need advise please

[maesllan5]

Hi all,,,,, been taking pramipexole for 2 years, then doc put me on ropinirole 1mg 2weeks then 2mg done that for 6 weeks NOT working at all, going to docs in the morning. Will I have to wean myself off Ropinirole before I start an other drug??????? I've got tramadol which I take when I'm desperate which alot these days. I got pot which does help!

I'll let you all know how thing s have been going with the RLS documentary in the new year, really tried to tell how sleeplessness interferes with daily life! BUT was tired that day not really sure what I said rambled on seemed like a long time!!!!! Hope I haven't let you all down :(.

MERRY CHRISTMAS to you all X

[Pippins2]

Hi, when you stop the Ropinerole you are very likely to experience an increase in your RLS as you withdraw from the dopamine.Most people need a strong painkiller to help them to come off a dopamine med.As you already take Tramadol then maybe that would be a good one to use if you find it helpful.Whatever you do dont go any higher on the Ropinerole dose as you are already on the maximum new recommended daily dose.Many take Tramadol as their regular RLS med.

If your doctor changes you over to Neupro patch then as its another dopamine med you shouldn't have any withdrawal RLS.Let us know how you go on.

[maesllan5 in reply to Pippins2]

thank you Pippins2 I think my doc would welcome me to be able to guide him at this stage, but I'm so confused no sleep!

[Pippins2 in reply to maesllan5]

Maybe Tramadol and add in gabapentin, sometimes meds from 2 different drug classes works best.Hope you get some sleep soon.!

[oldblue in reply to maesllan5]

hey there maesllan. iam oldblue from the usa. I know what ur going thru. I was taking pram. and quit it cold turkey and went into flipping maniac fits for about 2 wks after pipps told me the side effects it had on my rls, insomnia, amnesia, unusual dreams ( cracker jack dreams I mean weird dreams ) etc. I just have gotten over augmentation and hope it helps. I would go as many as 3 sleepless days and nights without one second of sleep before fatigue would take over and I might get 3 to 4 hrs. without waking up. I went to my neurologist 2 wks. ago and he put me on gabapentin and iam getting little more sleep now. the sleep has helped me physically and mentality. I feel like working in my shop and walking in the woods etc. sure hope u get some sleep. until later oldblue

[maesllan5 in reply to oldblue]

thank you Oldblue, off to docs now, will iet you guys know how I got on

[martino]

I wish you Happy Christmas too. I couldn't manage pramipexole or ropinirole but tramadol has been really helpful plus clonazepam when I go to bed

[SteveT]

Hi

I am on pramipexole and have been for years. I reached 5 tablets and they weren't working well at all. I saw a neurologist who put me on amytriptlene combined with co-codimole. I take two pramipexole with one amytriptlene and two co-codimole at about 5 pm and repeat it at 9 pm. My RLS HAS virtually gone. I can't believe it, I have suffered really badly for a long time and now I have my life back. Long may it last.

[Pippins2 in reply to SteveT]

Great to hear how well you are doing Steve but just wanted to point out to other members that Amitriptyline is poison to 99% of us and can ramp up RLS to new highs.Glad its helping you though but you are in the 1% that does not get a worsening of RLS.Long may it last for you.

[nightdancer in reply to Pippins2]

Yes, see the list to avoid for meds for RLS on rlshelp.org Every once in a while a person can come along that can take Amitriptyline, but it is rare. Like Pippins said, for 99% of us it is poison and is high upon the "no no" list. That is the drug that my retired doctor gave me for prevention of migraines, and that is also when my RLS went NUTS. he doubled the dose and I was ready, literally, to throw myself out a window, had no idea what RLS was at the time, 20 yrs ago. It is not recommended for RLS in any way, but once in rare while someone comes along and it does not ramp up their RLS. There are many better things to try, and there is no RLS expert or specialist in the world who would or should recommend using tricyclic antidepressants or the SSRI's like Prozac or Paxil. They are not good for 99.9% of all RLSer's. Steve T, I also think the pain meds are what is helping your RLS more than the other, but that is the usual pattern, so you are one of the lucky ones. Lots of people take pain meds to treat RLS.

[SteveT in reply to nightdancer]

My apologies, the last thing I want to do is mis lead someone. It is working for me at the moment but obviously the big message is sufferer beware. Sorry if I have advised wrongly for most people.

[Kaarina Administrator in reply to SteveT]

I am in the minority that taking a low dosage of Amitriptyline does not affect my RLS and you, Steve, may be one of the minority too. I am not being prescribed it for RLS so was surprised when I found out a goodly time ago that it is not a good idea to take this if suffering from RLS.

As is so often mentioned on this forum, we are all different and what works for one with RLS does not help another person at all and may well aggravate symptoms.

Kaarina

[maesllan5]

Hi doc put me on Gabapentin & Tramadol took 1 tramadol 50mg & gabapentin 300mg 2 days in & and suffering day & night, I can after 5-7 days take 2 gabapentin, will try 2 tramadol later today. Doc said I could go on these meds without weaning me of Rolpinirole! thank you all for replying and the advise. XX

[Pippins2 in reply to maesllan5]

Hi Maesllan5 any luck with taking the 2 Tramadol? The Gabapentin is currently at a very low dose, doubt it would have much effect at that level.I am one of the few that Tramadol and Gabapentin did not help(and I got the Gaba up to 3,600 mg a day.There is a new med , recently licensed in UK for RLS, its called Targinact, maybe you could try that one.Good luck

[maesllan5]

Hi Pippins2 No the 2x Tramadol didn't do much for me, Doc says he does not want to see till the 21st Jan! Hope your enjoying the hoildays XXX

[Pippins2 in reply to maesllan5]

Ah sorry to hear that, maybe you could bring the appointment forward?

[maesllan5]

I know I need to give it more time to see if this will work for me!, had friends and a few drinks last night ( did have some sleep :)) normally when do have a drink no affect on sleep what's so ever, so 2X 50mg tramadol and 1x 300gm gabapentin it is till I can up gabapentin in 2 days. If I go back before the doc has told me to try these drugs he would not want to see me! making the most of the holidays as best as I can. Hope you all are able to do the same XXX