1st post after 24 years of RLS

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legsbestill
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Re: 1st post after 24 years of RLS

Post by legsbestill »

Having checked earlier posts, it was a dose of greater than 350mg that caused headaches. I titrated up to quite a bit higher than 217mg. It was hard to judge when the optimal dose was reached because it never got to grips with the urge to move.

Icantsleep
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Location: Ottawa Canada

Re: 1st post after 24 years of RLS

Post by Icantsleep »

So for what it's worth my RLS just keeps getting worse ..
I'm coming off 7 solid hours of agony between 12-7am last night
So delirious I was literally hallucinating matched with severe nausea

... how the heck I was alive to help take care of my special 3 year old among other things was a mystery.
It cannot however continue
I am just flat unable to care for my children at this point

Soooo ... with that said , diprydamole only comes in the form of Aggrenox here in Canada .
It is 200mg extended release diprydamole combined with 25mg Asprin
It comes only in capsule form so no halving on pills etc .
(I suppose I could try to open and

It's bad enough I have a low platelet count (and have for years)
I'm also on the hypotensive side with regards to BP.

Now I need to combine two anti coagulants , and start at 200mg to even get an idea of what diprydamole would do for me
I should probably push for my hemachromatosis test results appointment to happen earlier so I could ask a hematologist how great an idea Aggenox would be for a low platelet person such as myself .

Not ideal , but I still may try it (.... although not terribly interested in bleeding more than I need to)

The medication is very cheap ... about $1 a pill

Parempanel on the other hand is about $10 a pill and the tabs aren't scored
I'm unsure if I'd even see any benefit from a trial of 5-10 pills
A patient may need weeks of it in their system to see benefit
... wish I could find anything besides the 2017 trial on the internet
There is literally zero other mention of parempanel and rls

So that brings me to Kailo patches

I have very little hope these will do anything, but they came in the mail today
... and I'm about to put one on as my first bout of RLS is hitting me this very moment

.... maybe I'll make my own 100/12.5 capsules of Aggenox

All I know is my RLS just kicked in and I've got to walk around

legsbestill
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Location: Dublin Ireland

Re: 1st post after 24 years of RLS

Post by legsbestill »

Your desperation is all too familiar and very concerning. It does seem clear that something in your regime needs to change.

I've just scanned through your history as recorded in this thread. I can't help wondering whether you might need to take a higher dose of opioid shortly prior to going to bed. It seems like the evening dose you take (whether tramadol or codeine) is always relatively low and almost inexorably you experience nocturnal symptoms thereafter. This leaves you trying to overcome symptoms with medication. In my experience, it is much more difficult to tame rls symptoms once they get into their stride than it is to avoid them emerging in the first place and consequently - for me at least - a higher evening dose (before symptoms emerge) ultimately results in a lower intake of meds.

Would you consider trying a higher dose of your evening dose of opioid? Even better, use the new found opportunities opened up by the pain clinic to get a stronger opioid. Temgesic (Buprenorphine) seems to work well for RLS. Alternatively, methadone seems to be favoured by Dr. Buchfuhrer and other experts.

Tangentially, I have found in recent years that if I take a reasonable amount of kratom through the day (up to about 12 grams), I actually don't need to wake through the night for a top up dose, whereas if I don't take it through the day, the effect of my evening dose ALWAYS wears off within four hours. I appreciate that it is an idiosyncratic condition and every one has (slightly to dramatically) differing responses to meds so this could be specific to me but it is such a relief not to have to wake up to supplement medication that I put it out there in case it would assist others.

Incidentally, I agree with all the others who have posted that you need to take a good long break from all dopamine agonists.

Rustsmith
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Re: 1st post after 24 years of RLS

Post by Rustsmith »

I was able to find something on parempanel. It seems that there was a clinical trial of parempanel for RLS that was conducted in Spain in 2017. The results looked promising, but this was an initial investigation with 20 people. Still, since it is in the same general class of meds as gabapentin, Horizant and Lyrica, it might be worth a try. https://www.sciencedirect.com/science/a ... RvVwxcxsXt

A bit of news that many of us may benefit from is that there will be a paper published in the July issue of the Mayo Clinic proceedings on RLS. This may be the update of the consensus for RLS treatments. I am hoping that this will provide many of us with new options for treatment. The Mayo journal is usually available just after the first of the month.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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.

Icantsleep
Posts: 201
Joined: Sun Oct 16, 2016 6:07 am
Location: Ottawa Canada

Re: 1st post after 24 years of RLS

Post by Icantsleep »

legsbestill wrote:
Sun Jun 20, 2021 8:48 am
Your desperation is all too familiar and very concerning. It does seem clear that something in your regime needs to change.

I've just scanned through your history as recorded in this thread. I can't help wondering whether you might need to take a higher dose of opioid shortly prior to going to bed. It seems like the evening dose you take (whether tramadol or codeine) is always relatively low and almost inexorably you experience nocturnal symptoms thereafter. This leaves you trying to overcome symptoms with medication. In my experience, it is much more difficult to tame rls symptoms once they get into their stride than it is to avoid them emerging in the first place and consequently - for me at least - a higher evening dose (before symptoms emerge) ultimately results in a lower intake of meds.

Would you consider trying a higher dose of your evening dose of opioid? Even better, use the new found opportunities opened up by the pain clinic to get a stronger opioid. Temgesic (Buprenorphine) seems to work well for RLS. Alternatively, methadone seems to be favoured by Dr. Buchfuhrer and other experts.

Tangentially, I have found in recent years that if I take a reasonable amount of kratom through the day (up to about 12 grams), I actually don't need to wake through the night for a top up dose, whereas if I don't take it through the day, the effect of my evening dose ALWAYS wears off within four hours. I appreciate that it is an idiosyncratic condition and every one has (slightly to dramatically) differing responses to meds so this could be specific to me but it is such a relief not to have to wake up to supplement medication that I put it out there in case it would assist others.

Incidentally, I agree with all the others who have posted that you need to take a good long break from all dopamine agonists.
DAS are out
... unless something along the lines of Ecopipam is approved to treat/offset DA augmentation

Although I don't have symptoms round the clock, i do get them in the "evening " ... a good few hours before bed .
I use a strong sativa to keep then at bay and/or simply keep moving to alleviate the symptoms until I take dose 1 of codeine

I definitely do understand staying ahead of symptoms are an easier way to control symptoms as opposed to dealing with then after they've presented themselves.

Opioid/opiates are great for coverage... except for the constipation
Like.... Constipation someone gets no matter what their diet is ...
no matter what I get constipation
Constipation that is only aleved with daily administration of laxatives and stool softeners
And then I continue to lose weight

.... and that's for only 60-75mg of Codeine

I weigh 150 pounds (down from 190)
I need to be able to eat

This is why I haven't taken a high opioid dose

Although I am weaning my Clonazepam dose, I have been benzo dependent for 28 years
Opioids + benzos do not mix

I take the highest dose of opioid that is tolerable
I guess I'll just have to tolerate more .(or gamble with death )

I will build Codeine immediate release up to approximately 60mg × 2 before switching to codeine contin 50mg
I also have butrans patch (Buprenorphine) as the other option
Not a big fan of wearing a patch for 7 days at a time .
Explaining it to my kids or having them pick at it while we are swimming in our pool (who knows how good balanced pool water and mid summer sun would be )
Also not a fan of being bonefide Opioid dependant , but something needs to be done

I will eliminate thc oil , continue to slighty reduce Clonazepam and perhaps ingest even less than the 0.2 grams of Marijuana I vaporizer nightly so I can safely up opioids

Until I get the ok to take diprydamole from a couple different doctors I'm not going to risk dangerous bleeding
I have had a low platelet count for many years
If I could try a smaller dose first that would be neat.

Parempanel had one study 4 years ago
... there is literally no other mention of it as a treatment for rls anywhere
It is also fairly expensive, but

Then there's the whole Spinal stimulator avenue
... I will not be getting a spinal stimulator
I would need to be at the point of suicide attempts before consider it .
My life just does not allow me to be usless and immobile for 2 months while recovering .
It is too invasive
My wife would not be able to take care of our challenging children AND me by herself

I looked into unapproved (and possibly ridiculous) kailo and signal relief pain patches ... in fact I've worn a kailo patch the last two nights
First night seemed like a miracle... the rls would seem to be dispersed the moment it began .
Last night I tried to apply it to stay ahead of even evening symptoms ...

I did not sleep until very very late
I will try it again.. it does at the very least seem to "numb" or influence the nerves of my leg .
It is something I feel
It is not placebo effect

Anyway ... I'm going off on tangents
Sleep deprived and rushed to express my thoughts as it is now past 2am

I appreciate everyone's input
Rls is complex and I'm clearly difficult to care for (at least I'm aware I'm somewhat impossible)

Steve I eagerly await new treatment ideas .
I'll keep my eyes peeled for your post on or after the 1st of July regarding new treatments cause I know you'll be on top of it
Suppose I can dig it up myself as well
... cause even with all my options, not one of them is anywhere near ideal

I'm risking my phone dying any second so going to wrap up these thoughts for now
I will be trying something different then my current regime is all I know

badnights
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Re: 1st post after 24 years of RLS

Post by badnights »

Well, here's a long post: First, you might not have to worry much about reducing the marijuana; marijuana and opioids have an interesting relationship, seeming (in one study that I know of) to enhance each other's effects, which theoretically should enable you to keep the dose of each lower than if you had been taking it alone.

I wonder if all opioids would cause the same degree of constipation, or if some might be less obnoxious? You already know that codeine constipates you so instead of changing to codeine contin, can you experiment with one you haven't tried before? one that is longer lasting as well as more potent? Besides buprenorphine and methadone, there is also hydromorph contin, which few people take, not sure why. I've been taking it for about 10 years without much side effect (other than I swear it's alerting, but taking melatonin seems to deal wtih that).

Also, you said that no matter what your diet is, you get constipated, but you might want to investigate that even more. The amount of vegetables a person needs to be healthy might run upwards of 6 cups a day. That's a lot of fiber. Plus, we need soluble as well as insoluble fiber, and we need "resistant starch" as well - three kinds of fiber, so sprinkling bran on everything won't do. Bran and most grains have mainly insoluble fiber, perhaps the least important, though we need them all.

Fiber does a whole whack of good things beside helping food-remains pass through the gut.

We need roughly 25-35 grams of fiber (insoluble + soluble) per day (depending on gender and age). Most Americans get less than half what they need, apparently. There is only 3 or 4 grams in slice of bread or a cup of oatmeal, but there's 15 g in a cup of cooked black beans. Legumes (black beans, lima beans, pinto beans) have a lot of fiber, all three kinds. Broccoli or turnip greens have 5 g per cup. A cooked artichoke has 6 g, a pear has 4 g. It's important to eat lots of a variety of vegetables because they give us so many nutrients and types of fiber. Nuts tend to have a lot of fiber - an ounce of almonds has 3.5 g, an ounce of pistachios or pecans has 3 g.

Processed foods have much less fiber than raw and minimally processed foods. White bread has less than brown bread. Canned fruits and vegetables have less than fresh cooked, which in turn have less than raw. Pulp-free juices have less than with-the-pulp juice.

I'm sure you've looked all this up before. I just wanted to make the point that a healthy amount of fiber involves eating way, way more vegetables and legumes than the average North American is used to. (and not just one or two kinds of vegetable!)

It's also necessary to drink water water all day long.

Something else to consider is whether you have any gut motility issues when you're not taking opioids, maybe milder so less noticeable? Motility refers to the contractions that pass wave-like from the top of a gut tube to the bottom (top to bottom of the esophagus, to get food into the stomach, or top to bottom of the small and large intestines to move food out of the body). Poor motility might be a side effect of medication, but it could also be caused by disease (e.g. Parkinson's, thyroid disorders, diabetes). To fix chronic gut motility issues, changes in diet alone is often enough. Mild but regular physical exercise also seems to help.

"Fiber and water must be abundant in the diet of patients with constipation; fermentable foods should be avoided. Patients should take small frequent meals (6-8 times a day), avoid foods high in fat or lactose, and avoid residue- and gas-producing foods." (https://emedicine.medscape.com/article/ ... atment#d11)
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.

Icantsleep
Posts: 201
Joined: Sun Oct 16, 2016 6:07 am
Location: Ottawa Canada

Re: 1st post after 24 years of RLS

Post by Icantsleep »

badnights wrote:
Wed Jun 23, 2021 4:39 am
Well, here's a long post: First, you might not have to worry much about reducing the marijuana; marijuana and opioids have an interesting relationship, seeming (in one study that I know of) to enhance each other's effects, which theoretically should enable you to keep the dose of each lower than if you had been taking it alone.

I wonder if all opioids would cause the same degree of constipation, or if some might be less obnoxious? You already know that codeine constipates you so instead of changing to codeine contin, can you experiment with one you haven't tried before? one that is longer lasting as well as more potent? Besides buprenorphine and methadone, there is also hydromorph contin, which few people take, not sure why. I've been taking it for about 10 years without much side effect (other than I swear it's alerting, but taking melatonin seems to deal wtih that).

Also, you said that no matter what your diet is, you get constipated, but you might want to investigate that even more. The amount of vegetables a person needs to be healthy might run upwards of 6 cups a day. That's a lot of fiber. Plus, we need soluble as well as insoluble fiber, and we need "resistant starch" as well - three kinds of fiber, so sprinkling bran on everything won't do. Bran and most grains have mainly insoluble fiber, perhaps the least important, though we need them all.

Fiber does a whole whack of good things beside helping food-remains pass through the gut.

We need roughly 25-35 grams of fiber (insoluble + soluble) per day (depending on gender and age). Most Americans get less than half what they need, apparently. There is only 3 or 4 grams in slice of bread or a cup of oatmeal, but there's 15 g in a cup of cooked black beans. Legumes (black beans, lima beans, pinto beans) have a lot of fiber, all three kinds. Broccoli or turnip greens have 5 g per cup. A cooked artichoke has 6 g, a pear has 4 g. It's important to eat lots of a variety of vegetables because they give us so many nutrients and types of fiber. Nuts tend to have a lot of fiber - an ounce of almonds has 3.5 g, an ounce of pistachios or pecans has 3 g.

Processed foods have much less fiber than raw and minimally processed foods. White bread has less than brown bread. Canned fruits and vegetables have less than fresh cooked, which in turn have less than raw. Pulp-free juices have less than with-the-pulp juice.

I'm sure you've looked all this up before. I just wanted to make the point that a healthy amount of fiber involves eating way, way more vegetables and legumes than the average North American is used to. (and not just one or two kinds of vegetable!)

It's also necessary to drink water water all day long.

Something else to consider is whether you have any gut motility issues when you're not taking opioids, maybe milder so less noticeable? Motility refers to the contractions that pass wave-like from the top of a gut tube to the bottom (top to bottom of the esophagus, to get food into the stomach, or top to bottom of the small and large intestines to move food out of the body). Poor motility might be a side effect of medication, but it could also be caused by disease (e.g. Parkinson's, thyroid disorders, diabetes). To fix chronic gut motility issues, changes in diet alone is often enough. Mild but regular physical exercise also seems to help.

"Fiber and water must be abundant in the diet of patients with constipation; fermentable foods should be avoided. Patients should take small frequent meals (6-8 times a day), avoid foods high in fat or lactose, and avoid residue- and gas-producing foods." (https://emedicine.medscape.com/article/ ... atment#d11)
So after it seemed to work once, Kailo patch seems to do very little
No new meds were tried lately as my youngest got VERY sick and gave it to my wife and I also got a bit sick too.

We were in a holding pattern waiting for covid test results , and then still needed to recover
.... my youngest can't talk, so caring for her is very challenging, and likely will be for a very long time.
So much so, I hardly ever have time to think about how the hell to take care of myself

I forgot that my RLS follows my Circadian rhythm disorder
The Codeine I was taking at the same time every day was ineffective because by the time I got rls , my Codeine had lost most of its effect .
I have had to delay my bedtime by about 4 hours to be covered somewhat
This then leads to poor late morning/early afternoon sleep with screaming kids nearby

Anyhow ...any contin type opioid or long acting such as Buprenorphine or methadone will already be a bit too strong.
Even though I've reduced my Clonazepam by 33%, THC and THC oil really dry out my airways .
This is a problem when taking opiods
... in fact, as I am working upwards towards Codeine contin by upping Codeine again, I stopped breathing 3 times last night.
This hasn't happened in perhaps a year or more , and the timing really sucks as I was planning on a more potent med .
So this would be why I'd stop THC oil (and soon further reduce my benzo)

I may try Buprenorphine solely to see how constipated I get
I'm not keen on unnecessary round the clock opioid dependence (and not happy I'd be unable to swim for long periods with my kids in out pool)
The only place my youngest makes eye contact is while swimming with me .... and I do need to exercise
... gotta do something about this damn RLS though .

If I do not take Codeine, like when I take Neupro patch for a week , I can basically eat anything
Motility is not a factor

Right now I'm getting my 2nd Moderna shot Saturday evening, then I'll choose between Codeine contin or butrans patch
... or begin playing with diprydamole, but I need to discuss risks with my doctor when If comes to taking 200mg extended release combined with 25mg Asprin.
Not keen on excessive bleeding.

Parempanel is out
Certain side effects are an absolute deal breaker

So I choose from :
bleeding too much with a significant dose of anti coagulants
Uncontrollable agitation and irritation ,which is already present, leading to homicidal and suicidal thoughts (Parempanel )
Or potentially dying in my sleep from respiratory depression

Or never sleeping

I'll talk about diet specifics soon
I definitely appreciate diet ideas once again
I do very honestly really try

Right now this post is long enough, filled with the usual dramatic tangents and pity rants .

badnights
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Re: 1st post after 24 years of RLS

Post by badnights »

Pity rants are allowed. This is a dreadful condition we're living with (trying to live) and no one out there understands it, so rant away.

Why no swimming? It would be a crying shame to lose that precious contact with your child.
Beth - Wishing you a restful sleep tonight
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I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

Rustsmith
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Re: 1st post after 24 years of RLS

Post by Rustsmith »

Two comments of things that you might want to factor into your thinking.

1. Most of the methadone pills that I get are scored so that they can be easily snapped in half. That makes the dose 2.5 mg. You didn't say what your codeine dose is, but you could use any of the morphine equivalent unit (MEU) calculators that are available on the internet to find out how they compare.

2. Tramadol is a weak opioid that can be very effective for RLS. It is the only non-dopamine med that can cause augmentation, but that is very rare. It is available in both immediate release form (like your codeine) or as extended release, which is a one/day treatment. One of the things that many docs like about tramadol is that it is almost impossible to overdose on. The med as you take it is not an opioid. Tramadol is broken down in the liver and one of the byproducts is the opioid. The liver regulates how much gets broken down, so it is less of an issue. The major downside to me is that it is also an anti-depressant even though it is not used as such (the FDA in the US refused to certify it as an AD). That means that getting off of it after taking it for many months is a much longer process than stopping a regular opioid. And along those lines, buprenorphine is also an anti-depressant but works differently from any of the others. Once again, not government approval for use as an AD because the opioid properties are "too strong" and I guess the regulators are scared of dual use meds like that.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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.

Icantsleep
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Location: Ottawa Canada

Re: 1st post after 24 years of RLS

Post by Icantsleep »

Beth :

It's not the swimming so much as the sun
Butrans patch apparently has issues when exposed to direct sunlight

Steve :

Tramadol was my first, and for a while, my only option when I stopped Mirapex

It
Was
AWFUL

I believe my personal adverse reactions had to do with the SSRI and SNRI properties.
Either way, tramadol made me the most sick of any med I've taken.

Methadone 2.5mg seems like a reasonable dose
... there seems to be numerous concerning side effects when compared to Buprenorphine
Both seem to cause sexual dysfunctional, but more so with methadone (although I could be wrong)

You raise a serious concern of mine regarding Buprenorphine and its AD properties
... I already had major problems with tramadol

Codeine contin , as Beth mentioned, would likely cause similar OIC , and I'd really prefer to avoid that
Apparently both Buprenorphine and methadone seen to cause less (or perhaps their other adverse effects are just that much more profound )

Sigh .... so hard to make a decision

I do need longer lasting relief from my RLS
... I've got another attack starting this moment

Dammit
So hard to think

Rustsmith
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Re: 1st post after 24 years of RLS

Post by Rustsmith »

I would suggest that you cannot extrapolate your SNRI experience with tramadol over to buprenorphine. Tramadol is extremely similar to the SNRI anti-depressant tradenamed Effexor. There was an effort a year or two back where they sought FDA approval for the use of buprenorphine to treat Treatment-Resistant Depression (TRD). To be diagnosed with TRD you need to have failed AD treatment with several meds. Since Effexor is used quite a bit, that would imply that buprenorphine acts in a totally different manner. But there is so, so much that is not known about how any of these meds function that it is impossible to predict your reaction to it.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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.

Icantsleep
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Location: Ottawa Canada

Re: 1st post after 24 years of RLS

Post by Icantsleep »

Rustsmith wrote:
Sat Jul 03, 2021 12:49 am
I would suggest that you cannot extrapolate your SNRI experience with tramadol over to buprenorphine. Tramadol is extremely similar to the SNRI anti-depressant tradenamed Effexor. There was an effort a year or two back where they sought FDA approval for the use of buprenorphine to treat Treatment-Resistant Depression (TRD). To be diagnosed with TRD you need to have failed AD treatment with several meds. Since Effexor is used quite a bit, that would imply that buprenorphine acts in a totally different manner. But there is so, so much that is not known about how any of these meds function that it is impossible to predict your reaction to it.
Definitely not a deal breaker
I'm not not going to try the butrans patch (Buprenorphine) because of this .
My RLS is so bad lately .

Getting my 2nd Moderna dose tomorrow

Tonight , tomorrow night and even Sunday night I'll slighty reduce my Codeine dose while I use 0.25mg Neupro patch for some very temporary relief .

I'll get my butrans patch script filled by Monday .
Perhaps raise the Codeine back up one night , then use either the Buprenorphine or Codeine contin 50mg by Monday night (I have it already)

badnights
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Re: 1st post after 24 years of RLS

Post by badnights »

It's sad but there's no way to tell what the side effects will be until you try them. I hope the Neupro is helping and that the Butrans Monday is the beginning of a wonderful new period in your life :) :)
Beth - Wishing you a restful sleep tonight
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I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

Icantsleep
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Re: 1st post after 24 years of RLS

Post by Icantsleep »

badnights wrote:
Sun Jul 04, 2021 6:04 am
It's sad but there's no way to tell what the side effects will be until you try them. I hope the Neupro is helping and that the Butrans Monday is the beginning of a wonderful new period in your life :) :)
It is absolutely UNREAL how well a mere 0.25mg of Neupro patch (one quarter of a 1 mg patch) works to take away my rls symptoms.
I do get very minor "evening " symptoms prior to bedtime if I'm motionless, but both going to sleep AND overnight saw ZERO RLS WHATSOEVER.

This basically never happens

How do I need a strong opioid or even a very invasive spinal stimulator, when the tiniest dose of a drug with no side effects at all provides complete relief ???

So unfair that it won't last

How do I make last ?????

Polar Bear
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Re: 1st post after 24 years of RLS

Post by Polar Bear »

What joy I hear from you, the wonder of a night's sleep without rls.
I echo what badnights has said and wish you well as you start on the Butrans today.
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

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