Magnesium

[LoisTonya]

Hi Neil,

Another excellent night. I didn’t get up till 7:30am and even then it wasn’t because of rls. Floridex magnesium really works for me.

[Neil46]

I am very pleased for you. Sleep is so important in our struggle against this cruel disease. I will start my Magnesium Citrate again to see if it can get me over this bout of insomnia. Thanks for the encouragement,

Keep well

Neil

[VJ29 in reply to Neil46]

Hi do you take anything else as well as the magnesium as I’m taking normal magnesium slow iron D3 and B12 co codimol and 3x 50mg of pregabalin - day time great now in the main but still waking for a period in the night. Not sure what to change or try? Also how does pregabalin put you weight on if you don’t eat more?

[Neil46 in reply to VJ29]

Good questions...but I don't know. The only thing I can think of is maybe you have PLMD at night and the twitching and kicking is waking you up? I assume the evenings are restful now and you actually get to sleep at first.

You could ask for a new blood test to see if your vitamins and minerals are in balance, but I have found out that the vitamin and mineral balance at cell level requires a hair tissue mineral analysis test and I don't know if these would be available as they require special lab readings.

When I started pregabalin I craved sweet things and stodge (doughnuts etc) but since I found out I am gluten intolerant I am starting a no gluten, no sugar, no dairy diet for 6 weeks to calm down my gut (I am sure I have SIBO, like a large percentage of RLS patients). I will be adding fermented foods as well which is a big change for me.

Maybe other members have more ideas?

Neil

[VJ29 in reply to Neil46]

Thanks for your reply Neil I’ve started into a difficult phase and my RSL has kicked in again and it’s driving me mad stopping me getting off to sleep and feel a bit a but restless in my shoulder and ar as well. I am very tired though at the moment so maybe it’s a catch 22 situation! I did a 10 mile walk on Saturday so perhaps that’s a trigger. Also cut down my iron and magnesium to 1 per day from 2 as iron was making me constipated can’t win! Taking a 50mg pregabalin atnd 1 30mg co-codimol at 5pm 8pm and 10.30pm. Have you or anyone on the forum any ideas for me please. Was doing so well after augmentation previous drugs and coming off them.

[Neil46 in reply to VJ29]

I am sorry that you are still suffering. Sleep is so important. Yes, I think your legs are tired and probably stiff from your heroic efforts on Saturday! That way they are in your thoughts all the time and that nudges your RLS. As you forget them maybe your RLS will subside as well?

Your description sounds like augmentation still happening, with the shoulder and arm being restless. It can be a lengthy process

Neil

[LotteM]

I am sorry to hear that, VJ. Not sleeping well makes you tired, and tiredness increases rls - in my case, at least. I read in previous post that you were on 75mg pregabalin before. Why did you reduce? And you ferritin was not very low; you may want to switch to one every other night. And to help with constipation, which I have too sometimes, it may help to dissolve a half teasp of potato starch dissolved in some water. Drink in the morning. Read that here on the forum some months ago. Cheap, simple and effective.

And finally, too much exercise is not good for my rls either. As is too little. I hope your nights improve soon!

[LoisTonya in reply to LotteM]

I just eat 4or 5 prunes. Seems to work.

[VJ29]

Thank you all for your replies I was on 75mgvin total as a starting dose of the pregabalin now total dose is 150mg do you think this is enough? Could I be istartingv a new augmentation with this drug? I do think the flare up is linked to being tired and maybe too much exercise in one day if I’m honest but very worried it’s getting worse again.

[involuntarydancer in reply to VJ29]

I think it is unlikely to be augmentation at this stage. The given wisdom is that it isn’t possible to augment on pregabalin but I wouldn’t be too sure, however it is much more likely at this early stage that either your dose is too low or you haven’t been on it long enough - it can take as long as a month to kick in.

I had very little faith in pregabalin as a treatment but decided to give it one last try and have been gradually titrating up over the last couple of months. I have been on 150 mg for nearly three weeks now and I really think it is starting to help though I think I will have to go a bit higher for proper relief. Dr Buchfuhrer suggests between 150 and 300 mg so 150 is pretty much the starting dose.

I now wonder if one of the reasons pregabalin doesn’t work for some people is they don’t stick with it for long enough. I am surprised by how long it has taken to kick in against the legs.

Incidentally, I walked for about 6 miles on Monday (about twice what I would normally do at best) and my legs were AWFUL on Monday night.

Best of luck.

[VJ29]

Thank you for your reply yes thinking maybe need a higher dose do you take anything else with the Pregabalin?

[involuntarydancer in reply to VJ29]

My aim is to be on pregabalin alone but at present it’s not fully reliable against my Rls and I am attempting to resume work in a fairly demanding career path and need at least some sleep. Consequently I always have two portions of Kratom (about 3 or 4 mg each) beside my bed and most nights I need one or even both of them also to quell residual symptoms.

Previously I would have required a much stronger dose of Kratom so I’m hoping as my pregabalin dose increases the need for Kratom will reduce.

Because Kratom causes nocturnal alerting in me which can itself prevent sleep all night (this is the primary reason I am seeking to replace Kratom with pregabalin), most nights I also take either 7.5mg of zopinclone or a fairly hefty dose of cannabis (as an edible) before I go to bed to make sure I sleep.

[VJ29 in reply to involuntarydancer]

Glad you are doing ok on the pregabalin and hope you can increase it and cut out other drugs! I’m more or less rsl free in the day and in the main in the evening it’s just the getting off to sleep and waking in the night I don’t know if I’m wasting my time with the other vits and supplements and not sure if co codemol helping or not! I think I’m dreaming that I don’t need pregabalin and can manage on supplements! So don’t want to increase any more when perhaps I should be! But from what you are saying pregabalin might not be so bad to take?

[involuntarydancer in reply to VJ29]

I really don’t know how good or bad it is to take. Some reports would send you running for the hills and others make it seem relatively innocuous.

I am trying to resume working and really want a treatment that allows me to do that.

If I can get over the side effects (which seem to be abating) and get a dose that deals with the rls symptoms and allows me to sleep - that will be a winner for me. Nothing else I have tried since stopping mirapexin has really achieved that properly.

[VJ29 in reply to involuntarydancer]

Really hope this works for you (and me!) I’m thinking that I need to sort my dose out now as a next step!

[LoisTonya]

I know nothing works for everyone. It is easy to discount magnesium because there are so many types, all of which I’ve tried, and some help a little but Floradix magnesium really works for me. I’m almost rls free.It says to take before a meal so I’ve been taking it before my evening meal to give a good night.. I can cope with rls by keeping on my feet during the day. I ‘ve recently taken it before lunch and I have been able to sit for a while in the evening and watch TV. I’m so delighted by it that it would be interesting to do a trial by other people on this site.

Beware Lois! Everytime I think I ‘ve found something helpful it doesn’t last!

[LoisTonya]

Hi Neil, Magnesium Citrate didn’t help me but Floradex Magnesium does. I don’t know if their addition of fruit and herb extracts has anything to do with it.

I’ve now stopped the magnesium spray and everything’s still going well.

[lauraflora]

Happened to see this post about Floradix Magnesium and others where you have had trouble finding it or got the last one. Why don't you get it on Amazon UK? I see it is available there.

It must be the best one for you. I have never tried it, tho I have had something else from Floradix. Perhaps it is easy to absorb. I take magnesium citrate, and that seems to work for me.

[Hidden]

I had restless leg syndrome with medication that I was taking but no longer take. However I would use Magnesium Oil every night when I took my meds. It really knocked down the restless legs a lot and I was able to sleep.