Possible side effects

[Donna13]

So I've finally managed to get hold of a Dr who doesn't think I just get leg cramps, it's definitely restless legs!! For years I've suffered and at the moment trying magnesium spray at night, which helps a bit but I'm still only falling asleep because I'm exhausted! So I've got blood tests Monday to check iron/magnesium levels and my thiroid (I think) and anything else, let's hope it's something as simple as that!! If they're all clear she said she can start talking about medication. Can't remember what it's called but she said it's a med that's used for parkinsons but the side effect can be bad, but she didn't mention what they were, to be honest I don't care because I'm getting desperate now, but just wondering what exactly are the side effects? If anyone knows, thanks.

[Pippins2]

Donna make sure they test your Ferrartin iron levels which is a different one to just testing ordinary iron and when you get the results be sure to find out the actual number as it needs to be over 50 preferably 70 which is much higher than that of someone who does not have RLS. The meds she is referring to are the Dopamine Agonists most commonly used are Mirapex ( Pramipexole ) Requip ( Ropinerole ) and Neupro patch. Of them all the Neupro patch is most preferable as it has the lowest rate of augmentation but it is much more expensive than the pills so you might have to push for it.

Everyone reacts differently to each med, the Dopamine Agonists don't work for everyone you can only try for yourself, it's all trial and error.

Some report feeling nauseous on them, let felt dreadful on Requip but ok on the others.

They can cause compulsive behaviour in some people eg gambling, overeating etc.

The importantthing is to keep the dose very low as the higher the dose the greater the chance of augmentation. That is one of the biggest problems with the Dopamine Agonists they can cause augmentation

Coming off them is often very difficult, the withdrawals cause severe RLS and a strong p is usually needed to get off.

Take care look through the old posts and comments, you will learn a lot from other members experiences

I personally do well with the patch.

Well I am dropping off to sleep myself now so will leave it there

Let us know how you go on

Pipps x

[Hidden in reply to Pippins2]

Just wanted to +1 on this post of pippins2 more good advice.

Since you are getting a dopamine agonist try and get the patch as Pippins has said much less side effects than the others.

Good luck and let us know how you get on.

[Chigrl in reply to Pippins2]

I have been on the Neupro patch for three weeks now. It is amazing. I also got a card for the pharmacy that I can use for twelve months that I only pay ten dollars. After that hopefully something else will come up, like my insurance paying for it.

[Hidden in reply to Chigrl]

I don't know how you guys that have to pay in the US for your drugs, its scandalous that people with long-term debilitating conditions are put under further strain financially trying to cope. Surely it would be more cost effective to treat people properly and keep them fit and working?!

[Shaft1952]

I was recommended magnesium 500mgs by neurologist which I bought it take it last thing at night, any other tablets I take earlier. Magnesium is better taken on empty stomach also can work better when we sleep, helping to improve the bodies own levels. Good luck, it is to early for me to say how well it is working but hopefully, I am also going to buy some ferrous sulphate which is iron, that is also recommended even if ferratin in blood seems to be OK.

[Graham3196 in reply to Shaft1952]

I have been told that Ferrous di-glycinate (also referred to as Iron (II) glycinate where the II represent the roman numeral for 2) is the preferred form of iron supplementation. The story is that this form of iron can penetrate the Blood-Brain-Barrier and so become useful in the brain to increase the supply of dopamine. I dont know how true this is but I use this form of iron and it seemed to help Others have recommended a dose at night time before bed. I have tablets that are 24mg of iron in 87.7 mg of iron (II) glycinate.

I was also recommended Magnesium di-glycinate but it made my RLS worse. I have heard from others that it works wonders so again give it a try.

I have a daughter who has inherited my RLS. She uses a magnesium cream that she applies after she has symptoms and she says it works.

I haven't completely fixed my RLS but I have had great relief by switching to a Monash University developed diet called the FODMAP diet. This diet was developed to help IBS victims but there seems to be something in common between IBS and RLS so this diet has helped me and at least 5 other people that I know of. Some people (perhaps 30%) it doesn't help. Some who have tried it have had same day success. It costs you nothing (other than forsaking some great food) to give it a try. Search for "FODMAP diet and look at websites that are put out by respectable institutions. There are some in both US and UK. I suggest you find an experienced dietician to see you through the process. And be absolutely strict. A small deviation is enough to upset my legs.

Good Luck

Graham

[Madlegs1 in reply to Graham3196]

There was a poster previously on this site who seemed very knowledgeable about iron supplements -- bis glyc--- they may be erased now. Worth searching.

[Shaft1952 in reply to Graham3196]

Thanks for the info graham

[John_naylor]

Doc may try Gabapentin which is a Parkinson's drug. It has side effects also,: nausea and worse but we all react differently. Good luck!

[Grammieof4 in reply to John_naylor]

I've been taking gabapentin for a few months now and it has been a life saver. I take 300 mg at 6:00 pm and 600 mg at 10 pm. No side effects at all and it's worked. I also take Vitron C which helps with the iron level but is easier on the stomach. Also started taking magnesium at bedtime. My doc said 490 mg magnesium bit I could only find 250 mg.

[johannasuar]

Hi Donna 13. The usual and most likely medication you will be put on is Gabapenting, it didn't work for me but it did make me gain an incredible amount of weight in a very short time, consequently I dropped that med and now I take TRAMADOL which has no side effects for me except maybe a little sleepy sometimes during the day. I take a short nap and then I'm Good to go. There are so many medications out there, be careful, many people here will guide you and will be very helpful because they have tried many more meds than I have. Good luck. By the way, I'm on 50 mg pills of TRAMADOL, I take one at 5:30 pm and another one at 11:30 pm before bedtime. Originally I took only ONE pill before bedtime but I got a little augmentation which is something that others will explain better than me and you must be very careful because getting away from those kind of meds is very hard and your problem with RLS will become worse. Do keep in touch.

[Madlegs1]

This will be an interesting test of your doctor's knowledge about RLS treatment.

The current" go to" med would be Pramixepol (Mirapex) starting at .088 and titrating up from there at 3 day intervals until relief is achieved - but stopping at .25.

The more discerning doctor might go for Gabapentin or Pregabalin ( Lyrica) or Horizant (better form of Gaba)

Or they might try the Neupro patch.

As Pippins said- it's very much trial and error.

Worth researching all of these before your appointment.

Cheers.

[Lorriloo]

Hi, I've has rls for years, I don't take any prescribed medicines as I try not to put nasty rubbish in my body, I've had terrible problems from medicines before, but I have found that cutting out processed sugars helps massively! Also it's really important that you don't have any foods with high sugar content late evening, by that I mean anything with a carb sugar value over 5grams per 100grams.

I go to bed at around midnight, so nothing after 8.30pm works for me. That will most likely be different for everyone. Sugar plays a huge part in inflammation in our bodies, so cutting out processed sugar will no doubt help all round.

I do take magnesium, it's important that it's a good brand, I use lamberts, most supplements are full of useless packers that can hinder absorption, also, you want magnesium citrate, that's the most easily absorbed form. I take three around 30 mins before bedtime.

One thing to note also, have you had vit d checked? That can contribute to rls significantly. Hope this helps.

[Lorriloo]

Forgot to mention, a 20 minute brisk evening walk helps too, it stretches out the muscles and gets the circulation going, when my rls gets bad I've found that a walk always really helps 😊

[lauraflora]

Also, look into Chiropractic. They are well versed in RLS. I wouldn't say that one's back being out (esp. lower back) is the cause, but it is definitely an aggrevation to the nerves and makes RLS so much worse. That is what I do - see my chiropractor. My sacroilliac goes out frequently, and when it does it makes my RLS an all night disruption, very bad, with nerve impulses coming every 15 seconds! Chiropractic and icing the area afterwards makes the whole thing settle down.

I have been having quite a bit of success with some other things I have posted on here (alternative supplements.) I do know that there is an internal disruption going on, which is why I say one's back being out is not the cause, but an aggrevation. Two other things I have been doing are: taking Schizandra herb, which helps so much with sleep (there's more to it than that, but I am not going into it now.) The other thing I do, which seems to reset things for several hours is:

If I feel any RLS while I am laying in bed, I put one leg at a time, up in the air, hold my ankle and pull the leg down toward my face. I do this several times. Somehow - perhaps stretching out the lower spine in this way - It works well, and i don't feel any nerve impulses for several hours.

[Hidden]

Sounds like you have Fibromygia to me