

Again, thanks everyone!
Jan
No one is alone who had friends.

ctravel12
Posts: 2125
Joined: Mon Jul 03, 2006 2:02 am
Location: Lake Havasu City, Arizona
Contact:

Post by ctravel12 »

Hi Jan
Let me know about the patch too. I am going to see how my legs do this weekend as my dr's office closes at noon (cushy job I would say) and then I will be able to take it from there. I know the first thing out of his mouth (hope that I am wrong) is to up the mirapex NO WAY

I just want a decent night's sleep. My hubby is concerned too. We all have walked down that road and it is MISERABLE

Everyone have a good weekend.
Charlene
Taking one day at a time

Post Reply