Hello. Just want to ask anyone of they’ve taken a “holiday” from taking their Horizant?
I’ve been on it for six months and it’s been ok. Still trying to up my ferritin ( which is turning into a very very slow process , even with all the wonderful advice here) I get mild breakthrough RLS some nights on the Horizant.
Wondering if it’s a good idea to take a wee break and then start again, just to maintain its effectiveness and maybe see if my slowly taking ferritin levels have had any effect on my RLS.
If anyone has done this can they recommend a sufficient “holiday” period, maybe like two weeks etc??
Many thanks. So very very grateful for you all.
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Redeyed
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Currently taking about 75mg of Iron Bisglycinate on an empty stomach with vitamin c before bed. Was taking it every night but now taking it every other night and to be honest it’s a slow process. I have a blood test every two months and one month there might be a rise in ferritin of 15 etc and the next test result only shows a rise of 2. Been like that for a year now. In the beginning my ferritin reading was 11, now it’s 55. But it is going up so my doc is happy to keep going this way.
Thank you for explanation. As you can probably tell from my other reply to you I thought the Horizant was more for non-RLS related insomnia than anything else. However that seems not to be the case - meaning it was prescribed for RLS and that it did help to resolve the RLS, at least for a while. You’ve been given great advice in that regard and I have nothing to add. Like you, my RLS worsened close to age 40, but it was because I started to take a small amount of melatonin and didn’t realize it aggravates RLS. One capsule of the ferrous bisglycinate obliterated it for the night. Once I stopped the melatonin my RLS went silent for a few years if I remember correctly, but slowly crept back. Back to you, I read you tried or are taking tryptophan and/or 5htp which I believe are precursors to melatonin and thus may aggravate RLS.
Hello LonePine. Here’s hoping the ferritin is responsible for my rls. I had mild bouts of rls during pregnancies due to anemia but it hit me like a truck last year after years of appalling periods. That was one example of when I should not have relied on supplements and gone straight for hormone treatment. Had I done that I might not be in this mess now. My sleeping is sort of back on track but there are bad days. I did try 5htp , tryptophan etc but nothing really worked long term so in the end I followed the Insomnia Clinic guidelines and managed to start sleeping again.My sleep is suffering again and the only culprit I can find is mild rls but the joke is I’ve slept through so much worse and these “fizzy legs” should not be keeping me awake. I do think it’s mental and I’m just constantly trying to find ways to balance the whole thing and just when I think I’m onto something it wobbles again.
Thanks for sharing, it really helps to have so many different experiences and fingers crossed the ferrous bisglycinate starts to work.
I’m on a different time zone so morning here for me. I took some last night with vitamin c. I don’t think it ever has an instant effect on my rls but the rls is still very mild compared to what it used to be.
You took some last night and had fizzy legs??? What the hey? You’re young, you have no inflammatory diseases, you never took the DAs and my theories are never wrong. This is most distressing. How’s your spine? Do you have a cold? Did you get a vaccine. Well my last piece of advice is to lower the 75mg to 25mg tomorrow night. Maybe it’s just too darn much. And actually if it’s not providing immediate relief why are you taking that much? Each capsule provides well over 100% of the RDA. Also every other night is best when trying to build up stores.
The fizzy legs are not mental. And of course you can’t sleep through it. If I fall asleep on the train I can sleep thru a wreck, but at night if there’s a sesame seed under a 100 mattresses I’m lying on top, it’s gonna keep me up.
You’re right. I’m well aware the fizzy legs are rls just there were times when I was much better at ignoring them. I slept well for months, before I started Horizant, with way worse than fizzy legs. I would get up, deal with the rls and then go back to sleep. Just there are times ( like now) when everything seems to be off balance and like you said, even the slightest thing will throw you off. It’s at times like these that I’m hyper sensitive to noises etc. Now I’m on Horizant and the rls is breaking through so I’m going to start looking for other external triggers.
Here’s the low down on tryptophan which is a precursor to melatonin. Like melatonin it raises levels of serotonin and is being looked at for its potential anti-depressive action. en.m.wikipedia.org/wiki/Try...
I'm not sure about the idea of taking a break to 'reset receptors' as it can take months for receptors to do that and you have to handle nightly RLS in the meantime.Was your RLS very severe and nightly before the Horizant?
It may be better to switch to an alternative med from a different class for a period and then go back.
However, Horizant should be reduced slowly- you should not stop cold turkey.
If you're getting mild breakthrough some nights, perhaps you could speak to your doctor. Maybe the occasional use of a small dose of codeine or tramadol would stop the breakthrough or, if it's just occasional and mild you could deal with it by yoga stretches, squats or a hot bath.
Thanks Joolsg, the breakthroughs while I’m on Horizant are mild so I’m happy to put up with them.Before I started on Horizant I was being woken every night with rls, now I will say that at the time I was sleeping badly and generally at a very low point when all this happened so my doctor just prescribed Horizant in the hopes of getting me some sleep.
I now realise the sleep and rls issues were separate a lot of the time and I’ve currently got some control over my sleep again. I’m also in a much better place mentally to be able to sit back and deal with this.
But thank you, I understand now that it’s not so easy just to quit Horizant but half of me is very scared of the Horizant becoming less effective or indeed of taking it if I don’t really need to take it. I guess I was just wondering if I should stop to see if I still need it or not.
Ferritin still very low at 55, but it was 11 when the rls kicked in first.
I may just cut the dose in half and see what happens. No harm in trying I guess.
Don't just cut the dose in half- Horizant, like all Alpha2Delta ligands, is a powerful drug and should be reduced very, very slowly. By all means reduce by, say 2-5% and observe the effects.In the meantime, as your ferritin is so low, take ferrous bisglycinate every other night. You may be one of the majority who can resolve RLS by raising above 100, preferably 250.
You will get unpleasant side effects if you "cut the dose in half". I also wanted to take a lower dose of pregabalin so I could increase it down the road if it became ineffective. Reduced by 1/4 of a capsule every week and kept a sleep diary. Also, I got serious about eliminating food/drink triggers (refined sugar, high glutamate foods, prepared foods). And third, finally after many years, I realized that I was not going to get "normal" or "perfect" sleep. I got my life back and my sleep is better. Better is all many of us get and I am glad to have it.
Wantokporo, thank you. I share that view that my sleep won’t ever be the “recommended amount” and I also won’t expire from lack of “recommended sleep” . Unfortunately in the throws of panic Google became my doctor and that definitely didn’t help my mental state. Having calmed down a lot I’m just hoping to, like yourself, wean off the Horizant and manage the rls myself until the ferrous biglycinate hopefully kicks in and if it doesn’t manage it myself without the hard meds. 🙏
I would be slow to get off the Horizant/ Gabapentin, unless you can specifically point to a correlation for you rls.Please check your food/ medication diary, if you are getting occasional attacks, as they are more likely to be the effect of triggers.
Food, drink or medicine?
Otherwise, all the advice you've been given is good.
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