Hate the downs of the ups and downs

Use this section to discuss your experiences with prescription drugs, iron injections, and other medical interventions that involve the introduction of a drug or medicine into the body. Discuss side effects, successes, failures, published research, information about drug trials, and information about new medications being developed.

Important: Posts and information in this section are based on personal experiences and recommendations; they should not be considered a substitute for the advice of a healthcare provider.
ViewsAskew
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Hate the downs of the ups and downs

Post by ViewsAskew »

Just about a year ago I went to see Dr B. It was the up of the following 12 months.

After trying several combos, I'm absolutely depressed.

It's the oddest thing. Literally .125 mg of Mirapex resolves night time RLS. A tramadol or two resolves the day time - the rest of the daytime I can live with.

But it takes the upper limit of every frackin' opioid to resolve it and I often still get major breakthrough. The side effects of the opioids are beyond annoying.

-Every one of them amps me to some degree - it's as if I'm finally awake and functional after over 20 years of sleep deprivation. The problem is that is starts at about 8 PM and lasts until 4-6 AM. Methadone is the worst. How the frack am I supposed to work????

-Every one of them except methadone creates 10-20 myofascial trigger points. My neck is immobile. My shoulder is now immobile. And I have a 24/7 headache. The shoulder thing has put me over the edge. I can't type for more than 5 minutes at a time. Guess what I need to do for work? Yep, type.

-While methadone doesn't cause the myofascial trigger points, see the one listed above. Also, it makes me into a zombie the next day. I can't think, put two words together, heck I can't even think of words half the time. Guess what else I do for work? Yep, I put words together.

So heck, why not use Mirapex? it works at a low dose, right? Sure, but it does the following:

-if taking it five days and a drug holiday on weekends for two days, within 10 days I have augmentation.

-it makes my mind turn into ADD brain. I have multiple thoughts going on simultaneously often while my brain is singing 1 or more songs. These songs can loop for days.

-it prevents orgasm.

Gee. What choices!


I haven't a clue what to do.
Ann - Take what you need, leave the rest

Managing Your RLS

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badnights
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Post by badnights »

Oh Ann!!

Keep trying those combinations. Your response to each drug won't necessarily stay the same over time, so something might start working that didn't used to.

Just one visit with Dr B? Are you scheduled to go back?

Has he mentioned anything about trying a - umm, what do you call it, an alerting drug, to deal with the daytime zombieness of methadone? And a hypnotic to deal with the nighttime alerting effect? I know this is using dugs to treat side effects of drugs, but it might be the only choice you have .... and it might work.

And you can still rotate a bit, if you're likely to get tolerant to the methadone, preferably to something better than the Mirapex but perhaps you can rotate to Mirapex if you can sacrifice 2 days now and again (as IF).

Oh Ann; there has to something out there! Keep looking and start dictating a book. When I get rich I'll hire someone to make a best-selling award-winning documentary about RLS and even-richer people will start donating and all the young researchers will want to study RLS and in a few years we'll have effective treatment and then in a few more years we'll have a cure.

Polar Bear
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Post by Polar Bear »

Ann, you know so much about this condition and are always on the ball with information for the rest of us. You help so much and yet are suffering so much yourself.

Just want to thank you for your continual support.

Its a long way to see Dr B, but is it email time.... ??
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
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Polar Bear
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Post by Polar Bear »

Ann - just seen on another thread that you are thinking of visiting Dr B.
Excellent.
Betty
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

ViewsAskew
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Post by ViewsAskew »

Polar Bear wrote:Ann - just seen on another thread that you are thinking of visiting Dr B.
Excellent.


That must be an old thread. I've already seen him, but it's been about a year ago.

I've tried so many combinations...I just don't want to do it anymore. I know that's silly because I'll have to, but. I. Do. Not. Want. To. [see me stamping my feet]

Beth, I've tried both - the sedating things either aren't enough to overcome it (the short acting ones) or they add to the zombieness the next day (Lyrica and Neurontin both work great to help me sleep). With Lyrica and methadone I could sleep 12-14 hours at a time. I wake up lethargic and don't get functional again until I take the first dose of methadone. I must be extremely sensitive to the alerting ones - I just don't like how it feels - it's not normal. It's so ironic - the methadone makes me feel perfectly normal and awake....at midnight. Over time, the daytime effects of the methadone get even worse. I need to have something to alternate if I take it. Oh, and I forgot the part where I'm only 5 mg from the highest dose allowed. If I take it regularly, I'll be there in 10-12 months.

I'm back on methadone as of tonight. It's 3:33 and here I am. I watered all my plants (over 200 as of now), swept, repotted some plants, had a piece of apple pie....but I haven't gone to sleep. I have to be up relatively early to make a dish to take to my inlaws for a family party. Oh boy.
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.

ViewsAskew
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Post by ViewsAskew »

Oh, I forgot the most important part!

Thank you all for caring and your kind words.
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.

badnights
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Post by badnights »

It's so hard to think of encouraging things to say in the face of such an intractable disease. You need to heed your own advice at this point and remember that you haven't tried everything out there. I KNOW you're sick of trying :(

I totally get you on the alerting effect, I got that even with codeine and now get it quite strong with the hydromorphone. It gives you a brain snapping alert when you need to sleep and no brain at all when you need to think. What if you restricted the methadone to daytime doses? I suppose it would be worn off too much to allow sleep?

I forget what drug you're alternating with and it's really hard to search where you might have said it because you made so many replies to the rest of us when we were crying! Is it the pramipexole?

So you for sure need to alternate with something, and you for sure need something to help you sleep - does the lowest Lyrica or Neurontin dose help sleep but still cause zombie, or can you lower the dose? (I'm sure you've tried) Neurontin comes as low as 100 mg capsules. Have you tried carbamazapine? It might not cause a zombie effect. I KNOW you're sick of trying {{{{{{{{{{{{{{{{{{{{{{Ann}}}}}}}}}}}}}}}}}}}}}

This low too will pass away, it will end, and the gifts you were given and have learned will assert themselves and you'll once again look forward with hope and determination. See Dr. B again! Time for brainstorming with someone who knows the right stuff.

fraujoolie
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Post by fraujoolie »

Hi Ann,

I'm sorry you're so miserable with the meds! It sounds really frustrating. If it's any consolation, it took me a good two or three weeks to adjust to taking Methadone. I felt like Death-Warmed-Over at first. I was amazed at how horrible I felt in the morning. I can't imagine how horrible a heroin addiction must be, if they have to take upwards of 100mg to curb their withdrawls. With something like 2.5 mg, I felt like I was run over by a truck.

I talked to Dr. B about it right away, and he suggested I even quarter my pills, until I could ease up on the dosage. I cut way back (I think I started out with something like 0.5 mg), and slowly eased up. I think some of our bodies just need to get used to it.

Do you think that maybe all the switching up of meds might be harder on your body, then trying to get it to settle down on one? When I was detoxing off of Mirapex (augmentation), I had to go through a series of different opiates, and it was really hard on my body. When I finally got myself used to and stabilized on Methadone, I felt a lot better. I'm not a doc, but it's just an idea.
Julie

ViewsAskew
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Post by ViewsAskew »

To answer a few questions....

I was on methadone for over 4 years - initially it was great, but anything would have been great that resolved the intense augmentation. I won't bore anyone with the details but I went from thrilled to be on it to hating it and the side effects. Since stopping methadone last December, I first spent 6 weeks on a temporary combo to see if we could reset the amount of methadone needed - it didn't work (I currently need 25 mg all within a 10-12 hour period if I want to get any sleep). Then I spent two months on a one combo, then 6 weeks on another, then 3 months on another, etc. All of these cause a similar problem and I truly cannot live with the myofascial trigger points. Of course, there is NO correlation in the medical literature that I can find, but the trigger points resolve when I stop them and immediately recur when I start them again. I do not see how any of these opioids can be used ever. I just looked and counted what I've tried and over the last 7 years I've been on over 20 individual meds and many of those also in various combinations.

I tend to be a bit sensitive to some things, so I tend to try things in small doses. Almost all benzos are out - and not something Dr B wants to prescribe with the opioids. All the dopamine agoninsts are out. Only high potency opioids are helpful and there's only one I haven't tried - it's actually not the initial effects that are the problem, but those over time. Of the anticonvulsants, I have a few I haven't tried, but so far none have helped the RLS, all continue make be a vegetable during the day even after several weeks, though they do help me sleep.

While I do have options, there are very few at this time unless we can figure out how to stop the trigger points (except daily massage) or stop the augmentation.

I was telling Beth privately that I am a glass 3/4 full the vast majority of the time. Every so often the glass not only empties, but disappears. Fortunately it reappeared just hours after writing this. I do not want to do it and am not happy I have to, but I will do it because I'm not ready to let the RLS win.
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.

badnights
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Post by badnights »

oh your fighting spirit! I love to see that back!

cornelia

Post by cornelia »

I hate to read that you are in such a bad state right now Ann. I wish they would find and make better meds for the severe cases.
I have followed you through the years and have whitnessed your downhill struggle, although you had good times too.
I wish I could help. The only thing I can think of is not taking Requip/Mirapex 5 days in a row but rather 1 day on/1 day off to battle augmentation and up your dose of Tramadol(retard).
Corrie

ViewsAskew
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Post by ViewsAskew »

cornelia wrote:I hate to read that you are in such a bad state right now Ann. I wish they would find and make better meds for the severe cases.
I have followed you through the years and have whitnessed your downhill struggle, although you had good times too.
I wish I could help. The only thing I can think of is not taking Requip/Mirapex 5 days in a row but rather 1 day on/1 day off to battle augmentation and up your dose of Tramadol(retard).
Corrie


The tramadol isn't enough to allow sleep, but it significantly helps other drugs. For example, I needed 18 mg of hydromorphone daily (total) to allow sleep, but only needed 4 mg of it when taking the full dose (400 mg) of tramadol daily.

You are thinking similar to what I was thinking - take an opioid 2 and the Mirapex 2. I think I need more than one day in between the Mirapex. Or, opioid 2, Mirapex 1.

The reason I wanted the Mirapex during the week is that it makes me sleepy. It also awakens me in the morning and I can't get back to sleep, but it's much better for me trying to work.

With the opioids not only do I go to sleep extremely late - 5 to 9 AM these days - but I'm non functional in the first part of the day. I can't work like that. The opioids cause more problems the longer I take them, though, so if I can keep them to a max of two days, maybe I have a chance. Today is day 2 and my brain is relatively foggy. I certainly don't want to try this for 3 days. Day 1 wasn't bad.

Like you, Corrie, I do wish they would come up with other options for those of us at the more severe end of the scale. I do not think it's economically viable to do that research, though. Too bad it always comes back to money (for things like this).
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.

SquirmingSusan
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Post by SquirmingSusan »

So sorry to hear that things have gotten so difficult again, Ann. I'm sure that there are better treatments coming down the pike eventually, but in the meantime, hang in there. Maybe you can get into a trial of something like deep brain stimulation. There just has to be something that will work for you and allow you live your life. Sending good vibes your way...
Susan

ViewsAskew
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Post by ViewsAskew »

Thanks, Susan.
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.

cornelia

Post by cornelia »

I just received dr Chokroverty's new RLS book in which he questions deep brain stimulation for RLS. There are only isolated case reports of its use in RLS. Furthermore, as opposed to Parkinson's disease, RLS patients do not have loss of nerve cels in the basal ganglia, That is why he questions the rationale for use od DBS in RLS. It is a far from my bed solution, but if they are going to ue it in future I will be the first one to be a guinea pig and I guess some of you too!
Corrie

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