Augmenting already! This is pure He!!

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SquirmingSusan
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Augmenting already! This is pure He!!

Postby SquirmingSusan » Fri Jan 05, 2007 7:36 am

I'm calling it quits with the Requip. Nasty nausea, shivering and chills, and lately, my symptoms are getting much, much worse, especially the pain. I tried to call the doc today, in hopes of getting something for the pain, but didn't connect. I'm taking way too much OTC stuff, and it doesn't even touch the pain. As I posted in the "I'll sleep when I'm dead" thread, I do have some old Lortabs and some Vicodin of my husband's. If I get desperate, I'll take some. 8)

I have a doctor appointment on Monday to review my sleep study and figure out the next step. I really do hope I can find something that works for the pain, helps me sleep, AND doesn't make me feel like a spaced out zombie during the day. Is that asking too much?:?:

What a weird disorder this is.

It could be a long, long night.

Susan
Last edited by SquirmingSusan on Sat Jan 06, 2007 12:25 pm, edited 1 time in total.

walkindafloors
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Postby walkindafloors » Fri Jan 05, 2007 8:37 am

I'm squirrmin right there with you tonight, Susan...only my augmentation is coming from the Mirapax (I think). I haven't been able to post here due to the tight muscle spasms I'm jerking around, shaking the house with for the past 2 hours and could wring water out of my gown! I've got every window wide open with no relief yet...I've done paper work, cleaned junk drawers, scrapbooked, until I can't concentrate on anything but moving and I'm not talking nice flowing motions here. Have already taken pain meds and ambien but wide awake...HELP :evil: Now it's raining and I need to shut the windows but I'll drown in my sweat.
These are the commercials we need to see on TV - the true RLS beast at work.

Hang in there and know you are not alone in this fight.
Who took the FUN out of disFUNctional?
Kim <><

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SquirmingSusan
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Postby SquirmingSusan » Fri Jan 05, 2007 11:38 am

Hey Kim, sorry to hear you're up and squirming, too. :(

My legs were kicking and spasming pretty bad there for a few hours, but after massaging them, trying to ignore them by doing sudoku, and walking around for a while, they seem to have settled down. I suppose the pain will come back now. It seems like I've been having such severe pain, but when I take the OTC painkillers, the pain relents a bit and lets those squirming worms loose in my legs. If someone saw me tonight, they'd think I have Tourette's. :lol:

At the moment, though, it's lessened, and now that it's almost 6am, I think I might be able to sleep for a bit.

There should be support groups for this that get together in the middle of the night and do the mallwalking thing...

I hope you get some sleep, Kim.

Squirming Susan

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Postby SquirmingSusan » Sat Jan 06, 2007 12:49 pm

Aarrrrggghhhhh!!!!!! This is worse than I could have ever imagined. :shock: I need to vent. I need moral support. I need my arms and legs cut off!!!

Last night was so bad, and I was in so much pain, and had to keep getting up to walk around to get rid of the creepy crawlies that were about sending me into orbit.

This morning I called my sleep doc (not in, and the nurses were clueless), and I called my regular doc, and managed to get past the guards at the front desk. Well, that's what they seem like. I got in to see her this afternoon.

She is so amazingly knowledgeable about this disease, it just blew me away. I told her I was trying to get off my Lexapro, and was almost completely off of it, and was taking St. John's wort instead, and how well that was working for me. She about flipped. She said that yes, it works, but that it has a list of drug interactions a mile long. Then she sat there with me for about an hour, looking at her Blackberry, or whatever electronic device she has, for something I can take for the pain while on SJW.

Nada. No narcotics. They all have interactions with the SJW. Just ibuprofen and she said I should probably try to take less of that. And less of the Lunesta. The one antidepressant that doesn't turn me into a zombie, and it interacts with everything on the planet. Aarrrggghhhhh!!!! She wrote me a script for diazepam, since I was on that for years for something else, and it kept the RLS away.

Well, the augmentation is so severe that the valium hasn't even touched it. My legs ache. My legs are crawling and kicking. My arms have a herd of snakes crawling through them. I am so frigging tired I could cry.

Those of you who suffered through augmentation, how long does this typically last? A few days I can handle, but I'll be into those opiods of my husbands if I don't get some relief.

Drug interactions. :cry: I was so happy to find something that worked for my depression that's not an SSRI. The doc says that it's an MAOI. Great drug, very effective, but she hates it because of all the interactions. We talked about my switching to Welbutrin, but she said to just get through the next 3 months or so before messing with my system anymore.

I hope this augmentation goes away soon. The valium used to be really effective, and I'm hoping it will be again.

Sorry, I must be repeating myself. I am just so tired and so at my wit's end.

Seriously Squirming Susan

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Postby jumpy » Sat Jan 06, 2007 2:38 pm

OK Folks, this may be a little off course...But... I have a kidney stone. Actually 2 kidney stones. Passed one..I have been put to sleep twice this week for "procedures" and been given Dilaudid off and on for pain. No pain in the legs or jumpy legs while in the hospital. The stones started to pass on the 1st and today is the 6th. I woke up with the pain in the legs this morning. Proof to me that pain killers work on really bad RLS. Because whatever they put me to sleep with and the Dilaudid were in my system long enough to kill the RLS pain. Of course the pain from the stones could have been a little bit distracting. I know I have augumented on Sinimet and Requip and plan to bring up this new "proof" when I see my GP in a couple of weeks. He still thinks the Neurotin should be working on the pain. It don't...He does allow me 2 Lortabs 7.5 a day. Not enough some days...I really missed you guys while I was away. I felt sorry for myself having lobor pains again a age 59....Pat

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Postby walkindafloors » Sat Jan 06, 2007 4:08 pm

Like you, susan, I had given in and went to my neuro yesterday for some relief after 4 days of nearly no sleep, sending me into the dreaded panic state all of Thursday night :twisted:

I thought I may be augmenting on the mirapax (taking 2.50 mg at night) but instead she wanted me to incrase to 3 tabs vs 2. I was so out of it, doing my usual sleep-driving, and couldn't remember how to find her office (that I've been to so many times) I had to call on cell to get there - then and was only 3 blocks from there. I forgot to ask her what a normal range was for Mirapax. Anyone know? Anyone taking 3 tabs okay?

Dr. thinks my ADHD meds (Concerta) may be the cause for increasing rls symptoms. So now no Concerta and she added Ambien CR which "worked" since I slept over 12 hours straight and am still dragging around here like an out-of-body experience :cry: YUCK and NO THANKS - I'd rather be up walkindafloors, chatting here, or getting something productive done.

HOW do we know what to do??? Most frustrating for me. I want to trust the dr. but darn, I'm not about sleeping my life away then feeling like crud for the next two days! Dr. comment, "Well, this just happens to you guys sometimes. Get some sleep and things will get back to usual." She gave me 2 sample pills and a coupon for 4 more (which had expired so Rx wouldn't fill it for free - thanks, Dr).

I'm so grateful for this site to vent and learn from those of you who have been there, done that. I'll try to keep my eyes open to watch for replies :roll:
Who took the FUN out of disFUNctional?

Kim <><

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Postby ViewsAskew » Sat Jan 06, 2007 10:08 pm

Walkin - the average daily dose of Mirapex for RLS is usually 2.0 mg or less. The most usually prescribed at one time is 1.5 mg. So, if you are taking this all at once, you are double the highest dose listed in Dr B's book. If for no other reason, this book is wonderful, FYI. Now I always know what the recommended doses are.

I'm not a doc. And, maybe she's right. But, please pay attention. If this doesn't work well and immediately and if you get ANY additional symptoms, hold your ground. I let my neuro do that to me so many times. . .I just didn't know enough to say NO.

Have you been on Concerta for awhile? There have been some reports on this site that ADHD drugs can actually help RLS (both problems are with dopamine). It could be worth stopping it to see, though I don't know how much that would affect your other abilities to get through the day.
Ann - Take what you need, leave the rest

Managing Your RLS

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Postby ViewsAskew » Sat Jan 06, 2007 10:13 pm

Susan, that sucks. SJW seems such a great choice - except the other problems with other drugs.

Augmentation from drugs is hard - it can last a few days - or weeks. And, in at least one case - it was permanent. Not trying to scare you, but I don't want you to have false expectations. Dr B basically says that only opioids will help you get through that period - or you suffer (and as you are finding out, a lot). What would happen if you stopped the SJW just until you are through this period and used an opioid to get through it? Would that be better or worse for you? I don't know what the depression is like for you or how much it affects your ability to do other things. It could be that this would be just as bad as going through the augmentation.

This is when I have a really hard time being calm and accepting things. I am beside myself. I know that when I am calm it's easier to live with, but I just get so wound up. I hope you can find a way to get through this more comfortably.
Ann - Take what you need, leave the rest



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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.

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Postby ViewsAskew » Sat Jan 06, 2007 10:14 pm

Hi Pat,

I've heard about how awful those can be! Yikes. . . Glad it gave you more ammunition to take to your doc, though.
Ann - Take what you need, leave the rest



Managing Your RLS



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SquirmingSusan
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Postby SquirmingSusan » Sun Jan 07, 2007 8:34 am

ViewsAskew wrote:Susan, that sucks. SJW seems such a great choice - except the other problems with other drugs.

Augmentation from drugs is hard - it can last a few days - or weeks. And, in at least one case - it was permanent. Not trying to scare you, but I don't want you to have false expectations. Dr B basically says that only opioids will help you get through that period - or you suffer (and as you are finding out, a lot). What would happen if you stopped the SJW just until you are through this period and used an opioid to get through it? Would that be better or worse for you? I don't know what the depression is like for you or how much it affects your ability to do other things. It could be that this would be just as bad as going through the augmentation.

This is when I have a really hard time being calm and accepting things. I am beside myself. I know that when I am calm it's easier to live with, but I just get so wound up. I hope you can find a way to get through this more comfortably.


Oh, I know, Ann. The SJW is wonderful for the depression. I've tried so many of them and they all make me feel like a zombie. Except for Welbutrin, which was a bit too energizing and made my blood pressure go up. But since using that I've had gastric bypass and lost a lot of weight, and my doc doesn't think the blood pressure would be an issue.

I really don't want to quit the SJW - It's a long-acting drug that takes 2-6 weeks to become effective. I've quit antidepressants cold turkey before, and it's never been a good experience. I feel great for a while, then one day I want to put a gun to my head.

The augmentation has just been horrible. Worse than I could have ever imagined. It feels like someone let a herd of snakes loose in my arms and legs, plus excruciating achy pain in my legs. When I take 2 ibuprofens and 2 tylenols at the same time, the pain dissipates a tiny bit, but the snakes go crazy.

Yes, I've gotten desperate enough to take the hydrocode that is around the house. Hours of pain and squirming, and 1 lousy pill takes it all away. I've googled studies on the interaction between SJW and opiods and can't find anything that says they interaction is particularly dangerous - the SJW blocks the narcotic, so if I were to quit the SJW, all of a sudden the narcotic dose could be too high, and I could overdose. Yet another reason to stay the course and wait to do some long term planning with the doctor.

My doctor was firm about not changing anything - stay on the SJW, use the valium, and see her in 3 months for more long-term planning.

I'm just glad I have a small supply of the hydrocodone. It should be plenty to get me through the worst of this. If I didn't have it, I would have had to go to the ER by a couple days ago.

The hydrocodone doesn't give me a hangover the next day, I sleep OK with it, and it kills the pains and the creepy crawlies. I'm thinking that's probably going to be the longer term treatment of choice.

My doc said some really interesting things about Sinemet, btw, for those of you who take that. She says that it's absolutely the most effective drug for RLS, but she doesn't like to use it because of the augmentation and tolerance. She said that if you take it, and develop Parkinson's later in life, there will be no drug treatment for you. Well, I'm a bit more optimistic about drugs being created to treat all these weird conditions.:wink:

Thanks for the support, Ann, and the rest of you who wander around in the nigh! I'm actually doing much better today. The pain doesn't have me incapacited, and no creepy crawlies yet. Dr. B says it takes 2-4 weeks for the dopamine receptors to get back to normal after augmentation, but I'm hoping for a quicker recovery time. I think it really helps that I wasn't on the Requip that long (7 weeks), and that I quit as sure as I knew I was having severe augmentation. (And I didn't listen to the sleep clinic nurses who told me to just take less of the Requip. I like the doctor there, but the nurses seem completely clueless about the RLS.)

Also from the Dr. B message board - He says that a couple tokes off a joint works miracles, but warns that there are difficulties (obviously) with that approach. 8)

These last few nights I would have lit a turd on fire and smoked it if it promised relief. :shock:

Well, I'm going to try to sleep. Good night, sleep tight, and don't, er, let the snakes loose in your bones.

Squirming, but hopeful, Susan

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Postby Walking After Midnight » Mon Jan 08, 2007 4:40 am

Susan...it's great you are getting relief from the Hydrocodone.
Wonderful.
For me it's been a miracle. Somedays it's like I don't have RLS. I still worry about long term effects, I still worry about dependence...as I do on the Lyrica I take. I still hope and pray someday to be off these drugs but not now.

God Bless.
Randy

walkindafloors
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Postby walkindafloors » Tue Jan 09, 2007 4:27 am

thanks for responding, Ann - regarding the Mirapax and the neuro's suggestion to increase to 3 tabs (3.75 mg) at bed time vs the recommeded daily dosage. Why is it the docs get an attitude when we seem to question them? When I told her about two being the max daily recommeded dosage, she quickly suggested I just take an Ambien CR so I can get some sleep then all will be well again cause "these things happen to you guys." I told her I have issues taking 1/2 of a regular Ambien and got the lecture of CR being a lower dose at one time... so I tried taking one Friday night and was "out of it" all weekend and even today felt so weird. Neruo also told me to hold off the Concerta to see if there is a connection but I am worried - having to be in court 8 times in January I need to be able to concentrate and get my mess together - with or without sleep. I've now sworn off Ambien CR forever. I printed off a bunch of stuff from the post of managing rls, just hoping I'll get time to read it soon and hoping the neuro doesn't get frustrated with me questioning and send me packing (like the MD did when I questioned her) :cry: Has anyone pushed the Mirapax to 3 tabs?
Who took the FUN out of disFUNctional?

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Postby ViewsAskew » Tue Jan 09, 2007 5:51 am

I know Jan was on a high dose - maybe a total of 4 mg - for awhile. SOmeone else was, too. It's not that you can't do it. It's just a question of if it's worthwhile to you. . .or if it's keeping you from something better.

There are always some people who don't respond well to average doses. But, there are many docs in our field who feel that more is not better. Corrie, our member from the Netherlands, has posted many times that one of her docs feels that way, too. Let's see if I can make this clear (it makes sense in my head!). When you take .25 mg of Mirapex and then take .50, that 100 percent increase gives you, say, 100% additional effectiveness. When you go from .50 to 1 mg, same thing. But when you go from 1 mg to 2 mg, you only get, say 25 percent more effectiveness. And when you go from 2 to 4, you get maybe less.

I'm making up the percentages as I don't know what they really are, but this is the philosophy some of our best research docs believe. Unfortunately, most neuros aren't anywhere near as well informed :cry: ,

You have to do what you think is best. If this increase helps you, go for it. If it doesn't make things better ASAP (within a few days), then please go back and put your foot down. It may be that the Concerta is affecting the RLS (again, I haven't heard of this - maybe post Dr B and see what he says), but taking more Mirapex won't resolve it when 2 mg dose doesn't. Maybe another med would. Maybe Mirapex just isn't the best med for you at this time.

I'd love to know how to get them to stop with the attitude.. .
Ann - Take what you need, leave the rest



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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.

cornelia

Postby cornelia » Tue Jan 09, 2007 9:51 am

This is research on 'less is more'

Less is more: pathophysiology of dopaminergic-therapy-related augmentation in restless legs syndrome.Paulus W, Trenkwalder C.
Department of Clinical Neurophysiology, University of Gottingen, Gottingen, Germany. wpaulus@med.uni-goettingen.de

Therapy-related augmentation of the symptoms of restless legs syndrome (RLS) is an important clinical problem reported in up to 60% of patients treated with levodopa and, to a lesser extent, with dopamine agonists. The efficacy of low-dose dopaminergic drugs for RLS has been established, but the mode of action is unknown. Here, we review the existing data and conclude that augmentation is a syndrome characterised by a severely increased dopamine concentration in the CNS; overstimulation of the dopamine D1 receptors compared with D2 receptors in the spinal cord may lead to D1-related pain and generate periodic limb movements; iron deficiency may be a main predisposing factor of augmentation, probably caused by a reduced function of the dopamine transporter; therapy with levodopa or dopamine agonists should remain at low doses and; iron supplementation and opiates are the therapy of choice to counter augmentation.

I wonder why it says that to counter augmntation you need iron supplementation and why opiates and not e.g. anticonvulsants?

Corrie

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Neco
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Postby Neco » Tue Jan 09, 2007 2:26 pm

I imagine it has something to do with which receptors the different drugs bind to, and how that particular drug acts on said receptor. Much in the same way you may notice a difference between the various painkillers. They just have different effects due to their design.

I don't know much of anything about anticonvulsants, so I can't really comment on them


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