New ASV user with PLMD

[amills3]

I am a new ASV user (about 4 weeks in) with a diagnosis of complex sleep apnea. My AHI numbers have never been very high, but the CPAP & biPAP caused central apneas in the lab, so I was put on ASV. I have been working on trying different masks and getting through aerophagia, skin irritation, etc.

My numbers look really good, as per SleepyHead. I am not posting the numbers here, because I am more concerned about PLMD. In the lab, this was a significant problem and I was diagnosed with RLS & PLMD. I had my serum ferritin checked and the level is 20 ng/mL. I know this is low, but I am not anemic, just low ferritin and low iron saturation. I started taking iron supplements before I started with the machine and it's been about 6 weeks and I re-checked and my ferritin is still at 20.

I am significantly more tired with the ASV machine and I am wondering if it may be because of the PLMD. I wonder if anyone else has this issue and is having a difficult time getting their ferritin up? My sleep doc says take iron to increase ferritin. My regular doctor says don't take too much iron because it can cause an inflammatory response. I wonder if anyone may be able to help.

[kteague]

I am a new ASV user (about 4 weeks in) with a diagnosis of complex sleep apnea. My AHI numbers have never been very high, but the CPAP & biPAP caused central apneas in the lab, so I was put on ASV... I am more concerned about PLMD. In the lab, this was a significant problem and I was diagnosed with RLS & PLMD. I had my serum ferritin checked and the level is 20 ng/mL. I know this is low, but I am not anemic, just low ferritin and low iron saturation. I started taking iron supplements before I started with the machine and it's been about 6 weeks and I re-checked and my ferritin is still at 20... I am significantly more tired with the ASV machine and I am wondering if it may be because of the PLMD.

Did your diagnostic study also show centrals or just during titration? Just asking because some meds can make one prone to centrals, and can also cause or worsen limb movements. Are you on any meds that might be suspect? If so, that could change your path forward a bit.

It is not unusual for PLMD symptoms to worsen with effective sleep apnea treatment. That's because once the breathing irregularities are resolved, one sleeps better, thus giving the limb movements more opportunity to manifest. When sleep apnea and periodic limb movements coexist, they can mask each other. Effectively treating either one can allow you to get a more realistic picture of the true severity of the other.

I am not qualified to give specific iron advice. I can just tell you that some of the people who deal in RLS and PLMD all the time say people with these disorders need to maintain a higher ferritin level than what is considered ok for others, and recommend around 100. If you have concerns about whether to take iron and how much, maybe you could do a consult with a hematologist. I strongly suggest you resolve this BEFORE considering taking a dopamine agonist for your movements. It is thought that those with a higher ferritin level are less likely to develop side effects and/or augmentation common to that type of med. Having experienced that, I am all for doing whatever is necessary to avoid that misery.

How are your magnesium and vitamin D levels?

[amills3]

Did your diagnostic study also show centrals or just during titration? Just asking because some meds can make one prone to centrals, and can also cause or worsen limb movements. Are you on any meds that might be suspect? If so, that could change your path forward a bit.

I am not qualified to give specific iron advice. I can just tell you that some of the people who deal in RLS and PLMD all the time say people with these disorders need to maintain a higher ferritin level than what is considered ok for others, and recommend around 100. If you have concerns about whether to take iron and how much, maybe you could do a consult with a hematologist. I strongly suggest you resolve this BEFORE considering taking a dopamine agonist for your movements. It is thought that those with a higher ferritin level are less likely to develop side effects and/or augmentation common to that type of med. Having experienced that, I am all for doing whatever is necessary to avoid that misery.

How are your magnesium and vitamin D levels?

My titration study showed centrals, not the diagnostic. And the only medication I take is Ambien. Could that make limb movements worse?

Good idea to consult with a hematologist.

My magnesium and vitamin D are good. I supplement with those, so I know those are not a problem.

Thank you so much for your help.

[Pugsy]

I doubt that the Ambien is any factor in PLMD being worse. It's not known for that sort of side effect but you might try one night without the Ambien and see if the PLMD is better, worse or unchanged.

[kteague]

Since you are not on any meds known to cause these problems, that at least eliminates one step in the process of discovery. I would pursue the iron subject. Not sure if this will help you, but along with some supplementation to give my body its best chance, I have found using a TENS Unit sufficient to control my legs enough to get decent sleep. Didn't mention that at first because I don't think it is as effective when the movements are secondary to meds.

[brookfox]

Serum ferritin below 50ng/mL is well known to contribute to RLS/PLMD. Are you taking your iron supplement with a good dose of vitamin C?

If you can't get your ferritin up with an oral iron supplement then ask your doctor for IV iron infusions. That is what my sleep doc recommends.

[amills3]

Since you are not on any meds known to cause these problems, that at least eliminates one step in the process of discovery. I would pursue the iron subject. Not sure if this will help you, but along with some supplementation to give my body its best chance, I have found using a TENS Unit sufficient to control my legs enough to get decent sleep. Didn't mention that at first because I don't think it is as effective when the movements are secondary to meds.

I have heard about using a TENS unit for PMLD, but I don't have many symptoms, other than limb movements during sleep. I notice some tingling in my feet in the evening but it doesn't bother me and doesn't interfere with falling asleep. Do you still think a TENS unit would help?

Thanks for your response.

[amills3]

Serum ferritin below 50ng/mL is well known to contribute to RLS/PLMD. Are you taking your iron supplement with a good dose of vitamin C?

If you can't get your ferritin up with an oral iron supplement then ask your doctor for IV iron infusions. That is what my sleep doc recommends.

Thanks for your thoughts. My regular doc (who is a functional practitioner) thinks a ferritin level of 20 is "normal" and thinks the iron infusions will make things worse. I have been unsuccessful at finding someone who will do this for an iron level that is normal by conventional standards. If you have any advice for a type of doctor that may be willing to work with this issue, I would appreciate it.

[brookfox]

Serum ferritin below 50ng/mL is well known to contribute to RLS/PLMD. Are you taking your iron supplement with a good dose of vitamin C?

If you can't get your ferritin up with an oral iron supplement then ask your doctor for IV iron infusions. That is what my sleep doc recommends.

Thanks for your thoughts. My regular doc (who is a functional practitioner) thinks a ferritin level of 20 is "normal" and thinks the iron infusions will make things worse. I have been unsuccessful at finding someone who will do this for an iron level that is normal by conventional standards. If you have any advice for a type of doctor that may be willing to work with this issue, I would appreciate it.

I think it would have to be a sleep medicine doc who is knows the research that has been done on RLS/PLMD and ferritin levels. My current sleep doc, who I've only been seeing for 7 months, put right in my sleep study results that if my ferritin came back under 50 and I did not respond to oral supplements that he would recommend IV iron. In the end my ferritin came back at 95 so I didn't need supplementation, so my severe PLMD is due to other causes.

[amills3]

Serum ferritin below 50ng/mL is well known to contribute to RLS/PLMD. Are you taking your iron supplement with a good dose of vitamin C?

If you can't get your ferritin up with an oral iron supplement then ask your doctor for IV iron infusions. That is what my sleep doc recommends.

Thanks for your thoughts. My regular doc (who is a functional practitioner) thinks a ferritin level of 20 is "normal" and thinks the iron infusions will make things worse. I have been unsuccessful at finding someone who will do this for an iron level that is normal by conventional standards. If you have any advice for a type of doctor that may be willing to work with this issue, I would appreciate it.

I think it would have to be a sleep medicine doc who is knows the research that has been done on RLS/PLMD and ferritin levels. My current sleep doc, who I've only been seeing for 7 months, put right in my sleep study results that if my ferritin came back under 50 and I did not respond to oral supplements that he would recommend IV iron. In the end my ferritin came back at 95 so I didn't need supplementation, so my severe PLMD is due to other causes.

I see, thanks. I see my sleep doc in 2 weeks and I will find out if he can make that recommendation.

[kteague]

My regular doc (who is a functional practitioner) thinks a ferritin level of 20 is "normal" and thinks the iron infusions will make things worse.

Your doctor is right for most circumstances. Those with movement disorders are outliers, and the medical community has not universally accepted iron infusions for the sole reason of RLS or PLMD. Iron infusions are seen a resolution to frank deficiencies, not to boost someone to higher within the normal range. Iron supplementation and infusions are not without possible side effects, so I understand their hesitation. A patient who experienced side effects could hold them legally liable if the treatment wasn't solidly substantiated. It could be tricky. I would think a specialist would be needed to deal with this.

I see some parallels to hypothryoid treatment. If one fell within the normal range, the doctor didn't order treatment. Over time it has become more acceptable to give treatment that boosts the results to the higher end of the normal range. I agree with that. If normal for a person was in the high end of the range, but they had dropped to the lower end, that person merits treatment to get them back to their personal normal.

I have heard about using a TENS unit for PMLD, but I don't have many symptoms, other than limb movements during sleep. I notice some tingling in my feet in the evening but it doesn't bother me and doesn't interfere with falling asleep. Do you still think a TENS unit would help?

I use the TENS specifically for the movements during sleep. I use it for at least a half hour before sleep as prescribed for lower back pain, with the intent to interrupt the signals between the legs and the brain. Some meds can help to sleep through the movements, but not stop them. TENS use greatly reduces or stops the movements for me.

[brookfox]

Here is the website for Johns Hopkins Sleep medicine dept where they discuss iron infusions to treat RLS: https://www.hopkinsmedicine.org/neurolo ... tment.html

Be sure to watch this embedded video from that website where the doctor talks about using IV iron is the patient's ferriting level is below 100. https://www.youtube.com/watch?time_cont ... -k24CDlW5s

Here is the referenced study: https://www.sciencedirect.com/science/a ... 5716301125

In the study the patients in the IV iron group had and average starting ferritin level before the iron infusion of 53.5 ng/mL

[amills3]

My regular doc (who is a functional practitioner) thinks a ferritin level of 20 is "normal" and thinks the iron infusions will make things worse.

I use the TENS specifically for the movements during sleep. I use it for at least a half hour before sleep as prescribed for lower back pain, with the intent to interrupt the signals between the legs and the brain. Some meds can help to sleep through the movements, but not stop them. TENS use greatly reduces or stops the movements for me.

Thanks. This is really interesting. What type of TENS unit do you have? I will look into this as an option.

[amills3]

Here is the website for Johns Hopkins Sleep medicine dept where they discuss iron infusions to treat RLS: https://www.hopkinsmedicine.org/neurolo ... tment.html

Be sure to watch this embedded video from that website where the doctor talks about using IV iron is the patient's ferriting level is below 100. https://www.youtube.com/watch?time_cont ... -k24CDlW5s

Here is the referenced study: https://www.sciencedirect.com/science/a ... 5716301125

In the study the patients in the IV iron group had and average starting ferritin level before the iron infusion of 53.5 ng/mL

Thank you- this is really helpful. I actually live relatively close to Hopkins, so it seems like that would be the best place to go. I really appreciate you passing this info along.

[kteague]

My regular doc (who is a functional practitioner) thinks a ferritin level of 20 is "normal" and thinks the iron infusions will make things worse.

I use the TENS specifically for the movements during sleep. I use it for at least a half hour before sleep as prescribed for lower back pain, with the intent to interrupt the signals between the legs and the brain. Some meds can help to sleep through the movements, but not stop them. TENS use greatly reduces or stops the movements for me.

Thanks. This is really interesting. What type of TENS unit do you have? I will look into this as an option.

I couldn't recommend one. Over the past 8 years I've had 3, all different brands, all equally effective. Basic models worked fine for me - no need for bells and whistles.