Secondary RLS, Nexplanon, antidepress... - Restless Legs Syn...

Restless Legs Syndrome

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Secondary RLS, Nexplanon, antidepressants, and iron?


hi, i have another long winded post! :)

the questions are also repeated in the post!

questions (so you don’t have to read this whole thing if you don’t want ;)):

-if my RLS is secondary, would i benefit from using a dopamine agonist? and if i were to take an SSRI or something like buspar, would i be negatively impacted? i’ve been taking 2.5mg of buspar in the morning to help with my anxiety. i think it’s helping the general anxiety disorder, but i have panic disorder too and one of my symptoms of a panic attack is restlessness. i’m still dealing with restlessness, so my anxiety is still there :(

-what iron supplement should be taken to help RLS, and do i need to consult my doctor beforehand?

-anyone also have bad experiences with progesterone only birth control?

so i’m thinking my RLS is secondary, not primary. i’ve been on this birth control called Nexplanon for 3 months, going on 4 months. a month after i got it, i had this huge panic attack that wouldn’t respond to my lavender pills and CBD oil. the panic attack turned into a tic attack (never had one, never had tics like that, and they went away after 3-4 days), i had to go to the ER because by then i’d been awake for 30+ hours and my resting heart rate wasn’t dropping below 100 bpm (normal for me is 75-80 bpm). they didn’t do anything to help me with the tics, but they did do an EKG and a CT scan which both came back normal. i got back home, had another night-long panic attack. i called my doctor and made an appointment to have some blood taken for anything that could have been causing all of that. the lab work was for ACTH, B12, CBC, cortisol, FSH, PTH, LH, sed rate, TSH, vitamin D, ANA, magnesium, ferritin, TIBC, immunoglobulin, protein electrophoresis, estrogen, and prolactin. some things were slightly low or high, some things came back very low or high (my vitamin D was 16.1, my B12 was 1822, and my ferritin was 232).

full iron panel/TIBC:

RBC: 5.2 m/UL Ref: 3.7-5.5

HGB: 15.9 g/dl Ref: 11.8-16.8

Hematocrit: 48% Ref: 36-49

Serum Ferritin: 232 ng/ml Ref: 15-150

TIBC: 286 ug/dL Ref: 250-450

Iron Saturation: 15% Ref: 15-55

Serum Iron: 43 ug/dL Ref: 27-159

UIBC: 243 ug/dL Ref: 131-425

since my ferritin was high, i figured there was nothing more concerning iron that would help. i’m now realizing these blood tests were only after a month of having the birth control in. i’ve been bleeding non-stop since i got it. it’s either heavy or some spotting, but it’s there. i’m assuming this could’ve depleted the iron stores even more, and when these tests were done, a lot of it was only on the lower end of normal. so one of my questions is what iron supplement should be taken to help RLS, and do i need to consult my doctor beforehand? i would also like to mention that my symptoms seem to get worse when i’m on my period.

also, even if it’s not the iron depletion, it could be the Nexplanon itself. the list of side effects for this thing is HUGE. i wrote down every side effect/symptom i’ve been dealing with and it covered the entire front page and overflowed on to the back. one of the side effects is musculoskeletal aching and pain, which might explain the deep muscle aches and shooting pains i have. i did look to see if RLS was a side effect listed, but it wasn’t. however, i read the reviews and i think there were some people that experienced increased or new restlessness after having the birth control put in. also, in the clinical studies there were 2-3 people that had RLS while having this birth control.

my other question was if my RLS is secondary, would i benefit from using a dopamine agonist? and if i were to take an SSRI, would i be negatively impacted?

also, why are there SOOOO many possible causes of secondary RLS?? it’s insane! obviously no one can really answer, but i’m sure you guys get the frustration that comes with not knowing about what’s going on in your body. like, i also have a neurological condition called pseudotumor cerebri, or idiopathic intracranial hypertension depending on who you’re talking to. it’s also been linked to RLS before! great, i know. 😂

4 Replies

Thanks for all the detail. I'm afraid I can't answer all your questions.

I haven't found any connection between Nexplanon and restless legs specifically , but it does have some side effects which might explain some of your symtpoms.

I have no direct experience of a progesterone only contraceptive, but my first wife took one. She got pregnant again.

Buspar is not an antidepressant so may not exacerbate your RLS.

There are quite a few causes of secondary RLS as you say, however Idiopathic RLS sometimes can appear later, often after a pregnancy. So you can't say for sure.

It's not a good idea to take a dopamine agonist for any kind of RLS, Dopamine agonists are no longer recommended because fo the high risk of severe complications. If you want to resort to taking medication then it's better to take an alpha 2 delta ligand, that is, either pregabalin or gabapentin.

Your HbG, as you know, is normal. Your ferritin is quite high. Since your saturation is quite low it may be that your ferritin level is skewed. Inflammation can skew ferritin upwards, so it is possible you have some inflammation somewhere. This may be "sub-clinical" i.e. have no symptoms. There are various gastrointestinal conditions that cause inflammation.

You might wish to ask your doctor to investigate if you have any inflammation.

You could take an oral iron supplement if you wished, if you take a "gentle" iron, it may do little harm. Whether it will do any good is hard to say.

mmjxc in reply to Manerva

thank you for all of the answers! i was only asking about the dopamine agonists out of curiosity. i would only ever use it as a last resort, especially since i’m still young and from what i gather, after augmentation, you can go on an opiate or opioid to ease the withdrawal and worsening of symptoms and then... i guess you’re back to square one. i was also curious because primary RLS is from the dopamine receptors not working correctly, so theoretically the dopamine agonist wouldn’t have any effect on secondary RLS. same concept with the buspar because it acts on both dopamine and serotonin.

i did know about high ferritin meaning inflammation, and i found that extra weird because so does high B12, which i also have (had, it’s been 3 months so i have no clue). i’m thinking and maybe the inflammation could be my uterus, but i have no idea. i did just look it up, and there was an article that talked about how a high ferritin level can even mean iron deficiency in an obese or overweight person, which i am. so perhaps my iron isn’t high enough.

i’ve had so much testing done in the past 3 months and my endocrinologist, my primary doctor, and my neurologist are just all very puzzled. we did all of the tests for liver and kidney functions, had ultrasound of my thyroid, CT scan of my head, and an abdominal scan. all of that was normal! some of my thyroid tests were contradicting each other heavily, so we redid those and now i’m waiting for that to come back.

i just had another CBC and CMP done last week and my BUN and creatinine were both low, so i’ll go see if that could possibly have anything to do with this whole mess i’m dealing with.

i also really, really appreciate the fact that you answer a lot and are very active on here because you’re very informative! so big props to you and thank you so much! :)

Manerva in reply to mmjxc

I can see you have researched this.

As you probably realise, if you have secondary RLS, it's important to find the cause.

In both secondary as well as idiopathic RLS, iron is a factor and iron dysfunction is associated with dopamine function.

In any event, just to emphasise, it is never advisable to take a dopamine agonist.

Alpha 2 delta ligands calm RLS by desensitising nerves by lowering glutamate levels, so can be effective for secondary or idiopathic RLS.

Something wrong with your iron panel - % Saturation seems borderline low. Also for anxiety - this article (forum) seems compelling although I haven't tried any of the supplements he mentions.

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