Getting ready to sue

[windmiller]

I am working a civil case because my ex with RLS on Mirapex can't cognitively understand what you are saying after 9 in the morning. He spread vicious lies about me. Telling everyone he was watching me have sex with other men in our home. (P.S. Did not say this to me or anyone else when still together - just after split.) He hallucinates and has vivid dreams. Started out with Mirapex at 6-8mg over ten years ago and last I knew cut down to 2mg. I have to sue to get him to stop. the judge and attorneys look at me as if I am making this all up but have proof of his lies. He is on so much meds and he smokes and drinks he barely remembers what he did the night before the next morning. Always asks if it is OK to drink on all of his meds. My ex has lost all of his sexual function but appears to have developed hyper-sexuality (Side effect of Mirapex.). I have lost my home, my retirement and many friends because of what he has said. Some of the friends we barely see once in five years but his ramblings seem easier to understand than the truth I speak. If anyone is willing to document their experience on Mirapex that I can present in court, I would grateful to you for ever. Leave a message here of how to get in touch.

[badnights]

Hi windmiller. I have moved your post to a Topic of its own, so that all answers relevant to your query will end up here.

There are a number of members who developed or watched a partner develop Impulse Control Disorder from taking dopamine agonists (a class of medications that includes ropinirole/Requip and pramipexole/Mirapex). (For those who don't know, ICD causes the affected person to fail to resist the drive to engage in a behavior that causes distress or impaired functioning, and can include hypersexuality, pathological gambling, compulsive shopping, and compulsive eating.)

It is a bitter hard thing to have happen, and to have friends and even doctors not understand that the medication can have that effect is heartbreaking.

[Chipmunk]

I am so sorry. That is just awful.

I definitely noticed compulsive behaviors when I was on Requip. I would feel like I needed to eat, even though I knew I wasn't hungry. It was the weirdest thing--it's hard to even describe.

Here is a link to an article about a Mirapex lawsuit in Canada. It says that the manufacturers have paid out for 300 Mirapex-related claims in the U.S. Maybe there is something in those successful suits that your lawyer could use when bringing your case?

[ViewsAskew]

I am so sorry. That is just awful.

I definitely noticed compulsive behaviors when I was on Requip. I would feel like I needed to eat, even though I knew I wasn't hungry. It was the weirdest thing--it's hard to even describe.

I echo Chipmunk's sentiments.

I had to comments that I had the same as Chipmunk with pramipexole. I was constantly heading to the refrigerator, as if my mind had taken over my body. I'd "wake up" and tell myself to go sit down. But, after 20 times, I'd find myself eating without realizing I was. In the 18 months I was on it, I put on 25 to 30 pounds.

I am taking it again - albeit differently and very carefully. I had lost about 20 pounds and since starting it, I've stopped losing. No gain yet, but it's a constant fight.

[badnights]

I know someone who gambled away his kids' university educations while on Mirapex. It's a very hard thing for him to have to live with, in addition to having a disease (for him it's Parkinson's). But the most heartbreaking stories are of doctors not accepting that someone's overeating or gambling or other problem is caused by the DA. Such a massive black hole of ignorance, and the patient is usually in no condition to be the educator.

[Polar Bear]

Absolutely .... regarding compulsive behaviours.
Daytime is fine - in the middle of the night I have a track to the fridge. Crackers and strawberries, cookies.... toast.....
In another thread this compulsion was referrred to as the 'alien'.

[sleepdancer2]

Just in case someone is keeping tabs, add my name to the list of one who experienced these behaviors. Eating - yes. Would even get up in the middle of the night and cook. And I had a blend of shopping and gambling. I shopped at thrift stores and yard sales, always looking for that golden egg. It was a shopping issue in that I almost rabidly spent money and time I shouldn't, but the type of shopping was gambling. Always anticipating getting something of great value with little investment. I knew I had a serious problem when the nursing home called me to say my mother was not doing well, and while rushing to her side, I made an unplanned stop at a thrift shop. At that time I still didn't know about the medicine connection, so I had to just live with the shame of my actions. Once off the meds, the compulsions stopped. Had a once frugal family member with Parkinson's who was online day and night shopping - to the point he had several of the same items (that they would NEVER use) and would angrily defend his purchases. Some might wonder why it is so important to me avoid pharmaceuticals unless absolutely necessary. Between the hells of augmentation and compulsive behaviors, I'm more than a bit gun shy.

[Aipulu]

I would like to share my story about impulse control on dopamine agonists. I have had RLS for 20 years. About 10 years ago I had a prostatectomy. My wife was a physician and she thought that cabergoline, a dopamine agonist drug that is used in Europe for RLS is also used by some to increase libido, might be good for restoring sexual function lost due to the surgery. I quickly developed hard to control urges to go on pornographic websites, to engage in degrading fantasies and to compulsively masterbate. These did not decrease when I went off Cabergoline and back on Mirapex, at the 1 mg dose. I got into BDSM and, while married, I perused profiles of women on BDSM sites and even arranged some trysts with women in my area and in areas where I was traveling. I also engaged in a two year romance with a woman in Europe, whom I was able to meet in different places twice. I was on the internet during the day at my job and then tried to stay late and work on weekends to catch up. But my focus dissipated and my productivity declined. My wife became suspicious and had her son break into my email. She found all the correspondence I had the women with whom I had been meeting. I confessed all and we tried counseling but the relationship was too ruptured and we eventually divorced. I was in a highly sexual relationship for a year and didn't act out much. But when that relationship ended I was back on the internet. This time I didn't contact any women, just voyeured their website profiles. This continued into a new relationship, one that I am still in. I retired earlier than I would I like but I couldn't get my productivity back and this was hard on my self esteem. A year after retirement my partner caught me one day on a website and I confessed to what I was up to. Later I joined Sex Addicts Anonymous, of which I have been a member for 2 years. But I still struggled with BDSM fantasies and compulsive masterbation while in SAA. Finally I recently decided to try to get off Mirapex to see what would happen. I went down to 0.5 mg by increasing Neurontin (gabapentin) and using Ultram (tramadol). Remarkably my sexual compulsions vanished. The daily urges to masterbate are gone. I am elated. I was also hoping that my night eating disorder that developed during this same period would vanish. I read with interest how others on this conversation have struggle with overeating. But my compulsion to eat at night hasn't vanished. Gabapentin also can lead to weight gain so perhaps this is the reason. Perhaps I need to get off both Mirapex and Neurontin. I was in denial that Mirapex at the 1 mg dosage could be responsible for my sexual addiction even though I knew that it causes hypersexuality in 6 -17 percent of dopamine agonist users. I was convinced that it was a character defect. I now know that dopamine agonists like Mirapex and Requip have led to horrible consequences for me, completely our of character. I urge others to share their situations. I don't think the drug companies are going to help us out. We need to help each other.

[ViewsAskew]

I feel lucky that all I did was eat my way to 50 pounds heavier while on pramipexole (added to the 20 I'd gained when I quit smoking). I work very hard not to gain more, but it's difficult to lose. The toll these drugs can take is truly phenomenal.

The most current recommendations are that NO ONE with WED/RLS take more than .25 mg of pramipexole PER DAY! I still see so many of us on much, much, much higher dosages, which leads to yet another problem, augmentation. I dearly wish doctors would get up to speed about these drugs and not use them as they have been (and do).

I hope all of you who've shared are in much better places now. You've truly been through more than anyone should ever have to.

[Aipulu]

ViewsAskes, I had not hear about the recommendation that no one take more than 0.25 of pramipexole per day. Where can I find this? I am currently on 0.50 mg of Mirapex (pramiprexole) and while the sexual side effects seem to be gone, I may still have augmentation and also I have put on 40 lbs since going on Mirapex. I am considering switching to opiates. IN particular the oxycodone-naloxon combination seems to offer the best treatment of all in a research trial.

[ViewsAskew]

The Clinical Management of Restless Legs Syndrome, second edition is one place to find it. Another, I think, is a paper written by Dr Buchfuhrer last year, IIRC. I think it's in the signature line of one of our members/moderators - badnights.

If you go to http://www.rlshelp.org/LettersReplies.htm - a site run by the same doctor mentioned above - you can see hundreds of letters written to patients. If you search on pramipexole, you will find numerous times he recommends this.

His reasoning is that there is little addtional help with a higher dose, yet there is a MUCH greater risk of augmentation. Keeping the dose low (and your serum ferritin at least 75 and preferably over 100) helps tremendously to prevent augmentation.

[badnights]

The buchfuhrer paper in the second link in my signature. He recommends it clearly there.

[Aipulu]

I long ago passed the point where I needed 0.25 mg of Mirapex. I have been on 1 mg for years, And I have had augmentation for years. But now I an transitioning off Mirapex and onto Gapapentin Encarbil. The drug doesn't cause impulse control issues and augmentation. My plan is to go off Mirapex completely for at least 3 months to reset my dopamine receptors. And then to try adding back in 0.25 mg of Mirapex. My reasoning for this is that I read in Night Walkers about 2 years ago that both the dopamine and GABA systems are impacted in RLS and that using drugs that increase the availability of both neurotransmitters was showing promise. I then added 300 mg of Neurontin to my Mirapex and, sure enough, I got better sleep, including more dreams. Gabapentin is good for lower stages of sleep so presumably I was getting more State 3 and 4 in addition to more REM sleep. Interestingly, when I did a sleep test over 2 years ago, I go zero stage 3 and 4 sleep. So if anyone has any comments about adding back in some Mirapex to work with Gabapentin Encarbil, please chime in.

[Rustsmith]

I am a believer in a dual medication approach to the treatment of RLS/WED. I suspect that each of us has different levels of the urge-to-move, pain and insomnia. Dopamine agonists (DA) do very well with the urge-to-move side, but don't do a lot for the pain/insomnia symptoms. Gabapentin/Horizant/Lyrica (alpha-2-delta) do well with the pain/insomnia symptoms but may not be as effective for the urge-to-move. All of these drugs have significant potential side effects. It would therefore seem to me that if you can minimize the dose of each by using both a DA and an a-2-d medication, then you are better off all around (provided that the RLS/WED is successfully controlled). How much of each medication that is appropriate could then be adjusted to individual needs by the significance of the urge/pain/insomnia ratios. Some people would need more DA for the urges and others more a-2-d medication for the pain/insomnia. The question of which DA or a-2-d would then be addressed based upon side effects.

The only issue with you adding Mirpapex back with Horizant is that it is generally not recommended that you go back onto a DA medication once you have augmented. So, rather than going back onto pramipexole (Mirapex), you should consider using either roprinirole (Requip) or rotigatine (Neupro). Since you saw some sticker shock with Horizant, you will get a similar shock if you check the pricing for Neupro.

[ViewsAskew]

Just me perspective...I wouldn't want to be on ANY dopamine agonist exclusively or without a break. I augmented terribly on pramipexole but currently take it without issue. I just take a break every week - so 4 or 5 on it, 2-3 off of it. It can't build up, I don't augment.

As Steve is, I am also a fan of dual medication approach. Or triple. We can often get different components we need. We can also rotate them. Anything we do to cover all symptoms and prevent dependence and augmentation are good things.