Restless Legs Syndrome - sudden onset

[BlueSky72]

Blue Sky, I'm following this again because I might learn more about this beastly condition. Mine got worse when my Dr upped the Mirapex. Kathy is the resident expert on PLM's. She is right about the Ferritin levels. Have you had them checked - you said you had plenty of iron. I'm curious, my ferretin plunged suddendly into 7. Could your level have dropped? Anything below 50 is bad news . The fatigue, daytime sleepiness, and nonrestorative sleep that hits a person with low ferretin is not a pretty sight. Be aware of these symptoms if yours reappears.
Non-restorative sleep is a great drain on the body and mind.

I posted on this thread in May, the RLS & PLM's weren't too bad at that time. By the time I reached mid June, I had 846 during a sleep study. Averaged 120 PLM's per hour.

On going depression is a struggle to treat. I know many people who have depression in various forms. The ones I know who appear to handle this mean conditon well do try to work with it as you plan. It is kinda' like RLS and PLM's they do what they want, when they want.

You sound like a practical person who is well aware of the aspects of your life. Congratulations on that, and I hope your depression becomes manageable. I wish the best for you.

Jan

Hi Jan, great to hear from you again, and thanks so much for your kind words. My ferritin is 150 - I am a carrier for Hemachromatosis (sp?) / Iron Overload, plus I am on a treatment for 'women's problems' that means I don't lose a lot of iron and most women do, if you get my drift. I get iron panels done regularly. I definitely experience all the symptoms of sleep deprivation, because my AHI won't budge below about 7-8 because I have centrals and CPAP doesn't treat them (doctors, are you listening? lol). I am about to start VPAP which I expect will help. I have plenty of quantity of sleep, just poor quality. My AHI is a fraction of what it was, but my symptoms are maybe 75% as bad as when my AHI was in the 40s. This is why I passionately pursue an AHI of <1 - unbelievers should maybe just humour me - if I get to <1 and still feel rotten, then they get the satisfaction of being right I guess.

But I digress. I hope your PLMs reduce! considerably! I like the natural remedies that are being talked about here, especially for people like me with a not so major RLS/PLM issue and who also react badly to yet more drugs. But if I had 120 PLMs an hour, I would be thinking drugs...

Thanks for your kind words re depression. I am sure mine arose as a result of sleep apnea. My moods were pretty good until I was 21, about the same time I started getting all the other sleep apnea signs and symptoms. At times in the last year I have cried because I felt that the brain damage could not be turned around. Part of that is the depression talking. But I think the science can be read in two ways - either the damage is reversible or not. I choose to hang on to hope and have faith that I can improve. I guess that shows I am not currently depressed... I have also learned, the hard way, that if you don't have hope, you haven't got anything. A major part of why the depression is becoming more manageable is the support I get from places like this. Just to know that others are out there struggling with the same things.

[SaltLakeJan]

BlueSky wrote:

I delinitely experience all the symptoms of sleep deprivation, because my AHI won't budge below about 7-8 because I have centrals and CPAP doesn't treat them (doctors, are you listening? lol). I am about to start VPAP which I expect will help. I have plenty of quality of sleep, just poor quality.

'Cause of the PLM's I've talked to the Sleep Doctor in depth about non-restorative sleep. I am fortunate, I am not depressed, but he asks me each time I speak with him. He said it is hard on every part of your body, and try to avoid pressures - without good quality sleep - it complicates everything you do, and further damages your sleep. I hope your body can relax more with the Vpap, get your stats in good shape. I hope it works quickly for you . . you deserve it.

BlueSky, I know you have had depression problems . . . but anyone who uses BlueSky as their username has to be an optomistic at heart.

My best o you . . . Jan

[BlueSky72]

Sheesh - I even did a typo didn't I *smacks forehead* - meant to say quantity of sleep of course - ie I sleep 8-10 hours a night, it's just that I feel like I've had about 4.

Jan, I'm impressed that your sleep doctor screens for depression every time - that's what I call best practice.

[kteague]

Hoser-Eh - Just a mention about the Sinemet... I was on it for a few years when my problems were first diagnosed over 10 years ago. When I saw a neurologist for other things, they switched me from Sinemet to Mirapex. Said the current thinking is to use dopamine agonists like Mirapex and Requip until they are no longer effective. A dopamine replacement such as Sinemet is best reserved for necessity. These meds are notorious for losing their effectiveness in anywhere from a few months to a few years. We'd be up that proverbial creek without a paddle (pill) if we were to develop Parkinson's and had already exhausted the usefulness of the primary drug for its treatment.

katcw - I also have hip pain. I have PLMD and turns out when my limb movements are under control, my hip pain is much less. The first sign I have that my meds aren't working is increased leg and lip pain. Another is nonrestful sleep. Keep in the back of your mind the possibility that limb movements could be contributing to your pain.

BlueSky72 - Our late forum member Snoredog (RIP) Said in a thread a long time ago that magnesium stearate was reported to be effective in treating RLS. There was also discussion of not just any magnesium, needs to be stearate. I had forgotten that discussion so hadn't tried it, but hope I will remember long enough to go buy some real soon. Worth a try.

Kathy

[BlueSky72]

Kathy, thanks for passing on that info about Magnesium Stearate. I was diagnosed with a slight Magnesium deficiency a few months ago. I haven't looked into the different types, but the supplement I take includes the Magnesiums Aspartate, Oratate and Amino Acid Chelate. I wish I knew more about chemistry, it is so intriguing.

[Hoser-Eh]

Hoser-Eh - Just a mention about the Sinemet... I was on it for a few years when my problems were first diagnosed over 10 years ago. When I saw a neurologist for other things, they switched me from Sinemet to Mirapex. Said the current thinking is to use dopamine agonists like Mirapex and Requip until they are no longer effective. A dopamine replacement such as Sinemet is best reserved for necessity. These meds are notorious for losing their effectiveness in anywhere from a few months to a few years. We'd be up that proverbial creek without a paddle (pill) if we were to develop Parkinson's and had already exhausted the usefulness of the primary drug for its treatment.

katcw - I also have hip pain. I have PLMD and turns out when my limb movements are under control, my hip pain is much less. The first sign I have that my meds aren't working is increased leg and lip pain. Another is nonrestful sleep. Keep in the back of your mind the possibility that limb movements could be contributing to your pain.

BlueSky72 - Our late forum member Snoredog (RIP) Said in a thread a long time ago that magnesium stearate was reported to be effective in treating RLS. There was also discussion of not just any magnesium, needs to be stearate. I had forgotten that discussion so hadn't tried it, but hope I will remember long enough to go buy some real soon. Worth a try.

Kathy

Thanks Kteague, I will talk to my GP about it then, as it was perscribed by sleep Dr. Not trying to hijack this post, but is Sinemet addictive? (seems to be) I don't like waking up dopy either.
I'm also on T3's constantly for back pain (herniated disk). sure the two mixed is making the dopiness worse. I have a lot of learning to do in these forums, as I had RLS since a child, but only formally diagnosed for Apnea, RLS & PLMD this spring. What a great day that was
Thanks for your help.

[kteague]

Hoser-Eh, I'm not sure about Sinemet being addictive, but all these meds warn against stopping abruptly. I did that once with Mirapex and wow did I ever regret ignoring the warning labels! It's too much of a shock to the brain to abruptly go from having dopamine to not having it. Even when I hear of people using these meds on a sometimey basis I cringe. Dopamine (among other things) helps the brain process signals regarding movement. Ever had a phone line with a short in it? May have static, gaps in conversation, distortion of sounds. But sometimes you jiggle the cord just right and it works fine - till the next time. Well, we don't want things erratically going haywire like that in our brains. If you have had RLS and PLMD since childhood, seems yours could be primary, and that type is when ferritin level is suspect more than when symptoms are secondary to nerve damage or other injury. As to what type of doctor, I would expect a neurologist to be most familiar with the inner workings of the brain.
Kathy

[katcw]

I, too was told that I had Mild RLS by my Sleep Dr. and was put on Requip which helpped a lot and I also am not mucg for taking too many Drugs so when the RLS got better I stopped the Requip and Now I take 2 oz's of Apple Cider Vinegar and a tsp on Honey at night before bed and have had No more problems with the RLS.

Ah -- another fan of Dr. Jarvis, the vermont country doctor! We used to drink "pickle juice" (honey, cider vinegar and water) regularly -- once you get used to it, it is really good and does wonders for one's health! Very refreshing when chilled. Haven't thought about that in years!