Venting!

For everything and anything else not covered in the other RLS sections.
badnights
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Re: Venting!

Post by badnights »

Someday Betty and I are going to drop in on you at 3 AM to see them
Beth - Wishing you a restful sleep tonight
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I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

jakesmom
Posts: 353
Joined: Sat Feb 09, 2013 11:01 am

Re: Venting!

Post by jakesmom »

I am at a cross-road. My current dose of mirapex is 1.5 mg morning and again at night, 2 mg klonopin, 50/200 Sinemet and 50 mg lyrica. The good news is I usually get 6 hours of sleep. The price tag for that is constant itching, increasing paranoia, anxiety, heart problems, excessive swelling, and 80 extra pounds added over my 10+ years on Mirapex.

My neuro won't stop increasing Mirapex despite my growing list of complications because in her view, it's working and my WED is under control, for now. I guess she doesn't think that symptoms that begin at 9am are abnormal.

In reading your posts, I'm guessing when I find a new doc that thinks I am on too much Mirapex, I am in for a hellish ordeal.

I'm curious, why does everyone seem to have such nightmares with giving up Mirapex but not Sinemet?

EeFall
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Location: Washington State, USA

Re: Venting!

Post by EeFall »

The only reason I have trouble giving up Mirapex is because it is the ONLY medication that I can take that doesn't have me pacing all night without stop. So it is not withdrawals but it is the only thing that makes me halfway normal - take away the Mirapex and I sleep zero to 2 hours a night.

debbluebird
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Joined: Mon May 21, 2012 3:27 pm

Re: Venting!

Post by debbluebird »

One thing is, that most of us don't take Sinemet. Mirapex is a double edge sword. It helps and hurts at the same time. I'm in a similar situation. I have not been able to find any combo of drugs that takes away my WED/PLMD without taking Mirapex.

jakesmom
Posts: 353
Joined: Sat Feb 09, 2013 11:01 am

Re: Venting!

Post by jakesmom »

So, the struggle is facing the side effects while enjoying the benefits.

What are some of your worst side effects and what doses do you take?

EeFall
Posts: 1557
Joined: Thu Jan 03, 2013 4:11 am
Location: Washington State, USA

Re: Venting!

Post by EeFall »

jakesmom wrote:So, the struggle is facing the side effects while enjoying the benefits.

What are some of your worst side effects and what doses do you take?


I once purchased a race car, street legal awesome 165 mph max speed, 6 speed manual transmission, with 405 hp because I wanted it. I went down and purchased it at a dealer (the vehicle was 3 years old and I still paid over $35,000 for it). I attribute the purchase from taking the Mirapex (generic). I once purchased every item on my online wish list plus everything in my wifes wish list the same evening (several thousands of dollars). I bought my wife a rolex watch. I purchase (while unemployed) a 7 day ocean cruise to the inside passage of Alaska. I tip everyone :lol:, even when I pick up food to go. I invited 3 people to go with me for dinner to a place (at the time) that was considered one of 40 of the best restaurants in the world. The 5 hour meal cost me over $1000.00.

The above are just some of the examples I can think of off the top of my head, but there are many, many other occurrences. There is nothing wrong with purchasing items like that if you can afford them and if your plan in life is to do so but Mirapex gives me a compulsion to buy things. I have been taking it on and off for 13 years and now I can normally handle the problem because I know it exists. At the time I was purchasing the items would be like a guy freaking out on LSD because no one told them that they had given it to him. I had no idea that it was one of the side effects that could occur and probably would have laughed it off at the time, but I'm not laughing anymore.

Even now the FedEx, UPS, and USPS usually show up at our place at least 3 times a week. Yesterday a Fedex guy came, then a UPS guy, and then another FedEx guy plus there were a couple of packages in our mailbox. Now I control it by purchasing small things for around the house, although I still get carried away. We now have a thermostat for our heat pump (air conditioner) that is synced to our Wi-Fi and we have apps on our phones that will change the temperature in the house from anywhere in the US and Canada :lol: It is all fun stuff I would have liked to have prior to taking Mirapex, and I would have thought that it was nice too but wouldn't have purchased any of it. So that is one BIG side effect but it doesn't do it to everyone.

Doses were from .125 to .750. Took .750 maybe a month and I can take that much anytime I want to, but never do now. At .125 I was having the most trouble, .250 seems to be about right when it is working. I augmented again on it for sure last night so I'm going cold turkey on it this evening. I have already taken an ambien and oxycodone to try to relieve my pacing. I'm standing up to type right now, I can't sit down.

Within a couple of years of taking Mirapex I gained about 120 pounds. A few years ago I was able to drop 80 pounds, in the past few months I have gone up another 30 pounds. So I am 70 pounds overweight. It probably isn't Mirapex totally, there are other drugs I take that our equally bad for weight. The other thing is that I used to exercise while now because of my severe WED, too much exercise keeps me up for a day or two without sleep. I would be happy to drop 70 pounds but right now I am just trying to live from day to day (really from night to night).

jakesmom
Posts: 353
Joined: Sat Feb 09, 2013 11:01 am

Re: Venting!

Post by jakesmom »

I also have compulsion issues and I have 3 maxed out credit cards to show for it. My food compulsions are the worst. If I am driving home and think "a pizza sure does sound good for dinner" if I dont get one, I will literally obsess on it until I eventually give in.

I am struggling at work due to short term memory loss and paranoia. The paranoia is recent and I think it's because of the combination of Mirapex and lyrica. Insomnia may be causing part if that, but Mirapex used to help me sleep and now it keeps me up or I get divided sleep. In not in pain, I'm just wide awake.

I am hopefull my memory will improve and my weight will decrease if I can find a doctor who will help me get off Mirapex, at least long enough to drop my dose. Most people doctor shop to get drugs; I am shopping to get off them. My neuro feels 3mg of Mirapex daily is small. It is small if you have Parkinson's. When I emailed Dr. B to get his opinion, he said it was way too much. Now if I could just get a doctor here to understand that!!!

dogeyed
Posts: 441
Joined: Wed Apr 21, 2004 3:06 pm

Re: Venting!

Post by dogeyed »

I know this. When I went along with RLS untreated for almost a year, I couldn't sleep well. Finally went to my regular family doc, she pegged it right off the bat as RLS and gave me a Codeine mixture, Tylenol #3, plenty of pills and refills, and referred me to a neuro, who confirmed diagnosis. I came home, afternoon, took just ONE pill, and I fell fast asleep until noon the next day, lots of nightmares, lots of sleep. When I woke up, that's when I realized just how much my legs had been thru, they felt all beat up and run over and twisted and broken. I have not had a problem with RLS since, except a few breakthru type things, so I'd ask to increase dose. I still take it to this day, more pills, of course, and on #4 (twice the dose). That took ten years. So, I'm living proof that some sort of narcotic can generally knock it down, altho some people, not so much. But review any drugs you take, OTC or scripts, and do not take anything with antihistimine, it will aggravate RLS, and your Mirapex is going to rebound time and again, altho you can switch off and on it, as you know, with something else that works, but it's not working for you.

And I might add that getting an intestinal virus is nothing to feel guilty about. You're more worried that no one understands, but WE all know the misery and annoyance and pain you go thru, so you musn't be worried over recognizable stuff. It's called unpaid leave, and if you get tossed, demand a good reference, and you want it before you leave in two weeks. HA! With your credentials, you may tell your next employer you had a chronic condition that finally got diagnosed and properly treated, that it's a personal matter.

EeeFall, you mentioned you took oxycodone. If you still take it, then consider this: Stop the Mirapex at once, wait three days to come down, and then increase the oxycodone somewhat, make sure you can take it long-term for a chronic condition (I take Tyl-Codeine #4), and you WILL withdraw and have bad RLS, but just hang in, then soon the oxycodone will cover you, and you'll get well. Any meds that you take that has a tendency to rev you up (other than the narcotic), take those meds in the morning. I think that all covers your current issue. I hope you find something in all that, which will help you.

I assume you've already taken care of your financial gambling with cars and other things you can sell and get the money back. But if not, let me tell you something. I own my house free and clear, and talk about a better budget! I couldn't have made it on SS Disability alone. So, if you still go some leftover debt and can't sell anything else, roll it all into one loan to include your home, or see what the bank says about one for home and one for debts, make it so you pay it off in however many years you're willing to work, taking into consideration your wife leaving her work TODAY. Roll it all together, make it a five- or ten-year loan, including your house, and if the increase in oxycodone works, you'll be free in whatever time you choose. Then take a second job that pays very well for very little time, you will have to figure it out so it's only an extra two hours each weekday, or one full morning from daybreak to lunch, otherwise you'll be cutting into your home time. I did that for a couple years back when I could still walk like a human instead of a zombie, and I even studied martial arts two nights a week on top of that. If you do the extra work for extra money to pay off the larger loan, ask your wife to help you by keeping your meals warm for you, or fixing a great lunch on weekends, whichever you choose. Keep your eye on the goal, not the time, and the goal is: STAY HOME, GOOF OFF, BE HAPPY. SMILE. Again, I'm living proof that being at home might be a tad frustrating, but it's almost entirely guilt-free, just stay out of ambulances and police cars, and THAT's the truth. GG
"It's not how old you are; it's how awful you feel."

Betty/WV
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Joined: Mon Nov 29, 2004 11:11 pm
Location: West Virginia, Wild and Wonderful

Re: Venting!

Post by Betty/WV »

I am so familiar with "Venting". One sleepless night (one of many) pacing the floor, crying, because I was so tired. Standing at the computer, I came across this site. I "vented" like you wouldn't believe. I got so many encouraging and supportive replies. And over the years have learned so much about this disease. But still have it, take the Mirapex. And when I get desperate take a vicodin. I only sleep 2 or 3 hours at a time. And I have gained so much weight, I don't even want to talk about it. As someone already said, I wish I could do or say something to help you. It seems we are in the same boat. Plus I have many other ailments to deal with. Reading the paper that comes with the Mirapex, get this, insomnia is one of the side affects.. Isn't that a kick in the head. And I'm sure it is the meds I take that help put the weight on. And what is the first thing a doctor says to me------"You have to take off some weight". No kidding. Any suggestions? So all I can say, eeFall, is to do the best you can. I have heard of people going on disability because of WED/RLS. And I understand the feeling that people don't understand what we are dealing with. I have the same problem. If you can find a doctor that knows about WED/RLS and will help you that would be a big help. Also, nice to see you have a great sense of humor, in spite of everything.

BETTY/WV
Thanks to rls.org, I have learned so much about my condition. I have received encouragement from my friends here. This is a site I can come to when I am up most of the night, and I vent, and know those who read my messages understand

Polar Bear
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Re: Venting!

Post by Polar Bear »

I would consider insomnia my biggest side affect.
Before taking medications I was sleeping through the night.... once I managed to get asleep.
After starting on requip/ropinerole my sleep got so bad.
I added tramadol and cocodomol and at last I am getting some relief from symptoms, some breakthrough some nights/days, but my WED symptoms are controlled so much better,

But............ sleep does not come until around 4am.
Yep, insomnia is my biggie side affect.

Betty/WV says that a knowledgeable doctor is a big help and that is indeed so. Also, if your doctor doesn't know much about WED but is willing to learn and work with you it can be as useful as an ''expert''. My doctor worked from Dr Bs book (I marked the relevant sections) and the RLS Foundation leaflets. and we got there. Well,,,,, except for the sleep part :thumbdown:
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

debbluebird
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Re: Venting!

Post by debbluebird »

The side affects that bother me the most is weight gain and being more emotional. I was crying at work often. My weight went up 50 pounds, then even more after that. Another 45 which went up twice, but is now back down. The last time I went up that extra 45 I was on four meds that caused weight gain. I also had some compulsive behavior when my dose was high, but is no longer an issue.
I'm finally on the lowest dose of mirapex possible (0.125 mg) and I'm starting to loose weight. That was possible because I discovered that aspartame was making my WED/PLMD worse.
My current doctor is not that knowledgeable, but is willing to learn.

Betty/WV
Posts: 587
Joined: Mon Nov 29, 2004 11:11 pm
Location: West Virginia, Wild and Wonderful

Re: Venting!

Post by Betty/WV »

Thats encouraging, debbluebird. The fact that with the lowest dose you are losing weight. I was put on .25mg twice a day. Really, you should be started on the lowest dose. 0.125mg. I have cut one .25mg in half for the morning dose and am going to try to cut the evening dose down also. I think I will check with my pharmacy first. I have to do something, I can't keep gaining like this.
Thanks to rls.org, I have learned so much about my condition. I have received encouragement from my friends here. This is a site I can come to when I am up most of the night, and I vent, and know those who read my messages understand

badnights
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Re: Venting!

Post by badnights »

jakesmom wrote:I'm curious, why does everyone seem to have such nightmares with giving up Mirapex but not Sinemet?


People with daily WED are NEVER prescribed Sinemet these days. I think by the early '90's the information was out there, that people with daily WED should not be given Sinemet because it caused augmentation, though a few doctors still haven't gotten the message.

I don't know if it's hard to withdraw from Sinemet, partly because it's so uncommon to find anyone taking it for daily WED. But I wonder also if it's partly because it's not a withdrawal problem. I just don't know. It is a different type of drug than the dopamine agonists. Sinemet provides dopamine precursors which then become dopamine in the body. The DAs (pramipexole and ropinirole), on the other hand, activate dopamine receptors, faking it, acting like dopamine although they're not. So some of the problems caused by DAs vs. Sinemet are very different, despite the fact that they both cause augmentation. The most obvious of the differences is that Sinemet does not cause impulse control disorders, which are the special gift of DAs. Maybe withdrawal issues occur only with DA's too.
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.

EeFall
Posts: 1557
Joined: Thu Jan 03, 2013 4:11 am
Location: Washington State, USA

Re: Venting!

Post by EeFall »

jakesmom wrote:I also have compulsion issues and I have 3 maxed out credit cards to show for it. My food compulsions are the worst. If I am driving home and think "a pizza sure does sound good for dinner" if I dont get one, I will literally obsess on it until I eventually give in.

I do that about food. If there is any chocolate around the house and I'm up by myself all night because of RLS I am continually drawn to it until I can't stand it. My wife had bought this giant M&M's package for some future presents for grandkids, I think, and I found it. Over a few weeks period all that was left was the empty wrapper :lol: I felt sort of bad about it and threw away the wrapper too, besides now it is the perfect crime. When my wife goes to look for it and can't find it she won't confront me because I'm not suppose to know about it and she will think she misplaced it :lol:
jakesmom wrote:I am struggling at work due to short term memory loss and paranoia. The paranoia is recent and I think it's because of the combination of Mirapex and lyrica. Insomnia may be causing part if that, but Mirapex used to help me sleep and now it keeps me up or I get divided sleep. In not in pain, I'm just wide awake.

I take lyrica also. Memory problem that is really a problem is that I forget I just ate, so go get something else to eat :lol:
jakesmom wrote:I am hopefull my memory will improve and my weight will decrease if I can find a doctor who will help me get off Mirapex, at least long enough to drop my dose. Most people doctor shop to get drugs; I am shopping to get off them. My neuro feels 3mg of Mirapex daily is small. It is small if you have Parkinson's. When I emailed Dr. B to get his opinion, he said it was way too much. Now if I could just get a doctor here to understand that!!!

Sounds to me as if you are augmenting. My sleep doctor the last time I augmented on mirapex said there was nothing else he could do for me until a new medicine comes out. If mirapex makes your RLS worse you are augmenting. You don't need to be a practicing physician to know that, experience will tell you that as a mirapex user :D

EeFall
Posts: 1557
Joined: Thu Jan 03, 2013 4:11 am
Location: Washington State, USA

Re: Venting!

Post by EeFall »

dogeyed wrote:so, I'm living proof that some sort of narcotic can generally knock it down, altho some people, not so much. But review any drugs you take, OTC or scripts, and do not take anything with antihistimine, it will aggravate RLS, and your Mirapex is going to rebound time and again, altho you can switch off and on it, as you know, with something else that works, but it's not working for you.


I did stop taking Mirapex (generic) two nights ago, I was augmenting and it was making RLS worse. I take methadone, lyrica, and clonidine now. I tried taking twice the methadone and it doesn't work. I tried taking ambien along with the above meds and it doesn't work. The oxycodone didn't work either last night. I don't take drugs that mess up RLS, I can't even drink alcohol or consume aspartame. The docs have had me try many replacements for mirapex, they just don't work. I am at the maximum of medications I can take or I wouldn't be able to work or drive.

dogeyed wrote:And I might add that getting an intestinal virus is nothing to feel guilty about. You're more worried that no one understands, but WE all know the misery and annoyance and pain you go thru, so you musn't be worried over recognizable stuff. It's called unpaid leave, and if you get tossed, demand a good reference, and you want it before you leave in two weeks. HA! With your credentials, you may tell your next employer you had a chronic condition that finally got diagnosed and properly treated, that it's a personal matter.


Unfortunately I have a pension through this job and I don't want to leave because of it. Also there are no jobs in my area here at the moment, probably for a few years.

dogeyed wrote:EeeFall, you mentioned you took oxycodone. If you still take it, then consider this: Stop the Mirapex at once, wait three days to come down, and then increase the oxycodone somewhat, make sure you can take it long-term for a chronic condition (I take Tyl-Codeine #4), and you WILL withdraw and have bad RLS, but just hang in, then soon the oxycodone will cover you, and you'll get well. Any meds that you take that has a tendency to rev you up (other than the narcotic), take those meds in the morning. I think that all covers your current issue. I hope you find something in all that, which will help you.


I cannot replace mirapex with narcotics, they don't work for me by themselves in the evening. Methadone and lyrica are enough for the day but not enough at night. Only mirapex (generic) works for me in the evening (when it works) so that is why I am up at 1:40am now and have to get up at 3:20am :lol: It is very likely that I won't sleep more than 7 hours a week for the next month. That is what happened last time, a few months ago.

To get through the day at work I will most likely consume 1 to 3 Starbucks doubleshot energy drinks a day (in morning) just so I won't nod off at work during the day. I am now in survival mode. No sleep but I gotta work.

dogeyed wrote:I assume you've already taken care of your financial gambling with cars and other things you can sell and get the money back. But if not, let me tell you something. I own my house free and clear, and talk about a better budget! I couldn't have made it on SS Disability alone. So, if you still go some leftover debt and can't sell anything else, roll it all into one loan to include your home, or see what the bank says about one for home and one for debts, make it so you pay it off in however many years you're willing to work, taking into consideration your wife leaving her work TODAY. Roll it all together, make it a five- or ten-year loan, including your house, and if the increase in oxycodone works, you'll be free in whatever time you choose. Then take a second job that pays very well for very little time, you will have to figure it out so it's only an extra two hours each weekday, or one full morning from daybreak to lunch, otherwise you'll be cutting into your home time. I did that for a couple years back when I could still walk like a human instead of a zombie, and I even studied martial arts two nights a week on top of that. If you do the extra work for extra money to pay off the larger loan, ask your wife to help you by keeping your meals warm for you, or fixing a great lunch on weekends, whichever you choose. Keep your eye on the goal, not the time, and the goal is: STAY HOME, GOOF OFF, BE HAPPY. SMILE. Again, I'm living proof that being at home might be a tad frustrating, but it's almost entirely guilt-free, just stay out of ambulances and police cars, and THAT's the truth. GG


I have been tossing around the mega loan to payoff everything else but it is more difficult to do because our house is a manufactured home at a 55+ community where we lease the land, we don't own the land. It was difficult enough last August to get the loan for our place. I imagine because of buying the house and adding other debt because of buying the house that our credit score has probably dropped.

I like the idea though and since you mentioned it too, I have mentioned it to my wife today and I am going to look into it. Nothing ventured, nothing gained. I actually was looking for my excel spreadsheet I had put together laying out all of our finances today but can't find it. My computer motherboard went out a couple of months ago and I purchased a new computer, I loss a lot of data and my external hard drive crashed at same time. I would hate to have to do it over again, but I might have to :( Thanks for the advice and I appreciate you sharing it.

Maybe I can fix it up at least for my wife. Another reason to stay at present job, if I die my life insurance through work would pay off everything so my wife would be set. It is the reason I purchased this place in the first place in case something would happen to me. It is not likely that anything is going to be changing for me anytime soon and I think sleeping zero to 2 hours a night will do me in (like stroke, heart attack) sooner than later, unfortunately. I don't enjoy life much anymore except for maybe a few minutes or hours a week living like this.

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