Finally!!!!! some medication!!!!

For everything and anything else not covered in the other RLS sections.
Polar Bear
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Post by Polar Bear »

Yes, I also have rls 24/7 and spread my dose of 2mg requip throughout the day.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
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SquirmingSusan
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Post by SquirmingSusan »

Momo wrote:how am i suppose to take it befroe my symptoms when i like always have them?


That IS a problem. You may need more for your initial dose to get it under control, and then find that if you take it consistently you need less. Are you planning on taking it several times a day, or just in the evenings?

I'm hoping that the Neupro patch becomes available again here in the US. I think it's back on the market in Europe. That's like Mirapex or Requip, but works around the clock, and with less risk of augmentation.
Susan

ViewsAskew
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Post by ViewsAskew »

Did your doctor talk to you about that? About whether he wanted you to try and control it all the time or just at night?

I imagine that most people with 24/7 RLS take more medication than those who have it primarily at night. You may be one of those people who needs to spread out the medication throughout the day, as Polar Bear does.
Ann - Take what you need, leave the rest

Managing Your RLS

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Momo
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Post by Momo »

my doc has been slightly less than helpful lately
Never go to a doctor whose office plants have died.

ViewsAskew
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Post by ViewsAskew »

Ugh....it's horrible to be in that position, isn't it?

I hope you can get his attention as it's hard to feel that you don't know what choices to make or what you should do. Some of us treat ourselves and that isn't always a wise choice.

Momo, maybe writing a letter to Dr Buchfurer at rlshelp.org might help. He could tell you what he'd suggest. His direct email is somno@earthlink.net.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Polar Bear
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Post by Polar Bear »

Hi folks,

Without looking this up to check I can't be 100% but I think that Dr Bs email address has changed from 'earthlink'. If you go to the rls Southern California site and use the email link on that page it is fine. Off the top of my head I think it is somno@verizon.net.

Please check this, as I am just up on a little rls walkabout and not operating on full cylinders. :roll:
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

ViewsAskew
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Post by ViewsAskew »

Oops! I don't ever go to his page as his email addy is in my address book. Thanks for letting us know.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Momo
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Post by Momo »

thanks. i'll try to send him a letter later, when i am more awake
Never go to a doctor whose office plants have died.

HeatherB
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Post by HeatherB »

Figure out when your symptoms seem to be the worse for you and take it about an hour before that time frame.

Polar Bear
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Post by Polar Bear »

Yes, I had Dr B in my address book, and email was returned. When I found the new address, it also didn't work when I tried it directly from my own email, (prob my own fault in some way) and I had to use the link on the rls southern cal site and it was fine.

Good luck
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

Momo
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Post by Momo »

I think I am becoming very frustrated witht this whole medication thing. Like i really wanted to get some because i was miserable, but now that i have some i am still miserable because it is not working at all, and i am in the midst of exepirementing with the right dosage of teh right medication.

How am i ever going to figure out whats going to work for me since it seems liek every oen is taking like some of this and some of that. what if i like move on to something else when i really need to have some of one drug with some of another drug??????

and the stress of it is certainly NOT helping at all. My symptoms are SOOOOOOO bad tonight and i just took my last mirapex, not that it was helping anyways.

am i totally blowing this out of proportion???

ViewsAskew
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Post by ViewsAskew »

Are you blowing it out of proportion? Well, I guess my response would be tht are feelings are our feelings - they aren't ever out of proportion. It's what we do after we recognize them that counts.

I get every bit as frustrated, especially when I'm tired and feeling overwhelmed. But, eventually - hopefully sooner than later - I "wake" up in terms of allowing myself to be driven by my feelings, recognize my feelings for what they are, and then try to figure out how to get on with my life.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Momo
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Location: NH, United States

Post by Momo »

but how do u figure out what medication works?!?!
Never go to a doctor whose office plants have died.

SquirmingSusan
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Post by SquirmingSusan »

You keep trying. :(

A lot of us have tried in the range of 10-20 different medications or more before figuring out what works the best, without horrible side effects. It's a long, frustrating process. Get support from whoever will listen to you and encourage you.

There are other internet support forums that have a lot of teenagers with chronic illnesses. One of them that's really good is "butyoudontlooksick.com". Of course you are always, ALWAYS welcome here. It just might be good to hear from other young people and how they cope. You might even find a local support group by calling a local hospital and seeing what's available.

The general course of prescribing medication usually follows the Mayo Clinic Algorithm (if the doctors are up on RLS): First they try the dopamine agonists like Sinemet, Mirapex, or Requip. If those don't work, then the anticonvulsants like Neurontin or Lyrica (and others). Then they move on to the opiates or the benzos. Opiates/opioids work for just about everyone.

Some people have had success with ADD drugs like Ritalin, because those increase dopamine levels. Others have had luck with Clonidine, which is a blood pressure medication.

Meanwhile, bone up on self-help and coping skills. Jill Gunzel's website is great for practical ways of beating back the RLS.

It's a long, hard process. My heart goes out to you having to deal with all of this at such a young age. You'll get there, though. Hang in there!
Susan

Aiken
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Post by Aiken »

Momo--

A bit of an insight so you understand why some of us can just sort of say, "Give it time, keep trying," when you feel like nothing's happening, nothing's working, and you're doomed.

Time sort of speeds up as you get older, or at least it doesn't feel like everything takes for-effing-ever to happen. I dunno, maybe it's just that you get to the point that you automatically understand that time will pass and things will change, or things will happen, so the waiting isn't torturously stressful and uncertain. Whatever the case, it's just easier to deal with a series of small failures when there's still a pretty big set of potential successes remaining.

So, even though you won't experience this yourself until you've got a few more years on you, please take it on faith that we're telling you things that we've actually done or experienced, and we're not just being overly hopeful and offering empty promises to try to get you to smile. It's like... you can probably take it on faith that people live past 20, because you see a lot of people older than 20. In the same vein, there are a lot of people here who've struggled, and some are still in the middle of struggling, but if you take a close look, you'll see that a lot of us have worked out a way to feel okay. Maybe not perfect, but okay. I hope if you can see that, that it'll give you some hope that you, and the others still struggling, will happen on the right combo eventually too.

For what it's worth, you're following the usual path of diagnosis and attempts at treatment. You're doing everything right, which isn't even true for a lot of adults. Some people get to stop sooner on the path, some later. One of the things that following the usual path will do for you is to give you credibility when it comes to trying more aggressive treatments that your doctor would not have been willing to try early on. For instance, no doctor is going to give a teenager the sort of painkillers a lot of us use, for fear that the patient is simply drug-seeking and/or will abuse it, which is quite understandable in today's lawsuit-ridden society. However, if you've been miserable, but willing to try everything he wants you to try, at some point he may feel that it's time to try a bigger hammer, and give you something like that, and maybe that'll be what works for you. It's not the best process, but at least it's there.
Disclaimer: I often talk about what I do and what works for me, but these are specific to me and you should always consult a healthcare professional before trying these things yourself, lest you endanger your health or life.

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