Suboxone - Living on the Edge

Use this section to discuss your experiences with prescription drugs, iron injections, and other medical interventions that involve the introduction of a drug or medicine into the body. Discuss side effects, successes, failures, published research, information about drug trials, and information about new medications being developed.

Important: Posts and information in this section are based on personal experiences and recommendations; they should not be considered a substitute for the advice of a healthcare provider.
EeFall
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Re: Suboxone - Living on the Edge

Postby EeFall » Tue Jun 24, 2014 3:05 am

ViewsAskew wrote:Are they rectal cramps or cramps in the muscle of the buttock? Hubby gets rectal cramps - unbelievably painful. He has a medicine that relieves them very quickly.


I don't really know. I thought they might have to do with the prostate but then that was removed almost two years ago :lol: It has been so painful over the years, but I am better at controlling it now, that I have had to crawl on hands and knees to get into the shower sometimes and turn on the hot water, which does work if nothing else does. Now I immediately take something like an Ibuprofen or Aleve and try to relax. I never told a doc about it, just learned to live with it. When I finally mentioned it to my dad and he told me he had it I just figured there was no reason to tell a doc about it. What is the medication your husband takes?

EeFall
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Re: Suboxone - Living on the Edge

Postby EeFall » Tue Jun 24, 2014 3:23 am

badnights wrote:
I have to work tomorrow no matter what. If I have zero sleep I still have to go in
Those very words show how much stress you've placed yourself under.


It can't be helped, I need the money. I did get about 5 hours sleep last night and worked today. It went okay. I'm hoping that I sleep better tonight.

EeFall
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Location: USA

Re: Suboxone - Living on the Edge

Postby EeFall » Thu Jun 26, 2014 1:38 am

6 hours sleep last night and 5 the night before. Usually that would be great for me but I am dead tired. I took off work a little early, lost focus.

I looked at my VPAP machine last night and found a function I have never seen before. It tells you how much sleep you had for the night, last 30 days, and last year. Last 30 days was 5.4, last year 4 hours of sleep a night. So the trend seems to be going up at least! I am amazed that the last year was 4 hours, I wish I had the info for the last few years I imagine it would continue 3, 2, 1, zip :lol:

EeFall
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Re: Suboxone - Living on the Edge

Postby EeFall » Thu Jun 26, 2014 3:45 pm

Taking off early yesterday was more than being tired. I woke up feeling yucky (a scientific term...not) but went to work. I lasted 5 minutes and came back home. I must have some kind of bug. I suppose if I were without RLS it would have been easier to stay at work but despite sleeping 6 hours last night I'm exhausted. I am sleeping because I am taking anything I can to get sleep but it just isn't the same as regular drug free sleep. Maybe it is just the RLS period, I know it has been getting worse my entire life, maybe it degrades the quality of ones sleep eventually too. Makes sense really because without meds I would be pacing 24/7 but since the meds mask the symptoms maybe the end game of RLS is that despite symptoms of movement it messes with your regular sleep too. It makes sense to me but maybe it sounds a little out there.

All I know for sure right now is I have a massive headache my stomach is bothering me, I'm nauseous, I'm getting hot and cold, mostly hot, general body aches and pains, and I'm exhausted but the possibility of getting sleep is next to nothing. I remember before WED and I would get sick I'd go to bed and sleep through it, that doesn't happen anymore even with meds.

Oh man, I am looking forward to retirement in 3 years and about 1 month. Then I could sleep and get up anytime I wanted to, which would probably be from about 4am until 10am as that seems the best time for sleep for me. It is the time of least RLS symptoms. I think I will attempt to lay down on couch, who knows maybe I will conk out.

Polar Bear
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Re: Suboxone - Living on the Edge

Postby Polar Bear » Thu Jun 26, 2014 6:04 pm

I am sorry that all is to difficult at present.
And although your retirement is 3+ years to go, I can absolutely 100% say that it was the best thing that I could have done.
My best sleep time is also 4am - 10am and as I write this I'm thinking sometimes..... what about just going to bed at 4am. Yes, I know it sounds crazy... just a thought.
Obviously not whilst employed. :)
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

doety
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Re: Suboxone - Living on the Edge

Postby doety » Sat Jun 28, 2014 5:33 pm

I hate seeing so many of our folks trying Suboxone. As far as I'm concerned, it's just another dangerous drug docs are throwing at us. I took Methadone because a doc said I was "at the end of the line." Fine for a while until I would fall alseep at the wheel or while talking to people. I searched for help in getting off. Long story I won't tell. I was urged to take Suboxone. THIS IS THE IMPORTANT PART: When I needed to get off it, I tapered down and then spent the next NINE DAYS WALKING, crawling, sobbing, rolling around on the floor. There is NOTHING that will help you through this. The doctor said it was "sticky" and that I just had to get it out of my system. I've never gone through such hell.

Just know that if you start it, there's no easy way to stop. (my doc tried oxy, etc. etc. ....nothing).

Oh, how are those new studies coming????

EeFall
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Re: Suboxone - Living on the Edge

Postby EeFall » Sat Jun 28, 2014 7:04 pm

doety wrote:I hate seeing so many of our folks trying Suboxone. As far as I'm concerned, it's just another dangerous drug docs are throwing at us. I took Methadone because a doc said I was "at the end of the line." Fine for a while until I would fall alseep at the wheel or while talking to people. I searched for help in getting off. Long story I won't tell. I was urged to take Suboxone. THIS IS THE IMPORTANT PART: When I needed to get off it, I tapered down and then spent the next NINE DAYS WALKING, crawling, sobbing, rolling around on the floor. There is NOTHING that will help you through this. The doctor said it was "sticky" and that I just had to get it out of my system. I've never gone through such hell.

Just know that if you start it, there's no easy way to stop. (my doc tried oxy, etc. etc. ....nothing).

Oh, how are those new studies coming????


Before Suboxone the doc got me off methadone, pramipexole, and Lyrica. I was seriously dependent on all 3 and it took a month to get off them and awhile longer even to feel free. Then he put me back on methadone and it just didn't work anymore. I had 2 docs before this tell me I was at the end of the line. There wasn't anything else to hope for so he tried Suboxone and I agree it will be even harder for me to get off it than all 3 of the others combined. I start having serious withdrawals a few hours after missing a dose, it would be horrible to stop BUT why would I? I'm finished without it, I would lose my job and most everything I have. This is the end game. I live from day (night to night) to day and I'm always 3 nights of bad sleep in a row to going back to being a zombie. I'm just trying to survive until there is some kind of cure or a better med, until that time I will gladly be dependent on Suboxone.

By the way when I got off all 3 meds at one point I jumped from the couch unto a hardwood floor on my knees because I thought I was in the circus jumping from one elephant to the other if you want to talk about bad withdrawals and at one point I was having a conversation with 3 people in the hallway who disappeared when I reached out to touch one of them. By then I had been up at least 6 days without sleep, all the time standing or pacing.

Polar Bear
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Re: Suboxone - Living on the Edge

Postby Polar Bear » Sat Jun 28, 2014 7:53 pm

Eefall - It must be hard recalling those times and I do so hope that you will always have a medication that will give you some element of relief.
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

EeFall
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Location: USA

Re: Suboxone - Living on the Edge

Postby EeFall » Sat Jun 28, 2014 8:47 pm

Polar Bear wrote:Eefall - It must be hard recalling those times and I do so hope that you will always have a medication that will give you some element of relief.


I have contacted my doc almost pleading for another med to take along with Suboxone to do away with the hyper-alertness it is now causing. Eventually my stashes will be depleted and I will have the symptoms of WED still under control but no sleep. Actually that is better than having the RLS too but I really don't want to go back to living in a dream state again.

Polar Bear
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Re: Suboxone - Living on the Edge

Postby Polar Bear » Sun Jun 29, 2014 12:16 am

I do understand .... I do not have the severity of the difficulties that you have, and have often used the phrase, I can be awake during the night with WED symptoms or I can be awake without WED symptoms. I prefer to be without the WED symptoms.
Alertness is a fierce opponent and to have hyper alertness to the extent that you are dealing with is indeed combat.
Each nightly battle is dealt with night by night.... and we all fight the war with WED in our own way.

Isn't it amazing that in 2014 there is not a medication that will give us knock out sleep for about 7 hours. I guess the side effects of such a drug would be another story.
I wish you goodnight, it's 1.15am here, and we will see what tonight brings for everyone.
Wouldn't it be wonderful if everyone had a peaceful and contented night.
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

ViewsAskew
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Re: Suboxone - Living on the Edge

Postby ViewsAskew » Sun Jun 29, 2014 12:42 am

This is, indeed, almost worst than the WED. Because you expect it will all be better....and it is NOT.

I've been experimenting, for my time off this year, and find that if I try to sleep during "normal" hours, I have WED. If I try to sleep later than normal hours, I have hyper alertness. The only way I sleep easily, is going to bed after about 20 hours being awake. Then I sleep excellently. But, that means that I have 28 hour days. My schedule literally changes EVERY day. But, I sleep.

It's not easy to get anything accomplished, even when I do not work. I'd never be able to do it and work.
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.

Polar Bear
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Re: Suboxone - Living on the Edge

Postby Polar Bear » Sun Jun 29, 2014 2:27 am

Views, it's a pretty good result that you have found a way to have your sleep, albeit totally antisocial and would not be compatible with a 'normal' working day.
Tonight I went to bed at 1.15am read for two hours and now I'm back up at the pc. If nothing else, I catch up on the dishwasher, emails etc. Folks are used to seeing peculiar 'times' on my correspondence. Come 4 or 5 am I shall with luck find sleep for about 5 hours.

To ever have to consider that sleep would escape for 4 or 5 or 6 days is mind blowing, the longest I have experienced non sleep is about 72 hours. And even that would sound unbelievable to a non sufferer.
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

EeFall
Posts: 1494
Joined: Thu Jan 03, 2013 4:11 am
Location: USA

Re: Suboxone - Living on the Edge

Postby EeFall » Sun Jun 29, 2014 5:42 am

Polar Bear wrote:I do understand .... I do not have the severity of the difficulties that you have, and have often used the phrase, I can be awake during the night with WED symptoms or I can be awake without WED symptoms. I prefer to be without the WED symptoms.
Alertness is a fierce opponent and to have hyper alertness to the extent that you are dealing with is indeed combat.
Each nightly battle is dealt with night by night.... and we all fight the war with WED in our own way.

Isn't it amazing that in 2014 there is not a medication that will give us knock out sleep for about 7 hours. I guess the side effects of such a drug would be another story.
I wish you goodnight, it's 1.15am here, and we will see what tonight brings for everyone.
Wouldn't it be wonderful if everyone had a peaceful and contented night.


It would be wonderful if everyone here had a good nights sleep. It is about 10:45pm here and I am off to bed in a few.

EeFall
Posts: 1494
Joined: Thu Jan 03, 2013 4:11 am
Location: USA

Re: Suboxone - Living on the Edge

Postby EeFall » Sun Jun 29, 2014 5:46 am

ViewsAskew wrote:This is, indeed, almost worst than the WED. Because you expect it will all be better....and it is NOT.

I've been experimenting, for my time off this year, and find that if I try to sleep during "normal" hours, I have WED. If I try to sleep later than normal hours, I have hyper alertness. The only way I sleep easily, is going to bed after about 20 hours being awake. Then I sleep excellently. But, that means that I have 28 hour days. My schedule literally changes EVERY day. But, I sleep.

It's not easy to get anything accomplished, even when I do not work. I'd never be able to do it and work.


That is an interesting thought that maybe (without having a work schedule) that we might be better off not going by the 24 hour day with the regimented sleep virtually everyone does, maybe it just isn't good for us.

EeFall
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Location: USA

Re: Suboxone - Living on the Edge

Postby EeFall » Sun Jun 29, 2014 6:02 am

Polar Bear wrote:Views, it's a pretty good result that you have found a way to have your sleep, albeit totally antisocial and would not be compatible with a 'normal' working day.
Tonight I went to bed at 1.15am read for two hours and now I'm back up at the pc. If nothing else, I catch up on the dishwasher, emails etc. Folks are used to seeing peculiar 'times' on my correspondence. Come 4 or 5 am I shall with luck find sleep for about 5 hours.

To ever have to consider that sleep would escape for 4 or 5 or 6 days is mind blowing, the longest I have experienced non sleep is about 72 hours. And even that would sound unbelievable to a non sufferer.


I remember a doctor (in so many words) calling me a liar when I told him I hadn't slept for days. He truly believed the untruth that has been passed around for years that a person can't live without sleep after 3 days or something like that, and he was a sleep doctor! It is strange the fiction we often believe without actually questioning if it is true or not.

I did see this poor man on a TV documentary who had a terrible disease, he was in a hospital bed moving around, with his eyes closed, in great distress, he was moaning. He hadn't really slept in over 6 months by then, when they filmed him. He lasted a year or two without sleep before he died and I believe it was from a stroke. Some terrible disease much worse than WED that ran in his family. There is always someone who is worse off, it must have been absolute hell for him.


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