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

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

Postby EeFall » Fri Jan 29, 2016 2:24 am

Wow, I looked up gabapentin and see that I am probably augmenting, I guess I am forgetting some things I probably knew before. I'm going to try some old pramipexole (mirapex) that I have tonight and see if it #1 works, and if #2 prevents me from having cold sweats from not taking gabapentin. I wish that practically everything I take for this wouldn't make me dependent on it. At least I am not getting off 5 things at once which happened to me before.

The only thing about the pramipexole is that it is about 1 1/2 years past expiration date. I doubt it matters though. I keep it in the original container, within closed plastic zip bags, within a cardboard box, within a darkened closet :)

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

Postby Sojourner » Fri Jan 29, 2016 5:51 am

Ee….

Hope things are working out for you and that you are feeling better.
This post simply reflects opinion. Quantities are limited while supplies last. Some assembly required.

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

Postby ViewsAskew » Fri Jan 29, 2016 8:48 am

Gabapentin doesn't cause augmentation, Ee...am I missing something?

But, I honestly think rotation is an EXCELLENT idea. I have never found anything I can take regularly without issues. Without rotating them, I'd be in a dark hole somewhere.
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 Feb 01, 2016 8:07 pm

ViewsAskew wrote:Gabapentin doesn't cause augmentation, Ee...am I missing something?

But, I honestly think rotation is an EXCELLENT idea. I have never found anything I can take regularly without issues. Without rotating them, I'd be in a dark hole somewhere.


I tried going off gabapentin cold turkey, didn't think it would be big deal, I'm wrong again. Thursday at 3 am I work up in a sweat and I realized what had happened. I'm at work but it isn't fun. I slept about an hour last night.

I have had to take one gabapentin everyday to keep withdrawal down. Mirapex not working either. I am wondering what will happen now. Suboxone by itself won't let me sleep anymore. I will see how things go tonight and see if the doc has any ideas.

It seems to have snuck up on me and now my plans are shattered once again. SSD not available unless I lose my job and then if they approve it it will be 3 to 5 months to get it. Gotta keep hoping but I am used up it seems.

First article I looked out online said you can argment on gabapentin maybe it was not true? Also it suddenly, over a week, started to not work and made it worse.

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

Postby ViewsAskew » Mon Feb 01, 2016 9:24 pm

No question these drugs cause us to be physically dependent! But, to my knowledge, there is no augmentation.

I did find - and others have said this - that it seemed simply to lose effectiveness. Tolerance? Not sure.

Yikes - 3-5 months to get the SSD - I guess it's better than not getting it, but that is a long time. And, to lose your job.
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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Location: USA

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

Postby EeFall » Tue Feb 02, 2016 6:19 pm

I slept last night despite having withdrawal symptoms, that is very good news. Just using Suboxone.

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

Postby Polar Bear » Tue Feb 02, 2016 7:20 pm

Happy to hear you had a good 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

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

Postby debbluebird » Thu Feb 04, 2016 11:45 pm

Yeah, you have to wean up when you start Gabapentin and wean down when going off. Otherwise, it's hell.

I was 60 when I lost my job, fired. I had just fallen apart. It was a new company and didn't really know me. I think if I had stayed with my old job, they would have worked with me, maybe.
I applied for SSD right away. It took 6 months. Then I had to wait two years for Medicare. That's the way it works, no matter what age you are. So then, when I got my supplemental insurance, I got the one that pays for everything, F. If you decided to go with a cheaper one, they will not let you go to the higher one later. I have had several major surgeries, and have never paid anything out of pocket. When I turned 65, then the cost of the Medicare goes down, as well as the supplemental. The supplemental comes in tiers. All of the supplemental companies are the same in regard to what they pay and what it covers. But the cost per month can be different, according to the company. So shop around. You have the drug coverage separate. You have to shop around for that too, to see what they will cover. They are all different. I feel the main reason, is to cover antibiotics, when you are sick.

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

Postby debbluebird » Fri Feb 05, 2016 6:42 am

I should add that I got SSD for memory loss due to sleep deprivation.
Oh, and what they look at, is this, are you able to work at any type of job, not just what you were doing.

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

Postby EeFall » Fri Feb 12, 2016 4:11 am

debbluebird wrote:I should add that I got SSD for memory loss due to sleep deprivation.
Oh, and what they look at, is this, are you able to work at any type of job, not just what you were doing.


Good info Deb, thank you. I am a total wreak once again. If it wasn't for intermittent leave I would be fired, I am taking my day a week off plus some sick leave and vacation too. Suboxone alone is not working as far as sleep and the gabapentin just isn't working anymore.

Taking Mirapex not only didn't work but I dang near blew up at work and I was as mean as hell from taking it. I took a daladen (spelling) tonight, very powerful opioid and while it made me sleepy within an hour I had to get up. I am pacing as I write this. I am just so fed up, it is more difficult to cope as I get older.

Last 2 nights very bad sleep and so I am an SOB at work. 2 nights ago I took about 9 puffs on my vaporizer and got really stoned on maryjane. It did not help RLS but the Euphoria was so good it didn't matter although the sleep was so bad I am lucky I still have a job, so cranky at work.

I am thinking I might do it tonight also just to feel good, just for euphoria. I feel so bad, I know there is nothing else to try and I am fearful that the Suboxone is working less all the time. I wish I had something good to report but no. This is a lonely disease, very lonely and sad.

I'm standing here in the living room with all the lights out moving back and forth as I type. Of course it could be much worse as I can still think, I really hate it when I become a zombie vampire walking the corridors.

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

Postby EeFall » Fri Feb 12, 2016 10:54 am

An all nighter, dang, back in the mire of RLS. I can't even sit and it is 3 am. The rain has been terrible tonight, does it shed tears for me? I guess I won't be going to work today. I ended up taking 3 gabapentin plus what I had taken earlier and the mighty weed too and no help at all. Perhaps it all has made it worse or maybe Suboxone can no longer keep me at rest. If I am getting answers to my prayers, the answer is No, No, and No! Feeling a little zombie by now and my robe it my vampire cape. It is 61f in here so I am standing, it feels, in a crept. Alas I am not the destroyer of worlds but the destroyed being that I walk the night and cannot sleep by day as the, I think now, the lucky vampire. I am a bit crazy but lack of sleep and no lack of standing, swaying, and walking will do that. It also disturbs me that my exercise at night makes me healthier so I can live a long life in this dungeon of torture listening to my wife snore, I am so lucky, not!

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

Postby Polar Bear » Fri Feb 12, 2016 3:13 pm

Eefall - I empathise so much with your moving back and forth and seeking respite.
Last night was a toughie for me also, but rocking or walking on the spot just doesn't do it for me and I must actually walk, cover distance.
Last night I was awake all night and at eventually just after 7am fell asleep. Grrrr.... at 8am the alarm went off as my husband had a morning appointment. Then I saw it - last night's zopiclone sitting on the bedside table!!

Us sufferers do understand how the frustrations and lack of sleep affect the mood even though we know we need to be working in harmony with those around us. I hope you will not be offended by what I'm about to say - have you considered some/any type of counselling. Could this help with how you deal with your frustrations when symptoms are doing their worst. ...... I've no idea if this would help, I'm just thinking aloud - pondering on how you might get through the final working months until you are able to retire.
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: Riding the Big One (RLS 24/7, Hanging Ten)

Postby EeFall » Fri Feb 12, 2016 6:20 pm

Polar Bear wrote:Eefall - I empathise so much with your moving back and forth and seeking respite.
Last night was a toughie for me also, but rocking or walking on the spot just doesn't do it for me and I must actually walk, cover distance.
Last night I was awake all night and at eventually just after 7am fell asleep. Grrrr.... at 8am the alarm went off as my husband had a morning appointment. Then I saw it - last night's zopiclone sitting on the bedside table!!

Us sufferers do understand how the frustrations and lack of sleep affect the mood even though we know we need to be working in harmony with those around us. I hope you will not be offended by what I'm about to say - have you considered some/any type of counselling. Could this help with how you deal with your frustrations when symptoms are doing their worst. ...... I've no idea if this would help, I'm just thinking aloud - pondering on how you might get through the final working months until you are able to retire.


It just keeps getting worse it seems. My wife went to store and brought me back a Mocha. While she was gone I was reading a book on my smartphone while my laptop was on the floor where I usually leave it while not using it. While reading I fell asleep with my stainless steel drinking cup in my hand and I poured it onto my laptop keyboard. I immediately turned it over or it would probably be completely fried but now the touch pad is not working well. Fortunately I have a touchscreen too so I can bypass the touch pad, but this is a direct result of RLS, lack of sleep.

As far as counselling I doubt it would do much good. It is like the perfect storm when I go off the deep end. I have already lost a few jobs since RLS by blowing up at work. It happens when I'm on meds yet they are not working and I don't get enough sleep and I can't keep my mouth and emotions in check. As it is I avoid people like the plague just because of that. A shrink I went to when all of this began happening, before they realized I wasn't getting any sleep, said that I filter everything through my own life experience. That will always remain, I am still the little boy who's father left us for another woman. I know it is long in the past and all of that but it never goes away, I used to be able to keep it hidden before RLS problems but the meds and lack of sleep and then some big problem comes up and I lose it. So I can control myself if I am doing well but I can't when RLS is bad. There is also no reason to contact the doctor because there is not anything else to give me, they told me that a few years ago. If there were something better then they would have given it to me.

By the way - what is a Zopiclone? Were you seeing things? The other night I slept for 15 minutes only to be awaken by a terrible nightmare. It was so real. I swear that when I woke someone was holding me down but they were not there. My whole body was frozen. I couldn't even say anything. So that was the extent of my sleep that night. I can still see it so vividly - yikes.

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

Postby Sojourner » Sat Feb 13, 2016 6:56 am

EeFall wrote:
Polar Bear wrote:Eefall - I empathise so much with your moving back and forth and seeking respite.
Last night was a toughie for me also, but rocking or walking on the spot just doesn't do it for me and I must actually walk, cover distance.
Last night I was awake all night and at eventually just after 7am fell asleep. Grrrr.... at 8am the alarm went off as my husband had a morning appointment. Then I saw it - last night's zopiclone sitting on the bedside table!!

Us sufferers do understand how the frustrations and lack of sleep affect the mood even though we know we need to be working in harmony with those around us. I hope you will not be offended by what I'm about to say - have you considered some/any type of counselling. Could this help with how you deal with your frustrations when symptoms are doing their worst. ...... I've no idea if this would help, I'm just thinking aloud - pondering on how you might get through the final working months until you are able to retire.


It just keeps getting worse it seems. My wife went to store and brought me back a Mocha. While she was gone I was reading a book on my smartphone while my laptop was on the floor where I usually leave it while not using it. While reading I fell asleep with my stainless steel drinking cup in my hand and I poured it onto my laptop keyboard. I immediately turned it over or it would probably be completely fried but now the touch pad is not working well. Fortunately I have a touchscreen too so I can bypass the touch pad, but this is a direct result of RLS, lack of sleep.

As far as counselling I doubt it would do much good. It is like the perfect storm when I go off the deep end. I have already lost a few jobs since RLS by blowing up at work. It happens when I'm on meds yet they are not working and I don't get enough sleep and I can't keep my mouth and emotions in check. As it is I avoid people like the plague just because of that. A shrink I went to when all of this began happening, before they realized I wasn't getting any sleep, said that I filter everything through my own life experience. That will always remain, I am still the little boy who's father left us for another woman. I know it is long in the past and all of that but it never goes away, I used to be able to keep it hidden before RLS problems but the meds and lack of sleep and then some big problem comes up and I lose it. So I can control myself if I am doing well but I can't when RLS is bad. There is also no reason to contact the doctor because there is not anything else to give me, they told me that a few years ago. If there were something better then they would have given it to me.

By the way - what is a Zopiclone? Were you seeing things? The other night I slept for 15 minutes only to be awaken by a terrible nightmare. It was so real. I swear that when I woke someone was holding me down but they were not there. My whole body was frozen. I couldn't even say anything. So that was the extent of my sleep that night. I can still see it so vividly - yikes.



Had the same night-terror vivid dreams with Ambien. Nearly put me in the hospital.

Anyway E.., I hope you are having a better time of it now.


Wishing all who visit here some peace this night.
This post simply reflects opinion. Quantities are limited while supplies last. Some assembly required.

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

Postby Polar Bear » Sat Feb 13, 2016 7:28 pm

""""By the way - what is a Zopiclone? """"
Not a hallucination. Zopiclone is my sleeping pill :)
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


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