Stopped Mirapex, started hell!

[mtm19]

I stopped taking Mirapex about 4 weeks ago, I had a compulsive gambling issue linked to the Mirapex. I was on Mirapex for 15 years, started out on 1 - 0.25mg at bedtime, it was like a miracle. Over the years my Neurologist, who has very little experience with RLS , would just up my dosage as needed. At the time I stopped taking Mirapex, my dosage was 1 and a half 0.50 mg at 7:00 PM and 1 and a half 0.50 mg at 10:00 PM, a total of 3 - 0.50 mg tablets every night. My Neurologist told me to cut down to 1 - 0.50mg tablet at bedtime for 7 days , along with 300mg of Gabapentin, after 7 days I was supposed to stay on the 300 mg gabapentin, after the second day of just taking the 300 mg gabapentin, I had not slept but maybe 2-3 hours, I went to the ER , because my Neurologist couldn’t get me in for a week, at the ER they told me to increase my dosage to 2 - 300 mg tablets at bedtime, that too did nothing for my RLS , I thought it was making it worse, if anything. After 2 more days of not sleeping, I went back to the ER and told them I need to sleep! The Dr. at the ER told me he was going to try a sleeping pill, which I took, when that didn’t work, he said he would give me a shot that would knock out a horse, I forgot what it was called. He gave me the shot, about 30 minutes later my RLS was so bad I could hardly take it! I had to keep getting out of my hospital bed to walk around, but the medicine was making me so tired I could barely keep my balance. After 2 hours of pure hell, the Dr. gave me a 20 mg Oxycodone, about 1 hour later, I was finally asleep! I spent the night at the Hospital. Since my discharge from the hospital, I have been prescribed clanazepam, didn’t work! Trazodone, didn’t work! Carbidopa/Levodopa, didn’t work! Now I am scheduled to see a sleep Dr. in like 4 days from now. Can’t take it, up all night wiggling my legs and walking around. Will it ever get better???

[Madlegs1]

The only medications that will help you is an opiate, as you have already discovered.

You first have to cope with the withdrawal symptoms- which could take weeks, and then go on a regime for rls alleviation.

Gabapentin could be in that mix, but will do nothing for your present situation.

Tramadol or Oxy are the only things to get you out of your misery. But you need to find an experienced doctor to treat you.

Check out "Augmentation" and "opiate treatment for rls " on inet by Dr Mark Buchfurer/ dr Early.

Hopefully this can help you.

Also Matt Finch has good advice on coping with withdrawal, strategies , (don't fall for the hard sell) 😁

Good luck.

[Windwalker]

Maripex was another off label, that big pharma told doctors to give us. (They sold billions of dollars of it) I was on a12 year manic binge. Every vice was my right. Gambled excessively. Did everything else to excess.

Went to Requip (ropinirple) which has some of the same qualities, but am so in need of relief I will be on something the rest of my life. If you get everything correct with a doctor who is compassionate, start with a large regime of Methadone (inside a clinic or nutcase ward) and reduce it gradually until the RLS starts and then increase it gradually until it stops again. You can stay at the low level methadone without dose increases forever, but you must get it right at the beginning. Good luck in finding a doctor, a program and a safe place to get the dosage right without killing yourself accidentally within an unsafe environment. You cannot do this as an out patient and in patient facilities are rare, because doctors and most medical professionals don't see us as being seriously ill.

[Parminter]

Methadone.

[Parky1949]

It took me 90 days of pure hell to get off Mirapex, it proved to be a very addictive drug and my G P doctor didn’t have a clue to what he was doing.

[Tim61]

Hi mtm19,Tim61,

I posted recently about withdrawing from Pramipexole, which I’m doing at the moment, not very nice.

My GP eventually discovered I was suffering with myoclonic jerks, not restless leg syndrome. I saw him yesterday’ & he has agreed to try keppra ( levetiracetam) 250mg at night. I took the first dose last night & had a better nights sleep, & not so much leg jerking, so I’m hoping this will continue.

I’ve posted because I’ve read this very good article about Keppra being used to help restless leg syndrome, & periodic limb movement in sleep.

Levetiracetam (Keppra) can be effective in the treatment of restless legs syndrome, with periodic limb movements in sleep: report of two cases; G.Delta Marca, C. Vollono & S. Mazza.

I know you guys, know your stuff about restless leg syndrome, & may have read this article, but thought it was worth posting for thoughs who have suffered augmentation from Dopamine antagonist, & are looking at other treatments rather than opioids.

Hi mtm19, I wondered if this may help, try not to get despondent, I’m withdrawing from Pramipexole at the moment, & I’ve spent a lot of the morning in tears, because it seems like I’m going through hell.

Never stop looking for something to help your condition, you may be lucky eventually & find some help.

Have you tried magnesium spray on your legs, this may give alittle relief.

Best wishes Tim61.

[involuntarydancer in reply to Tim61]

Tim, this is REALLY interesting. Would you consider starting a thread about this as many people might miss it buried in here. I see from the study that Levetiracetam worked for (albeit a very small number of) patients who had very severe rls and for whom dopamine agonists AND gabapentin had failed. This notwithstanding that Levetiracetam is an anti-eleptic although apparently not in the same category as gabapentin/pregabalin.

Thank you very much for posting.

[Wonko_TheSane in reply to Tim61]

I second what id said - I have also been diagnosed with myoclonus before, and every new class of drugs might bring relief to some of us, and info about all types that have been effective for some should be made available and visible!

[Windwalker]

I started reading your post and it looked like something I would have writen about myself. I would say it like this looking back. i was at the end of my road, if you know what I mean. My GP was also a friend and confidant. When I confided that I was facing the end she got upset and called a girlfriend who had the same RLS except mine was and is 24/7. I had not been asleep for 8 days. Before the 8 day stint, I would drink a bottle of wine and sleep 2 or 3 hours, but I didn't like being half drunk and stopped. I had 3 brothers who were alcoholics.

The girlfriend was taking .25 mg Maripex. I got a prescription for the same and slept 8 hours straight, but I gradually increased the dosage with my Dr approval and after about a year I was at 4 mg. just at the edge of the maximum dosage without going crazy.I was on it for 12 years and was on a 12 yr high. Every vice and some new ones were so bad I almost lost my home which was once paid for. I was out of control with long periods in a casino. Winning and loosing were the same. The action was what was important. I almost hit the bottom before I was off the drug.

I have been of other drugs and none made me a as calm and high as Maripex and If I thought I could control the side effects, I would be back on it immediately, but I didn't before and what would make me think I could now, so I am limping along until something comes along that stops the RLS. I take enough drugs that would knock most people out and sleep poorly mostly sitting up, with the lights on and a low level T.V. noise, just barely getting by.

[Diz17]

I have been there also and had a major gambling problem and many other compulsive behaviors that are very unhealthy and made me suicidal. Methadone saved me and I would highly encourage you to go that route if you can find a Dr. To prescribe. It saved me amd I tried every other drug out there. Gabapentin tramadol etc etc. none of them helped me until I tried Methadone. Good luck and it can get better but don’t give up trying.