Neupro Patch

[EeFall]

I am afraid that life with severe RLS/WED is a series of ups and downs. I had the worse down I have ever had the other day after many years with this, it is just impossible to live a normal life with very little sleep. The past 2 nights I have had over 6 hours sleep a night so hopefully I am going back up again. We can always look towards better days (and snow and sunshine).

[rthom]

Especially snow
So glad to hear you are feeling a bit better

[pamndorr]

I have now managed to tick off my doctor. I called her Monday and left a message about the problems with the patch. I got a return phone call on Wed. from one of the nurses. I was told since I decided to take myself off the patch and I wanted off the MIrapex then to just go ahead and wean myself off over the next week or so. I asked what I was supposed to do while getting off the Mirapex..had to remind them I can't be without something to control the WED. The nurse told me the doctor didn't mention anything about that. I told the nurse that I had to up my dose of MIrapex to get ahead of the WED that was now out of control. That was Wed. I didnt hear back until Friday...and the response I got was that the doctor was mad at me for upping my dose of Mirapex...I am on too high of a dose...I tried to explain to the nurse that I had no other choice...I told her I couldnt keep going on no sleep and WED out of control. The nurse got snappy and said she would pass it on to the doc and I never heard back from them.

I truly believe she thinks I am just trying to be a pain in the **** to her. I also dont think she believes me. I have seen so many doctors for this that it looks like I just hop from one to the next. It seems like doctors are all for taking me on as a patient until I cant tolerate all the drugs and need to have them changed. I have told her as far as I know the only way to get me off the MIrapex is for a drug holiday to happen....she doesnt believe in those and she really doesnt believe in Methadone as a way of getting through the drug holiday. Not that I like Methadone...I don't. It makes me sick...real sick. But I also know that after a few weeks of being sick that I can switch to Requip and I will be fine for 10-12 months before that stops working. The doctor I had before this one was the one that cared about what was happening to me....he was the one that said I would probably be this way for the rest of my life and I would need the drug holidays to be able to switch drugs. Then he got sick and had to retire and I was switched to this doctor.

So for now I am taking the Vicoden and Oxy and Mirapex and I guess I am doing ok at the moment...but I also know it isnt going to last long before the WED breaks through. I made an appointment to go see my primary on Monday and see what he will do for me. I am not going back to the other doctor...I see no reason to keep throwing money to her and getting nowhere. For one thing she is a sleep doctor and when I told her all I wanted was to be able to sleep more then 2-3 hours a night...it went right over her head. Maybe I just expect too much from doctors and nurses...but seems to me that they should read a chart and know a patient and what is going on before they make decisions and phone calls. It is obvious to me that the doctor and the nurses didnt look in my chart or they would have known that I have to have something to control the WED. and they would have seen that I was on too high dose of Mirapex and I was having problems with it. Before I got sick and had to quit working I worked for a veterinarian and I never took a message to her without going over the patient chart and knowing what they were asking for and why. She also knew which one of her patients were having problems and she stayed on top of things...had I ever taken a half assed message back to her I would have had that chart pushed right back to me and told to read it and understand what the patient was needing and why. Pretty sad when a veterinarian is more concerned with her patients then a human doctor is with theirs. I feel defeated again....like I am playing a game that I have no chance of ever winning.

Worse part of all of this is that I feel like crap, I am tired all the time. I fight impulse control issues daily all day because of the Mirapex and the vicoden and oxy only take care of part of the problems...and they also cause me problems too. I have my disabilty hearing in two weeks....I have been waiting 3 years for this. Now I have to go in and try to get a judge to understand what has been going on and why I cant work anymore. Not only a judge but a physcolgist too....and whoever else happens to be sitting in that court room that day. I wonder how in the world am I supposed to get a judge and physcolgist to understand when I cant seem to get my doctors to understand. Actually the doctor that has been giving me so many problems put in her notes that if I expected to get disabilty then I need to go have phychological testing done first...pretty much tells me she thinks it is all in my head.

So I guess I wait and see what the weekend has in store for me and then hopefully on Monday my primary can do something...at the very least refer me to another sleep doctor.

Well that is what is going on now...as always thanks to eveybody for listening and advise. This truly is the only place where anybody seems to understand things. Now to brace for the bitter cold that is on its way here...brrrrr...
Have a good weekend everybody....I will let you know how things go with my primary...

[EeFall]

Be careful of not following the doctors orders about how much of a prescription drug you are taking. It is actually illegal for you to take more than the doctor prescribes and they will cut you off completely.

[pamndorr]

Jeez...sorry for the previous post. I was having a bad night. I should have done a puzzle or something other then type all that. I swear the Mirapex makes me a crazy woman. Today will be a better day.

[rthom]

Are you more nergetic at night? like feel more ready to get stuff done?

[ViewsAskew]

I don't think you were out of line at all. I get your frustration!

I've had a very hard time, too. I think most doctors want to be the doctor and us to be the patient. But, we know as much, and often more, than they do. But, in other ways, we know less than they do - a lot less. It's a weird combination and creates a weird relationship.

Good luck with your primary care doc.

And, all of this going on at the same time as your hearing. I can't imagine how stressed you must be.

[Polar Bear]

Never ... ever.... be concerned about coming on here an saying how you feel. That's what we are here for, for each other.
You are having a helluva time at the minute... and the hearing is so important.
I wish you well, both with your doctor and your hearing.

[EeFall]

Jeez...sorry for the previous post. I was having a bad night. I should have done a puzzle or something other then type all that. I swear the Mirapex makes me a crazy woman. Today will be a better day.

I once called up my doctor's office (talking about making you a "crazy woman", in my case man) and told them to tell the doctor he was a &%$@ing @#%hole! Man did I have to do some #%@ kissing to get him back. Moral of story - don't bite the hand that feeds you, I mean - don't cuss out the doctor that supplies you

[badnights]

pamdorr, not a bad post at all, don't apologize. It says clearly what crap you;ve been going through, some of it would be so unnecessary in a better world!
Remembering how capable you used to be, and now reduced to trying to convince your own sleep doctor of the nature of this disease, which she should have been researching like made since she first encoutered you!

[pamndorr]

Well I went to my primary and he walks in sits down and asks what is going on. I told him about the problems with the patch and with the sleep doc. I told him I saw no reason to continue driving 45 min across town to see a doctor that doesn't even try to care. He thinks I need to give her a second chance. He said he understands my frustration but I need to understand hers too. He said that with all the drugs I take it is really hard to figure out which one is causing my problems. I told him that's another reason for the drug holiday. He was honest and said he didn't know much about WED and that I needed to continue with the sleep doctor. As I got tears in my eyes he said maybe I could try and switch to another doc in the same practice. He told me that one of the doctors from the sleep clinic comes to my side of town a couple times a week. He thought if I called and asked them if I could switch to the dr that comes over this way they might let me. Apparantly when you are seeing one doctor in a practice they don't like you to switch doctors. He also said he thought that I needed to go talk to somebody and have the physhological testing done...he thought they might be able to help with some of the drugs that I am on....not sure why he thinks that.

So as we talked about what I was going to do he said he had never heard of the Neupro Patch but it sounded like I needed a higher dose of the patch to begin with....now his office is trying to get prior auth from the insurance co to see if it will help. I still feel defeated..

I told him I just wanted to lay down and sleep for 8 hours....I am so tired of being up all night. I sit here with the animals and do whatever I can to keep my mind busy. I dont understand why I can't just go back to sleep afer I get up for awhile..but I can't.

So this is off the above subject but I have so much time to think and because of Facebook I am in contact with people that I grew up with. A few of us were discussing how so many that grew up in our area are passing away at such young ages from one form or cancer or another. Not only passing away but so many have unexplained neurological problems. I decided to put a post in the school alumni area and asked others to put where they lived and what health issues they were dealing with. It has been kind of amazing. So far...and it has only been up a few days there have been at least 6 different people that have strange issues going on. These same people are going throught what I have been but they dont have the same issues as me but they have issues that the doctors cant come up with an explanation for. I have been doing research about things that happened in that area while we were growing up. A few things have made me question things.
For one I grew up in MI in the 60 and 70s. In the 70s there was a huge mix up in large animal feed and PBB was accidently put into feed and it was sold in MI. The PBB caused a huge mass killing of cattle,pigs, chickens...but only after the PBB had gone through the food chain,...down to us. As I read things about it they are now finding that we were exposed to way too much of it and they are finding problems popping up 40 years later...not in just those of us that were exposed to it but to our children. One thing that they found happeneing was girls that were exposed had a much higher chance of having sons born with hernias.....mine was born with double hernia and had to have surgery at 18 months old. They also say that we should be tested for levels of the PBB....I think that I am going to ask for that test.
Then on top to that the schools were across the street from a plastic factory that had been sued in federal courts for environmental damage they caused. They had poisoned the wells within a 3 mile radius....our schools were right there. There was a run off ditch out behind that plant that actually glowed a fluorescnet green...and it was that way for years. I graduated in 1976...the factory was closed down many years later and they had to truck water in for the school and all the homes in the area for years....quiting in 2006. The land there is still quarantined....most likely always will be. Oh and not only are there people my age and younger with strange problems but a whole lot of our parents passed away at young ages from different forms of cancer. And then to add to all the above poisons....I grew up in farm country,. Upjohn/Pharmacia/Pfizer owned all that land...they were all the time using experimental things on crops that they grew to feed the animals...and a lot of people that worked on those farms passed away young too. We were in those fields all the time....and on top of that the Upjohn Co wasnt that far away and when the wind blew just right it blew right to where we were at. I have no idea if any or all of the above has anything to do with what is happening with me...and others...but it all kind of adds up. Although a lot of people are saying that all of the above has nothing to do with all the medical problems...they say it is because of aging and heriditary....I say it is worth checking into...starting with testing for the PBB.
Kind of wondering what anybody on here thinks....could the past have something to do with what is happening to me now? Strange but up until I started digging into things I thought I had grown up in a very nice community....I always thought others missed out on things because we had so much fun and so much free space...now I wonder.
So that was long and drawn out....thanks for listening...again.
I told my doc and have told my family all along that here is the only place where people understand what is going on....
Have a good day everybody....

[ViewsAskew]

That is really scary. I grew up in a rural area and I remember some of the people saying there was a much higher percentage of cancer in the people my parents' age. I don't know how they knew that. But, it's nothing like what is going on where you grew up.

It sounds like your doctor is really trying. I know, believe me I know, that that doesn't feel like enough, but thank goodness you have that.

[rthom]

Pesonally I believe anything is possible especially with chemicals and nerves. You were in Michigan? How far from the Canada border?

[pamndorr]

rthom...I am nowhere near the Canadian boarder. I have lived in the southwest part of MI my whole life. Although.. one of my all time favorite places to vacation is up at a cabin on Lake Superior......I can see the Canadian boarder when I am up there!!! One of the most beautiful parts of MI...I love it up there!!

[rthom]