Medications: I have tried various... - Restless Legs Syn...

Restless Legs Syndrome

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Medications

Keith1231 profile image
27 Replies

I have tried various medications to control my RLS. Does anyone know which medication, i.e. antidepressants, cough mixture, aspirin etc can exacerbate RLS symptoms?

My life is a misery, not sleeping and then sleeping too long at the wrong times.

HELP

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Keith1231 profile image
Keith1231
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27 Replies
SueJohnson profile image
SueJohnson

There are only 2 anti-depressants that are safe for RLS, Wellbutrin and Trazodone. Aspirin is fine. For coughs avoid anything that says night time or has benadryl (Diphenhydramine), Chlorpheniramine Maleate, pseudoephedrine or phenergan in it.

ChrisColumbus profile image
ChrisColumbus

I don't know where you are Keith, but you'll find a list of Medications to Avoid about half way down the page at the following link. (You'll also see that the top half of the page talks about medications that can help RLS):

rls-uk.org/medical-treatmen...

Keith1231 profile image
Keith1231 in reply toChrisColumbus

I live in North Norfolk in the UK. :)

ChrisColumbus profile image
ChrisColumbus in reply toKeith1231

Unfortunately UK doctors are not taught about RLS, and most therefore rely on NICE/NHS guidance which is not entirely up-to-date.

The current RLS 'bible' is the Mayo Algorithm:

mayoclinicproceedings.org/a...

ChrisColumbus profile image
ChrisColumbus

You say that you've tried various medications to control your RLS but you don't say which ones? You'll see in the medications section in the above:

"Dopamine agonists (Ropinirole, Pramipexole, rotigotine patch) are no longer first line treatment amongst experts due to the high risk of Augmentation (drug induced worsening of RLS) and Impulse Control disorders".

Are you on or have you been on any of these?

And have you had a fasting blood test for iron, particularly serum ferritin and transferrin saturation?

Keith1231 profile image
Keith1231 in reply toChrisColumbus

I have tried Ropinirole which made me violently sick and I am currently taking 4 x .088 tabs per night of Pramipexole. I haven't been asked to take a fasting blood test abeit my Sleep study Dr said my ferritin levels from my recent blood tests, used for other diagnostic reasons were fine. I take antidepressants and antihistamines.

Joolsg profile image
Joolsg in reply toKeith1231

Keith, read, read and read. Doctors know very little about RLS, the meds that trigger it or the meds that worsen it.You need to ask for the numbers from your recent test. Fine for the general population is NOT fine for RLS. Ferritin should be above 100, preferably 200.

Pramipexole worsens RLS. So get off it. Reduce by half a 0.088 pill every 2 weeks.

Switch to non sedating anti histamines like loratedine or cetirizine. Switch to trazodone with the help of your doctor. Slowly reduce existing anti depressants.

Join rls.org or RLS-UK.

Keith1231 profile image
Keith1231 in reply toJoolsg

I looked up my Ferritin results that were 384. Just a normal blood test not fasting. I have been taking pregabalin 150mg per night this will be my 6th night. I have stopped taking pramipexole. I have Dr appointment on 8th January to discuss. Thanks for you help.

Joolsg profile image
Joolsg in reply toKeith1231

That's great. Pregabalin takes 3 to 4 weeks to be fully effective.Your serum ferritin is indeed fine.

DesertOasis profile image
DesertOasis in reply toKeith1231

Ok, so u weaned off the anti-d?

Keith1231 profile image
Keith1231 in reply toDesertOasis

yes in December 23.

ChrisColumbus profile image
ChrisColumbus

1. Most RLS sufferers who take one of the dopamine agonists will find that they eventually cause the augmentation referenced above. SueJohnson , Joolsg or some others who have had to come off pramipexole or ropinirole can give you more info and advice on switching to a better treatment.

2. Few doctors know much about RLS, and what they do think they know is often out of date. There is a very wide range of "normal" for serum ferritin, but RLS sufferers benefit from higher levels - over 100 preferably nearer 200. If your ferritin level is lower than this and your TSAT figure is under 45% you will probably benefit from iron supplementation or an infusion.

3. As Sue wrote, only two antidepressants are considered 'safe' for RLS: the others, and sedating antihistamines, make RLS worse for most.

Madlegs1 profile image
Madlegs1

Yours is a classic case of how doctors mistreat RLS.

You have a clear legal case against whoever got you into this mess.

You have good advice already, but a hard road ahead.

Do take that advice.

Get off the Pramipexol --- very slowly and by tiny amounts. Otherwise you will experience crazy withdrawals.

Your experience has been exacerbated by antidepressants and antihistamines -- but there are alternatives.

Read all the related posts on this page and take them seriously.

All the best.

Keith1231 profile image
Keith1231 in reply toMadlegs1

Madlegs1: You make it seem like recovering from trumatic phyical event. I thank you for your advice and the advice of others. I was on 3 x .088mg of Pramipexole per night. I havent taken any for 6 day when I started taking Pregabalin. Last night I may aswell not gone to bed. Geting up numerous times to shower my legs with cold water. Then later spraying my arms and legs with magnizium oil. I am writing this knowing soon I will be challenged again. I dread going to bed. However, your advice and the advice of other gives me hope.

SueJohnson profile image
SueJohnson

You were on four .088 mg tablets 9 days ago. You are probably miserable because you reduced much much too fast. I realize in looking back at my message to you that I thought I had told you how to reduce and I realize now I didn't. I suggest you go back on to pramipexole and increase it to a level where you symptoms aren't so bad, even if it means you have to go back up to the full 4 tablets. Then after your symptoms have settled reduce by half of a .088 tablet every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and may need a low dose opioid temporarily to help out with the symptoms especially as you near the end. Some have used kratom or cannabis temporarily to help.

As Joolsg said the pregabalin won't help for 3 weeks and also won't help much until you are off Pramipexole and your symptoms have settled. After that increase it by 25 mg every couple of days until you find the dose that works for you. Take it 1-2 hours before bedtime as the peak plasma level is 2 hours. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 200 to 300 mg pregabalin."

On your blood test did you stop taking any iron supplements even in a multivitamin, not eat a heavy meat meal the night before and had your test in the morning? If not your ferritin may have shown as higher than it really is and you might want to ask for a full iron panel and follow those things as well as fast after midnight. If you do get a new one post the results here and we can give you some advice.

Keith1231 profile image
Keith1231 in reply toSueJohnson

When I posted 4 x 0.088mg prampexerole I was on holiday a didnt have access to Pram. I received the Pregabalin when I arrived home and started taking the prescribed dose of 150per night. They have given me 28 tablet as a test. I am seeing Dr on 8th Jan for review. As I have not taken any Pram for 6 day are you saying I should restart to a maximum does that controls my RLS and then ween off?

I have made a list using your advice and others to speak to my Dr about. I have got a double appt, 30mins.

SueJohnson profile image
SueJohnson in reply toKeith1231

I am a little confused by your answer. You say when you were on holiday you didn't have access to pram. Did you mean pramipexole or pregabalin?

Keith1231 profile image
Keith1231 in reply toSueJohnson

No pramipexole. I havent taken it for 6 or 7 days? Sorry for the confusion.

Munroist profile image
Munroist in reply toKeith1231

Most people have a bad experience if they stop dopamine agonists (pramipexole) suddenly and it sounds like you are hardly sleeping, presumably because of RLS following a sudden cessation of pramipexole. This is likely due to DAWS (Dopamine Agonist Withdrawal Syndrome) and can be lessened by reducing the pramipexole dose more slowly so yes Sue and Jules are suggesting going back to your previous pramipexole dose and then reducing in very small amounts from there. That may prevent RLS flaring up and allow you to transition to pregabalin more comfortably. Some people do manage to stop DA’s dead without too much discomfort so you might want to persist if you feel things are starting to get better. In either case pregabalin normally won’t help much until a couple of weeks after withdrawal from DA’s. Withdrawing more more slowly will also allow you to read more posts on the forum and decide what to do about your other drugs which aggravate RLS but may well be necessary.

Keith1231 profile image
Keith1231 in reply toMunroist

Thanks you. After a better nights sleep last night I will resist taking Pramipexole. I do expect further disruption with my sleep and will speek to my Dr regarding medication replacement for those that have been identified as being 'bad' for RLS.

Keith1231 profile image
Keith1231

I have just check to see if any of my other meds affect my RLS. Montelukast- YES. Lansoprasole - YES. Atorvastatin - YES

Simkin profile image
Simkin

Anything to help you sleep makes RLS worse - any sleeping pills etc.Night nurse for colds is one of the worst culprits.

Virginic profile image
Virginic in reply toSimkin

Nearly all, but Zopiclone and I think Zolpidem are exceptions.

Simkin profile image
Simkin in reply toVirginic

Zoplicone is one of the worst for me personally.

Virginic profile image
Virginic in reply toSimkin

Sorry to hear. That’s bad luck.

Twitcher profile image
Twitcher

I know that cold meds do it - diphenhydramine!

san_ray70 profile image
san_ray70

I told my doctor I have R.L.S. he told me nothing helps, medication wise, so I just keep waking up in the night. I have sleeping tablets but I don't like to take them. I am glad I have retired, so I can make up for some lost sleep.

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