Xarasho

[Xarasho]

I am Suffering from severe RLS and I’ve tried everything from vitamins to CBT OIL, 5 HTP Hydroxytry.. , nothing works, the only thing helps is the agnostic dopamine drugs which is for Parkinson disease, it has really bad side effects , please someone help me and be. genuine!!!

[Madlegs1]

What dose of the Dopamine Agonist drug are you taking, and which particular one?

DAs are the first line medication for rls, and are a useful indicator as to whether you actually have rls. Which you obviously do!!!

There are side effects with them all, but usually at higher doses.

I'll be interested in your news.

Cheers.

[Xarasho in reply to Madlegs1]

Thank you for responding to my message and I would be grateful if could help.

My GP last month after a full blood test with normal resvult, prescribed me Pramipexole 0.25 which is the lowest doze. It helps mec100% when I take it.

But I am reluctant to take it regularly, because i learned that its cause memory loss , heart condition and depression . I need someone with knowledge who explain these affects whether it’s true or not.

the immediate side-effects of Pramipexole that I experienced is that next day I get angry quickly and slightly lose my temper then normal, but if take it with vitamin B complex the side effect reduces 90%.

I look forward to hear from you

Thank you once again

[Madlegs1 in reply to Xarasho]

That explains a lot.

At 0.25mg you are at the highest recommended dose for Mirapex for rls.

You should have been started at 0.088mg and raised by one increment after 3 days until the rls was relieved or at least 80%effective, to a max of 0.25mg.

The higher doses are for Parkinsons disease and definitely not applicable to rls.

You could ask the pharmacist for the 0.088 pills and go back down and rhen follow the directions above. That is the regime I was on for a time. I got relief at two pills per day, without side effects.

Be careful about reading too much into what people describe as side effects- for 2 reasons.

One is that there is an element of auto suggestion-- you will experience what you are expecting.

And second-- everyone is unique, and experiences different reactions.

You mention the Dr tested you and results were "normal" What was the figure for your serum ferritin? It needs to be at least 100 for rls relief, and some people would say up to 400. But be aware that not everyone has relief from iron supplements.

Let us know what you find out.

I would certainly get back to your Dr with this information and demand a better service.

Cheers.

[Xarasho in reply to Madlegs1]

I will follow your advise, I checked the doze it is 0.125 not 0.25 sorry it was my mistake. I take 1 tab 2 hours before bed.

[Madlegs1 in reply to Xarasho]

In that case I will have to ask someone else to advise you, since you are on a different dosing regime to where I am living. As far as I know, your 0.125 may be the same as my 0.088. There are different ways of computing the active ingredient in different countries. I take it that you are in Australia or America?

Good luck.

[Xarasho in reply to Madlegs1]

I live in England and I am sure that MY GP said it is the lowest doze available and if it does not effective than he may increase it.

Thanks again , after your helpful and careful advise I shall take the drug regularly without which my RLS make me to play football in bed.

Kind regards

[Hidden in reply to Xarasho]

Just to explain, the smallest tablets of pramipexole contain 0.125 mg of a salt called pramipexole hydrochloride.

Like the salt we eat, i.e. sodium chloride, part of which is sodium and the rest chloride this salt is partly pramipexole and the rest is hydrochloride.

If you take the hydrochloride away from 0.125 mg of pramipexole hydrochloride it will leave you with 0.088mg of pramipexole.

0.088mg pramipexole + 0.037mg hydrochloride

= 0.125mg pramipexole hydrochloride.

Hence whether you call it a 0.125 tablet or a 0.088mg tablet, it's the same thing.

[Xarasho in reply to Hidden]

Very professional explain thank you

[Hidden in reply to Madlegs1]

It confused me at first it's to do with chemistry.

The smallest tablets contain

0.088mg of a "base" i.e. pramipexole

plus

0.037mg of an ion i.e.hydrochloride

To make a total of 0.125mg of the "salt" i.e. pramipexole hydrochloride.

When the tablets dissolve the salt splits and releases the pramipexole.

Isn't science brilliant!

[Madlegs1 in reply to Hidden]

I scored 0 (zero) in an IQ test for numeracy. They had never come across someone like that. (I scored super genius in literacy)

So your explanation is very welcome but right over my little head!!!!!🤪

Thanks, Manerva.

[Xarasho in reply to Madlegs1]

This the doze i take : Each tablet contains 0.125 mg of pramipexole dihydrochloride monohydrate equivalent to 0.088 mg pramipexole.

[Madlegs1 in reply to Xarasho]

🤪 we crossed each other there.

Well done- you have confirmed what I was thinking.

Keep it going and good luck.

[agapepilgrim]

😢have you tried 800 mg magnesium, or used powdered Calm with zinc supplements just before you go to bed, and absolutely no stretching.

[agapepilgrim in reply to agapepilgrim]

Btw, I double dosage for Calm and take 5,000 mg capsule form of vit C

[Xarasho in reply to agapepilgrim]

, in the last 25 years i have tried Everything including magnesium calcium and multi minerals with no positive result. Only Pramipexole 0.25 helps, but I am worried on it’s long-term side effects

Thank you very much

[agapepilgrim in reply to Xarasho]

Did you try the powder form Calm? I don’t metabolize any tablet form. Also, I don’t metabolize folic acid (discovered by doctor via Genosight sight test) which affects metabolizing any medicine that affects our brain. So I must take 10 mg methyl folate daily before any meds are metabolized to affect the nerves in my brain.

[Hidden]

Are you Russian?

Some people find that some forms of CBD oil do help, but there's so many different forms and no real evidence of any of them working.

There is anecdotal evidence that Cannabis can help with RLS, but it may depend on which strain.

5 HTP is claimed to be good for depression, not RLS, but there's no real evidence that it works for either.

There are various non pharmacological remedies for RLS. The main one is iron supplementation.

You can read about this and other non pharma measures by following this link

uptodate.com/contents/treat...

The same article will also tell you about the medicines you can take for RLS.

As Madlegs says, if you take a dopamine agonist and it works then it does confirm you have RLS. Dopamine agonists can be very effective and immediately effective for RLS.

Hopefully whichever one you're taking, it will work for you for years to come. However, hppefully you have been warned about the longer term risks of these drugs, that is loss of efficacy, augmentation and Impulse Control Disorder. The first two are very common and can be avoided if you only take a low dose and never increase it.

Even if you're taking a medicine, you can also try the other measures, again, especially the iron.

[Xarasho in reply to Hidden]

No , I am not Russian but I studied the language.

Thank you for your info it was helpful.

[Hidden in reply to Xarasho]

Пожалуйста

[Accipiter]

There is a long list of non drug approaches, but they can be slow to show results and out of the list of around 30, you need to try them all to find a few that help.

Your success will also be determined by your view or biases on RLS, as well as how you are influenced by advice from others. My input is basically one of starting with an empty and fresh view, then working through as many options as you can find.

It will be a long an arduous process, but the best chance of success. Tunnel vision and group think is your enemy.

[Xarasho in reply to Accipiter]

As I said I have been suffering from RLS for 25 years and I have been actively searching for ways of treatment for the last 10 years , imagine when your leg and now your arms have severe restless syndrome what you do ?

I tried for months Apple cider vinegar , magnesium pills , painkillers and Chinese and Indians herbal therapy , with no success.

But I am open to any new suggestion , thank you for you advise.

Only the drug that I I mentioned at the moment works and I have no choice but to take them,

Thanks

[Accipiter in reply to Xarasho]

You certainly sound like you have tried many things.

My perspective is more of studying symptoms, working out what makes them better or worse, as well as diet and supplements.

My RLS is only in my calf muscles, so if you have augmentation I may not be of help. If you want a big list of things to try, send me a chat message and I will put something together.

[Xarasho in reply to Accipiter]

I learned through my own experience that the following are increases the RLS:

Row Tomato , Aubergine, cucumber row garlic in any salad, cold icy drink, yogurt, lemon, orange, are increase the RLS.

Following activity and things that reduce the RLS:

Intercourse , a spoon of apple cider vinegar in a gals of warm water an hour before bed, wearing thick socks at night, stretching your legs, going to gym and pulling weight using your legs after work, green tea, hot bath just before bed, massage ,some multivitamin and minerals.

Now these thing are not helping me, but may help you as your symptoms are very mild.

Hope you never be where i am now and this message would be helpful.

Thank you

[Accipiter in reply to Xarasho]

Your description looks like oxalates could be the problem. Search for 'low oxalate diet' to get some background.

Over the next few days I will contact you through chat and see if I have anything new to you to offer.

My symptoms have been very bad as well.

[DicCarlson]

Comprehensive iron tests for Ferritin, TIBC, % saturation could be useful. My docs said Ferritin was fine (49) with raging RLS. Iron supplementation totally reversed it.

If I'm not mistaken, Gabapentin or Pregabalin is now the 1st line of treatment for RLS... "A clinical trial of the effects of pregabalin versus pramipexole in RLS patients over 1 year showed pregabalin to be significantly better than pramipexole in improving the severity of RLS symptoms. The alpha-2 delta drugs are an effective treatment option for many patients with RLS and should be considered one of the choices for first line treatment of RLS." hopkinsmedicine.org/neurolo...

[Hidden]

You might gind this useful

uptodate.com/contents/treat...

[Xarasho in reply to Hidden]

The web site was very helpful and put my mind at rest, as I am taking small doze, side effect of which is very low.

Thanks again and God bless