getting no sleep after stopping miripex

[Belsheart]

now I understand why so many of my friends here said an opiate of some kind was a necessity. As I weaned off of miripex, each time I lowered the dose I had a couple of days of trouble. But now that i'm off it altogether, my symptoms are bad in legs and arms. Baths are no longer helping. Any idea how long this goes on before you can hope to feel somewhat better....at least through the withdrawal? I'm on 600 mg gabapentin

[Hidden]

Oh poor you, yes a opiate would have been good to take at this time. it can take a few weeks to feel better from the withdrawals. I am sure Jools can give you some tips to help, she went through this and is really helpful to other members. But well done for weaning off the Mirapex.

[Belsheart in reply to Hidden]

Elise, thank you. Last night i questioned my decision four a moment... just a moment. But oh it's hard when there is no comfort. I will try involuntary dancers idea of doing something like clearing out a closet

[involuntarydancer]

Hi Belsheart and well done for getting off the mirapexin.

What you are going through is pure torture. Normally it lasts about 10 to 14 days from the last mirapexin tablet.

Gabapentin will not help at all with your current symptoms but it is probably worth persisting with because it takes a while to kick in and once the withdrawal exacerbated symptoms abate it might be very helpful. The only thing that will cut it with what you are going through now is an opiate.

When I was withdrawing from mirapexin, I did it without an opiate but it was absolute misery. I used a half hour long series of yoga stretches which sometimes gave a few minutes relief (and did make me very flexible) but really it wasn't much use.

I also set up a table in my room and used the extra time I got thanks to no sleeping to go through all the boxes of papers and stuff that had accumulated in our house over the years. I'm not sure I did any good as I was so tired - it is possible that I just took all the stuff out of the boxes, moved it around and put it all back in again because there seemed to be nearly as much left when I had finished going through them but it made me feel like I was doing something useful.

Be aware that it is possible to fall asleep when standing or even walking across the room. I hit my head a few times that way.

I hope you start to feel better soon.

[Belsheart in reply to involuntarydancer]

Thank you so much for your reply. It helps so very much. I'm going to call the doctor Monday and beg for some way to use opiate. I do have something called a bipap st, which is basically a ventilator for CENTRAL apnea (not the typical obstructive). It's a neurological issue that comes from my heart failure. I haven't used it in a year because my new cardiac device means i need oxygen but am actually breathing on my own now. But i know they don't want me on opiate for fear i will not breathe. So will ask if i can use the machine and take an opiate. Will you remind me what you take now for meds? Is it likely i will need to stay on an opiate. You've probably already told me, but I'm out of it

[involuntarydancer in reply to Belsheart]

Sorry not to reply sooner. I hope you got some sleep in the meantime. I have a relatively complicated regime of drugs as I find my rls responds better to a cocktail of drugs at a low dose.

When I was coming off mirapexin my sleep consultant prescribed lyrica which is an alpha-2-delta ligand like your gabapentin but it made no impact on my symptoms.

I eventually got a prescription for OxyContin (after about 3 months) and it got my symptoms under control. I didn’t get on well with it as a long term treatment though. I needed a lot of it to control my rls and I developped central sleep apnea. Also it caused me to be very alert at night even when the rls was under control. So I discontinued it.

I reluctantly tried the neupro patch (on the adamant insistence of my sleep consultant) and found I augmented on it quickly.

After much experimentation, now I take:

Pregabalin 100mg;

Dipyridamole (aka persantin) 125mg (this is a blood thinner which was found to have a positive impact on rls in

a small study that found a link with adenosine receptors);

Low dose naltrexone 3mg (it’s not having any positive impact on rls at the moment but apparently it can take months to really help so I am going to try it til Christmas. I think I feel generally better during the day thanks to it);

The combination of these drugs helps to muffle the rls but it still keeps me awake so in January (18 months after I discontinued it) I reintroduced 0.044mg mirapexin 5 nights out of 7. On the other 2 nights I use kratom. On the pramipexole nights i sleep really well. On the Kratom nights I do quite well though not as reliably.

Raising iron levels had a very positive impact on my rls. I also try to be disciplined in my diet and avoid dairy, meat, refined carbohydrates and sugars. I am not always wholly successful but definitely a plant based diet seems to be helpful.

Incidentally, if you are in the states you might be able to get Kratom. I have read that it can work really well for those awful withdrawal symptoms. I have found it as good as OxyContin for treating my rls and it doesn't induce physically dependence to anything like the same degree so that it is much easier to discontinue.

If you have a heart condition you could consult with your physician about taking dipyridamole. I find it very helpful in muffling symptoms. It completely vanished the creepy crawley sensations but it also helps with the urge to move. If you need a blood thinner anyway, you could maybe take this one.

I hope things begin to improve for you. Have you read the entries of Nick-the-Turk? He posted on a more or less daily basis during his pramipexole withdrawal and it makes fascinating reading - dark initially but then the gradual improvements. You might find it interesting.

[Belsheart in reply to involuntarydancer]

Thank you so much. I found an out of date prescription for codeine and took that.... so i slept some, thank heavens... though my hubby left the room because i kicked and twitched. I'm going to look up the person you suggested. I think kratom is now illegal here. Definitely will pursue blood thinner, etc. Thank you thank u

[Pippins2]

Hi just to add that I have both central and obstructive sleep apnea but I use cpap and I don't have heart failure so my situation is different to yours but I do take a low dose opiate which increases my number of apneas but only slightly. In fact I find that Codeine increases them more than the slow release Morphine. X

[Belsheart in reply to Pippins2]

Oh good to know. Will ask my doc. Thank u

[Pippins2]

Also if your in the States you could try the Relaxis pad, although results are variable and it'd expensive It may help x

[Belsheart in reply to Pippins2]

I want to try it.....but so expensive.