Neupro Patch

[pamndorr]

Well here is my two cents again about things...
I have no problem going and talking to a phycholgist or whoever...but that is another kind of doctor that you have to be comfortable with. I am spending so much time and energy on trying to find a doctor to treat the physical symtoms that I don't have the time or the want to deal with yet another doctor that may or may not listen and believe me.

As for Mayo and other specialty clinics. When I had the good doctor that listened and went above and beyound.. he wanted me to go to one of them. My primary at the time sent all my records to Mayo and Clevelend Clinic..both places excepted me and I was more then willing to go...but when they tried to get prior authorization from the insurance co they said no. They wanted me to see more doctors here in Mi first. The insurance co told me to go to Harper University/Detroit Medical Center and see a neuro there. I did and had to go back a couple times. She did all the same tests everybody else has done..I began to feel like a pin cushion there for awhile..every doctor wanting to do some other kind of test to check the nerves. The only thing that was found out there was I had a Vitamin D defiency and needed to have that supplimented now and for the rest of my life...part of living in MI where there isn't a lot of sunshine all year round!! I have a couple other issues besides the WED that the specialty cinics were going to be trying to figure out too...

As for looking for doctors...when I decided last summer to get a new primary because the old one wasnt listening I decided a younger one would be a good choice too. I picked a young guy and he was only good as long as he could diagnose and fix me...like my knee replacement...he is the one that figured out that I needed to have that done. But when it comes to the WED he is a jerk like the rest of them....doesn't know how to treat me so push me off to another doctor...and try to tell me to give the sleep doctor another chance...which by the way I am still waiting a return phone call from about 2 weeks ago when this whole patch issue came up. I just told my husband last night I was finding another primary...this time I am shooting for somebody a bit more my age. Maybe I just picked a cocky doctor..but that is what he is. Kind of arrogant and cocky and that makes him not a good doctor for somebody that is difficult to treat..I think it bruises his ego that he is stumped. Just my opinion though!!

The patch update.....since there is no doctor on board right now to help treat me my husband and I have been trying different things. The last couple days I feel a bit more normal. I am still doing the 4mg patch and I am taking .5mg of Mirapex at 6 and 9pm. So far so good. I can sit at night for a couple hours without feeling like I am going to loose my mind if I don't move. The impusle control thing is a huge improvement with the Mirapex at the lower dose. It was when I was taking 3.5mg a day that I was loosing it. I can honestly say that the urges that were driving me insane are a whole lot better...they are still there and that little voice in my head that tells me to do things that I know I shouldn't is much quiter now. I don't feel like driving my car off a bridge anymore...and I am not crying all day and night and I can actually think better now. Today I am cutting the patch back to 3mg and see what happens with the goal being on a low dose of both the patch and Mirapex.I am scared about the thought that I could be setting myself up for augmentation or rebound...I get those confused...but to have some comfort both mentally and physically for even a few days is nice. As my husband told me last night...gear up for the possibility of having a couple bad days/nights if our drug cocktail backfires. Even with changing up my meds I am still awake after 3 hours sleep..I wonder what it is like to sleep for 7-8hours at a time.

I have a question about all this stuff....has any research been done to see if the WED has something to do with so many of us having hard times with medications? I find it interesting that so many have the same problem with drugs. Also is there any well known person that has WED...severe WED. I have written to Ellen and Dr. Oz to try and get them to do a show on WED and how it makes life hell..neither one ever got back to me. Like all diseases I think there needs to be a famous face put with this disease...then more people might take it seriously. Jeez I ramble...sorry!!

Have a good day...

[jakesmom]

That's a brilliant idea. No one had put a face to Parkinsons before Michael J. Fox or Ali.

Of course with RLS sufferrers being seen as a bunch of drug seeking whiners, it would take a brave soul to speak out. I do, however believe that would give some credibility to this horrible painful disease that affects so many.

Now, finding out who has it poses a challenge, but if they are out there, as they surely are, with the number of smart and determined souls on this site, surely we can find someone.

Again, brilliant idea.

[Polar Bear]

Several people here have said they've had the best luck with very young doctors. If you can't see a Dr Buchfuhrer, Dr Walters, Dr Becker (etc - the people who research and write about it), seeing a very young doctor can help. They are too young to believe they know it all and are often keen to learn more and are excited by a difficult case.

This is my experience exactly. A younger GP, willing to learn, a copy of Dr B's book marked with 'post-its'. And a few handwritten notes listing what you want to ask. Prioritise your questions and just remember that an appointment is a limited time - here in UK we get an allotted 10 minutes. Sometimes it takes a few visits to get your (willing) GP up to speed.

[ViewsAskew]

That's a brilliant idea. No one had put a face to Parkinsons before Michael J. Fox or Ali.

Of course with RLS sufferrers being seen as a bunch of drug seeking whiners, it would take a brave soul to speak out. I do, however believe that would give some credibility to this horrible painful disease that affects so many.

Now, finding out who has it poses a challenge, but if they are out there, as they surely are, with the number of smart and determined souls on this site, surely we can find someone.

Again, brilliant idea.

The foundation has tried to get someone. They found an older actor - Corbin Benson, IIRC - but not much came of it. Some of you in the business world might remember the book, "In Search of Excellence." Bob Waterman was a co-author and he has been on the RLS Foundation's board. I seem to recall one other actor saying he had symptoms, but can't remember who.

The Foundation has SO many things they try to do and on such a shoestring budget - from education to research to marketing. They took a lot of heat from taking money from the drug companies about 8 or 9 years ago, so they don't do that now. But they lost huge amount of money and rely on our individual donations.

None of the moderators are paid, nor are any of the group leaders. The staff consists of only four or five people who do more than you can imagine with what they have. If you haven't joined yet, please do. Every penny helps them try to do this kind of work for us.

[jakesmom]

Restless Legs Syndrome: Keith Olbermann (US Countdown) and Jon Stewart (The Daily Show) suffers from Restless Legs Syndrome (RLS).It’s an absolutely exhausting condition. Although I only have gone through periods of RLS (in combo with other glorious parasomnias such as sleep paralysis, night terrors etc), I remember waking up in the morning, looking around my bedroom and being unable to move. My body was in pain as if I had been running a marathon or participated in an all-night boxing round. Eventually, you become more conscious and irritation and frustration starts to build up inside especially if you are trying to keep an appointment or get to work. There is nothing you can do but surrender – cancel/reschedule that appointment and get some rest. It’s ironic that you need to get some rest after a whole night’s “sleep”.

Taylor Lautner of Twilight is also a sufferer.

[pamndorr]

Sunday morning and although I am still not sleeping at night I feel a whole lot better since changing up my meds.
Yesterday I decreased the patch from 4mg to the 2mg and took Mirapex .5mg at 6 and 9pm. I was comfortable last night and was able to sit and watch tv for awhile.
My head is clearing up...I am not walking around crying all day. I don't feel so helpless and desperate at the moment and most importantly I don't have the thoughts that death would be better then living like this anymore. My husband sees a huge difference in me too.
I know that this is most likely temporary but I will take what i can get. I am sure now that the high doses of Mirapex and high dose of the Neupro were responsible for how I was feeling mentally and physically and yep...I am not happy with two doctors that ignored me when I said I thought the drugs were messing with my head.
I feel blessed that I have this site and all the information on here and the people to bounce things off of....and of course to have my husband and mom...both who go through this stuggle with me daily.
So I will take the good days when they are here...deal with the bad nights when they come....and never go back to such high doses of those two meds again.
Time wil tell how long I can get relief from the low doses of each of these meds..but for now things are fine. My b/p is a bit high but not too out of range.
Have a wonderful Sunday everybody,.....

[Polar Bear]

[jakesmom]

Pamndorr,
What time do you change your patch? I use a 4mg and I change it around 5pm. Yesterday at 11am my feet and legs were crawling and cramping and twitching so badly I took 1mg of Mirapex. A couple of walks with my dog later, I was able to sit comfortably. Have you noticed your insomnia got worse with the patch? I take 50mg of hydroxyzene and either 10 mg of Ambien or 3mg of Lunesta at night and I am sleeping 3-6 hours per night, usually closer to 4 or 5 and that isn't all at once. Granted that is more sleep than many get, but it plays hell with my job which requires my full attention.

[pamndorr]

Jakesmom...I put the patch on around 10:00 in the morning. I kind of figured that way I would have something in me all day and at night I would booster it with the Mirapex.
Right now..the last 5 days.. I have not had to take any pain meds. I was taking Vocoden and Oxycodone just to make it through the days and nights. The higher the dose of Mirapex the worse the pains were. Then when they took the Mirapex away and started the patch at too low a dose the pain got real horrible...and my thinking got worse too. Then when the next dr. upped the patch to 4 mg things really went whacky. That is when I started trying to figure out what to do.
Kind of strange how this is working out....I keep wondering if I am risking that augmemtaion/rebound thing or if that is what was starting to happen at the higher doses. From past experience I know that I may feel great today...but I can also just out of the blue have this stuff go wild.
The only other drugs I take right now are Wellbutrin and Hydrochlorathiazide and a bunch of Vitamins.

[jakesmom]

I have come to the conclusion that Neupro is causing my insomnia. The last good night sleep I had was using Mirapex I am thankful I am not in pain, but it will be another agonizing day at work where I have to struggle to focus and avoid mistakes due to sleep deprivation.

I remember my life before this roller coaster began. I could multi task, complete my own sentences, the words that I was looking for rolled off my tongue instead of getting stuck there, people used to think I was intelligent and would ask me for help or opinions, now I am the one constantly needing help, and sleeping all night was something I just did and it didn't occur to me that the world wasn't sleeping blissfully also.

Makes we wonder how many people with disease go on early retirement if they can afford it or disability if they can't.

Ahh the 2am rambles !!!!!

[rthom]

I hear you, it's 3am here and I find what you have written to be tooooo farmilliar......arhhh. Hope you get some sleep soon!

[jakesmom]

I guess it's a good thing I am single. The only ones I disturb are the dog and cats.

[Polar Bear]

I am one of those who took the retirement option and it has been a great help. My symptoms are the same and my broken and inadequate sleep is the same... but I no longer fear the bell on the alarm clock. It is 9.30am and my legs have had symptoms for the past hour. However a little housework will knock that on the head until the meds kick in.
Retirement and this site changed my life.

[jakesmom]

This site and its members and moderators are amazing. For the first time in my life I can describe what I feel or what I am going through and instead of shaking heads or I'm sorry, I get, yep, been there. It is priceless.

I wish I could find a doctor that lives with WED or knows of it first hand.

Until then, after 4 broken hours of sleep, I am up to start my day.

[jlane]

Jakesmom
I was reading your post about the doctor in AR whose specialty is Psychiatry, & think you might be talking about my doctor. This board will not let me send you a message, but do you think you might be able to send me one? If so, maybe I could reply to that. I really like my doctor, but don't feel comfortable disussing him on the forum. And I am sorry you are having so much trouble, I have been through a lot with RLS too.