Very Tired

For everything and anything else not covered in the other RLS/WED sections.
stjohnh
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Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Very Tired

Postby stjohnh » Tue Apr 16, 2019 5:54 pm

Deb, I don't either. But remember, Mirapex operates on the dopamine system, affecting the urge to move symptom. Meds that help with sleep seem to be gabapentin (and Lyrica/Horizant), THC, kratom, dipyridamole, IV iron. Opioids are a mixed bag for sleep. The others I mentioned are either known to affect the sleep system (the glutamatergic pathway).
Blessings,
Holland

debbluebird
Posts: 2027
Joined: Mon May 21, 2012 3:27 pm

Re: Very Tired

Postby debbluebird » Tue Apr 16, 2019 6:42 pm

stjohnh wrote:Deb, I don't either. But remember, Mirapex operates on the dopamine system, affecting the urge to move symptom. Meds that help with sleep seem to be gabapentin (and Lyrica/Horizant), THC, kratom, dipyridamole, IV iron. Opioids are a mixed bag for sleep. The others I mentioned are either known to affect the sleep system (the glutamatergic pathway).


Ok. I take gabapentin, Kratom and hemp oil, but they don't seem to work when I have that wide awake night after the mirapex. Being wide awake all night is almost as bad as having spasms.
I think I will try one more in a few days to see what happens. It sure is nice to feel "normal" that one night.

stjohnh
Posts: 855
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Very Tired

Postby stjohnh » Tue Apr 16, 2019 7:37 pm

Can you get THC (medical marijuana)? Hemp oil is cbd with some other stuff, but very little THC. Cbd helps lots of people sleep, but doesn't seem to help RLS patients sleep. Seems we need the THC.
Blessings,
Holland

Frunobulax
Posts: 157
Joined: Mon Jun 02, 2014 7:41 pm

Re: Very Tired

Postby Frunobulax » Wed Apr 17, 2019 10:05 am

debbluebird wrote:I have done this to myself by trying to wean off methadone. I'm only taking 2.5 mg times two. 1 pm and 9 pm. It seems like I should be able to stop it. Is it really doing that much ? That small of dose ?


I remember when I quit smoking. I used E-cigs and lowered the nicotine dose. After starting with 12mg/ml I went down to 1mg/ml in about half a year, which worked fine. Just reduced the nicotine every month or so, in small increments, I vaped a bit more after every reduction, but only for a few days. So everything went smoothly until I was at 1mg/ml and decided to go to nil. Some people said "1mg is nothing, your body is not getting any nicotine now", so I quit. Boy were they wrong. I had serious nicotine cravings, not as bad as when I tried to quit smoking cold turkey and only for about 2-3 weeks, but still bad. And my RLS flared up like crazy!

I guess once your body is addicted, even very small doses will get you hooked again and cause symptoms.

debbluebird
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Joined: Mon May 21, 2012 3:27 pm

Re: Very Tired

Postby debbluebird » Wed Apr 17, 2019 1:24 pm

I've noticed that my sleep is getting better, slowly. I contribute it to my back fusion. The spasms have gotten so much more mild, but enough to wake me up at times.
I'm averaging about 8 hours of sleep a night, which is so much better.
When I reduce the methadone by another 2.5 mg in a couple of weeks , I'm sure I will have trouble again, but now I feel I will be able to get through it.
I have felt from the beginning, about 30 plus years that my RLS and leg spasms, originated from my lower back. When I started having back pain back then, that's when everything started. I am fortunate that my surgery went well. There are so many people that don't get better after surgery.

badnights
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Location: Northwest Territories, Canada

Re: Very Tired

Postby badnights » Fri Apr 19, 2019 5:19 am

I am still kind of stunned at your recovery :D in a good way :)
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

debbluebird
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Joined: Mon May 21, 2012 3:27 pm

Re: Very Tired

Postby debbluebird » Sat Apr 20, 2019 1:42 pm

It's hard to say what will happen. I just might keep the mild spasms. Sometimes if I lie on the leg, on my side, I can sleep through them. Who knows, I might not be able to get off the methadone or gabapentin.
I am battling my weight right now. I hate it.

debbluebird
Posts: 2027
Joined: Mon May 21, 2012 3:27 pm

Re: Very Tired

Postby debbluebird » Tue Apr 23, 2019 7:59 pm

I decided to take a mirapex, 3 am Monday morning. I was tired of the spasms. I slept until 1 pm in the afternoon. Then last night I went to bed about 10 pm. Slept until 9 am this morning. I was awake for an hour in the middle. No spasms. Yeah !!
So tonight it will begin again, spasms. I just don't dare take another mirapex until the weekend. It sure was nice. I thought I would be awake last night.

debbluebird
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Joined: Mon May 21, 2012 3:27 pm

Re: Very Tired

Postby debbluebird » Wed Apr 24, 2019 4:05 pm

Third night of sleep. Yeah ! Had to take Kratom for mild spasms, but it worked. The only time is doesn't work are on the stronger spasms.
First time in a very long time, I have some energy in the morning. I feel like I could do a lot of things today. I don't remember when I last felt like this

debbluebird
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Joined: Mon May 21, 2012 3:27 pm

Re: Very Tired

Postby debbluebird » Thu Apr 25, 2019 2:16 pm

Not a good night last night. I guess last of mirapex worn off. Or maybe body craving it last night. Who knows. Then I wonder how much 5 mg of methadone is really helping.

fuz_mind
Posts: 84
Joined: Sun Apr 23, 2017 4:27 pm

Re: Very Tired

Postby fuz_mind » Thu Apr 25, 2019 2:52 pm

Polar Bear wrote:
--- give yourself permission to not sleep, permission to be awake ----
.



thank you for this quote

fuz_mind
Posts: 84
Joined: Sun Apr 23, 2017 4:27 pm

Re: Very Tired

Postby fuz_mind » Thu Apr 25, 2019 3:52 pm

debbluebird wrote:My normal has changed again. I'm up now most nights. Before this I was able to go to sleep around 11 pm, but only sleeping 2 hrs, up, then 2 more hrs, up then 2 more hrs. The up time was about 30 min to an hr.
Now my sleep Is still only for 2 hours. Then I'm up for a bit then another 2 hours. So my sleep is in the mornings, 4 to 6 hrs total. Starting around 6 am.
My leg spasms aren't as bad as they used to be, but enough to keep me from sleeping. Sometimes I would call them mild.
I'm also getting more RLS than I ever used to have. Hits me in the evenings. I just walk around, then go back to sitting.
I ride my bike a couple of times during the night, hoping that will help like it used to do. Lately, not.
I have not changed meds since the first of Feb. Taking Gabapentin 600 mg every 8 hrs. and Methadone 2.5 mg every 8 hrs.
I add different things most nights. Hemp oil, Kratom, Mirapex .125 mg or oxycodone 5 mg. I don't take the oxy very often or the Mirapex. They just don't help that much like they used to. I try to wait at least a week for the oxy and mirapex. At first these helped, now not so much.
So needless to say, I have no energy to do anything. I watch tv or read. I'm sick of tv.
I'm waiting for time to go by. My back fusion was in Oct. Doctor said it could take a year for the nerve endings to recover. I think it's funny that I'm having RLS. I rarely had it before.



you are not alone :-| hang in there

debbluebird
Posts: 2027
Joined: Mon May 21, 2012 3:27 pm

Re: Very Tired

Postby debbluebird » Sun Apr 28, 2019 5:39 am

This is not working. I want to go back up on the methadone and get rid of gabapentin and mirapex. I just can't control my food. I've tried everything.
Yes, spasms aren't pulling my leg as hard as they used to, but even though mild, they still keep me from sleeping. I'm only getting about 2 nights a week. On the other nights, it's oxy, Kratom and hemp oil. I might as well be taking the methadone, instead of the oxy. I don't like any of the drugs. Sometimes the Kratom works, then other times it doesn't. Tonight it didn't work.
At the beginning of the week the mirapex gave me three nights with the help of an oxy on the first night. It was wonderful. I haven't felt that good in years. It just showed me that one good night just isn't enough.
I don't like this weight gain. My blood pressure is up again and my clothes are tight. I'm miserable. A year ago I was 25 pounds lighter. That felt so good.
I want to scream !!!! I really thought by now, it would have been better.

debbluebird
Posts: 2027
Joined: Mon May 21, 2012 3:27 pm

Re: Very Tired

Postby debbluebird » Mon Apr 29, 2019 1:38 am

I made the final decision. I'm stopping mirapex and will wean off gabapentin. I already feel better having decided.

debbluebird
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Joined: Mon May 21, 2012 3:27 pm

Re: Very Tired

Postby debbluebird » Mon Apr 29, 2019 5:19 am

I have a new development that I'm giving into. I go to bed and have spasms. I get up, sit in my chair and fall asleep. I've even started using my bipap in the chair. I give up.


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