Severe RLS and Severe OSA Combined

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teambalch

Severe RLS and Severe OSA Combined

Post by teambalch » Tue Mar 03, 2015 3:43 pm

Been on cpap since late October but fog did not clear. Found a neurologist and he convinced United Healthcare to let me to a study in-center to check for RLS. Results came back severe. Put me on .125 Mirapex titrating up to current .5 nightly dose. Having lots of side effects, most notably still in the fog plus dizzy and severe neck stiffness. Called nurse today and we will start titrating down to remove me from the drug. I am down to about 1 or 0 AHI at a pressure of 13 and just want to come out of the fog. Nurse says I can't go on Nuvigil or any other stimulant until they have RLS under control or insurance won't pay. Any suggestions on a course of treatment I might inquire about?

JDS74
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Re: Severe RLS and Severe OSA Combined

Post by JDS74 » Tue Mar 03, 2015 4:22 pm

You may be unduly sensitive to Mirapex (pramipexole) so that a lower dosage might do the job. The serum half-life is 8.5 hours for normal folks (12 hours for elderly). That means you still have a dosage of .250 when you wake in the morning after a .5 dose at bed time.

As you titrate down, the morning effects may go away.

I get better results when I take my evening meds about 9:00 pm but still have some effects until 10:00 or 11:00 the next day. You might try taking yours early to see if that helps. My pramipexole dose is .5 also.

To see if your RLS is under control, you may need to have another in-lab sleep study. I did and my PLMD rate dropped from 70 per hour to less that 5 per hour.

If you don't already have a copy of your sleep study report, you should get one.

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kteague
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Re: Severe RLS and Severe OSA Combined

Post by kteague » Tue Mar 03, 2015 8:33 pm

I'm guessing you were diagnosed with PLMD? People can have RLS and PLMD, or just one. There's some basic thing that anyone with RLS and/or PLMD can do to begin the discovery process of finding what will help. First of all, did you doc test your ferritin level before putting you on the Mirapex? If not, shame on them. Current thinking is that persons with lower levels of ferritin are most prone to developing augmentation on a dopamine agonist. If you have not had your ferritin checked, I would want that information to consider in the decision whether to wean off or not. Your ferritin level ideally would be upwards near 100. And as was suggested, a lower dose may be better. If it's not working for you at a lower dose, I'd be very reserved at repeated increased doses. Also a good time to be sure you are nutritionally sound, particularly your magnesium and vitamin D. Good luck going forward.

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Re: Severe RLS and Severe OSA Combined

Post by AMK » Tue Mar 03, 2015 8:47 pm

When I told my sleep doctor I have RLS, she said she would test my ferritin and if it was under 50 then that was the reason for my RLS. It was 43. So I've been on iron supplements. I finally found one that doesn't upset my stomach. I don't think anyone should supplement iron without having had their ferritin level checked because iron can be dangerous for some people. Also I'll be having followup ferritin levels because once I reach the goal I can just stop taking iron and my level will stay the same.

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kteague
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Re: Severe RLS and Severe OSA Combined

Post by kteague » Tue Mar 03, 2015 9:06 pm

AMK wrote:When I told my sleep doctor I have RLS, she said she would test my ferritin and if it was under 50 then that was the reason for my RLS.
I hope your doctor is right. Sometimes low ferritin is a piece of the puzzle, sometimes it's the whole puzzle. I was speaking more to successfully using the dopamine agonists than resolving the RLS. If you do find it resolves yours, please do check back in and let us know. Always like to hear outcomes.

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Re: Severe RLS and Severe OSA Combined

Post by wildboar » Tue Mar 03, 2015 10:37 pm

Anyone with RLS should be taking magnesium malate:

http://www.mymagnesiumdeficiency.info/m ... less-legs/

Before being diagnosed with severe OSA, I had the jaw clenching they talk about on that page and I also destroyed a number of bottom bed sheets from what I would guess was periodic limb movement. I've been taking source naturals brand magnesium malate and it makes everything better. I believe all of it is linked as part of a magnesium deficiency that takes a long time to correct.

Southernjan

Re: Severe RLS and Severe OSA Combined

Post by Southernjan » Wed Mar 04, 2015 11:32 am

I have only Severe OSA : using 5mm pressure
mask: ResMed Mirage Activia LT
It works for me for 6 years

teambalch

Re: Severe RLS and Severe OSA Combined

Post by teambalch » Sat Mar 07, 2015 9:32 am

Started titrating down and just going from 4 .125 pills to 3 is making me feel like I'm withdrawing from some addictive drug. I feel flu-like, creepy crawlies all over my body, major fog, nausea. Nurse said titrate down 1 pill every 3 days. I don't think that's a good idea from what I have ready and what I am feeling. Thinking I should do more like reducing by 1 pill every 7 days. Once I am "weaned" off Mirapex, they want me to start Requip. Thoughts?

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TexasTom
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Re: Severe RLS and Severe OSA Combined

Post by TexasTom » Sat Mar 07, 2015 3:27 pm

teambalch wrote:Started titrating down and just going from 4 .125 pills to 3 is making me feel like I'm withdrawing from some addictive drug. I feel flu-like, creepy crawlies all over my body, major fog, nausea. Nurse said titrate down 1 pill every 3 days. I don't think that's a good idea from what I have ready and what I am feeling. Thinking I should do more like reducing by 1 pill every 7 days. Once I am "weaned" off Mirapex, they want me to start Requip. Thoughts?
One pill dosage change every 7 days is a good tritrate level. Anything do to with brain chemicals, slow is good! For the final week, even dropping to a half tablet a day is taking it nice and slow (which is a good thing)

Use extreme caution with Requip. Your spouse needs to be aware of behavior disorders associated with the drug.

PLMD -- first time I was at 60 events per hour. They discovered my oxygen was dropping below 80% (it was good for three hours, then dropped like a rock. Technician didn't notice as I typically sleep only three hours a night). Second study they had me on CPAP, which kept it in the 90's. Not bad. PLMD was at 120 events/hour. For me it is sever PLMD & sever Central Apnea. Yes, I do have Parkinson's so there is a reason for it.

My CPAP has helped with the apnea's. Best one ever.... sound asleep and peaceful rest. All I remember is my 50# border collie jumped onto my chest! That got my attention, once I was up she went back and laid down. I was wonder what all that way about, but made it to the bathroom and back to sleep for an hour or two. Looking at my CPAP data the next morning.... Central Apnea events.... four minutes of not breathing. My Bordie Collie is 15 years old, and probably knows me better than anything else.

teambalch

Re: Severe RLS and Severe OSA Combined

Post by teambalch » Sat Mar 07, 2015 7:39 pm

What should I be concerned about with Requip? I am thinking about not taking anything and just trying to address the RLS and PLMD naturally rather than these drugs. The withdrawal issues are scaring me to death. I was not prepared for these drugs to be so powerful.

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Sclark08
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Re: Severe RLS and Severe OSA Combined

Post by Sclark08 » Sat Mar 07, 2015 7:56 pm

I take Gabapentin 300 mg 1 before bed. It keeps RLS under control. It does have an element of drowsiness but not as bad as Mirapex. I couldnt take that stuff

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TexasTom
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Re: Severe RLS and Severe OSA Combined

Post by TexasTom » Sun Mar 08, 2015 9:29 am

teambalch wrote:What should I be concerned about with Requip? I am thinking about not taking anything and just trying to address the RLS and PLMD naturally rather than these drugs. The withdrawal issues are scaring me to death. I was not prepared for these drugs to be so powerful.
Dopamine Agonist. Requip and Mirapex help trick the brain into thinking it is getting more dopamine. There is a chance of increased risk/reward behavior from shopping, gambling, sex addiction, and other area's of the brain. Not everyone is so affected, but use with caution and best if you live with a spouse or SO who can give you honest feedback. If your spouse suddenly notices a huge increase on eBay auction purchases.... there might be a correlation! <grin>

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kteague
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Re: Severe RLS and Severe OSA Combined

Post by kteague » Sun Mar 08, 2015 12:32 pm

TexasTom wrote: ...Central Apnea...
Tom, I am curious about the machine you have listed. I'm under the impression it does not treat central apnea, only obstructive. Am I missing something? BTW, experientially I agree with your perspective of slow is better when weaning of a dopamine agonist.

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kteague
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Re: Severe RLS and Severe OSA Combined

Post by kteague » Sun Mar 08, 2015 12:54 pm

teambalch wrote:Started titrating down and just going from 4 .125 pills to 3 is making me feel like I'm withdrawing from some addictive drug. I feel flu-like, creepy crawlies all over my body, major fog, nausea. Nurse said titrate down 1 pill every 3 days. I don't think that's a good idea from what I have ready and what I am feeling. Thinking I should do more like reducing by 1 pill every 7 days. Once I am "weaned" off Mirapex, they want me to start Requip. Thoughts?
I am not a medical professional, but I strongly support slow weaning. What does that mean? Heck, I don't know, but 3 days does not sound slow to me. In my over 10 years experience on these meds, I am sympathetic to what you are going through. My several transitions off and on these meds have been some of the most difficult times of my experience. While i would hate to suggest more drugs, one thing I regret is that I didn't avail myself to meds of a different type while transitioning. I think I suffered unnecessarily. There is a forum for RLS that talks a lot about augmentation and getting off of dopamine agonists. They advocate stronger drugs. If you are already concerned about meds, that may not be an approach you are interested in. I just hate to see you suffer if you don't have to. Since I don't know how much you are actually suffering - everyone's experience is different - I can only offer my perspective. My time before developing trouble again on the next dopamine agonist was short lived. I've read several accounts of others having that same experience. If you can, maybe wean off the med you are on, whether with the help of other meds or not, and give yourself a chance to work toward being your healthiest and knowing your magnesium, vitamin D, ferritin level, etc are at their best. Read somewhere that B vitamins are important too. If you choose to go on another agonist, please do not do that before knowing your ferritin level is up near the oft recommended level of 100. I am fortunate that I am able to control my PLMD with a TENS Unit these days. It may be of some help to you, but if you are augmenting, I'm guessing the med will need to be out of your system for a TENS to have a better chance of helping. Good luck going forward.

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teambalch

Re: Severe RLS and Severe OSA Combined

Post by teambalch » Mon Mar 09, 2015 11:38 am

I am indeed suffering greatly during this withdrawal time. Feel like creepie crawlies in my skin (arms and legs) and flu-like in terms of mental clarity or the lack thereof. Very swimmy-headed sometimes. Neck stiffness still persisting. Clearly this is withdrawal. I am still at the 3, .125 pill titration level and don't intend to go down to 2 until it has been at least seven days. Have stopped caffeine intake (no coffee is a problem!), started multivitamins and arranged for a blood test with my PCP to check ferritin level and A1C. Currently not thinking I want to start the Requip once I get this out of my system. Now if I can just hold my job until then. I am a paralegal and the lack of mental clarity is becoming a problem. Boss has directed I go home any time I feel that there is a medical impairment affecting my ability to do my job. Zero error tolerance, mental or otherwise. How long can I survive under this scrutiny while experiencing this severe withdrawal?