Restless leg syndrome

[Red Five 41735]

Searched and didn't find anything. This has been an on and off issue in small doses for awhile, but in the last few weeks it's become chronic. As in, I went to bed last night around 12 and wasn't able to go to sleep until about 4:30. Woke up again a couple hours later and that was it for the night. 

Suggestions from anyone who has dealt with this? The online tips I've found are not helpful.

[Surly Bevo 25734]

Cocaine, Ciallis by the handful and hot bitches for days. No need to sleep...problem solved.

[TwiceHorn 32076]

Wife has it, as does her mother.  That "other family has it" seems to be key to the diagnosis.

There seem to be two aspects to it, a dopamine problem kind of like Parkinsons, and a possible "seizure" connection, e.g. myoclonus.  Wife has both.  The seizure aspect of it can be diagnosed in an EEG with strobes.

The good news seems to be that if you have it, you won't have Parkinsons and the myoclonic seizures are unconnected to any other type of seizure.

Wife has tried Mirapex and Requip. Requip is more effective for her.  She recently had the myoclonic seizure aspect diagnosed and is taking Neurontin/gabapentin for that.  Seems to help.

[Red Five 41735]

Thanks. I took gabapentin for a different issue a few years ago and it turned me into a zombie. 

I tried these Hyland's Restful legs pills... not sure if they help or not. 

https://www.hylands.com/products/hylands-restful-legs?gclid=EAIaIQobChMI7qn40-aH5QIViLzACh2vGARDEAQYBSABEgI6qvD_BwE

[Knoxtnhorn 6305]

Be very careful.  I had an extremely bad experience with this.  I'll try and make this short.  (Note:  I may have the meds, mentioned below, out of order.)

About 7 years ago I was having - what I thought were - pretty bad issues with RLS.  I went to the doc and was put on (Mirapex).  My symptoms improved; however, I got to the point where I was having to take higher doses.  IIRC, Mirapex hits a point where you can't safely go to a higher dose.  (Again, I may have the meds out of order.)  So, the doc put me on gabopentin.  That stuff didn't work well.  I was then switched to another med (Requip?) which I took as a 24 hour patch.  This one kind of worked; however, the patch was burning holes in my skin.  I still have scars all over my shoulders and lower back where the patch tore me up.

As these meds were getting less and less effective, I started really having some irrational behavior.  This was probably due to getting, at times, about 5 hours of real sleep a week.  I'd be up all night.  One of the things that helped was - literally - beating the shit out of my legs with my fist.  The only thing that ever helped me sleep was during the handful of times I'd be on Hydrocodiene for a couple of back/knee injuries.  In reading the RLS board, many people eventually turn to this after trying everything else.  This was absolutely something I would not have considered thinking about per the long-term consequences.

So, one night right before Christmas 2016, I went completely cold turkey off the meds.  I was terrified as I had been on one or the other for 4 years and assumed my issues would get worse.  Weird thing, though.  I had no rebound symptoms and, just about, every RLS symptom I had has been non-existent since then.  My theory is that I had very minor RLS issues which were, somehow, made worse by the prescription meds.  

[TwiceHorn 32076]

I think wife takes a pretty low dose of gabapentin, as it goes.  She takes it in the morning as it seems to work on the daylight spasms, while the Requip is effective at night.  Our theory being that the myoclonic symptoms dominate during the day and the dopamine symptoms at night.

Another possibility is something called carbodopa-levadopa.  It's a basic Parkinson's treatment.

As maybe I didn't make clear, it can be either the dopamine thing or a seizure thing or a mix (or possibly something else entirely).  If you have the dopamine variety, the carbodopa-levadopa seems fairly effective.

[HornOnTheBayou 9062]

I get it fairly regularly. The key is to relax the muscles before bed. Three things that help me (in no particular order):

1) Advil
2) sex (or jacking off)
3) a real hot shower

[Quagmire 2148]

I get it fairly regularly. The key is to relax the muscles before bed. Three things that help me (in no particular order):
1) Advil
2) sex (or jacking off)
3) a real hot shower

I’m sure he has #2 down

[deadshank 24654]

Jeez.  I just had an older friend of mine down to the deer lease last weekend to go on a WW dove hunt.  That guy is et up with RLS and pretty much restless whole body syndrome.  His leg is constantly moving, toe-tapping, shaking out his wrists, up and down, back and forth, pacing like a caged animal.

I asked him if he had been to the doctor to get checked out.  He replied "yes" but he doesn't like taking medications.  Dude...if you stay in one place you'll dig a hole in the ground.  

He drove me crazy and I can only imagine what he's going through.

[Knoxtnhorn 6305]

2 hours ago, deadshank said:

Jeez.  I just had an older friend of mine down to the deer lease last weekend to go on a WW dove hunt.  That guy is et up with RLS and pretty much restless whole body syndrome.  His leg is constantly moving, toe-tapping, shaking out his wrists, up and down, back and forth, pacing like a caged animal.

I asked him if he had been to the doctor to get checked out.  He replied "yes" but he doesn't like taking medications.  Dude...if you stay in one place you'll dig a hole in the ground.  

He drove me crazy and I can only imagine what he's going through.

I know the feeling.  I couldn't sit through a movie at a theater.  I'd end up watching most of it from the side aisle leading out the door so as not to bother anyone.  Another issue I had was in the stupid teacher trainings I'd have to sit through all day.  I'm so glad I don't have to deal with that anymore.

[TwiceHorn 32076]

Weird thing about wife's version:  she doesn't actually move that often, particularly when awake.  But she says the sensation and the urge to move or twitch are insanely annoying.

Her mother is much more likely to twitch while sitting still and conscious.

It's a strange deal.

[Red Five 41735]

Mine is all in my calf muscles. Almost feels like little jolts of electricity, which if I try to ignore and power through, just gets stronger and more frequent.

Got a smooth two hours of sleep last night. Barely functioning right now.

[Quagmire 2148]

You try jacking off yet?

[Horn of Gabriel 1886]

I have minor RLS. Tried accupuncture and it worked. The accupuncture woman also recommended a magnesium supplement which helped a lot. Eastern medicine works.

[MoJames 8258]

On 10/6/2019 at 1:43 PM, Knoxtnhorn said:

Be very careful.  I had an extremely bad experience with this.  I'll try and make this short.  (Note:  I may have the meds, mentioned below, out of order.)

About 7 years ago I was having - what I thought were - pretty bad issues with RLS.  I went to the doc and was put on (Mirapex).  My symptoms improved; however, I got to the point where I was having to take higher doses.  IIRC, Mirapex hits a point where you can't safely go to a higher dose.  (Again, I may have the meds out of order.)  So, the doc put me on gabopentin.  That stuff didn't work well.  I was then switched to another med (Requip?) which I took as a 24 hour patch.  This one kind of worked; however, the patch was burning holes in my skin.  I still have scars all over my shoulders and lower back where the patch tore me up.

As these meds were getting less and less effective, I started really having some irrational behavior.  This was probably due to getting, at times, about 5 hours of real sleep a week.  I'd be up all night.  One of the things that helped was - literally - beating the shit out of my legs with my fist.  The only thing that ever helped me sleep was during the handful of times I'd be on Hydrocodiene for a couple of back/knee injuries.  In reading the RLS board, many people eventually turn to this after trying everything else.  This was absolutely something I would not have considered thinking about per the long-term consequences.

So, one night right before Christmas 2016, I went completely cold turkey off the meds.  I was terrified as I had been on one or the other for 4 years and assumed my issues would get worse.  Weird thing, though.  I had no rebound symptoms and, just about, every RLS symptom I had has been non-existent since then.  My theory is that I had very minor RLS issues which were, somehow, made worse by the prescription meds.  

Yup called Augmentation. Seems like your doc wasn't aware of it and set you up for failure.

Two most common treatable causes of RLS are low Ferritin (easily noted by labwork) and untreated OSA. I would urge anyone with symptoms of RLS to get checked out for OSA and treat it first before throwing Mirapex, Requip, Gabapentin, Lyrica or Opioids at it.

[Red Five 41735]

It’s improved, and I think it’s due to these two things.
1) I’ve cut out caffeine, almost to zero. One small cup of coffee in the morning.
2) I wear compression socks 4-6 hours a day.
Both have helped, I think. An average night is now waking up once around 3 am, stretching, and then back to bed.

[Hornsfan863 14]

I dealt with this for years, and for a long time I did a mix of stretching and a hot shower before bed, which seemed to help somewhat. Sugar, caffeine, and alcohol seemed to be the triggers for me, so cutting those also helped. But it was always still an on and off issue. It'd be good for a few weeks and then come back for a few weeks.

We moved a little over two years ago and I decided to bring it up again to my new doctor. She prescribed me pramipexole (Mirapex). I was hesitant to try it and was worried about having to regularly up my dosage, but I've never had to. As long as I take it 2-3 hours before bed and don't have too much sugar, caffeine, or alcohol in the evening it's a miracle drug (for me at least) - basically zero symptoms in the two years I've been taking it. Sounds like this isn't always the case, but it's been absolutely amazing how well it's worked for me. There's pretty much nothing more frustrating than not being able to sleep.

[Red Five 41735]

9 hours ago, Red Five said:

It’s improved, and I think it’s due to these two things.
1) I’ve cut out caffeine, almost to zero. One small cup of coffee in the morning.
2) I wear compression socks 4-6 hours a day.
Both have helped, I think. An average night is now waking up once around 3 am, stretching, and then back to bed.

Of course I post this, and then stay up half the fucking night with this shit. 

[Chopper 17431]

On 11/3/2019 at 7:38 AM, Red Five said:

Of course I post this, and then stay up half the fucking night with this shit. 

I just had a sleep study. If you haven't had one you might consider it. It's indirect but sleep apnea could be causing fatigue, which could cause rls. Also if you haven't tried acupuncture as mentioned above, I'm a +1 on trying that. It can be challenging to find a great provider but if you are in Austin I'd strongly recommend starting at the Neighborhood Acupuncture Project. 

[MoJames 8258]

On 10/9/2019 at 8:46 AM, MoJames said:

Yup called Augmentation. Seems like your doc wasn't aware of it and set you up for failure.

Two most common treatable causes of RLS are low Ferritin (easily noted by labwork) and untreated OSA. I would urge anyone with symptoms of RLS to get checked out for OSA and treat it first before throwing Mirapex, Requip, Gabapentin, Lyrica or Opioids at it.

 

32 minutes ago, Chopper said:

I just had a sleep study. If you haven't had one you might consider it. It's indirect but sleep apnea could be causing fatigue, which could cause rls. Also if you haven't tried acupuncture as mentioned above, I'm a +1 on trying that. It can be challenging to find a great provider but if you are in Austin I'd strongly recommend starting at the Neighborhood Acupuncture Project. 

See above, very common cause of RLS. Glad you got your sleep evaluated.

[Chopper 17431]

4 minutes ago, MoJames said:

 

See above, very common cause of RLS. Glad you got your sleep evaluated.

I saw it but the OSA acronym went right past me. Noticed the ferritin suggestion. Iron was high in my recent blood work so didn't mention that...but now going to donate blood regularly to get that down. 

[MoJames 8258]

Treating the OSA very well could bring your H/H down as well which is likely why it was high. With OSA, you tend to stop breathing for 8-12 seconds a spell knocking your oxygen down below 88%. The bodies response to this is to make more RBCs or elevate your H/H (Hemoglobin/Hematocrit). However, when you produce an excess amount of RBCs it can cause the blood to actually become too viscous setting up a situation for a clot to form. That's why currently you need to give blood. However, once you stop dropping below 88%, your body will adjust an bring the H/H back into normal ranges.