tiHellish night

[Whymelord]

hi,thankyou all for replying to me regarding Amitriptyline.took half tab.last night and the RLS was unbearable to say the least.I'm feeling so hopeless at present, no matter what I take nothing gives me ease.I'm very happy for those of you who have found a medication that works. Im very aware of augmentation from taking Pramipexole but im gonna try a small amount with one or two Co codamol. Maybe if i get a few RLS free nights i can skip the Pramipexole a few times.im having problems with high BP at present but i feel its a vicious circle all steming from RLS.

[Madlegs1]

Well- at least you know Ami doesnt work for you. Your doctor will be delighted to add your experience to his esteemed collection. 😝

I know you've read all the posts on augmentation and coming off Pramipexol, so I won't go on.

All the very best.

[RLSofManyYears]

I'm probably late to this but are you taking any Pregabalin? It's what should be used in the UK now. Pramipexole might be fine but only in small doses and only ever intermittently. When I need a good night's sleep then I have a small store of Zopiclone to fall back on. Doctor is very wary of it as it can cause dependency but I get 14 tablets at a time, which lasts me about 2-3 months.

[Chuck21]

I’ve had some success with Co codamol take 2 about 1 hour before bed this seems to work for me . Amitriptylene really agitates my RLS as does Valium . Was on lyrica for 3 years just weaned myself off them recently which was horrendous, as they were not working anymore

[SueJohnson in reply to Chuck21]

How much lyrica were you taking? Many people give up because they don't take enough.

[Mafopp5]

After about 30 years of Pramipexole and suffering serious augmentation I tried coming off them. Very dangerous and probably the same as a heroin addict doing ‘cold turkey’. I ended up with an equal mix of Pramipexole and Co-codamol. 3 of each 2 hours before bed.

[Whymelord in reply to Mafopp5]

hi Mafopp,thankyou for replying, what the heck are we to do,i know that when im walking the floor night after night, that i will try whatever gives me ease and relief from this horrible feeling.im gonna try,once again to see if half of 0.18 mgs Pramipexole and 2 co codamol helps for a while,hey a while is better than nothing.

[Cather]

I do have a great deal of experience with pramipexole, having been on it for 25 years. I did experience augmentation - a very slow augmentation. After 25 years, I needed more than .5 mgs to get rls relief. So I went off pram for 7 months. After 7 months, my rls was still preventing me from getting more than 4 to 5 hours of sleep a night. So I went back on - at a dose of .125 per night. This worked, with about 14 days off the pram, every 4 to 6 months. Now, after 4 years, I have had to increase the dose to .190 mgs. This is working, though not as well as I would like. So, here is the summary. I am one of the lucky ones who experiences a slow augmentation. I may go up to .25, hoping that will last me my lifetime (I am 80). I will not go any higher. But I may also switch to gabapentin (which might also help my arthritic back.). So be aware that pram does cause augmentation - the more you take the worse the augmentation. Drug holidays no longer work well for me. Thus, my possible switch to gabapentin. Having rls is a matter of experimentation: what works, what doesn't; what medication; in what dose. A final word: be careful with pramipexole.

[Whymelord in reply to Cather]

hi Cather,thankyou for your information and advice.i know the Pramipexole is not a good solution but im determined to keep to a safe dose and skip some nights of taking it with the help of co codamol and to make sure to deal with the constipation that this causes,its an uphill struggle day by day,we can just hope and pray that someone out there will find a cure or at least ease the horrible symptoms.

[Clarence1936]

I have had RLS for about 40 years and have not found anything that'd works very long. I am on Pram .5mg right now and increase it 1/2 tablets if I need to which is most of the time If my doctor will let me I am going back to Gab 300mg next weeks. and follow that road again. The best advise thud I can give you from my experience is don't get too heavy into anything It is very hard to get off the drug that doesn't work.

[Whymelord in reply to Clarence1936]

hi Clarence,thankyou for replying, i have had RLS for maybe 20 or more years, i was taking Pramipexole for a long time then felt i was augmenting, like you i have tried whatever was prescribed and other things that was suggested to me,things worked for a while then it was back to square one. I was prescribed Pregablin a few months ago,i didn't find it helpful, made me feel yuk all the time,did nothing to ease RLS,im halving 0.18mgs.of Pramipexole about 9ish then 2 cocodamol at bedtime, if possible i will skip the Pramipexole some nights.O LORD help us cope with this affliction,i do feel the terrible effects of not sleeping now that im older and not as strong in mind and body as i used to be.

[SueJohnson in reply to Whymelord]

If you get off pramipexole, I would suggest you try gabapentin. . Although they are basically the same drug except you don't need to divide the doses, and the side effects are basically the same, some people find that the side effects that bother them on one don't bother them on the other. And if the pregabalin didn't help, it may have been because you weren't taking enough of it.

[Marchand]

Co-codomol might help but the side effect is constipation

[Whymelord in reply to Marchand]

hi Marchand,im aware of the constipation caused by co codamol as i have experienced it but if im gonna start taking it again(2at night)i am determined to keep this problem in check,thankyou for replying.

[SueJohnson in reply to Whymelord]

You might try Naloxegol which is used for opioid constipation.

[topaz70]

Hi Whymelord. I am late getting into the conversation. My experience with pramipexol turned into a nightmare. My doctor kept increasing the dose until I augmented. I am also bipolar so the mixture of pramipexole and my anti depressants caused severe augmentation. I had to figure out what to do on my own. My doctor didn't want to help me try to get through this. She didn't have any experience with RLS or augmentation or bipolar. It was a nightmare coming off all my meds slowly. The people here gave me great advice but my doctor still wouldn't help me. I was suicidal. The only thing I had for meds was clonazepam. The best thing that happened was my doctor went on maternity leave. The doctor filling in for her started me on pregabalin two years ago. He saved my life. I have different meds for my bipolar and I take 250mg of pregabalin four hours before bed and I rarely have a problem with my RLS. I don't have any side effects that are worth mentioning. I am sorry for the the long post. I hope my experience helps you. Good luck in your search for finding the right medication for you.

[FLAME43]

you feel hopeless,and that is terrible. I do take parmipexole, half of now wth two Tramadol, three times a day, i know someone who has a similar routine with 2 dyhydrocodiene, we both enjoy Relative RLS free nights, I know my pill popping sounds heavy, but I will take whatever to help me with this merciless neurological disease. Been doing this routine for 4 years now, turning 80 next year, only people who dont feel the whole weight of Willis Ekbom (RLS) will tell me no good for me

[lovelakelife]

I take 0.25 mg of pramipexole at 6:00 pm and at 8:00 pm every night and it really seems to work for me. I have been taking that dose since I was first prescribed this med, about five years now with no augmentation issues. I am age 71 so hopefully this med will continue to do it’s job withou5 augmentation. I was taking Prozac for an antidepressant and found out that it intensifies my restless legs so my primary doctor changed my prescription to bupropion. I see Dr David Rye at Emory University in Atlanta for my rls. If I forget to take either dose of my pramipexole pills , I will know it within 30 minutes of going to bed. Then I am up for hours till my pills take effect . You can’t just take them sometimes, you must stay on a schedule! I have recently started taking a 300 mg gabapentin at 4:00 pm and right before bed for the neuropathy in my feet. So, I take both pramipexole and gabapentin but have not noticed side effects. RLS is a terrible thing to have and I have suffered with it since childhood but it worsened as I got older . At times I just didn’t think I was going to make it with getting no sleep or very little. I am so thankful that it’s mostly under control now as long as I don’t forget my pills. I hope this will help you some as I also know how horrible it can be !

[Cocosmum]

I haven't experienced augmentation with pramipexole. I continue to take 2 iron tablets( each 24mg ) on empty stomach in the morning, 2 pramipexole (each 88 microgms) between 5 and 7 pm, 2 cocodamol at 9 pm and another 2 when I wake during the night anytime after 1 am. If I stick rigidly to this 'cocktail', I don't have rls. I take 2 laxido drinks per day to counteract the constipation caused by the cocodamol.

Apparently, as you may already know, it's the iron store that is the issue, not the haemoglobin. I order mine from Amazon. If I can help any further please message me.

I am 67 and had had rls for over 40 years prior to this.

Btw both gabapentin and amitryptaline exacerbated my rls, as do antihistamines.

[Hidden in reply to Cocosmum]

Please think about taking the iron an hour before bed instead of morning. This may stop you waking up for more drugs in middle of night.

[Cocosmum in reply to Hidden]

I thought the recommendation was first thing on an empty stomach? I haven't slept all night for years unfortunately

[Hidden in reply to Cocosmum]

”Nothing ventured, nothing gained.” The iron relieves my RLS in about an hour - for one night. If I were to take it in the morning it would do nothing for my night time RLS.

[Cocosmum in reply to Hidden]

I am by no means a medical expert but am given to understand that taking the iron tablets maintains an increased level of ferritin, ie iron stores and are not an "instant fix". I am totally prepared to be informed otherwise if anyone can advise.