RLS - What a nightmare !!

[emck1]

Hi there, at least i know im not the only one suffering this awful feelings at night, it is so frustrating, the only thing i can do is get out of bed and go for a little doddle round house but as soon as i get back into it, it starts again. I currently have to take one table 2 hours before bed and that usually avoids all symtoms, however since starting this table just less than a year ago, it has made my RLS more agressive esp when i dont have my tablet or dont take it in time. Its worryin that i could be reliant on this table, mirapex, now sure if anyone else here takes it but i i know that you cant really take in when expecting so that is worrying as some day id like to have a child and dont want to be reliant on this tablet anymore as i wont be able to take it if i ever become pregnant. Has anyone any solutions or answers or had the same problem after starting on medication that the symtoms are more unbearable than they were before if you dont take it for a night. Love some info from you all as this is starting to get me down.

[Hidden]

Hi, lots of posts and comments on people who have taken Mirapex and it eventually made their symptoms worse its called Augmentation. If you put Augmentation and RLS in the search box at the top right hand side of the page, you will see many of those posts pop up for you to read about will give you plenty of info on what to do.

[emck1 in reply to Hidden]

Thanks for that Elisse, if the doc had of told me that over time it would make them worse I would never have started to take it. Unfortunately now it too late but back with another doc on Monday and hopefully she be fit to help me come to some sort of relief without having to take the mirapexin anymore xx

[NoMoRLS in reply to Hidden]

Ugh augmentation

Get help for it

[TEAH35]

Dear emick1, I have had chronic RLS my entire life and am now 64. I hate to be the bearer of bad news darling, but the feelings of RLS that you are currently experiencing are going to increase with double intensity. for your entire pregnancy. But the good news is, (yes believe it or not there is some), after the birth, restless legs will totally disappear. How long for I cannot speculate, but for me it was 6 years until I fell pregnant again.

I suggest you talk it over very intently with your doctor.

Medication was not an option for me as I was not diagnosed until my late 50s.

[emck1 in reply to TEAH35]

Oh god I hope not Grany, I started on the table last year as I was getting the symptoms every night and cudnt bear not being able to go to bed with out it starting. I hope to get some more Info on Monday day as to options when I come off this tablet as the fact that it had got o bad now when I don't take it for a night is very worrying. I really wish I hadnt started taken it. I do only have to take the one so I see people talking about having to wean off it but how do u do that when only taking one small dose or does any one know If there are other medications out there than can be taken if you do become pregnant that is not harmful to the baby?

[TEAH35 in reply to emck1]

Sorry my dear, but that really seems to be the common consensus on pregnancy and RLS.

Because of my age and late diagnosis i am afraid that I have no idea what meds (if indeed any) can be taken while pregnant. I remember my pregnancies well ... they were literally hell on earth. But please keep in mind, that all of this (for me) was over 40 years ago. Surely there must be something out there by now that can give relief without harming the baby.

[emck1 in reply to TEAH35]

Please God, thanks for ur info Grany, I'm just thinking of doen the road and when Id like to start thinking of s family so just want to know my options now so that I can be a step ahead. Day at a time. Was there anything home remedy wise that helped u out with ur RLS, do u still have it?

[Madlegs1 in reply to emck1]

Please read up on previous posts over the last few weeks. There has been loads written on your exact situation.

You need to look at what might be causing it.

Triggers- foods, medication, fizzy drinks and the list is endless.

You serum ferritin should be at least 100 to get that out of the way.

Alcohol is a killer.

Look at this site

rls-uk.org

for some guidance.

[TEAH35 in reply to emck1]

I didn't know I had it till I was 48. I thought I was the only person in the whole world that had it. So no I knew nothing about any medications (home remedies or otherwise).

I was definitely on my Pat Malone. (sorry that was Oz speak for alone). I sometimes forget where I am.

And yes, of course I still have it now. It's progressive and it only gets worse with age. Boy I am full of doom and gloom tonight. Sorry it's really not intentional. BuI it is factual and that's what you're here to hear.

[SLMCP in reply to TEAH35]

Sadly RLS didn't disappear for me after the birth of my first child. I stopped all medication whilst going through IVF and sadly just had to suffer the RLS - bit eventually it was most definitely worth it. Good luck emck1 x

[Mirapexhell]

Yes you are right, unfortunately I've been on mirapex for 7 years. What you are describing sounds like augmentation. Sometimes I don't have any symptoms of RLS or as I fondly call it, The Fidge and then I take my dose of Mirapex and I get the worst Fidge ever. It is really awful and lasts 1-2 hours. The real awful thing about the drug is dependency on it for control of symptoms so you can get any rest at all. If I run out or don't take it at all I'm so miserable I'm pacing the floor, too restless to even sit. It's like a zombie nightmare, standing up falling asleep. Wish I'd never started it.

[emck1 in reply to Mirapexhell]

Hi there Mirapexhell... that sure describes the tablet, thanks for your reply. I have only been taken it about 9 months or so now. I only have to take .88 a couple hours before bed and It does the trick, however this past while I have noticed from approx 5.30am in the morning my arms are all pins and needles and my right hand and arm always feel cold and this feeling could last a good part of the day leaving my arm feeling tired. This had started about 3 weeks or so now. I didn't take it Sat night so as to wean off it and out in a nite of pure torture. Worse than ever I had before starting this medication. I have app with doctor on Monday so I'm hoping to get off this tablet completely or see what other options is available as I am Adament that I won't let myself increase the dose because if this is what happens on only the samllest of doses 1 x 0.88mg I dread to think what the outcome would be on a heavier dose. It really is only a quick fix. I wish my doctor would have given me more info on this or told me about augmentation or worsening of systems and I wouldn't have started taking this. We live and learn. Thanks for that .

[Ceilingdancer]

I've been taking M. For about 2 mo now. Side effects are bad. Terrible swelling of toes feet and legs. Very dizzy when I stand and walk around. Heart palpitations.....chills at night. Though these s.e. are stated....I'm going to try something else. I feel like M. Could give me a stroke