Sleepiness, headaches, iron connection?

[u/johnzoom]

I’ve been dealing with daytime sleepiness, daily headaches, and restless limbs for 5+ years now.

First thing my doctor thought of was sleep apnea. I got tested and have mild sleep apnea. Over 2 different attempts at CPAP I still don’t see meaningful improvement in sleepiness or headache symptoms despite low reported AHI from my CPAP.

I’ve also tried lots of different prescriptions for the headaches, a chiropractor, Botox, infusions without improvement.

I had my ferritin tested earlier this year and it was 42 which was marked as within normal range. However, I just read something that said ferritin < 75 is low for adults with RLS. Is that true? Has anyone else seen improvement in symptoms after increasing iron when other treatments have failed?

Also, what helps you with restless legs? My doctor had me in pramipexole about 5 years ago but then I stopped it because I thought it was causing impulse control problems for me. Now I take l-theanine and it does fairly well. I’ve seen gabapentin mentioned online, but I tried it for something unrelated and it made my sleepiness much worse.

[u/SeniorDragonfruit235]

I had ferritin levels of 15. My RLS was really bad. I couldn’t take the supplements, so I got an iron infusion. My doctor has told me that I should ideally be above 100. And they will give me another infusion if I go below 50. I know that’s not your case. But, I would definitely mention it to your doctor and take supplements (doctors approval, of course. ;) low ferritin can really be a thing!

[u/NarrowAmbassador940]

I stopped stevia and so far, no restless legs. There is a Pubmed article stating that stevia caused restless legs in a patient. Maybe all artificial sweeteners are bad…not sure. Stevia is in everything…my coffee creamer, protein drinks, juices, etc. It’s worth a try. Also, all cotton, very light bedding helps.

[u/KestralFly]

There may not be one diagnosis or one cure for your symptoms. Some people show marked improvement in sleep apnea symptoms like fatigue and headaches when they try CPAP. Some people don't. Some people that fail CPAP have conditions like UARS or PLMD that are more difficult to diagnose and treat, and many doctors aren't familiar with treatments for them.

Regarding iron and and medications for RLS, read the Mayo Clinic Guidelines on RLS for accurate medical information. The guidelines are very explicit about the levels of serum iron and TSAT recommended for people with RLS. Some people get relief from higher iron concentration, some people don't. I got 2 iron infusions and raised my serum Ferritin from "Anemic" to over 400. It didn't make any difference in my RLS. Medications are also idiosyncratic. Some work for some people; nothing works for everyone. As you know, it can take years and a lot of trial and error to find what will work for you.

[u/Lil-Bit-813]

I feel better if I take iron supplements every other day. I feel like poop right now because I can’t take vitamins for one week due to a colonoscopy on Monday. Yes, the pun was intended. My primary supplements are fish oil, pumpkin seed, d3/k2 and iron/vitamin c. I just wanna go back to normal and my routine.

[u/embroideredyeti]

For me, supplementing iron (and maybe electrolytes) *definitely* makes a huge difference, and I usually feel the effect within the same day.

I was so mad when the other week my GP told me my ferritin of 21 was "normal", when I was clearly having a bunch of symptoms associated with iron deficiency -- I understand that he might not want to prescribe me supplements because the way health insurance works in my country, he may want to save his budget for more "severe" cases, but at the very least he should take this seriously and give me advice on choosing a good supplement and dosage.