Please help

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mocha
Posts: 23
Joined: Wed Mar 30, 2011 12:49 pm

Please help

Post by mocha »

Help, ii have been on mirapex for 20 years started off mirpex last Thursday now taking gabapentin and norco, cAnt stop moving legs what do I do? Of course no sleep for 2 nights straight. First three nights .25 mirapex + gab next night no mirapex
Just gab. Next night mirapex + gab and norco Feel like giving up this plan what can I do? Should I add small dose of mirapex to make legs stop movingly? No help from doctor at all don’t even have a taper plan. Shouldn’t these two drugs be helping my legs?

Rustsmith
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Re: Please help

Post by Rustsmith »

First off, gabapentin isn't strong enough to counter the withdrawal effects of the Mirapex. I will help once you are through withdrawal, but not right now.

As for Norco, if it isn't helping it is either because it only lasts for about 4 hrs or because you don't have a strong enough dose. You didn't say what strength you are taking and if it is helping and then wearing off.

As for Mirapex, it is very easy to get drawn into taking just a bit during withdrawal to try to get some relief, but you need to remember that every time you take one, you are extending the misery. A frequent suggestion is to give the bottle of Mirapex to someone you trust and tell them to hide it from you until you are past all of this.

Finally, remember that it takes about a week from your last Mirapex to get through the withdrawal. It is difficult if you don't have enough Norco and your doctor isn't helping, but you CAN do it. You just need to be strong and tough it out.
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
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.

stjohnh
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Location: Palo Alto, California

Re: Please help

Post by stjohnh »

Steve has good advice. The first few days off Mirapex are usually pure torture, the 2nd or 3rd day is when people are likely to give up. You just feel SO BAAAAAD... Now is not the time to give up, it will get better, but you are right, it just feels AWFUL. You should be able to take up to 8 Norco per 24 hours, max is limited by the acetaminophen in Norco. Max acetaminophen dose is 4 grams per 24 hours.
Blessings,
Holland

badnights
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Re: Please help

Post by badnights »

Hang in there! It gets better and it's worth the current agony! Take time off if you're working, and warn friends and family to stay away unless they're bringing food or cleaning the house, because you won't be able to accomplish anything. It is Oh So Brutal but you are halfway there, so don't wreck it by going back to the Mirapex. As Steve said, going back to it will just prolong the agony.

Once the medication is out of your system and your body has had a chance to re-set, you will not be in such agony.

The dose of Norco your doctor gave you is obviously way too little. You should not even be taking Norco, because you have no need of acetominophen; now your body has to metabolize something it doesn't even need. But at least it's something. Once your body stabilizes, the Norco might make a difference. The gabapentin will not help noticeably during augmentation no matter how much you take. Your doctor is unfortunately like most of them, quite uninformed about how to treat augmented RLS/WED.

Usually on the 4th or 5th day after your last Mirapex, you can see the light at the end of the tunnel. You will start to sleep for a few minutes at a time. The amount of sleep you get will increase more each day (as long as you don't take any Mirapex). You will be almost human again by 4 or 5 days after that; some people even sooner. Hang in there!!!!!

Remember why you're doing this: because RLS/WED is the devil's own torture; because Mirapex was augmenting it and making your life unbearable; because the only way out of that vicious circle of increasing dose and worsening augmentation is to stop the Mirapex completely; and because you will get a new lease on life when it's over. And it will be over soon, you're halfway to something much much better, so hang in there!
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

mocha
Posts: 23
Joined: Wed Mar 30, 2011 12:49 pm

Re: Please help

Post by mocha »

Thanks for all of the encouragement, I’ve had three nights since mirapex, it’s still rough, no sleep at night! I am usually able to take a couple of naps each day. I think it’s easier for me with less norco, it really makes me feel like a zombie, out of control!
My norco is 5 325 and last night I took 1/4 of a pill. My gabapentin is 100 mg and I took 4 of them! Another day is here I’ll go for a walk and hope and pray each day is better! This morning at 4:00 a.m. I felt a total calmness in my body and I got excited and thought I’ve made it! This feeling lasted about 10 min then back to kicking . All of your comments are so helpful

stjohnh
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Location: Palo Alto, California

Re: Please help

Post by stjohnh »

Your Norco dose is way too low. I would take 1-2 tablets every 4-6 hours until I was able to tolerate the urge to move (jumpy legs).
Blessings,
Holland

mocha
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Joined: Wed Mar 30, 2011 12:49 pm

Re: Please help

Post by mocha »

stjohnh wrote:
Fri Sep 11, 2020 3:43 pm
Your Norco dose is way too low. I would take 1-2 tablets every 4-6 hours until I was able to tolerate the urge to move (jumpy legs).
stjohnh wrote:
Fri Sep 11, 2020 3:43 pm
Your Norco dose is way too low. I would take 1-2 tablets every 4-6 hours until I was able to tolerate the urge to move (jumpy legs).
So if I increase my norco how do I know when my body is better not just the drugs working?

stjohnh
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Location: Palo Alto, California

Re: Please help

Post by stjohnh »

Well, once you are sleeping reasonably well, try cutting back on the Norco. HOWEVER, you may need opioids on a regular basis, unless you can get IV Iron. As others have pointed out Norco is not a good choice for regular RLS use. Your body will get better in the sense of improving dopamine receptors by getting off Mirapex. Mirapex and other dopamine agonists cause dopamine receptor dysfunction, while mostly reversible by getting off the med, some dysfunction may be permanent.
Really improving your RLS (not just feeling better) requires improving the low iron levels in your brain.
Blessings,
Holland

mocha
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Joined: Wed Mar 30, 2011 12:49 pm

Re: Please help

Post by mocha »

Norco is all I have at this time, my neurologist is not up to date on rls, I have appointment with a good rls neurologist but can’t get in until December. I am taking a slow release iron would definitely like to try the iron infusion not sure where to start

stjohnh
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Location: Palo Alto, California

Re: Please help

Post by stjohnh »

mocha wrote:
Sat Sep 12, 2020 12:22 am
... would definitely like to try the iron infusion not sure where to start
First you will need to educate yourself so you can help educate your doctor, or wait until December when you see your new one.

RLS is caused by BID (Brain Iron Deficiency). Many people with RLS can have their symptoms markedly reduced or even eliminated with IV Iron treatments. This is the only treatment that gets at the basis for RLS (low brain iron). It has almost no side effects. The International Restless Legs Syndrome Study Group has elevated IV Iron treatment to first line therapy. This means that IV Iron is one of the first treatments doctors should try, not one of the last (as has been done for many years). If you can get your doc to prescribe IV Iron treatment, that is the way you should go. Unfortunately this is fairly new information and most docs, even those that frequently treat RLS, are not aware of it. Note that the blood test doctors usually do to check for low iron (ferritin test) only checks for low BLOOD iron, there is no test available for checking for low BRAIN iron. Oral iron usually doesn't provide a high enough blood level increase to help, folks need IV Iron infusions. Here is a link to the recommendations:
https://www.sciencedirect.com/science/a ... via%3Dihub

In the meantime you might get some kratom. It will probably work as well as the Norco without the risk of liver damage from acetaminophen. You might also try to get an opioid without acetaminophen from your current doctor.
Blessings,
Holland

badnights
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Re: Please help

Post by badnights »

I agree with Holland, at least ask your doctor for hydrocodone without acetominophen. Tell him that you have learned that the pain of WED/RLS is not typical pain: it does not respond to medications like Tylenol or ibuprofen. So it would be better for your liver not to take that type of medication, since it is not needed.
This feeling lasted about 10 min then back to kicking
This means things are getting better! It should last longer and longer.

As Holland said, don't worry about cutting down on Norco until your sleep has normalized.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

mocha
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Joined: Wed Mar 30, 2011 12:49 pm

Re: Please help

Post by mocha »

Off mirapex for 10-11 days, taking gabapentin 4-5 at bedtime taking norco 1-2 bedtime, still cannot sleep ( kicking)
Will this ever get better!!

ViewsAskew
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Re: Please help

Post by ViewsAskew »

mocha wrote:
Thu Sep 17, 2020 11:40 am
Off mirapex for 10-11 days, taking gabapentin 4-5 at bedtime taking norco 1-2 bedtime, still cannot sleep ( kicking)
Will this ever get better!!
Some people are better in 5-10 days. Others of us? At least 20-30 before they saw a reduction in symptoms. A small percentage of us found it took months.

Hang in there.
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.

mocha
Posts: 23
Joined: Wed Mar 30, 2011 12:49 pm

Re: Please help

Post by mocha »

Now on neupro patch 2 mg and 400 mg Gabapentin, sleeping very good a bit tired in the day but only been on patch 2 days!

stjohnh
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Re: Please help

Post by stjohnh »

mocha wrote:
Sun Sep 20, 2020 3:15 pm
Now on neupro patch 2 mg and 400 mg Gabapentin, sleeping very good a bit tired in the day but only been on patch 2 days!
Don't spend a lot of money on the Neupro until you are sure you can tolerate the skin rashes. Nearly 50% of people taking Neupro stop it (including me several years ago) because of rashes. It is very expensive, so don't buy much until you are sure you can tolerate the rash.
Blessings,
Holland

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