Neupro Patch

[Polar Bear]

Is there anyone you could take with you to your next appointment. Someone who will take on board what you want to say to your doctor and can step in and explain on your behalf if you get overcome with emotion. Or perhaps write down what you want to say, as concisely as possible, and give it to the doctor to read.

[ViewsAskew]

Thank you all.

My biggest problem is I am so frustrated when I go see her, I cry like a blithering idiot and can't make the wonderful argument that I have rehearsed in my head.

I'm tired of pain, tired of no impulse control, tired of short term memory loss, tired of my skin crawling, tired of not caring about anything, tired of feeling that people think I just want drugs; not to mention I'm just tired of fatigue and being tired.

I could have written this....and a bunch of the other members could have, too, I'm guessing.

To me, these are some of the hardest things about the disease and worse, to me, it that this is the part the docs really just don't get. I left my sleep docs office in tears three weeks ago....after telling her off (oops).

[pamndorr]

I give up...I don't think I can do this much longer. Where does a person go when their doctors just throw their hands in the air and shove you off to another dr...or better yet they tell you that you need to go see a phychologist.

I called my primary this morning about this stupid patch not working no matter how or when I use it....his response back to me was I needed to continue seeing a sleep dr for this because he doesn't really know that much about RLS....well guess what....nobody knows much about RLS. I told his nurse that the sleep doc was no help...she has given up or she just thinks I am a pain in the ****...either way she isn't any help and the primary knows that. I told the nurse that I needed a dr that was willing to learn as much as they could about this and be willing to work with me and help me. She said he does want to help he just doesn't know what to do to help me. He did say for me to put 2 of the 4mg patches on and see if that helps. I am not sure and please correct me if I am wrong but isn't that a bit high of a dose for RLS?

I just wish everybody would quit acting like this is in my head....I am fallling apart from lack of sleep and too many drug changes and the thought that this could be what the rest of my life is going to be like and this is not what I had planned on doing at this age. I want my life back and I want to be normal again.

Maybe tonight and tomorrow will be better....maybe.

[jakesmom]

I am so with you. I have a call in to my neuro because the patch isn't working for me either and I DO NOT want to go back to Mirapex. I am tired of constant itching and skin crawls. I am also tired of docs that expect me to self medicate just to make it through the night.

[ViewsAskew]

Oh, I so hear you both. Or, as my nephew would say, "I feel ya."

[jakesmom]

Within the last couple of days I have started having twitching in my index finger on my non dominant hand? Anyone else have any strange twitching? Any opinions on whether Neupro side effect of Mirapex withdrawl??

Thanks all

[ViewsAskew]

When I started my first dopamine agonist, I had tremors in my fingers - freaked me out. No idea if related to the twitching....

[pamndorr]

Well I have went back to one 4mg patch and I am starting the Pramipexole up again too. I took a .5mg tonight to see if that might keep that feeling away.
I also saw the doc that did my knee replacement...or I guess I should say I saw the PA. She looked at my swollen knees and she said it wasn't that unusal for the surgery knee to be swollen and sore still. I have to go to physical therapy to get the strenth back though..so I guess I do that starting next week. Then I had a cortizone shot in the other knee so it will be ok during PT. I really don't like the cortizone thing but they want to do that now and then somekind of gel stuff later. I will see her again in 3 months.
I also looked around at someother sleep doctors in the area and I called my primary and asked him to refer me to this new guy. He is a D.O. and the reviews for him were good...especially the part of bedside mannor and taking time to listen and following up on things.
When I called the primary office for the referral the girl opened up my chart and said there was a note in it and she had to read it...all she said was oh..ok.
When I was working at the vet clinic when we had a difficult client they would get a red star on their chart...the more difficult they were the more stars they got...until they got up to 5 then they were fired.
I wonder if human doctors do that too....it is a general practice in the veterinary world...at least around here it is. I would guess I have a chart full of red stars....by a whole lot of different doctors.
Sad part is if my doctors would listen to me and actually READ my history they would understand me. I think they only look at the most recent things that have been tried...I think they need to go back to the beginning and see where in my charts it talks about the happy Pam...the pleasant girl that wasn't 80# overweight... that always smiled and spoke up. The polite person...not this desperate person I have become in the last 3 years....I am not a drug addict...I can not live without these dang drugs....without them as bad as the side effects are.... I am pretty sure I would not be around anymore...either I would have done myself in or I would be in a phych ward out of my mind from that feeling.
Such a strange disease...how funny that I can pretty much guarantee that starting aroud 6 that feeling starts and by 7 I am not sitting for any length of time....and it goes on all night then the sun starts to come up and the feelings although still there are not as bad....my head never clears up...but the rls calms down a bit....I guess you all know that already!!!
Well time to start walking....jeez what a life.

[jakesmom]

Pamndorr,
I hate to sound creepy, but I feel like we are on the same journey, learning to walk the line using Mirapex and Neupro.
I spoke to my neuro via her nurse and was basically told I need to deal with a racing heart and nausea for 2 weeks and by then the Lexapro should help control my itchy skin and anxiety. Also told me to keep taking another anxiety med while taking Lexapro. I was told to cut back on the Neupro to 4 mg to see if that reduces my nausea. I was furious. I said 6mg doesn't control my symptoms and I can't work everyday for 2 weeks with a rapid heartbeat. I was told it should get better in 2 weeks. I then asked if there was anything I could try besides Mirapex or Neupro. I was told Requip (which doesn't work), Mirapex or Neupro. Those were my only options. I cannot believe she totally disregarded my cardiac issues.

I am going to try to do a Mirapex/Neupro combo. I may try .5 mg of Mirapex in the morning and 4mg of Neupro at night. It kind of worries me to be mixing 2 anxiety meds and 2 WED meds plus my heart medications, but if she won't help me get off DA's I will try to do it on my own. God willing I won't overdose or make myself sick. I don't know if she would give me a referral to a new neuro. I had lab done last Wednesday, but she hasn't gone over results with me. I am going to get a copy of the results and look them over to see what is not normal.

Sorry to be so long winded. It's a sad day when we have to design our own course.

[Polar Bear]

Jakesmom - Indeed, most of us to some extent design our own course of treatment... Have you printed off the link in my signature which is the RLS Medical Bulletin and discusses various treatments. Have you show this to your doctor, or ever discussed the possibility of opiods.
It was only when tramadol and codeine were brought into the mix that I got reasonable relief.

Okay, its 2.30am here in the UK and I am up out of bed - but that is insomnia and not RLS/WED symptoms.

[rthom]

Jakesmom

you might want to check the list of side effects before you take mirapex. If I remember correctly heart failure is listed, could be wrong--but best to be safe.

[jakesmom]

I have taken Mirapex for the past 8 years. My blood pressure just took a plunge to 79/47. I guess the patch can cause that also. That's why I want off DA's. It would take me a month to get back in to the neuro. I found a post here about knowledgable doctors in AR. There was one 2 hours from me. I will have to call and see if he is taking new patients.

[pamndorr]

Jakesmom...you don't sound creepy. You sound like everybody else on here. It sad but true that misery loves company. I do believe this place helped me through 2 of the toughest times of my life and now it looks to be getting me through the 3rd worse time. I wonder when I will stop counting all the bad times?
I at least feel that people on here won't judge and it is a great place for info and you know you are not alone or crazy. That has helped me a lot.
People on here are right when they caution you about mixing your drugs yourself...it is dangerous...but you know how you feel and you know how the drugs make you feel. I decided that for me it was worth the risk to mix the two drugs and see how that went.
Last night I sat for over 3 hours and watched tv....I have not done that in a long time. That was after taking the .5mg Mirapex in the evening. I put the 4mg patch on in the morning. I also did not take anything else..no pain drugs yesterday or last night...just decided to stay away from them for the night so I would know what was helping and not. The only B/P med I am on is Hydrochlorathiazide and that is just a water pill so mixing the two wouldn't interfer with that. I also keep track of my B/P to make sure it stays fairly stable. My B/P ran a bit high last night but not too bad..my pulse on the other hand is racing 109 and that is making me burn up. So is it the mix of drugs or is it something else...not sure at this point. I need to watch it awhile longer and see what happens.
I think I screwed up when I took a .25mg Mirapex at 11pm...it seemed to cause the WED to return and I was miserable again. I did go to bed and I slept my usual 3.5 hours and up again for the day.
So there is a fine line there that you can cross and make things worse...just be careful and don't change your drugs around without letting somebody close to you know you are doing it so they can help keep an eye on you...my husband is home everytime I tweek my meds....just in case.
I hope you have a better day today....

[rthom]

pamndorr

good reminder to all of us about making sure someone knows what we have taken

[jakesmom]

I live alone, aside from my cats and a dog, but when my blood pressure drops I let someone know. The sad part is, no one around me "gets it." My mom just says, "when are they just going to tell you to lose weight and that will fix it.?" I counted it up yesterday and I take 11 different pills plus the patch DAILY. It's too much. Keeping up with the best times to take what and with food or no food is insane. I'm 45 no 85.

I didn't use a patch last night, Blood pressure dropped and I was afraid I would pass out in the shower. Just woke up. Legs on fire. I used 1mg of Mirapex. I have a CT this afternoon for neck pain; hopefully that won't lead to another pill.

Don't know about y'all's budget, but IMHO, this disease makes my budget suffer as much as my body.