CPAP for OSA, now TENS for RLS & PLMD?

I began CPAP therapy on 11/4/13, and still find myself waking up quite often throughout the night. Not surprisingly, I still feel sleepy and unrested.

Is the CPAP controlling my OSA? I can't tell that for sure since the machine I was given is a "brick". But, I did purchase a pulse oximeter and find that most nights my O2 sat rate doesn't go below 88% and usually stays between 90% and 95% (it went down to 73% during my first sleep study). So at least I know CPAP is helping.

I have suffered from RLS for years, and the sleep study shows I also have PLMD. I've done a lot of reading in this forum and have been especially interested in posts by kteague. By reading her posts I now understand that PLMD can become more troublesome after beginning CPAP therapy. Perhaps PLMD is able to ramp up to full speed without constant interruptions by OSA events?? The results of my two sleep studies seem to verify this theory:

- Without CPAP: The PLM index was 21.7 and the PLM arousal index was 0.5
- With CPAP: The PLM index was 145.2 and the PLM arousal index was 49.2


At the moment I am focusing on two hurdles:

1.) I need a data-capable xPAP machine so I can monitor the effectiveness of my therapy.

a. During my last visit (doctor was out of town so I saw his PA), she mentioned possibly ordering another sleep study. First she wants the DME to do a home-visit to make sure my machine is setup and working as prescribed. (And I’m sure they will also be verifying compliance.)
b. After I am sure we have settled on the exact type of machine I need, if a new prescription isn’t issued I’ll just purchase a data-capable machine out of pocket.

2.) I need to find a way to manage my RLS and PLMD, but, I really don’t want to use medication if at all possible!

a. During my first visit with the sleep doctor I told him about my RLS and he prescribed Gralise (gabapentin). One of the side-effects was dry mouth so bad that it caused 3 cavities after just 5 weeks of use!
b. When I reported my problem with Gralise and let him know I wanted to stop taking it; he wanted to give me a prescription for Klonopin. I told him I would prefer to wait and see if it is needed.
c. Years ago I took Mirapex for RLS and had to stop due to some bad side-effects. After a difficult time weaning off of that medication, the doctor I was seeing at that time prescribed Tylenol3 to control my RLS and I actually had good results with that. Sometimes now I take Tylenol Arthritis medicine to help relieve RLS symptoms.
d. Based on the success I had with pain medication, I’m thinking that perhaps using a TENS unit could help resolve sleep disturbance caused by RLS and PLMD. (I know kteague has had success treating her PLMD with a TENS unit.)
e. I plan to discuss using a TENS unit at my next appointment.

This is all new to me but I think after reading a LOT of posts here and trying to compare and contrast where possible; and, through the process of simply putting it all in writing for this post, I have a better understanding of the path ahead. However, I welcome any suggestions or comments from those who have far more experience than I do in this journey.


FIRST SLEEP STUDY 10/20/13:

SLEEP ARCHITECTURE: The total recording time of the polysomnogram was 408.3 minutes. The total sleep time was 384.0 minutes. The patient spent 1.3% of total sleep time in N1, 77.6% in N2, 6.0% in N3, and 15.1% in REM. Sleep latency was 4.6 minutes. REM latency was 326.5 minutes minutes. Sleep Efficiency was 94.0%. The total wake time after sleep onset was 19.7 minutes.
AROUSAL EVENTS: Respiratory arousal index of 69.1 with PLM arousal index of 0.5 and spontaneous arousal index of 12.5.
RESPIRATORY EVENTS: The polysomnogram revealed a presence of 141 obstructive apneas, 4 central apneas, 0 mixed apneas, and 306 hypopneas which resulted in a combined Apnea/Hypopnea index (AHI) of 70.5 events per hour. The supine AHI was 70.5 and the REM AHI was 61.0. There were 0 Respiratory Effort Related Arousals resulting in a RDI of 70.5. Baseline oxygen saturation was 94%. The lowest oxygen saturation was 73%.
CARDIAC SUMMARY: EKG remained normal sinus rhythm.
LIMB ACTIVITY: The PLM index was 21.7 and the PLM arousal index was 0.5.
IMPRESSION: severe OSA
INTERPRETATION: AHI 70.5 and O2 desatted to 73%, loud snoring all night – c/w severe peripheral OSA

SECOND SLEEP STUDY 10/31/13:

SLEEP ARCHITECTURE: The total recording time of the titration polysomnogram was 410.9 minutes. The total sleep time was 378.0 minutes. The patient spent 2.5% of total sleep time in N1, 77.8% in N2, 15.5% in N3, and 4.2% in REM. Sleep latency was 2.2 minutes. REM latency was 351.5 minutes minutes. Sleep Efficiency was 92.0%. The total wake time after sleep onset was 30.7 minutes.
AROUSAL EVENTS: Respiratory arousal index of 64.8 with PLM arousal index of 49.2 and spontaneous arousal index of 3.5.
CARDIAC SUMMARY: The patient’s ECG exhibited a normal sinus rhythm during the titration study.
LIMB ACTIVITY: The PLM index was 145.2 and the PLM arousal index was 49.2.
TITRATION IMPRESSION: successful resolution OSA on cpap
INTERPRETATION: 10cm was optimal with c flex 3, and resolved all apneas and improved O2 sats; snoring was resolved as well

star444 wrote:Without CPAP: The PLM index was 21.7 and the PLM arousal index was 0.5 - With CPAP: The PLM index was 145.2 and the PLM arousal index was 49.2

Wow, that's quite a marked difference! It looks like you've got a pretty good handle on how to proceed with all this. I agree that getting your OSA treatment optimized is top of the list. While that is happening, I'd suggest you begin investigation into things that can contribute to PLMD. (There's often an overlap with what is applicable to RLS.) Some things to consider:
- On any meds that could cause this side effect? That could aggravate an existing problem?
- Any deficiencies? What is your ferritin level? It is recommended to keep it in the higher end of the normal range. Are your Vit D & Magnesium levels normal?
For some people addressing these things improves symptoms.

I can't speak much to the RLS part, my RLS is not my focus these days. It's not gone, but not ever present and tormenting like it once was. Is it from adding supplements in the areas I was diagnosed to have need? I tend to think so, unless it's the fringe benefit of treating my PLMD with the TENS - or maybe a combination of factors. Good luck finding a doctor to prescribe and guide you using the TENS for your PLMD. It's not mainstream treatment. Meds are. I had the TENS prescribed for my back pain, and discovered its usefulness for my legs out of sheer desperation after having to go off the meds. The good thing is you don't need a prescription to buy a TENS and the supplies if you're willing to pay for it yourself. Some other TENS users on here shared their knowledge with me when I first set out to discover if it could indeed help my PLMD. Don't know which side effects you had on the Mirapex, but if it was related to augmentation, it is thought those with low ferritin are more prone to developing those problems. Maybe if yours is low, getting it up might make the meds an option for you. I've been off the meds for my legs for at least 3 years now, and am satisfied with using the TENS, although I can't help but wonder if I've really optimized its potential. Would love to be under a professional's guidance to see what more it could offer, but just glad to have the degree of relief I have had.

While you're sorting through things, some report warm foot soaks before bedtime to be helpful. Hey, can't hurt. Would like to hear how things progress for you.

kteague wrote: Good luck finding a doctor to prescribe and guide you using the TENS for your PLMD. It's not mainstream treatment. Meds are. I had the TENS prescribed for my back pain, and discovered its usefulness for my legs out of sheer desperation after having to go off the meds. The good thing is you don't need a prescription to buy a TENS and the supplies if you're willing to pay for it yourself. Some other TENS users on here shared their knowledge with me when I first set out to discover if it could indeed help my PLMD. Don't know which side effects you had on the Mirapex, but if it was related to augmentation, it is thought those with low ferritin are more prone to developing those problems. Maybe if yours is low, getting it up might make the meds an option for you. I've been off the meds for my legs for at least 3 years now, and am satisfied with using the TENS, although I can't help but wonder if I've really optimized its potential. Would love to be under a professional's guidance to see what more it could offer, but just glad to have the degree of relief I have had.

Thanks for taking the time to read over my post and then provide feedback and encouragement! I've read many of your posts and value your input.

My Sleep Doctor is a Neurologist who also specializes in Pain Medicine so... *maybe* I'll have luck convincing him to prescribe and guide me using the TENS for my PLMD. Even if he isn't comfortable with prescribing it and making it an official part of my treatment plan (since it isn't mainstream), I'll go ahead an buy a TENS unit since a prescription isn't required. I haven't been with this doctor for long but from what I have seen so far, I think he is going to be very good to work with.

Another piece of the puzzle that may work out well is that my Sleep Doctor's wife is a Family Doctor and she practices in the same office. My co-worker goes to her and said she has never had a doctor be so thorough. I turned in paperwork last week requesting my records be sent to her so I can switch my primary care to her. How convenient that would be to have my Sleep Doctor and my Primary Care Doctor in the same location!

A neurologist who specializes in pain mgmt - sounds like if anybody could appreciate the possibilities of using TENS, they would be the one. I am hopeful this doctor will humor you and actually pursue this as a treatment. It would be nice if you can avoid the experiment phase I endured. I tried placing the electrodes in varying positions all down my legs and it really antagonized my RLS. In the end I settled on using it exactly as it was prescribed for my lower back pain. Good luck with all this and please do update us as things progress.

I started my therapy a few weeks before you. I have severe RLS, but my OSA was rated as mild (AHI 10). Therefore, my primary focus has been on learning about the triggers and controls for my RLS while adjusting to aPAP therapy.

There is another bulletin board like this one that deals exclusively with RLS. You can find it at http://bb.rls.org/

On that bulletin board, you will find a number of discussion threads that talk about TENS as well as other non-drug means of coping with the symptoms. There are also threads that discuss the various pro's and con's of the currently available drug treatments, including Miraplex, gabapentin and the various opiates.

Rustsmith wrote:There is another bulletin board like this one that deals exclusively with RLS. You can find it at http://bb.rls.org/

Thanks for reminding me of that board. I was a member once but when they retooled their site I couldn't get in for a while and forgot to revisit it. I see I've got some reading to catch up on. BTW, posts over there by sleepdancer are by me.

Rustsmith wrote:I started my therapy a few weeks before you. I have severe RLS, but my OSA was rated as mild (AHI 10). Therefore, my primary focus has been on learning about the triggers and controls for my RLS while adjusting to aPAP therapy.

There is another bulletin board like this one that deals exclusively with RLS. You can find it at http://bb.rls.org/

On that bulletin board, you will find a number of discussion threads that talk about TENS as well as other non-drug means of coping with the symptoms. There are also threads that discuss the various pro's and con's of the currently available drug treatments, including Miraplex, gabapentin and the various opiates.

Thank you for that information! I will definitely check the site out.

kteague wrote:

Rustsmith wrote:There is another bulletin board like this one that deals exclusively with RLS. You can find it at http://bb.rls.org/

Thanks for reminding me of that board. I was a member once but when they retooled their site I couldn't get in for a while and forgot to revisit it. I see I've got some reading to catch up on. BTW, posts over there by sleepdancer are by me.

I have been trying desperately to learn as much as I can about RLS, PLMD, and OSA. While browsing various sites today, I feel certain that I came upon a post made by you a few years ago on another site. The story matched yours to a tee, and I believe the username was "kateyes" or something like that.

I think I will probably just bookmark the RLS site shared by Rustsmith and save it until tomorrow. There is just so much information out there, with no clear "black & white answers", that it is very easy to get overwhelmed. I fear I am already in "sensory overload" tonight and need to take a step back.

Good night, all.

As I understand it about a TENS, it is that it does nothing to reduce pain like acupuncture for example or medications that are supposed to work chemically, the TENS unit just causes another pain in another part of the body and doing so it shifts the brain "thinking" about the original pain. So it is sort of attention diversion.

What's strange about buying a TENS is that if I buy it and pay let's say at Walgreens then the price would be below $70. But if I go to a a physical therapy group (as I did) then they made me sign that the TENS unit is priced at around $700 and if I take it home and lose it then I might be liable for paying this much higher price, or my insurance would pay this higher price. I returned it the next day without ever using it.

[quote="star444" ]While browsing various sites today, I feel certain that I came upon a post made by you a few years ago on another site. The story matched yours to a tee, and I believe the username was "kateyes" or something like that...[/quote]

Yep that was me too. Must have been Web MD. Haven't been back there in years. They changed their format and I didn't meld well with the changes.