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Posted: Wed Jan 10, 2007 4:52 pm
by Anonymous

Posted: Wed Jan 10, 2007 5:23 pm
by ViewsAskew
Em - no clue. Most of us do not respond that easily when we have augmentation. But, most of us de-augment (for lack of a better word) within 3 days to 3 or 4 weeks. You didn't at all. I only partially did. It could be that Susan had only augmented for a short period, so stopping the meds quickly, for her, was enough to handle this. I sure wish we knew more about this, especially for you, dear.

Posted: Wed Jan 10, 2007 9:50 pm
by SquirmingSusan
Make Mine Coffee wrote:Susan- One hydrocodone can take all of your augmentation away?

Ann, how is this possible? I mean, how can severe augmentation respond so well to a medium potency opioid and I am taking 8 mg doses of Dilaudid with only partial relief of leg symptoms?

Susan, I say if hydrocodone works so well for you- TAKE IT!

Yup, that's what Dr. B said to me in an email. Take the opiods. Of if my primary doc is too weird about narcotics, try tramadol.

I don't know why 1/2 to 1 of the lowest dose hydrocodone works for me. Possibly because I have a very high (and scientifically documented) natural tolerance to pain. Possibly, as my doctor says, because I am very sensitive to medications in general. Or possibly because I quit the Requip within a week of the symptoms getting worse - as soon as the symptoms started to get exponentially worse. And I ignored the nurse who told me to just take it at a lower dose.

Last night and today have been difficult, though. I didn't have any sedation from the Vicodin, and I could tell that the symptoms were right on the edge of breaking through. And today I've been having horrible leg pain. I just have to try to keep distracting myself from it. It's only been a week since my last Requip, so I'm hanging in there.

Emily, people are so different in how we handle meds. You need to keep advocating for better symptom control. I know that's hard! It just makes me ill how the medical profession is so terrified to treat pain. Fortunately, there are always other doctors out there, and I'm not afraid to "fire" my doctors if they're not working with me. They exist to help me, not the other way around, and if they won't prescribe what I need because they're terrified of the DEA, then it's time for a new doc. I went through years of misery with my vertigo and inner ear damage before I found a doctor who was willing to actually TREAT the condition with benzos. He just deals with the DEA, and I had to go in yearly for my annual "DEA checkup." He made no bones about it that he didn't really need to see me if my symptoms were under control; it was all to comply with the DEA. I was a good lab rat for the medical students, too, because my case was interesting.

I'm really getting cynical about the American health care system. It seems like the government is increasingly interfering with on legal health care. My kids had colds a couple weeks ago and I couldn't believe what I had to go thought to get pseudoephedrine. Cold medicine!!!

Apparently a lot of people who have chronic pain lie about being addicted to heroin so that they can get into methadone programs. Because they can't get pain meds from their own doctors. Something is wrong with our system.

OK, I'm done ranting for now. I'm going to bundle up and take my dog for a walk.


Posted: Wed Jan 10, 2007 9:54 pm
by SquirmingSusan
walkindafloors wrote: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:

Hey Kim, what's happening with you? Are you getting any answers? Let us know.


Posted: Sun Jan 14, 2007 6:36 am
by Hos
ViewsAskew wrote: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.

Or maybe on top of the Mirapex then add another med like Neurontin. Or some other good cocktail where all the meds taken have full bio-availability instead of taking high doses of ONE med which offers less the more that is taken as Ann pointed out.

I wish we had more studies about augmentation. You would think from all the studies on Parkinson's disease there might be something. I also wonder if it's true that there is permanent augmentation. My doctor just put me back on Mirapex and will now lower my Neurontin but if Mirapex will give me a short term gain but long term increase in symptoms, no thanks. Who knows?

FYI: This is what Dr. B says on Page 50:
...I have ADHD and take Concerta 54mg and a 15mg Dexedrine spansule in am and again in pm.
There is no right or wrong way to taper off Sinemet and start Mirapex. What I recommend to my patients is to start at the lowest Mirapex dose of .125 mg and work up (if needed) to the lowest dose that takes care of the RLS as the Sinemet is being decreased.

You would think that if Concerta causes augmentation that Dr. B wouldn't personally be taking it. Who knows.

Posted: Sun Jan 14, 2007 6:46 am
by ViewsAskew

I wish we had more studies about augmentation. You would think from all the studies on Parkinson's disease there might be something. I also wonder if it's true that there is permanent augmentation. My doctor just put me back on Mirapex and will now lower my Neurontin but if Mirapex will give me a short term gain but long term increase in symptoms, no thanks. Who knows? [/quote]

Well, Emily and I can attest to permanent augmentation. It's been almost two years for me - it hasn't gotten less, so I doubt it's going to! Hos, doubt you went back two years and read my story, but the short of it is that I had RLS maybe twice a month, but nightly PLMs. The Mirapex for the PLMS augmented me to daily RLS within a week. The doctor didn't understand it (and I didn't know 1/100 of what I do now), so he just kept increasing it. Neither one of us knew that eventually I'd have 24/7 RLS. Now, the methadone keeps it at bay 90-95% of the time. But, I still have it daily - not a couple times a month.

I, too, wish they had more studies on augmentation. PD literature can't help us, as augmentation is (as the docs said at the 2005 conference) only applied to RLS. There is no other condition that has augmentation as a side effect.

Since most drug studies only last 3 months and most people augment after that, the chances that they would get someone would be slim. I often wish I'd been in a study. At least it would be documented.

Mirapex dosage

Posted: Sun Jan 14, 2007 8:14 pm
by earthbaby
I am ready to quit my neuro - when I call the office to let them know the rls is getting worse, all i am told by the snooty nurse is that she spoke with a doc, usually mine is not available, and they say to increase it. I only take one pill, that night i took 1.5 and in the morning - i had no whites to my eyes they were so bloodshot and i couldn't get past the fog to get to work.

augmenting already! This is pure he!!

Posted: Sun Jan 14, 2007 9:57 pm
by ctravel12
Hi and welcome earthbaby. I agree with changing neuro's. If they cannot work with you it is important to find someone who can and will work with you.
Do not settle for anything less. It is your body.

Your quality of life is very important.

Read alot of the old and new posts as it important to educate yourself as much as possible when you see your dr (hopefully a new one)

You have found a good board as everyone here is very supportive and willing to help you as much as they can.

Posted: Sun Jan 14, 2007 10:02 pm
by ViewsAskew
earthbaby, please read about augmentation - it might be why the RLS is getting worse. Taking more meds may not be what you want to do. Truly, the best defense it to know as much as your doc does (not hard to do, unfortunately).

Happy reading! Start by clicking on the link in my signature - good reading and education there. Also, ready every sticky in each section, too.

Posted: Sun Jan 14, 2007 11:27 pm
by walkindafloors
I'm not sure I've really reached the stage of augmentation with the pm mirapax dosage or not - it just seems my legs "kick in" even after I've taken the 2 tabs. I remember about a year ago I was only on Sinamet and between Oct. and Dec. 05 thought I was going insane before I just decided to take myself off the meds. (I wasn't aware of this board at the time or could have saved myself much suffering). Within a few DAYS I could tell a difference - my legs almost stopped completely for a spell after coming off the Sinamet :D

But then a few months later when the legs began again, I started back on the Sinamet and it did work again for a spell. Now I'm taking the extended release Sinamet in the day time (I know, it's only suppose to be used short term, but when I don't take it, my rls continues 24/7) then I still take 2 mirapex at bedtime (again, working some nights and not others). I also do the Ultram thing (100 mg.) as needed - most nights - and now when I can't sleep due to the rls in my legs and lately arms, I take 5 mg. of ambien that will usually keep me sleeping. Nothing ever seems to work all the time, so I'm settling for 80/20 and trying to be satisfied for now. I've got some other medical things going on that I need to deal with so...choosing which beast to battle with day to day :?

augmenting already! this is pure he!!

Posted: Mon Jan 15, 2007 3:55 am
by ctravel12
Hi Kim That is so true that nothing seems to work all of the time. I am glad that you are getting some sleep and hope that you can get your rls under control.

Saying a prayer for some of the other medical things going on in your life.

Have a nice and restful evening.