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.

Polar Bear
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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
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

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


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