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Restless Legs Syndrome

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Hot Flushes & RLS

Nightwalker6 profile image
22 Replies

Hot flushes and RLS

I have been having terrible trouble with hot flushes and sweats at night. It seems to trigger RLS and insomnia. It wakes me up and stops me from falling asleep. I have also been having severe anxiety.

I went to a specialist in menopause symptoms & they won’t put me on HRT at my age. She initially suggested a small dose of an SSRI but I can’t remember which one. I know many SSRIs trigger RLS. She then suggested clonidine hydrochloride.

Wondering what people’s experience of hot flushes exacerbating RLS and/or insomnia and how they manage them.

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Nightwalker6
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SueJohnson profile image
SueJohnson

Clonidine hydrochloride treats high blood pressure - do you have that? All SSRI antidepressants cause worsening RLS symptoms in many people. HRTs contain estrogen which also causes worsening RS symptoms. If you need an antidepressant ask for Wellbutrin or trazodone.

Nightwalker6 profile image
Nightwalker6 in reply toSueJohnson

I do have high blood pressure for which I take Penindopril/arindapimide

SueJohnson profile image
SueJohnson in reply toNightwalker6

Then I wouldn't think you need a 2nd drug for it, but your doctor knows best.

in reply toSueJohnson

Where are you getting the information that estrogen makes RLS worse? I would love to see what it says but could find very little on the internet. That has certainly not been true in my case with a compounded estriol cream. It actually helps and I haven't seen the research about this and have seen just the opposite. And it does help with hot flashes. And the research says that oral iron will only help if your ferritin is below about 75. I am not saying it would not help you because each of us has a unique chemical structure. I was on oral iron and it didn't help at all to raise my levels after about 60 (hurt my stomach too) and an infusion is the only thing that worked to get me up to 200 which did relieve my RLS (and my tremor disappeared).

SueJohnson profile image
SueJohnson in reply to

ncbi.nlm.nih.gov/pmc/articl... reuters.com/article/us-estr...

jhu.pure.elsevier.com/en/pu... among many others.

in reply toSueJohnson

I guess those are with the natural estradiol that pregnant women have but for estriol cream for post menopausal women, have you seen anything that would indicate RLS increase? I just really want to know if there is a relationship for post menopause HRT of any sort. I would stop taking it if that is so but I haven't seen a difference for me so far.

SueJohnson profile image
SueJohnson in reply to

What matters is how it affects you.

lauraflora profile image
lauraflora

I have been using bioidentical progesterone cream and bioidentical estrogen cream, for quite some time now. Several years. I used to get about 15 to 20 hot flashes, as well as night sweats. Now I get maybe 1 or 2 very mild ones. I get these creams on Amazon. I suggest you look them up, the concept of bioidentical to what our bodies produce, rather than the trademarked, prescribed ones. And read reviews by real people who use them. Healthfood stores carry them also.

I hijacked your last post and you ended up being ignored. So I’ll add my two cents here. Believe it or not your ovaries will continue to produce small amounts of hormones until age 80 or 82. That small amount is enough to lower your risk of heart disease and colon cancer…if that’s any consolation. Generally the flushes only last a few minutes and the RLS should fade with them. Mother Nature, you can’t beat her. I know it’s easier said than done but try to imagine those almond sized ovaries working overtime to keep you healthy and rejoice as the night sweat passes.

Anxiety is a tough one. It’s a must. Life would be dismally colorless without it or at least my life. Plus there’s only one road that leads to you becoming a warrior…overcoming these horrendous physical and emotional traumas. When you feel the anxiety arise try (I know it may sound impossible) to take a step back and look at it from a distance. Native Americans believe that things like this are actually your spirit guide in disguise urging you to grow, change direction, or at the very least look around and see what you might be missing. The problem with doing this is that it seems once you acknowledge that the anxiety attack is your spirit guide bringing you some new lesson he vanishes. He’ll return and you’ll greet him but the visits will become fewer and farther between.

Lastly, the best treatment for RLS in the universe is 25 to 50mg of ferrous bisglycinate taken on an empty stomach about an hour before bed. It doesn’t matter if your ferritin is 7 or 700 it works. It works especially well if you combine it with a nightly fast from 8pm till breakfast. Night after night after night ….

Nightwalker6 profile image
Nightwalker6 in reply to

Thanks for your response. My sleep doctor advised against taking iron supplements.I had an infusion a couple of months ago.

Iron went from 30 to 300. No difference to symptoms.

My brain still hasn’t got enough iron in it.

I will ask my Dr re the ferrous bisglycinate.

Do you take anything besides this to manage your symptoms?

in reply toNightwalker6

Excuse me while I scream 🤬. I hate those infusions. I wish they would stop being recommended on here. You know any other condition that presents only/mostly at night? We with RLS have a lousy D2/D3 receptors. Genetically so. For a good portion of our lives we may not even know we have these lousy receptors because even though others have much more robust ones ours are good enough. Then we get older and so do our receptors. The RLS brain has trouble storing iron but it’s ok because by day there’s enough free floating iron in our blood such that it doesn’t matter. Iron is like the glue/grease that keeps our dopamine transport system chugging along. At night Mother Nature doesn’t want so much of that heavy metal iron in our blood stream so a lot of it gets whisked away and we get RLS. By taking a highly bioavailable form of iron before bed we’re giving our brains some much needed iron. No I do not take anything besides iron which has never failed me in over 10 years. Ferrous sulfate does not work for me - not bioavailable enough.

Standing and walking relieves RLS because our brains release dopamine to steady us when we stand and coordinate movement when we walk.

You should also avoid HRT, melatonin, statins, antidepressants, antihistamines and certain antacids. They make the symptoms of RLS worse then they have to be but they do not make the RLS itself aka lousy dopamine receptors worse - the DAs make the receptors worse.

If the iron is going to work for you it should do so that very first night. You should not get any RLS for at least six hours after the iron. A good test is to take the iron when you actually have the RLS. The iron should make it fizzle out within one hour. I recommend you tap on my name and read my conversation with Sher78. Good luck.

Nightwalker6 profile image
Nightwalker6 in reply to

I have ordered the ferrous bisglycinate.I normally eat well before 8 and usually only drink herbal tea before bed. So no problem fasting after 8. If this works why hasn’t there been more research on it?

Will let you know how I go.

SueJohnson profile image
SueJohnson in reply toNightwalker6

By all means try it out. But if you find it doesn't help, then with a ferritin level of 300 you don't need to take iron.

in reply toNightwalker6

Any luck?

Nightwalker6 profile image
Nightwalker6 in reply to

The iron didn’t make any difference. My symptoms have diminished considerably though. I think it’s my body recovering from 10 years on a DA. Taking Magnesium & Prodeine in addition to exercise every day.

in reply toNightwalker6

Diminished considerably from end of your rope is no small feat. Congrats. Keep doing what you’re doing.

in reply toNightwalker6

Here is our conversation:

Sher78 profile imageSher78

4 days ago

Just to add my little bit on this thread. I have SLE, APS (for which I am lifelong warfarin), hEDS, MCTD, Raynaud's & Sjogren's (to name but a few). I also have RLS. Over the years I have tried many different things for my RLS (apart from medication) such as elimination diets etc, lots of exercise/no exercise, supplements, tonic water, massage etc and nothing helped. I can't retain iron very well (due to severe bowel surgery years ago) and although I don't often get anaemic (thankfully, because when I do, I do it in style!) and my iron is always low. Usually, I get put on Ferrous Sulphate which does bring my iron up a little but has never made a difference to anything else (still feel like an exhausted pigeon & still have the restless legs). Late last year, I decided it was time to try and sort out the RLS as it was getting to the stage where it was also affecting my arms and coming on late afternoon. I was prescribed Ropinirole but I was also prescribed iron at a different appointment for my iron levels dropping dangerously low again. This time I was prescribed Ferrous Fumarate, 3 times a day. The first day of taking them, for the first night in God knows how many years, I didn't get restless legs. I didn't think anything of it to begin with, I just simply thought it was coincidence. By about day 4 of taking the iron, I picked up my ropinirole but was reluctant to start it (dodgy for me to take it due to taking antipsychotics & antidepressants, coupled with the fact that the more I read about it and augmentation, the more it put me off) and seeing as my RLS SEEMED to have disappeared for the minute, I put them away in the drawer. And there they have stayed. I am now on 2 Ferrous Fumarate tablets a day (one in the AM and one about an hour before bed) and I have not had a single episode of RLS in the 6+ months I've been taking them. I have forgotten to take my evening iron a few times and have found that my legs feel a little 'twitchy' in the middle of the night, but that's it (so I make sure now I do not forget that tablet!). My iron levels are monitored monthly (still shockingly low). It may very well be coincidence but it has been like a magic cure for me.

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Esconday profile imageEscondaySher78

4 days ago

Shockingly great news. Keep up the good work and spreading your story around.

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Esconday profile imageEscondaySher78

1 day ago

Stored iron aka Ferritin has little to nothing to do with RLS, except it might provide insight into how much iron is free-floating in your blood. Your low stores prompted you to take oral iron which means more free floating iron in your blood that can readily be sucked up by your brain. And because your iron stores are shockingly low you actually have the privilege of being able to take iron in the morning and have it absorbed well and then take a second pill in the evening and have that one absorbed equally as well. If your stores were in the normal range then after you take that first pill your body would release more of a substance called hepcidin that would then block the full absorption of that second pill. And it’s that second pill that you really really need to be fully absorbed to stop the RLS. If ever it seems the iron is failing you I suggest you drop the morning pill and take two in the evening instead.

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Sher78 profile imageSher78Esconday

1 day ago

Completely understand. I think in all honesty, BECAUSE I have problems retaining iron, I will be kept on it for a while & obviously if they drop me to one a day, I shall just take my evening dose. I also had a good chat with one of the Doctors about the link between iron & RLS & he actually seemed to know about it anyway (unfortunately he is not my regular Doctor) so hopefully that has been put on my notes now. If it DOES come to it where my iron levels reach a point where they are 'suitable', I will ask to stay on a maintenance dose for my RLS. I have some Gentle Iron just in case they refuse but at the moment, all's good :)

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Esconday profile imageEscondaySher78

1 day ago

Right, exactly. You can get your stores up to 999 and because you are predisposed to RLS you will most likely still need to take that nightly iron. The RLS scientific community would disagree with me, totally, and be completely dismissive of your experience with the iron. They would tell you that you have had a 6 month long placebo effect. The thing is I have had the same experience for over 10 years now. And there are numerous other people on here with the same experience as you and I.

Nightwalker6 profile image
Nightwalker6 in reply to

Hi again Hidden. Just wondering if there are any problems associated with excess iron? Any side effects from the iron you take.

kygigi3 profile image
kygigi3

I wish I could try hrt but I'm 48 with heart failure so I don't think I can, but my doc put me on effexor for those severe heat intolerance. That has worked great. Those were horrific for me. My hair and makeup would be ruined In 3 mins and I would feel like an old sweaty pig.. Mine were day and night!

SueJohnson profile image
SueJohnson in reply tokygigi3

You are lucky effexor is a SNRI antidepressant and exacerbates RLS symptoms in many people.

lauraflora profile image
lauraflora

A bit more info. I have used both Smoky Mountain and Source Naturals progesterone creams. Actually, rubbing some on when and where RLS starts up will stop it in about 5 minutes for the rest of the night. My experience as well as reading about this.I am 71 and have been using first bioidentical progesterone for many years. Recently added bio-est cream (which I do not see on your Amazon,) as I am older now and one's body produces less and less.

Life-flo is another good brand to look for. I would not be without them. If I stop, the hot flashes, etc. come back.. Distrupts everything, makes sleep difficult. Feel like an It rather than a Female.

Look them up. Give it a try.

TeddiJ profile image
TeddiJ

Hi. You are not even close to being too old for bioidentical hormones! You do not need to suffer like this and I seriously question this particular hormone specialist.

I am on bioidenticals and can relate to your question completely, so I felt I must reply.

It is very important to have the right hormonal balance and it is a delicate dance. RLS on top of an imbalance makes nights sheer misery.

Certain drugs and interactions can cause brutal night sweats and hot flushes, too, as do opioids for RLS (I sadly know all this first-hand).

Many on here say their RLS is worse when using hormones and Dr. B says hormones have no impact. I just saw him in person and it was my FIRST question.

I am confused, for sure. Beyond confused.

If I were you, I would at least order a hormone saliva test online-the one where you give saliva 4 times in one day (not 3). You get the test in the mail, fill out the symptoms, postage is paid to send it back, and you soon get a very thorough email report telling you exactly what is up with your hormones. (There are tests for men, too.)

You can then take that to a NEW doctor-one who is truly on top of female hormones and uses saliva testing.

I do hope you find this helpful and that you feel better very soon...

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