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

[EeFall]

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

[EeFall]

I had a good day, 6 hours sleep last night. It was after I chewed a couple of Carbamazepine just before bed plus my regular Suboxone. I took another 2 Carbamazepine a little while ago, time got away from me or I would have taken them sooner. Normally I try to change to a different supplement every night but I wanted to see if it would work again. Not sure why the prescription says to chew them, they don't seem like they are made for that.

I have also been eating brownies a few times a week (really just started about 2 weeks ago), my wife made them for me, they are illegal in 48 states but very tasty and they help make me sleepy. They are really pretty light, too light, but practice makes perfect. I didn't want to overdo it, better safe than sorry.

I was a little tired and down the other day so took 12 grams of kratom. I hear that kratom is even being sold at smoke shops now around here.

Besides medications what else is there? Diet hasn't done a darn thing for me, neither have vitamin, mineral supplements. The one thing I haven't tried is acupuncture, and I won't be trying it either. It just seems too weird. I have had a lot of weird procedures done for my sleep though, most failed. Went to a dentist who specialized in TMJ, which I had pretty bad at one point. He made a mouthpiece for me that would make my tongue go way forward. He thought it would cure sleep apnea too, wrong. It did fix my TMJ up, mostly, remarkably. I used to be able to open my mouth wide and you could hear my left jaw snap.

UPPI surgery, also a failure. Took out many things in my throat like adenoids, tonsils, uvula, back top of throat. Had sinus surgery too, didn't do any good. Deviated septum, nothing.

I should have kept a list of all the prescription, non-prescription, and just plain illegal drugs I have taken to combat RLS. 80% of them I can't remember (probably from using all those meds ).

Sense of humor is the most important weapon in the battle against WED, really. I'm a nice zombie, a vampire who doesn't bite, and a wolf who doesn't howl at the moon (although I do look at it with my 8" telescope).

[Neco]

You may find smoking those brownie ingredients to be far more effective than eating them..

Just saying

[EeFall]

You may find smoking those brownie ingredients to be far more effective than eating them..

Just saying

True but I have a couple of vaporizers which are nice too and far more effective, I just don't want the lung gunge. I quit smoking cigarettes 31 years ago.

[EeFall]

I wiped out last night. Went to bed at 11:30pm wide awake, finally drifted off but then woke at 1am with RLS symptoms, I was moving around like crazy. Tried to stay in bed for another 10 minutes but got up and stayed up until around 3am. Woke to alarm at 5:30am and went to work. The day really wasn't bad considering I probably had 3 hours sleep. Must be because I had 6 hours of good sleep the night before. But think about that! I had RLS symptoms after taking 4mg of Suboxone about 8 hours before, that doesn't sound good at all.

My wife is having lower back pain past couple of days. She is miserable, I hope she gets better soon. She goes to these stamping classes where they make greeting cards and things and she is cancelling it for tomorrow so her back must be pretty bad. Normally she would never miss one of those classes.

Tonight I took 4mg Suboxone and .25mg of pramipexole. That has about a 90% chance of allowing me to sleep by about 10:30pm to 11pm tonight - I am looking forward to it! The problem is I have to be very careful with it as I have augmented on it countless times. Hopefully taking it a couple of times a week will be okay. The next time will be half the dose also. My wife redid our monthly pill case this morning because I was totally out but tomorrow I am going to tweak the evening meds and vary them for everyday.

My ringing in the ears (tinnitus) is always about the same, as far volume, but it seems very loud sitting here by myself with no TV or music going. Especially the left ear. The sound itself seems to change. I think it may be the mind trying to make sense out of the noise, it is always trying to make it sound like something recognizable. It is sort of funny because sometimes it will sound like cymbals, a marching band, train whistle, right now the ears seem to be competing against each other, really high pitched. In reality though there is no noise. If I put earplugs in there is no difference. It must be like a bad nerve ending or something like that, it is very annoying and never goes away. Fortunately it does not seem to interfere with my hearing.

Things generally are going good despite last night. Taking my regular Suboxone and varying meds with each each night to sleep seems to work. 5 different choices every week. I thought one choice would be just taking Suboxone alone but it does not work at all. It works to eliminate the WED symptoms (disregarding last night) but it is like taking an upper as far as sleeping, sleep will not happen with it alone. I don't understand how that works because for several months, many months it did work, then gradually it started not to until now it doesn't make me sleepy at all, the reverse is true. I just nodded off for a moment, a good sign!

[EeFall]

Good nights sleep last night, about 6 1/2 hours sleep. I thought it would be because of the pramipexole. I wish I could take it all the time but I would augment within the month. Also my wife and I traded sides of bed so I can lay on my left side towards the outside of bed. My right shoulder makes it too painful to lay on right side. I hope it makes sense. It felt awesome to lay on side I have been laying on my back for years.

Tonight a couple of neurontin, and I hope they work.

[EeFall]

6 hours sleep the night before and 8 hours last night! I have just been taking Neurontin along with Suboxone. Last night we hung outside until 10:30pm watching the fireworks all around us for 4th of July (it was crazy, and it is illegal to do fireworks all around us, I'm glad the vast majority ignore the legality of celebrating Independence Day!). Anyway we then went to bed at 11pm and I slept in until a little after 7pm. Sleeping in is a rare occurrence for sure, I'd say less than 5 in a year. My wife is still sleeping.

For the stupid fun of it my wife and I purchased bang snaps (paper wrapped kids cap gun charges that go bang when thrown against a surface) and were tossing them all over the front porch while we watched the lights from our rocking chairs, wrapped in blankets (temp went down to about 60f).

[Polar Bear]

Congratulations on your 8 hours sleep, what I wouldn't do for that !
And oh, it does sound cosy, on the porch and just plain old having fun. Enjoy.

[EeFall]

Congratulations on your 8 hours sleep, what I wouldn't do for that !
And oh, it does sound cosy, on the porch and just plain old having fun. Enjoy.

Maybe another 8 tonight, I am heading in that direction now (except 4th of July is extending into 5th of July around here with more fireworks going off tonight. Sort of detracts from Independence Day when people start shootin stuff off 3 days before and after the 4th.

[Neco]

That really irked me too. I was trying to sleep as I had to get up Sunday for work and of course I got woken up by more fireworks

[ViewsAskew]

There were the worst here that I remember. We're on one of those neighborhood forums - Nextdoor or something - and many people commented on how bad it was. And the trash in the alley and my backyard.....

[sleepdancer2]

Hey EeFall, is your sleep apnea which you mentioned now under control?

[EeFall]

Hey EeFall, is your sleep apnea which you mentioned now under control?

My sleep apnea is under control. I have a VPAP machine which works great (it should for the money it cost about 4 grand which insurance paid for). I wish I didn't have to use it but it works. I look a little like Frankenstein's Monster when I go to bed. I have a wedge pillow which I put my regular pillow on so It lifts me up at the head about 8" higher than just using a pillow (so I am tilted up and usually just lay on my back). Over me is an "L" shaped hanger that fits between the mattress and springs to secure it that holds the tube for my VPAP nasal pillows mask. So the tube is suspended over my head. Also I wear a mouthpiece that the dentist made to prevent me from grinding my teeth down anymore than they already are because I grind my teeth at night. Plus I put in malleable earplugs, so does my wife, so we don't have to hear the outside world while we sleep. I also have to remember to fill up the VPAP machine with water every night for the humidifier which I keep at about 80f.

Probably more than you wanted to know but I just wish my RLS was under as good control as my sleep apnea.

Last night I took 4mg of Suboxone and .25mg of pramipexole that didn't work to put me to sleep. Got up an hour and a half later and took 600 mg of Neurontin. Went back to bed and had a kind of butt attack that I get when stressed. Ended up taking a shower at 1am, took some Aleve and Ibuprofen. Went back to bed. Woke up an hour later with another attack. Went back to be an hour later. Got up at 5:30am and went to work. Normally I would have stayed home but I refuse to do so now so had an interesting day at work. I am very tired right now and hope I can sleep tonight.

I think that the pramipexole is not my friend again (augmentation) so I will stay away from it once more. I am going to take 3 Neurontin in a while and hope they allow me to sleep. Fortunately my sleep has been pretty well the last few days (last not of course not) but I dread the terrible 3's. Which is 3 days in a row of lame sleep because it starts to turn me back into a zombie. Even last night shows how I hate not sleeping, I will continue to work to go to sleep the whole night if I must but I refuse to not sleep.

Like the subject of this thread, one has to be brave and hang ten on the end of the surfboard while riding the wave.

By the way, in less than a month I will be having my shoulder surgery. It has gotten bad again gradually but now part of the not sleeping last night was the pain in shoulder. The surgery is all set but as they pointed out to me the Suboxone nullifies mostly the pain meds so I will be going through excruciating pain for several weeks after the surgery with little help from pain medications. I have no choice though, my shoulder is getting worse everyday now and I almost regret not getting the surgery sooner.

My left ear tinnitus sounds like a high voltage electrical wire. Like is good

[sleepdancer2]

Sounds like when you have a bad night it's really bad. I hate to hear that because I remember those times of torment all too well. Good to read that you have things in good working order regarding your sleep apnea treatment. Since you've got the very expensive machine, sounds like you have central sleep apnea. Wishing you well in managing all this and finding things that help you get some decent sleep, and good luck with the shoulder surgery.

[debbluebird]

My sister finally had her rotator cuff repair done this week. She will be out of work for 3 weeks. Her other shoulder needs the revered total shoulder. She finally told me today that she will get that done too. She is retiring next February. She will be 62 then. So it will be after that.