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I'm back)

Posted: Wed Feb 22, 2012 10:08 pm
by Baffledsilly
Came here under the name ifraughton quit a few years ago to find solace and comfort and must say it helped in my hour of need. Want to thank all those who posted back then to try help me through this trying disease we all share. My turn to row! :) haha I am doing much better now, sinemet is work for now(had to stop taking it in evening as it makes me crawlier) and I am getting some sleep atleast. Sadly had to fire my doctor today because she was surprised I got a provincial disability, if she didn't believe me, why did she fill them out? To placate me, just like they have been doing since I was born. She thought I'd be turned down, and then I would shut-up and then go away.... Hehe, they don't know me very well I guess. Told her I'm looking for solutions, not excuses!! Probably first time one of her patients actually laid into her and told her how it was. Tired of the sad pathetic excuses used to pass off the buck in our countries, who have larger cases of this stuff than other countries? Well then maybe we should start looking at how other countries live, and start questioning the way we live. How about stop dumping toxic chemicals into our foods and water as babies and pregnant mothers and maybe your children won't be born with the insidious disease.

Nice once again to come here and rant and know most of you agree, or at least sympathize with me. Can't wait to chat with you all again, hope your doing well. If not, I'll lend a ear an maybe we can help make it work for you.

Until then,

Baffledsilly :D

Re: I'm back)

Posted: Sun Feb 26, 2012 3:17 am
by badnights
Hi Baffledsilly, welcome back. Sounds like you're happy but not happy! How do you control your RLS in the evenings?

Re: I'm back)

Posted: Sun Feb 26, 2012 5:07 am
by ViewsAskew
I completely missed this post earlier! Welcome back, baffledsilly. Do hope you can find some better help.

Re: I'm back)

Posted: Sun Feb 26, 2012 6:32 am
by Polar Bear
H Baffledsilly, I just wonder are you still taking sinemet on a daily basis for your rls/wed. Sinemet should never be taken daily because of the high 70% chance of augmention. 3 or 4 times per week should be the max.

Re: I'm back)

Posted: Mon Feb 27, 2012 7:27 pm
by Baffledsilly
I was on it 2 times a day, one in evening and one for bed. I noticed the one in the evening caused me to become more crawlier so I stopped taking it, and I also know this has higher augmentation than other drugs so I chose to cut back. Why my sleep specialist told me to take up to 3 a day, I've no clue?? Gets harsh when you know more about your disease then your own specialist who is supposed to know this stuff. Noticed I been waking up again in middle of night, but could be stress from trying to ween myself off my processed sugar addiction. Going back to sleep clinic in spring to have another sleep study to determine if this is wearing off or not. Oh joy, another night being hooked up to a machine, fun!))

For now I'm just putting up with the night symptoms. Was trying to get some Lorazepam to get 2 or 3 nights of relaxation, or something to try settle myself in the evenings for a change, but doc's are so unwilling to script drugs because I live in a small city that is notorious for it. So I'm just another guy in a leather jacket trying to scam them for drugs. They don't realize I can buy most of the drugs they proscribe on the streets and I've told them this. Sad when someone who wants the help of their doctor and knows he doesn't want to become addicted and is still refused help.

Re: I'm back)

Posted: Sat Mar 03, 2012 4:30 am
by badnights
I get what you're saying about how depressing it is when we know our disease better than the doctors that have to treat it. But take heart; they do learn. The decent ones do, anyway. It's always nicer for both of us if we, as patients, can approach the doctor with respect for the knowledge they DO have. One of the best approaches is to ask their opinion on information you've found; bring a printed copy with you, and have it already highlighted on the important parts. This might be an approach to take with your sleep specialist, who sounds like his knowledge of this disease is dated.

For example, print this doc:
and highlight the part on p.4 about Daily and Refractory RLS, on p5. the parts of the Table about Daily and Refractory RLS treatment, on p.6 "Augmentation is....", on p.7 "All dopaminergics have the potential to cause augmentation; levodopa .....", and other places, wherever it talks about somehting you feel is relevant to your situation. Except don't highlight anything about opioids, other than maybe the title of each class of drugs. (Don't want to fuel any thoughts of drug-seeking, if it's common in the environment you're in.)

The progression of treatment attempts, if you read the document, is to try the RLS/WED-approved dopamine drugs (ropinirole/Requip and pramipexole/Mirapex ), if htey don't work try anti-convulsants (or an anti-convulsant in combination with a dopamine drug), if that doesn't work try an opioid, with or without a dopamine drug or anti-convulsant. there are a lot of different combinations that are possible and every RLS specialist knows that each individual needs a unique solution,. It takes a lot of experimenting, as a team, you and your doctor have to work together to find the answer. It simply isn;t going to be found by one of you on your own.

A first step is to ask your doctor or sleep specialist - or both - what they think of that document, telling them you found it in your search for information and it's published by the RLS Foundation.

My understanding of augmentation is that you have to stop the offending medication completely. It causes the problem, so you don't want it in you anywhere.

I hope things work out for you.

Re: I'm back)

Posted: Mon Mar 05, 2012 10:42 pm
by Baffledsilly

That might help but I'm still frustrated with the fact that I have to go to a sleep specialist and walk him through this. He slightly nodded when I'd told him I was on simemet before and had bad reaction to it. Said take it and see what sleep study says. It got me down to mild WED fer now(acted like we'd defeated this lol), but know it's wearing off. Can feel that tiredness creeping back into my head and eyes and losing my energy partial sleeping was finally giving me. I will bring that info for him to read and maybe we can come up with something, but not hopeful. This insane disease loves throwing it the face of everyone and doubt I will ever have much relief from the symptoms but sleeping a little is better than none.
Doctors now have a hard time with me since I've hit a wall of ignorance or arrogance concerning this my whole life. So I am always leery of their "knowledge on the subject". Just cause you can spell it, doesn't mean you know anything about it. Haha, but atleast they try....

Thanks for listening,


Re: I'm back)

Posted: Tue Mar 06, 2012 6:25 am
by badnights
Don't lose heart, buddy, it can get a whole lot better, we just have to keep trying, and keep our frustration in check (and isn't that all but impossible when we're insane from lack of sleep!) You can always come here to rant, lord knows you need it, and I want to hear how you're making out. I'm convinced there's a solution for you, and you'll only find it after (sigh ) educating your doctors.

Re: I'm back)

Posted: Tue Mar 06, 2012 10:10 pm
by Baffledsilly
Thanks Beth) Sounds like solid advice to me. But I think it's time to start ranting to the government for now. It is a relief knowing someone out there understands us and we have somewhere to go to get help from good soldiers like yourself and everyone else here) Think how horrible it would be if there were only a dozen of us. We'd just be labelled "eccentric" and ignored... Hey wait, that sounds familiar haha :D

Re: I'm back)

Posted: Wed Mar 07, 2012 7:48 am
by badnights
you made me laugh.

When I read your letter-writing idea I Was thinking, what if you set up a web page, that way you could get more people to sign it. But you'd have to make sure the message was clear and succinct. Plus find a hosting service, and make the page, and add forms or whatever to allow people to add their "signatures" to the letter.

Complicated but maybe that can be the next step. I would get involved in something like that at some point, no sooner than next fall when I am not so overwhelmed at work, but I would want to start with careful thinking of what the message would be, make sure we had the facts straight, know what we were asking for so we could make that clear, all before we wrote a word. Make media aware. Hmm. Maybe as part of my support group launch. If I start one. oh god, I'm babbling. Good night.

Re: I'm back)

Posted: Wed Mar 07, 2012 11:26 pm
by Baffledsilly
Haha, mission accompished)

Making people laugh is all part of my job lol I am not a comedian but hey, I'll take what I can get. As for your website idea I LOVE it!!!! I was into webdesign for awhile but lost touch with it, I think this would be a great time to get reacquainted. By fall I should be able to help with the designing and info gathering/placement etc. I agree we have to be careful how it is worded and the message has to be clear and succinct as you said. Lets keep in touch and mull over the ideas over the next 6 or so months.

Enthusiastically yours,

Ian :D

Re: I'm back)

Posted: Thu Mar 08, 2012 7:16 am
by badnights
Done deal. You're Head Geek. I will be Assistant Geek. Additions to the team accepted.

Both of us should try to think of messages we want to get across to the government. Anything that raises awareness and points funding toward research on treatment and cure. We could focus on children for the first of the series (I'm thinking big, it's already a series).

I mentioned somewhere else on this board that the ADHD association of somewhere had just come up with diagnostic practices for ADHD in children, who are being medicated as young as 4? and 5? they said; and nowhere did they mention a differential diagnosis of RLS/WED. I badly want to address that. How many children with RLS/WED are being fed ADHD drugs?

You're right, let's do some draft writing over the next 6 months. I will be away July and August without internet and not thinking about this that whole time, but I will return in the fall with a vengeance. (more likely with a burning need to recuperate for a month solid, but I will bury that).

Re: I'm back)

Posted: Thu Mar 08, 2012 7:52 am
by rthom
I'd like to help, maybe by then i'll have something tangible to add from my experiences here. Let me know.

Re: I'm back)

Posted: Thu Mar 08, 2012 7:53 am
by badnights
The three Canadians? Sounds good. At least we'll be speaking to the same government!

Re: I'm back)

Posted: Thu Mar 08, 2012 7:33 pm
by Baffledsilly
Haha) The army of the Nightwalkers begins to assemble!! How scary is an army that owns the darkness!!! But instead of bullets and guns we will use words and printers. Our bombs will be emails and letters to newspapers. We will keep fighting until the last doctor no longer dismisses this disease.
Wow, your right Beth. I think they may of thought I had ADD or ADHD when I was a kid. Was struggling in most classes and only did well in the one that interested me the most and that was English. If you couldn't use your language to best of your ability then the rest seemed trivial. So, they put me in special ed for 2 days then tossed me back in with the lions. Didn't help my already damage self-esteem, but I did manage to finish high-school.
I would hate to think some poor kid having to go through that just because he needs some sleep and a doctor who cares about him and not maximizing profits with what I call "Ford assembly line medicine". Hard to see the cure when your blinded by greed. Yes, they work hard and many many hours in the day, but so does everyone else...
This sounds good to me, and if we do it right it can only bring the change we have hoped for all our lives. If you have ideas, jot it down and stick it in a folder for later and we'll comb through our thoughts at a later date. When we assemble in the War Room to get this revolution started.

Viva la us!!!

Ian :wink: :D