Restless Legs Syndrome

[Denm27]

Hi, after many years suffering with RLS, walking miles round the house during the night, stretching and everything else I could think of. I tried several drugs with no result, even tried hypnotherapy. Eventually I was prescribed Pramipexole 0.18mg tablets and I take 1, half an hour before going to bed. I've never had it again. It stopped on the first night, what a relief, over 6 months of being able to go to bed without thinking about RLS. Sleeping is now a pleasure again. Don't know if it will help anyone else, but it worked for me. A miracle.

[Neil46]

Hi Denm27, what a great feeling it must be for you. I am pleased on your behalf too. Just make sure the doc doesn't increase the dose. Let us know and we'll explain if so. Long may the relief last.

Best Wishes

Neil

[Denm27 in reply to Neil46]

Hi Neil, I started off on half the strength I'm on now and it wasn't right, but as soon as I went on this strength it was like a magic bullet. My health isn't great, but I keep going and walk 7 miles a day with my dog. I'm on Tramadol Gabapentin and lots of other stuff to deal with my heart, ulcers, severe pain and other problems. I've also been given between 18 months and 2 1/2 years to live due to an unfixable brain problem. But sod it all, if I can sleep, I can keep going. I'm interested by your comment, is there a problem with increasing dosage I should look out for? I'm obviously not a worrier and take 30 tablets a day to keep going. Thanks Dennis

[Neil46 in reply to Denm27]

Hi Dennis, you are taking Gabapentin as well? This is an exerpt from drugs.com:

"Using gabapentin together with pramipexole may increase side effects such as dizziness, drowsiness, confusion, and difficulty concentrating. Some people, especially the elderly, may also experience impairment in thinking, judgment, and motor coordination. You should avoid or limit the use of alcohol while being treated with these medications. Also avoid activities requiring mental alertness such as driving or operating hazardous machinery until you know how the medications affect you."

I hope you will be OK with this combo. No doubt your doctor has considered this issue.

Kind regards

Neil

[Denm27 in reply to Neil46]

Hi again Neil, I take them along with a large mixture of drugs, can give you a list if you're interested. I don't know about dizziness and loss of concentration, but I have been diagnosed with Vascular Dementia anyway. I just keep trundling along doing the best I can. Pain has been and still a large part of my life, but RLS made it not worth living. It's hard to explain to someone who hasn't had it, how terrible it is. Thanks Dennis

[Denm27 in reply to Denm27]

My list includes. Tramadol, pramipexole, Lansosprazole, Tamsulosin, Ezetemibe, Ramipril, Gabapentin, Magnesium, Fuldium-D3, E400, Folic Acid, Paracetamol, Clopidogrel. I rattle a bit when I walk , but never mind.D

[Neil46 in reply to Denm27]

I am sure you now know about augmentation; after a period of time (changes from person to person) the pramipexol is likely to stop working and the symptoms may spread to other parts of your body. Then a doctor will try to raise the dose thinking it was working before. We try to explain to receptive doctors (not all of them are) about DAWS which is Dopamine Agonist (eg prami) Withdrawal Symptoms = more pain, constant symptoms and can take ages to taper the prami dose down so it can be ceased. That, in your case, would be so unfair. I feel so helpless and would love to point you towards other magic bullets but I am out of my depth here. Do you have family and friends who can support you as time goes on? You will always have friends on these pages who understand a lot of how you feel. My soapbox subject is Low Dose Naltrexone (LDN) and you may find snippets of helpful info if you look this up. I have "The LDN Book" if you have questions I can look up for you; I would be glad to do so. And by the way I love the way you are in so much pain but wondered in your first post if pramipexole could help somebody else. That's spirit!!

Take care my friend

Neil

[Denm27 in reply to Neil46]

Hi Neil, I’m happily married, 49 years next April. Hoping to get to 50. My son has 2 great kids, 4 and 18 months, who we enjoy looking after. I’ve got a couple of great friends who go with me dog walking every day. Also a brilliant Saluki who takes a lot of my spare time, we walk 3 1/2 miles every morning, the same in the afternoon plus extra on many days. I walked 12 1/2 miles one day last week, but I was very tired after it. D

[Neil46 in reply to Denm27]

Hi Dennis. Tired after only 12 1/2 miles Seriously, you put me to shame. I consider myself pretty fit, mixing concrete, home improvements etc but I can't remember when I walked the 3 1/2 miles you can do twice. I am in awe of your vigour and attitude. Your enjoyment of life does you and your family proud. I am pleased to have met you through these pages

Neil

[Denm27 in reply to Neil46]

Hi Neil, what I do isn't special, the distance I walk is nothing compared to what my wife does. She often walks the 3 1/2 miles in the morning with me, then walks 6 or 7 miles with her friends and then comes with me in the afternoon. She does this 3 or 4 times a week. Along with walking the other days with me and she's had cancer. It's mind over matter, if we don't mind, it doesn't matter D

[Denm27 in reply to Denm27]

Hi Neil, did you make any sense of the list of drugs that I take? Dennis

[Neil46 in reply to Denm27]

Hi Dennis, I recognised a few of them. I stopped Lanzaprazol when I looked it up on the internet. Nasty drug, but I am certainly not qualified to give an opinion on your drugs. i would probably do a lot of harm (a little knowledge and all that).

You seem to be well balanced drugwise, considering your activities; whatever anyone says YOU are the expert in your own feelings and pains. Considering your walks do you get lovely views and fresh clean air? I don't know where you live of course. I live in a coastal town and can walk by the sea myself.

Neil

[Denm27 in reply to Neil46]

Hi Neil, my home is on the edge of a town, so I walk out of my back gate straight into the countryside. I don't expect to change any of my drugs, but have a review later this week with my doctor. I know I'm addicted to Tramadol, been on maximum for 6 years and wis I'll early in the year and couldn't keep anything down. After 2days I had the shakes and everything. But when I was able to take I again I was fine. It's no big price to pay as I feel fine, but am still in a lot of pain, but determined not to allow it to stop me doing anything. D

[Denm27 in reply to Neil46]

Hi Neil, done 12.7 miles today, beginning to think it's not a good idea, really tired again. It's a shame, only do it when we have our granddaughter here. We take her out in the pushchair to get her to sleep, perhaps I should try a hammer

[Neil46 in reply to Denm27]

No, a pushchair is much quicker

[Gmc54]

Please research pramipexole and augmentation.

[Denm27 in reply to Gmc54]

Hi Gmc54, I've taken your suggestion and read up about it, thanks for that. I've so far had no problems and have only got between 18 months and 2 1/2 years to live according to the doctors, so hope it will hold on that long. Thanks again Dennis

[jonjo]

I am on Pramipexole. I take 2 tablets each one is 0.088. Sometimes I ave a good nights sleep sometimes not. ONe did not work for long so I asked the doc for increase but this doesn't work some nights. I took them earlier and I have just been running around like someone demented when rls sstarted suddenly. I used to be on clonazepam and they were fantastic for about 2 years but unfortunately I got used to them and then they didn't work. I have not been on pramipexole very long but not that good. I try to keep notes on what I eat as something must trigger it off. A fortnight ago I went 6nights and never had it but then it came back with a vengence and I get annoyed because I can't find out why. Hope you are lucky and your rls doesn't come back. joanstorer.

[Neil46 in reply to jonjo]

Hi jonjo, I was given Clonazepam a couple of years ago and I had to stop within days. I can't remember why but I think it gave me mini fits. I took several different meds around that time because neither I nor my doctor knew about augmentation. That is why I love this site. I have had good advice and support and managed to taper off the DA's and am now on pregabalin, which seems to suit me and I am happy and can actually sit and read a book!

The magic acts are: get serum ferritin, magnesium, potassium and sodium readings from a blood test at the doctors, gentle exercise during the day but not late at night, half an hour's reading and no computers before bedtime. This is no cure but will help.

May i add that 2 prami tablets should be the max and you will need to change meds if you feel they stop working. You will get help about that on this site, thank you for reading this essay End of sermon.

[Denm27 in reply to jonjo]

Hi, I was advised to take Magnesium, Folic acid and E400 for rls. I did, but wasn't sure wether it helped or not. But when I got on Pramipexole 0.18mg it was great. I haven't stopped the other things, frightened to change anything .D

[Hidden]

Denm27,

Hi. I don't really know what to say here, so I'll just say this: I really admire your strength!!!

[Denm27]

Hi jess 3648. I'm really not much to admire, I'm dropping to bits really. After 4 heart attacks, 3strokes, arthritis in my spine, osteoporosis, an ulcer and a hiatus hernia, vascular dementia which limits my life span to approximately 2 years. Whatever could go wrong? I'm just determined to carry on doing what I want to do. Some days I do too much which puts me in terrible pain, I then decide not to push so hard again, then I get up the next day and say sod it and off I go again. Why waste what bit of time I've got left by worrying about the future, I take my future 1 day at a time. Every time I wake up in a morning, it's a good day. Thanks for texting, it's nice to find new people, I don't do Facebook or twitter. Dennis

[Hidden in reply to Denm27]

Plodding on in the face of adversary and not worrying about the future -- that's what I admire

You're not alone in wanting to push yourself, as I have a hard time with that as well. I'm actually working with my psychiatrist on being kinder to myself! Who knew doing that would be so hard? I'm slowly getting better at it, though.

Take care,

[Denm27 in reply to Hidden]

I packed up working 5 years ago aged 64. I was extremely depressed , on drugs for it and had decided that I was no use to anyone and they would all be better off without me. I had decided that suicide would be the best option

[Denm27 in reply to Denm27]

I had chosen the how, the place and was just waiting for the time and didn’t think it was far away. I packed my job in and for some reason bought my dog. As a family we have always had 2 dogs, all rough collies, ( the large lassie collies). Things changed, I had a reason to go on and thing’s got better and better. It’s hard now to understand how I got so low. It will never happen to me again, you just need the spark, an interest, something you enjoy to do. It really isn’t as bad as you think, but can be hard to see past your immediate problems. I hope you can find a way to get through it and know you will be much stronger if you can. Take it from an old man, someone out there would be devastated if you don’t get better. And delighted when you do. Good luck. Dennis

[Denm27 in reply to Denm27]

I’ll try to figure out how to put a picture on of my dog

[Denm27 in reply to Denm27]

Got it, put the picture next to my username

[Neil46 in reply to Denm27]

Hi Dennis, most anti depressants and rls drugs do not mix. No wonder you were so low. I am pleased you are so "up" now. Did you get off the anti depressants or did you find a compatible drug?

Neil

[Denm27 in reply to Neil46]

I got off the anti depressants as soon as I could, which was as soon as I bought a puppy. I then has something to live for, a much better solution