What Severe RLS is Like

For everything and anything else not covered in the other RLS/WED sections.
EeFall
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Re: What Severe RLS is Like

Postby EeFall » Fri Sep 08, 2017 3:44 pm

4 hours 58 minutes sleep last night seems to be trending downward. Wait and see I guess. If it keeps going down as I begin taking less Suboxone it is not going to work.

ViewsAskew
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Re: What Severe RLS is Like

Postby ViewsAskew » Fri Sep 08, 2017 8:38 pm

EeFall wrote:4 hours 58 minutes sleep last night seems to be trending downward. Wait and see I guess. If it keeps going down as I begin taking less Suboxone it is not going to work.


Maybe you will find you can take a bit less...just not a lot less.
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.

badnights
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Re: What Severe RLS is Like

Postby badnights » Sat Sep 09, 2017 4:10 am

Don't go so fast. Hold steady at 3.5 or 3 for a few weeks at least.
And consider diet as a possible contributing factor. Are you eating differently now than the first time you reduced?
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
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debbluebird
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Re: What Severe RLS is Like

Postby debbluebird » Sat Sep 09, 2017 8:58 am

Ann and I just talked about switching drugs right when you think you are augmenting. I still think you should add something, then switch it with something else. Maybe then you will be able to reduce the suboxne. It sounds just like when I thought I could reduce merapex and couldn't.

EeFall
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Re: What Severe RLS is Like

Postby EeFall » Sat Sep 09, 2017 12:52 pm

7 hours 14 minutes sleep and at 2 1/2 mg for suboxone. Maybe it will work. The next few days we will be looking at health care medical to see if we can find something before my Cobra ends. I suppose we will have nothing the way it is looking until Medicare in 3 years and 4 for wife. Scary but then a 100 years ago who had health insurance?

debbluebird
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Re: What Severe RLS is Like

Postby debbluebird » Sun Sep 10, 2017 4:20 am

I managed 2 years without it.

debbluebird
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Re: What Severe RLS is Like

Postby debbluebird » Sun Sep 10, 2017 2:19 pm

I had just turned 60 when I stopped working, applied for disability, got it, and then got 2 Medicare 2 years later. I was 62. You usually don't get Medicare until, 65. My case was sleep deprivation caused memory loss caused by RLS. I imagine you would still he working if it weren't for the RLS.

EeFall
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Re: What Severe RLS is Like

Postby EeFall » Tue Sep 12, 2017 6:06 pm

4 hours sleep last night it is on a roller coaster yet again. Staying at 2 1/2 mg. Even took the Wild Lettuce last night. May have helped as I did not sleep until I took it.

I tried to signup for insurance through the government today but open enrollment begins November 1st, I was not eligible for closed enrollment but it says I get a $577.00 tax credit a month when we do enroll. Not sure about what this means but sounds like if we got insurance that was $577.00 a month that we would not pay anything? Does anyone know about this in the USA? Basically Obama care I guess. Our medical ends October 1st but kept the Cobra dental on a month to month. Pretty cheap.

EeFall
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Re: What Severe RLS is Like

Postby EeFall » Fri Sep 15, 2017 9:02 pm

Last few days down to 2 1/4 mg of Suboxone. Hovering around 6 hours sleep. I think it is more about when I take it than how much the last few days. If I take too much towards bedtime it backfires and I sleep for a few minutes and wake up, then I will stay up reading for several hours before I can get back to sleep. The hyper-alertness from taking it too late. Today I will do 2 1/4 mg and tomorrow I will go to 2 mg and see what happens. If it continues to hover around 6 hours sleep (4 to 8 hours a night) I will just continue at 2 mg. At 4 mg I was sleeping 8 hours a night, sometimes even more, but I will save money this way. Maybe after taking 2 mg for several months it will go back up to 8 hours.

If it works I will ask the doctor to decrease the dose in half so I can actually save money, right now I am just stocking up on extra meds which is also okay if something were to happen I would have backup meds.

Down 31 pounds since retiring and trying to get in 10,000 steps almost everyday plus working out in the yard. I am only 5 lbs from what my sleep doctor said I should shoot for which is a small miracle. I suppose I could lose even more but I will see when I get there, not exactly sure what is the ideal weight.

I have to wait until November to signup for open period for health insurance. We kept the dental Cobra but could not afford medical Cobra. All of October we will be without medical insurance. Actually I believe when we signup in November it does not become effective until January 2018 - yikes I hope nothing happens the next few months. We have always had health insurance, feels a little strange.

ViewsAskew
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Re: What Severe RLS is Like

Postby ViewsAskew » Fri Sep 15, 2017 11:17 pm

I have to take the methadone many hours early. It takes about 4 hours to get through the hyper altertness and to reach maximum effect. The alertness starts in about 35-45 minutes, with some minor help. If I take mine 30 minutes before bed, I cannot sleep because of the RLS. If I take it an hour before, I am wide awake. It amazes me how precise I have to be.
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.

ViewsAskew
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Re: What Severe RLS is Like

Postby ViewsAskew » Fri Sep 15, 2017 11:18 pm

I have to take the methadone many hours early. It takes about 4 hours to get through the hyper altertness and to reach maximum effect. The alertness starts in about 35-45 minutes, with some minor help. If I take mine 30 minutes before bed, I cannot sleep because of the RLS. If I take it an hour before, I am wide awake. It amazes me how precise I have to be.


Great news on the weight! Stress really affects us.
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: What Severe RLS is Like

Postby EeFall » Sat Sep 16, 2017 4:49 pm

ViewsAskew wrote:I have to take the methadone many hours early. It takes about 4 hours to get through the hyper altertness and to reach maximum effect. The alertness starts in about 35-45 minutes, with some minor help. If I take mine 30 minutes before bed, I cannot sleep because of the RLS. If I take it an hour before, I am wide awake. It amazes me how precise I have to be.


That is why I ended up taking Suboxone 4 times a day and most of it before late at night. Last night I slept 7 hours and 58 minutes. I needed it. Last night I took 1/4 mg an hour before sleep and seems to have worked well. The only difference was I was taking 1/3 mg at night instead of 1/4 mg. I will do the exact same thing tonight except tonight it will be 2 mg only for entire day. I hope it works.

Polar Bear
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Re: What Severe RLS is Like

Postby Polar Bear » Sat Sep 16, 2017 10:42 pm

I'll be watching with interest to see how you cope tonight.
Betty
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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: What Severe RLS is Like

Postby EeFall » Sun Sep 17, 2017 11:48 am

Polar Bear wrote:I'll be watching with interest to see how you cope tonight.


7 hours and 50 minutes sleep even though I woke at 4:30 am. I feel a little fidgety, it must be right at the edge of the lowest dose of Suboxone I can take at 2 mg. I feel good though now if this sleep continues for next week I should be free and clear! :lol:

Polar Bear
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Re: What Severe RLS is Like

Postby Polar Bear » Sun Sep 17, 2017 2:44 pm

Sounds like you could be near your tipping point.
Betty
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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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