devil and deep blue sea

[Lenma]

All RLS adviceis against Dopamine. All Parkinson's advice is to use and increase it. What do you do then when you have both?

[Hidden]

Someone posted on this topic very recently. Try doing a search using Parkinson's as a search term.

[W0nk042 in reply to Hidden]

I did some searching but couldn’t find anything. Do you maybe have a link in your browser history that you could share?

I’m having the same issue as Lenma and haven’t been able to convince my Neurologist of avoiding the DAs. :((

[SueJohnson in reply to W0nk042]

See my link to the Mayo Clinic article on Parkinson's I provided before on the other treatments and print it and show to your doctor. Also print out the relevant sections on the Mayo Clinic Updated Algorithm on RLS about augmentation,

[ChrisColumbus]

RLS advice nowadays is against using Dopamine Agonists, which are just one possible Parkinson's treatment.

Has your doctor/consultant exhausted the other possible treatments? (Link below)

Others on here may know which of these are likely to trigger RLS...

parkinsons.org.uk/informati...

[SueJohnson]

There are other treatments for Parkinsons besides dopamine agonists. See mayoclinic.org/diseases-con...

[SueJohnson]

Have you had your ferritin checked? Improving it to 100 or more helps 60% of those of us with RLS and in some cases completely eliminates the symptoms. If not when you see your doctor ask for a full iron panel. Stop taking any iron supplements 48 hours before the test, fast after midnight and have your test in the morning when your ferritin is lowest. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not , post them here and we can give you advice. When you get your results, if your ferritin is not over 100, post them here and we can give you advice.

[SueJohnson]

Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, estrogen, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise. Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, using a standing desk, listening to music and yoga.

[SueJohnson]

Many medicines and OTC supplements can make RLS worse. If you are taking any medicines or any supplements and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.

[Lenma in reply to SueJohnson]

That's very kind of you.

losartan

metropolol

madopa

prampixole

aspirin

magnesium

vitamin D3

B12

solifenacin

pro 10

thanks so much

 Lema

[SueJohnson in reply to Lenma]

Unfortunately Losartan can make RLS worse in many people. You might ask your doctor about Isosorbide Mononitrate (Monoket, Imdur)which is safe for RLS. Metropolol is a beta blocker and can make RLS worse in many people. You might ask your doctor about propranolol (Inderal, Hemangeol, InnoPran) which is safe for RLS. Madopa is a dopamine agonist like pramipexole. The others are fine.

[ChrisColumbus in reply to SueJohnson]

Interesting Sue: I was on Losartan for high blood pressure but took myself of it because of suspected side effects (*not* RLS) - which may have actually been caused by Ezetimibe (anti-cholesterol), the Eze was prescribed because I can't tolerate statins because of RLS. I'll have to talk to my GP, but I think Isosorbide Mononitrate is usually prescribed here for prevention of angina rather than for high blood pressure as such

[SueJohnson in reply to ChrisColumbus]

Yes it is prescribed for that but it relaxes the blood vessels and increases the supply of blood and oxygen to the heart which reduces blood pressure,

[ChrisColumbus in reply to SueJohnson]

I read that: I'll check with my GP!

[Butterflysun1 in reply to SueJohnson]

isosorbide mononitrate is not a treatment for high BP even though one of it’s side effects can be to lower BP

[Retiredlady in reply to SueJohnson]

I take 2.5mg Nebivolol at night.

Should I change over to Inderol?

I suffer from Augmentation (symptoms start around 2-3am .I take 30mg codeine which usually gets me an extra 3 hours precious sleep.

Over last 3 months I have reduced my sifrol to .125mg but find it difficult to go any further but will keep trying!

[SueJohnson in reply to Retiredlady]

I would discuss it with your doctor. Not everyone has increased symptoms taking Nebivolol. You might stop it for 3 days and see how it affects your RLS.

[Retiredlady in reply to SueJohnson]

Thank you Sue, I will discuss it with my heart specialist.Unfortunately he appears to be quite ignorant about RSL!

What info about beta blockers aggravating RLS do u suggest I show him?

[SueJohnson in reply to Retiredlady]

Google beta blockers and restless legs. There are lots of articles on this.

[Butterflysun1 in reply to Retiredlady]

hi there, please don’t stop any treatment with any beta blocker even for a few days without discussing it with your Dr first. Nebivolol is a more modern beta blocker. Propranolol ( inderal was one of the first if not the first ). It has broader cover & can have more side effects. The more modern ones have been refined for more specific purposes

[Butterflysun1 in reply to SueJohnson]

see my reply to retired lady. Any beta blocker should not be stopped even for a few days without discussing with a dr first & only with the specific knowledge of that persons reason for being prescribed it in the first place

[SueJohnson in reply to Butterflysun1]

OK

[Butterflysun1 in reply to SueJohnson]

please direct me to the evidence that Losartan, an angiotensin 2 blocker ( think that’s the term ) makes RLS worse and also that Propranolol, an older beta blocker, has less effect on RLS than the more modern beta blockers. The modern ones were created to avoid some of the propranolol side effects & concentrate on the beneficial effects to the heart.

[SueJohnson in reply to Butterflysun1]

reliasmedia.com/articles/46....

ncbi.nlm.nih.gov/pmc/articl...

Plus many more

There is less evidence on the Losartan

justanswer.com/medical/hvo5...

druginformer.com/search/sid...

webmd.com/drugs/drugreview-...

askapatient.com/viewrating....

[Butterflysun1 in reply to SueJohnson]

thank you. I am not going to continue this debate & have read some of these links. I would never trust a link from someone who says they are a dr ( dr of what? ) especially if an over the counter purchaseable remedy was advised who they could be either selling themselves or receiving a benefit from the recommendation.

The article about RLS in end stage renal disease is a very good summary but I see nothing about Beta blockers or any specific ones in it that would translate to the general RLS population.

The mentions of potassium rising in those who take eg losartan is well known & should be well monitored. It can be dangerous. The cough & dizziness - obviously not in relation to RLS are well known side effects. The cough is the result of an irritating chemical produced & doesn’t relate to the chest.

I’m not going to write more but what I am saying is we must be very careful of what evidence we quote & must be certain it is from a reputable source

[SueJohnson in reply to Butterflysun1]

The doctor is triple board-certified with 18 years of experience and you don't trust him?

[Butterflysun1 in reply to SueJohnson]

So he says! What does ‘triple board’ actually mean or refer to? What boards? The way it was written it did not come over the way an expert would explain things or write! And especially when an otc option to buy is mentioned !

I like to see the official list of exacerbating medicines supplied in a reputable & peer reviewed site such as RLS uk etc & the US equivalent.

I love this forum & the large amount of info & support we gain from it.

I just think we have to be very careful what info we pass on as apparent facts

[SueJohnson in reply to Butterflysun1]

JustAnswer vets the doctors (they are doctors of medicine) so it is not "so he says." In the US doctors can be Board Certified in various fields and it is not an easy process and not all doctors are board certified. As far as recommending Hyland's leg cramps. I have used Hylands Restful legs and it controlled my RLS for several months so nothing wrong with recommending an OTC product. On this forum lots of us recommend various OTC products. And you don't like the way it was written - so he is not an expert? As far as seeing an official list of exacerbating medicines in a reputable & peer reviewed site such as RLS UK I checked their site and didn't find any such list.

[Butterflysun1 in reply to SueJohnson]

I think it’s time we stopped this. I have voiced my views, end of story.

[Butterflysun1 in reply to SueJohnson]

the first link which mentions propranolol is again a good summary of RLS & an alert to make sure it isn’t ignored. Again it is over 20 years old if I have read it correctly. All I could see about propranolol is that it has been used as a treatment. I could see nothing about it being recommended instead of Nebivolol in those taking b blockers for another purpose & propranolol as the original b blocker can be very dangerous for those with asthma & some other medical conditions. That is why I say we must take great care in what we advise.

[SueJohnson in reply to Butterflysun1]

What you asked for was evidence that "Propranolol, an older beta blocker, has less effect on RLS than the more modern beta blockers." and that is what I provided. You didn't ask for evidence "about it being recommended instead of Nebivolol in those taking b blockers for another purpose ." which I have no idea about and didn't suggest. Obviously any suggestion would be reviewed by a doctor and not prescribed for someone with asthma and any other medical conditions.

[Butterflysun1 in reply to SueJohnson]

sorry but I couldn’t see any mention about propranolol having less effect on RLS than the more modern b blockers in the links you sent. Would you mind sending me the ones where that is specifically mentioned as I may have missed it.

And my memory is that the person advised to see what happened if nebivolol was stopped for a few days obviously was on it for another purpose & I thought you had written that propranolol might be a better option as it had less effect on RLS. You might be surprised but folk do sometimes borrow tablets from their friends to try things out, especially if desperate & the source of the advice sounds expert & knowledgable

Please correct me if I’m wrong.

I have no wish to argue. My whole point in the post was to keep everyone safe while maintaining the benefits of our wondeful, even life saving forum

[SueJohnson in reply to Butterflysun1]

If propranolol has been tried as a treatment for RLS, it obviously doesn't make RLS worse. Check out the book Clinical Management of Restless Legs Syndrome by among others Dr Mark Buchfuhrer and Richard Allen. Do I need to check out every modern beta blocker and give you sources that they make RLS worse?

[Butterflysun1 in reply to SueJohnson]

I think you misunderstood the point of my post and I’m not going to comment further. It wasn’t about one particular item or person & I think contained valid points.

[Butterflysun1]

that is very tricky for you, but normally nowadays Parkinson’s is treated at specialist centres staffed by folk who will do their very best to get it as right as possible for you so I would follow their advice.

[1357a]

Hi Lenma

I have had a serious accident due to a black out caused by ripinerole, prescribed for restless leg and periodic limb movement at night. I wondered where you had seen that dopamine is not recommended now for restless leg.

I noticed that sweet things, particularly cake, caused my restless leg to be a lot worse. I have been strict and cut out sugar and the restless leg in the daytime has gone and is better, but not disappeared at night.

[Lenma in reply to 1357a]

On these sites and RLS UK!

hanks for passing on your experience

[SueJohnson in reply to 1357a]

Https://mayoclinicproceedings.org/a...

[Hidden]

Hi Lenma, your question, and the resulting “discussion” regarding Losartan (an ARB) I believe has opened up a worm hole in the space/time continuum 💫. First off, there’s this very recent article regarding the taking of angiotensin receptor blockers/ARBs with blood brain barrier (BBB) penetrating properties (as opposed to Losartan which CANNOT cross) and a lower incidence of PD!!!??? It’s unbelievable to me

frontiersin.org/articles/10...

But getting back to Losartan, what a surreal drug in general. It sounds like it can treat everything from hypertension to IBS to leaky gut and toenail fungus (kidding about the fungus). So even though it allegedly does not cross the BBB, it might do it’s magic via the gut microbiome which is probably calling the shots in our bodies anyways. Anyone who’s interested in this topic can do an internet search. It’s really not on point to your question regarding PD and RLS, though it is mind blowing all the good it can do in the body, allegedly. I think I’m gonna have to buy some Losartan on the black market for my IBS.

Ok, getting back to Losartan and RLS, there is anecdotal evidence that Losartan can worsen the symptoms of RLS which in my strange brain translates to “hey this is something that can potentially help our RLS/weak dopamine transport system in the long run.” Short term pain for long term gain. I like it!!! AND, also in my mind, I believe anecdotal evidence is the Holy Grail in terms of medicine. I completely believe people who claim that Losartan makes their symptoms of RLS worse. But how, why, wherefore? I scoured the internet and found that Losartan might (and that’s a big might) be a D1 Dopamine agonist. Unlike D2 receptors which are mainly in the brain (right?), I believe there are alot of D1s floating around the spinal cord such that it doesn’t matter whether it can cross the BBB, Losartan can still affect our RLS via the rest of the central nervous system, maybe? Well, at least this is one possibility as to why Losartan is bad for RLS…in the short term.

You see, our D1 receptors give off excitatory signals and they’re the last thing you want to agonize/set in motion if you have RLS, and especially if you’re coming off the DAs. Ahhh, but in the long run that’s exactly what you want to do-agonize the D1s and shrink those babies. So here’s the result of my scouring ncbi.nlm.nih.gov/pmc/articl...

As far as I’m concerned this is the final frontier in terms of once and for all putting RLS to bed, except in the most extreme cases, as happens with patients in kidney failure or 30+ years of high dose DAs. Theoretically speaking, by antagonizing/blocking our D2s/D3s we should be able to up-regulate them, somewhat, maybe. Just the opposite of the way the dopamine agonists down-regulate our D2s/D3s. The dopamine agonists also antagonize/up-regulate the excitatory D1s. A double whammy. In this situation then we need to once again do the opposite and agonize/down-regulate these bad boy D1s

Does it make any sense then that we with RLS have to figure out the least painful way to take D2 Antagonists like Berberine, or Benedryl or Melatonin (preferably one that is completely benign or even healthy) and also, for people on or are coming off DAs, we need to figure out the least painful way to take D1 Agonists like Losartan? If someone has weak arms and they can’t lift things then they need to build up their biceps and triceps. Most likely through the long and painful process of weight-lifting for the rest of their lives. How do we build up our weak and pathetic dopamine transport system? Anyone have any ideas that are better and less painful than D2 Antagonists?

Well, I can’t help but think that anything that antagonizes our D2 receptors will not only be good for RLS, in the long run, but for PD as well. And if you doubt me, read this: michaeljfox.org/grant/abili...

Or this:

frontiersin.org/articles/10...

Like most things in life, it’s not a one and done. I imagine that RLS patients, or PD patients for that matter, will have to do periods of on again/off again with these substances for the rest of their lives. Beats the DAs and opiates don’t you think?

The answer is out there people.