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Restless Legs Syndrome

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Hrt advice

Rubynessie profile image
18 Replies

Good morning

I started Trazodone in April and unfortunately this too affects my restless legs . I’ve taken dopamine pills for years for my symptoms and feel this has contributed to me feeling depressed.

I’ve been clear of these awful pills for a long time and now take Gabapentin .

I’m considering trying HRT for a whole host of symptoms as I’m menopausal and stopping Trazodone . I’m not on the recommended dose as if I increase my restless legs gets worse even with 1800 Gabapentin.

I do remember HRT being listed as one thing that exasperates rls ?

Trazodone is supposed to be safe but not for me .

Would HRT be worth trying ?

Any advice welcome.

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Rubynessie profile image
Rubynessie
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18 Replies
SueJohnson profile image
SueJohnson

HRT is definitely on the No No list for RLS but everyone is different and reacts differently to medicine so there is no reason you can't try it and see.

For depression you might try Nortriptyline (Pamelor) which is safe for RLS.

Rubynessie profile image
Rubynessie in reply to SueJohnson

Thank you Sue .

ChrisColumbus profile image
ChrisColumbus

Unfortunately both HRT and most antidepressants exacerbate RLS for many - but not all. It's worth trying a short course to see how it affects you.

The antidepressant that is pretty much universally regarded as safe for RLS is bupropion, but this is no longer licensed for depression in the UK, only to help smoking cessation. It can be prescribed off licence for depression in some NHS areas but generally needs referral to a psychiatrist who will need to see that a couple of other antidepressants haven't been successful - and even then it's often refused.

Despite its reputation as being safe for RLS, there have been quite a number of other reports of trazodone making RLS worse. You seem to be susceptible to it.

As for the tricyclic nortriptyline - which besides depression can also help with neuropathic pain - there must have been positive reports that I've missed, but other members have reported that this made RLS worse too. You might be one who is OK with it.

On the other hand we've also seen a few positive reports around vortioxetine (Brintellix) including from a tiny Turkish study and from Prof Walker (although perhaps he just saw the Turkish report...). As this is an SSRI the reports seemed unlikely, but a couple of forum members have stated that it worked for them (although one of Prof Walker's patients said it didn't...)

What this all really shows is that we are all different!

SueJohnson profile image
SueJohnson in reply to ChrisColumbus

Dr Buchfuhrer says it is fairly safe. Https://rlshelp.org/rlscomp112.htm 09/2015 in patient letters

Https://pubmed.ncbi.nlm.nih.gov/31942156/ showed it improved RLS.

ChrisColumbus profile image
ChrisColumbus in reply to SueJohnson

In fact nortriptyline and vortioxetine both currently remain on RLS-UK's list of medications to avoid.

That Indian study on nortryptiline is positive, as was the tiny Turkish one on vortioxetine. Unfortunately, as per usual, feedback from forum members is that they both work for some but not others. 'Fairly safe' means that they're worth a try but there are no guarantees.

In all truth, is any antidepressant - apart from possibly bupropion - truly totally 'safe' for all RLS sufferers rather than 'fairly safe' for most? Neither of these appears to be, and evidently from reports here neither is trazodone.

Perhaps bupropion is truly 'safe'. It's certainly a great shame that we can so rarely get it prescribed in the UK.

(Whether all RLS sufferers, often on multiple meds and supplements and with possible dietary triggers, always correctly identify which factor is triggering or exacerbating their symptoms is perhaps open to question).

Lapsedrunner profile image
Lapsedrunner

When I started HRT I hoped that it might make a difference to my RLS. It didn’t make them any worse but it did improve my menopausal symptoms. As you are on Trazodone I assume you are experiencing anxiety/depression symptoms, which could well be hormone-related

If you still have a uterus and don’t have a progesterone-releasing coil fitted you’ll need to take micronised progesterone which some women find improves their sleep.

The good thing about HRT is that you can trial it and if it’s not helpful you can stop!

There are some great menopause resources from Newson Health (sorry, I couldn’t paste the link for some reason but google it and look at the menu)

Good luck!

Birdland profile image
Birdland

Trazodone made my RLS worse too. But for me, HRT was the worst trigger ever. It ended up really effecting my life because it caused me to start taking Ropinirole.

collageartist52 profile image
collageartist52

i am 72 and have been on the same dose of HRT since i was 50. I had abruptly stopped menstruating and my estrogen levels were very low. There are many good reasons to be on HRT despite the skewed studies that were done. (More on that topic another time.). My gynecologist suggested that taking my HRT at bedtime would be helpful to RLS and i have found that is true for me. I only switched to bedtime dose in the last 6 months but i noticed a difference.

Kiram profile image
Kiram

hi Trazadone also made my legs worse and I stopped my feet to get them 🤦🏼‍♀️,

I use HRT in gel form but instead of 2 pumps I have just the one pump and use 1st thing in the morning, I have not noticed any negative or positives when it comes to the RLS

I too have been on dopamine drugs which I augmented and think has contributed to my low moods , unfortunately gabapentin or pregablin didn’t help me , I take codeine prostate

Hope this helps

Marlayna67 profile image
Marlayna67

i’m still trying to figure it all out. I take oxycodone and Suboxone and HRT. If I don’t take HRT, I am sexually dysfunctional. I haven’t figured out the right amount of all of it to take and I’m still working on it. In my case, each drug is necessary.

samd5555 profile image
samd5555

Oestrogel, Mirena coil and micronised progestogen have not made my RLS any worse over the past 18 months. I now only have Oestrogel (4 pumps a day) since having a hysterectomy 6 months ago and again this has not made my RLS any worse. In fact since my surgery my RLS is better due to not being anaemic and ferritin levels being much improved.

10 weeks ago I introduced testosterone and I feel my RLS is slightly worse but still manageable with codeine. At present the benefits of the testosterone are outweighing the slightly increased RLS symptoms.

Like so many others have said, it's very individual so I would definitely give HRT a try. If you are menopausal it sounds like you may have been wrongly prescribed an anti-depressant like so many other women in the first place, so a good idea to come off of those maybe?

If you are in the UK then every GP practice should have a menopause speciality doctor to speak to about HRT.

Good luck and hope you get sorted.

Rubynessie profile image
Rubynessie in reply to samd5555

Thank you for your reply and advice .

I’ve had bloods done and waiting to try continuous , combined hrt .

I’m going to stop Trazodone . They do not agree with my legs !

WendyBea profile image
WendyBea

Hi, I'm curious how the 1800 of Gabapentin makes you feel. I was like a zombie so reduced it, but I'm taking it to help me get off Pramipexole, and I am down to half of that. Is that what you were referring to when you said you were on dopamine pills for years? If so, would you mind telling me how you got off them? Thanks.

Rubynessie profile image
Rubynessie in reply to WendyBea

Hi .

I take 600 , 3 x ,two hours apart . I gained a bit of weight at the start but feel this was fluid as it’s gone now . I started with pregabalin and like you I felt like a zombie . That’s why I switched to Gabapentin.

I can sometimes get by on 1200 but not very often .

I was on pramipexole for years and symptoms got worse, doctor kept increasing dose and only when I discovered this wonderful site did I understand that I was suffering from augmentation!

It was a slow process and I took diazepam and cocodamol to help me come off pramipexole. My symptoms had spread to my arms and face because of augmentation!

It’s a hard journey but so worth it , eventually.

Keep trying. You’ll feel the benefits soon .

Good luck .

WendyBea profile image
WendyBea

Thanks so much. That’s very helpful. I’ve been on Pramipexole for close to thirty years and had augmentation at least twice. The last time I didn’t realize what it was, but it was Sue on this site who pointed it out to me and made recommendations. I’m not sure I’ll ever get off the Pramipexole, but I keep trying. There is a dose doctors consider reasonably safe and that is .25 mg which is what I am down to now. I split it into three daily doses, if you can believe that! I have a pill cutter to help me. Thank you again again.

SueJohnson profile image
SueJohnson in reply to WendyBea

No amount is safe especially .25 mg.

WendyBea profile image
WendyBea in reply to SueJohnson

Why especially .25 mg, Sue, if you don’t mind my asking?

SueJohnson profile image
SueJohnson in reply to WendyBea

Because that is half the maximum dose of .5

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