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

Posted: Thu Jun 21, 2018 8:47 am
by debbluebird
I don't mean to infer that having RLS can't be bad. Having RLS is bad, especially more for some of us. I am including myself on that list, as I sit here awake at 3:45 am.

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

Posted: Thu Jun 21, 2018 6:26 pm
by EeFall
I’m just happy to be alive and fully retired. I’m sick of apologizing to idiots, even family members, who don’t understand how severe RLS has changed me - there are many things in life I enjoy and I just have to be able to enjoy being me.

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

Posted: Fri Jun 22, 2018 1:43 am
by debbluebird
Good for you!!

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

Posted: Sun Jun 24, 2018 9:52 am
by Yankiwi
EeFall—I'm glad to hear there are still many things you enjoy in life and hope they continue to outweigh the negatives.

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

Posted: Wed Jun 27, 2018 6:09 pm
by EeFall
Yankiwi wrote:EeFall—I'm glad to hear there are still many things you enjoy in life and hope they continue to outweigh the negatives.


I am now reading a book (which is several meditation books) by Marcus Aurelius an Emperor of Rome around the year 170. Even though it is some 1800+ years ago it is amazing how he writes much about being happy within yourself.

From gutenberg.org which has thousands of free books.

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

Posted: Thu Jun 28, 2018 10:29 pm
by debbluebird
:D

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

Posted: Fri Jul 06, 2018 7:52 pm
by EeFall
It is strange but when I am yawning like crazy just before going to bed it means I probably won't be able to go to sleep. Last night that happened and I realized that the Suboxone was not working at all. I went and took another 1/3 extra of a 2mg sublingual stripe and ended up pacing for several hours without being able to stop. At least now I also read audio books with wireless earbuds so I could do something so as not to wake my wife. It has been several months since RLS felt so bad. My wife mentioned this morning maybe I will need to up my dose from 3mg to 4mg again. That also creates problems though.

I itch like crazy taking just 3mg but 4mg is even worse plus it does other things to me like makes me even more grumpy. No wonder that I have been doing all the work outside as it allows me to move around constantly. Sometimes I am a little thick headed :D but I didn't really understand that working my butt off in garden is part of having RLS. I am so hyper and tired which is a strange combination.

It scared me though last night to think of the possibility of Suboxone stopping working altogether. Why shouldn't it though, all the other prescriptions and cocktails of prescriptions I have taken over the years have quit. I think Mirapex lasted 6 years and Suboxone has been working about that long now too. Not sure, maybe 5 years.

I have been staying away from Kratom because I think the combination of Kratom and Suboxone makes me even more angry. Maybe I need to take Kratom every once in awhile, maybe that is why Suboxone has worked so long. I may take some tomorrow. My Fitbit did not work well last night, it states I had 54 minutes sleep. I thought it should be at least 3 hours. I started wearing it again to see how my sleep is and it has not been great, averaging around 5 hours. When I stopped wearing it a few months ago I was sleeping about 7 hours a night. Maybe I should increase Suboxone again.

I am a science fiction nut and finally figured out that I should go on Internet and see if they have the best of lists for SF. I found a top 100 list and I'm making sure that I read all of them. I have been reading about 1/2 audio books and half ebooks from library from the list. Should have thought about doing this years ago. A lot of these books are from the 1950's, considering I was born in the 50's I have missed many of them.

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

Posted: Mon Jul 09, 2018 12:50 pm
by EeFall
I did go back up to 4 mg of Suboxone a day and had over 7 hours sleep last night. I had gotten myself down to 3mg about a year ago but I guess it turned out to not be a high enough dose in the long run. Happy happy joy joy :D

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

Posted: Mon Jul 09, 2018 1:18 pm
by Polar Bear
Oh !! what happy happy joy indeed !! 7 hours sleep.

I know that I haven't slept longer than 2 hours at a time, often had no sleep, and never had more that 5 hours fragmented sleep in at least 21 years. I can accurately date at least that far back in my sleep pattern because of a particular event.

Indeed my nightly wanderings are now 'my time'..... it's amazing what can be done whilst walking :)

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

Posted: Thu Jul 12, 2018 5:25 pm
by EeFall
Polar Bear wrote:Oh !! what happy happy joy indeed !! 7 hours sleep.

I know that I haven't slept longer than 2 hours at a time, often had no sleep, and never had more that 5 hours fragmented sleep in at least 21 years. I can accurately date at least that far back in my sleep pattern because of a particular event.

Indeed my nightly wanderings are now 'my time'..... it's amazing what can be done whilst walking :)


Yikes! I need to stop complaining about having only 5 hours sleep after reading the hours you have been sleeping. As you know it used to be that bad for me for many years on and off. I feel for you and wish your meds worked better. I just got used to having better sleep until having 5 hours didn’t seem that good. I almost forgot of the years of almost no sleep. My mind tends to blockout many of the bad RLS times, probably for the good.

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

Posted: Fri Jul 13, 2018 9:41 am
by Polar Bear
Indeed EeFall, it's really just a way of life for me now. There seems to be nothing in the 'sleep med range' that will work. Haven't tried anything in the herbal range, everything except CBD oil is illegal here and the oil on its own doesn't appear to be a big deal for sleep.
So I 'wander lonely as a cloud' :)

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

Posted: Fri Jul 13, 2018 7:59 pm
by ViewsAskew
Polar Bear wrote:Indeed EeFall, it's really just a way of life for me now. There seems to be nothing in the 'sleep med range' that will work. Haven't tried anything in the herbal range, everything except CBD oil is illegal here and the oil on its own doesn't appear to be a big deal for sleep.
So I 'wander lonely as a cloud' :)


:cry: :cry: :cry: :evil: :evil: :( :( :(

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

Posted: Mon Jul 16, 2018 7:16 pm
by Polar Bear
Very recently 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?

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

Posted: Thu Jul 26, 2018 9:07 pm
by EeFall
Polar Bear,

You should try Suboxone for RLS. Your sleep sounds like my sleep before Suboxone. I don't understand why Suboxone is not prescribed more for RLS except that not just any ole doc can prescribe it, they have to go through special training of some sort.

My insurance won't cover it here because it is not made specifically for RLS so I now pay about $252 USD a month (actually came down in price a bit from previous medical clinic I went to) for it but it is sure worth it for me.

I ended up taking 4mg a day but cut the sublingual film into 4 parts and take it at 9:30, noon, 5:30 pm, and bedtime. It worked for awhile taking it all at once but had to do it this way to prevent hyper alertness at night. Suboxone is mostly used to get addicts off opioids. I know some places practically give it away to get people off of drugs.

The strange thing is that even though I can get 5 to 8 hours sleep, it is not as restful as without RLS. I have a feeling that RLS does more to the brain to keep it going even while asleep.

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

Posted: Fri Jul 27, 2018 9:45 pm
by Polar Bear
EeFall - the side effects look pretty awful.

I might bring it up in conversation with my GP bearing in mind that he is very mindful of stronger opiods and their ilk. At present I reckon I'm doing well having Cocodamol prescribed.