Riding the Big One (RLS 24/7, Hanging Ten)

For everything and anything else not covered in the other WED/RLS sections.
EeFall
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Re: Riding the Big One (RLS 24/7, Hanging Ten)

Postby EeFall » Sat Jul 28, 2018 6:51 am

I have taken Tylenol-Codeine #3 but not for RLS. Actually I think it made my RLS worse but then it could be drug interactions. The list of side effects for Suboxone are huge but as with other drugs it will either work for you or it won’t. My major complaint is it makes me itchy at night and have to be careful of taking to much before bedtime or hyper alertness kicks in. Considering I was taking 5 different drugs a day before Suboxone i am now less drugged up for sure. 5 to 8 hours sleep a night versus 2 to zero is a big plus!

badnights
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Re: Riding the Big One (RLS 24/7, Hanging Ten)

Postby badnights » Mon Jul 30, 2018 12:48 am

ly on another thread Trazadone has been mentioned. It would appear to help with sleep, at least initially. Although not without it's negative effects the next day. Or getting used to it.

For someone (moi !!) who never sleeps more than a couple of hours continuously, I'm wondering would it be worth trying say... twice a week. If it worked and gave perhaps 8 hours sleep would the next day effects be worth it? I know we're all different and effects vary.

For those of you who have tried it, is one night's sleep worth the after effects?
The side effect of making me sleepy the next day has disappeared. I take half when I can but I don't hesitate to take the other half if I feel like I'm going to need it, or if I keep waking up. It does wonders for sleep maintenance. I take 50 mg. (or 25).
Beth - Wishing you a restful sleep tonight
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ViewsAskew
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Re: Riding the Big One (RLS 24/7, Hanging Ten)

Postby ViewsAskew » Mon Aug 13, 2018 8:22 pm

badnights wrote:
ly on another thread Trazadone has been mentioned. It would appear to help with sleep, at least initially. Although not without it's negative effects the next day. Or getting used to it.

For someone (moi !!) who never sleeps more than a couple of hours continuously, I'm wondering would it be worth trying say... twice a week. If it worked and gave perhaps 8 hours sleep would the next day effects be worth it? I know we're all different and effects vary.

For those of you who have tried it, is one night's sleep worth the after effects?
The side effect of making me sleepy the next day has disappeared. I take half when I can but I don't hesitate to take the other half if I feel like I'm going to need it, or if I keep waking up. It does wonders for sleep maintenance. I take 50 mg. (or 25).


I also found the side effect of being sleepy the next day disappeared over time. But, I also found that I needed more over time to get the same sleepy-time effect at night.

The first time I took it, I slept 16 hours! In a way, on a weekend, that might be nice once a week.
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.

EeFall
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Re: Riding the Big One (RLS 24/7, Hanging Ten)

Postby EeFall » Mon Oct 07, 2019 6:54 pm

EeFall wrote:I'm posting this in General Topics: WED/RLS because this topic is about being a surfer and riding the biggest wave in existence.

The surfer being a person with severe RLS who has it 24/7 without medication and the struggles of not falling off the wave. The wave being our lives because we arent' just living but we are on that big wave trying not to wipeout! We are not riding some wimpy wave, no normal life, we are living on a huge burden that is ever growing, changing, and we have to watch out! We need to stay afloat and continue on this dangerous course which we were set to ride, but not willingly, we did not want it, nor would we want our worse enemy to have it.

It is about riding this huge wave and making it to the end which will be ultimately a cure for WED. Somehow we have to WIN!

For tonight this is enough writing, it is just after 10pm and I have to go to bed and hopefully sleep through the night. Post about severe RLS/WED and how you manage to live with it.
Maybe SRLS/SWED :twisted:


I started this thread over 5 years ago and have just read what I originally wrote in the quotes above. The last few weeks have been terrible and I have almost wiped out. It all goes back to having severe RLS. I can't believe how I have been treated by my family. It hurts so bad. If they were on the wave with me they would understand and I'm sure if they thought about going through this by themselves for 20 years they would know the pain they have caused me, but they don't. I'm the bad guy in their eyes. All I can do is to continue to ride the wave by myself.

At least the Suboxone is still working with not too many horrible side effects. I just took my yearly urine test that they (government) require now to assure I am not taking any other drugs besides Suboxone. Idiots.

Live long and prosper and outlive all the skeptics.

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Re: Riding the Big One (RLS 24/7, Hanging Ten)

Postby Polar Bear » Mon Oct 07, 2019 8:00 pm

You've been riding the wave for such a long time and I am so sorry that it has taken such a toll on your life. Things have been very painful for you in more ways than just RLS. The ripples spread wide.
I do wish better things for you.
Betty
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Yankiwi
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Re: Riding the Big One (RLS 24/7, Hanging Ten)

Postby Yankiwi » Tue Oct 08, 2019 2:42 am

I wouldn't wish RLS on anyone, but luckily for me, half of my family also has it so they are sympathetic.

Best wishes for a better future, EeFall

EeFall
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Re: Riding the Big One (RLS 24/7, Hanging Ten)

Postby EeFall » Thu Dec 26, 2019 8:11 am

So on Christmas Eve I get a call from sleep doctors office that my pharmacy won’t fill my Suboxone prescription because of some new law about addiction and they said I needed to see some doctor from some list.

After several calls my sleep doc agreed to send it to a different pharmacy but I won’t know until the 15th of January if they will fill it. My 6 month prescription had ended and so I emailed them for another 6 month subscription and the above happens.

The whole mess put me into instant deep depression. Fortunately I have a large stash of Kratom and took some which got me out of it after a few hours.These new opioid laws have done nothing but screw with my mind, and getting a call like that on Christmas Eve just was too much.

I cannot sleep at all without Buprenorphine (Suboxone). I can’t live without this stuff and it totally freaks me out that the government could take it from me. I wouldn’t last a month without it, actually after 6 days of no sleeping (and having to pace 24 hours a day) because of no Buprenorphine I am no longer able to function.

And to think those idiots would stop giving me suddenly a highly addictive drug, good lord that is nuts. So that was how my holidays started but at least we had a good day today on Christmas but as you can see it is still bothering me enough that I have not been able to sleep tonight. I am getting too old for this crap (I am officially an old fart btw).

QyX
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Re: Riding the Big One (RLS 24/7, Hanging Ten)

Postby QyX » Thu Dec 26, 2019 8:06 pm

Oh wow, Buprenorphine is one of the least problematic opioids on the market. Compared to all the other opioids, it is difficult to abuse, has less potential for abuse and for a healthy adult it is almost impossible to fatally overdose on Buprenorphine. It is one of the safest and tolerable opioids on the market and still you are running in those issues.

I hope the other pharmacy will fill the prescription. In any case, I would stack as much Kratom as possible.

It is just a disaster and hugely problematic, that pharmacies can refuse to dispense vital medication we simply need to survive.

The problem you are having could be related to the fact that Suboxone is rarely, if ever used to treat chronic pain and RLS but mosten often is used to treat opioid addiction in opioid replacement therapy. I would not be surprised if those new laws only concern patients who receive Buprenorphine for opioid addiction therapy and maybe the personal in the pharmacy doesn't know the difference.

I would invest some time and try to figure out what the law exactly says.

ViewsAskew
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Re: Riding the Big One (RLS 24/7, Hanging Ten)

Postby ViewsAskew » Fri Dec 27, 2019 1:25 am

Just angers and saddens me so much that they can do stuff like this. :-(. Hope there is a different outcome with the other pharmacy.
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.

debbluebird
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Re: Riding the Big One (RLS 24/7, Hanging Ten)

Postby debbluebird » Sun Dec 29, 2019 5:44 pm

I feel for you. I'm so sorry and like Ann, angry too. I hope you find another way.

EeFall
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Re: Riding the Big One (RLS 24/7, Hanging Ten)

Postby EeFall » Fri Jan 03, 2020 6:48 pm

debbluebird wrote:I feel for you. I'm so sorry and like Ann, angry too. I hope you find another way.


Thanks guys for your posts, all of you. As it turns out my doctor did transfer the prescription to another pharmacy and I actually purchased it for $40 less and right away rather than waiting to pick it up on the 15th of January and no new doctors were involved as the previous pharmacy claimed.

I hate being so dependent on Buprenorphine but I am. As many of you probably remember I have taken loads of meds over the years for RLS that all stopped working. I am totally dependent on it and I even carry a 3 day supply in my billfold in case I can't make it back home. It is a strange life to know that if I don't take it everyday that I won't even be able to sit down.

It has been a few years but I am going to attempt to lesson my 4 mg of Buprenorphine. It looks like I will take about an 1/8 mg less every week until either it goes down to nothing or I start having problems. As you know there is no way to know if the RLS goes away once you are on a drug that works. The only way is to gradually reduce it so that withdrawals don't occur and to see if RLS symptoms return. Depending on how much less of the Buprenorphine I can take such as if I go down to 2 mg and start having problems I will continue that dose and supplement it with Kratom to see if it will work.

I have so many bad side effects from Buprenorphine that I have to give it a chance every few years. Please wish me luck :D

debbluebird
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Re: Riding the Big One (RLS 24/7, Hanging Ten)

Postby debbluebird » Sat Jan 04, 2020 2:35 am

Good luck !

QyX
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Re: Riding the Big One (RLS 24/7, Hanging Ten)

Postby QyX » Sat Jan 04, 2020 1:18 pm

EeFall, I am very sorry to disappoint but Kratom will most likely not work for you because you are taking Buprenorphine.

Buprenorphine partially antagonises opioid receptors since Buprenorphine is a partial agonist / antagonist on the opioid receptors and not a full agonist like almost all other opioids available.

If I or a person addicted to regular opioids would take Buprenorphine, we would initiate an immediate opioid withdrawal symptom due to the unique and special pharmacodynamic properties of Buprenorphine.

If you want to use Kratom, you have to stop taking Buprenorphine and switch to a different opioid. But that might prove difficult since 4 mg Buprenorphine equals roughly 120 mg of Morphine.

EeFall
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Re: Riding the Big One (RLS 24/7, Hanging Ten)

Postby EeFall » Fri Jan 10, 2020 5:22 am

QyX wrote:EeFall, I am very sorry to disappoint but Kratom will most likely not work for you because you are taking Buprenorphine.

Buprenorphine partially antagonises opioid receptors since Buprenorphine is a partial agonist / antagonist on the opioid receptors and not a full agonist like almost all other opioids available.

If I or a person addicted to regular opioids would take Buprenorphine, we would initiate an immediate opioid withdrawal symptom due to the unique and special pharmacodynamic properties of Buprenorphine.

If you want to use Kratom, you have to stop taking Buprenorphine and switch to a different opioid. But that might prove difficult since 4 mg Buprenorphine equals roughly 120 mg of Morphine.


QyX,

I have been taking Kratom for about 13 years. I use it when I become extremely depressed and it snaps me out of the depression. Sometimes I don’t take it for several months other times I take it 2 or 3 times a week. I put it in capsules that contain about 1.3 grams and I take between 3 to 7 caps at a time depending on how down I become. I took 5 seven days ago and have not taken any since then.

6 days ago I started taking 1/8 mg of Buprenorphine less per day. I decided to take 1/8 less every 6 days so tomorrow will be 1/4 mg less. So far I have not had any real problems, at least not any worse than usual. If I get 5 hours of sleep I consider that good.

I don’t understand what you are saying about Kratom? Kratom actually helped my RLS years ago but as the years went by my RLS became worse and Kratom didn’t help for it but still helps for depression. I was hoping that if my RLS has gotten better maybe I could end up only taking Kratom.

QyX
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Re: Riding the Big One (RLS 24/7, Hanging Ten)

Postby QyX » Fri Jan 10, 2020 1:59 pm

Do understand what I am saying, you have to understand what a partial agonist / antagonist is.

It is true that Buprenorphine has some unique antidepressant effects but I don't see how it could work for RLS as long as you take a significant dose of Buprenorphine.

With the way Buprenorphine works, it wont Kratom bind properly to the opioid receptors since Buprenorphine has a much higher affinity to those receptors and as I said, Buprenorphine is only a partial agonist, so it does not have full opioid effects and will block other other full opioid agonists from binding with opioid receptors properly.

Basically, as long as you take Buprenorphine, you won't be able to determine how effective Kratom will be for RLS.


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