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Topic Dopamine Dysregulation Syndrome Go to previous topic Go to next topic Go to higher level

By dear2 On 2012.03.24 18:53
In a quickly evolving set of circumstances, my husband was diagnosed during a crisis as having DDS. The neurologist immediately lowered the Requip dose to lower the compulsive drive to overtake the dopamine to get the desired "high" that they observed as "manic" while in the clinic yesterday. Once Requip is lowered over the next three weeks, she says he will find it easier to reduce the dopamine. She stressed the importance of reducing dopamine so he doesn't go into psychosis. I also discovered during this meeting that the neurologist who met with him in February wrote comments regarding his concerns about the behavioral issues and that he should see a psychiatrist. I had another appointment that day so I didn't know about this and my husband didn't tell me. I was told that he may need a visiting nurse to dispense his meds, as he is dealing with an addiction and may not be able to do this on his own by following the prescription orders. The manic behaviors are incredibly stressful and unbearable to the point that I can't take it anymore. What I do understand now is that my husband is out of touch with what he is doing and can't help this. The situation can be reversed by following the doctor's plan. If he continues to abuse the dopamine he could end up with psychosis. He's been an early onset PPD patient for 20 years so he's been using dopamine for a long, long time. The Compulsive behaviors have been increasing over the past year-and-a-half: eating, shopping, drinking, and now dopamine (in this order).

Though some of this information came as a shock, it is a relief to know it can be reversed. I will be following the advice given by getting a social worker to work through the details of what the doctors recommend. Also, we have the counselor we've been seeing for several months for support who has been encouraging my husband to have the doctors look at his medication. Though I'm scared, I feel some relief and have renewed hope that it will get better.

By Reflection On 2012.03.25 08:51
It will get better.
I had never heard of "dopamine dysregulation syndrome" before I informed my husband's doctors about his manic behaviors.
My husband gradually got off the requip (he was taking enormous doses) and a lot of his most disturbing behaviors disappeared. On requip, he was combative, abusive, scary. Major impulse control issues. Falling asleep at bad times with no warning. etc. etc.
Now, he still has Parkinson's, but I'm not scared of him any more, and I now recognize that when he was in that dopamine dysregulation state, I was afraid, all the time, and walking on eggshells not to set him off.
Given that - the nurse to give medications might be a very good idea. You know your situation best, but you may not want to get between an addict and his drugs.

By parkinit On 2012.03.25 17:05
I wonder if this would qualify as someone who should be admitted to a rehab type facility. He needs the drug, but needs to titrate down from them. It would provide the control that needs to be in place for someone addicted to any drug.

By Reflection On 2012.03.26 09:14
I wrote a lot about dopamine dysregulation syndrome here:

http://www.myparkinsons.org/cgi-bin/forum/topic_show.pl?id=3079#18462

and here:
http://www.myparkinsons.org/cgi-bin/forum/topic_show.pl?id=3072

I am a nut case on dopamine agonists, or, rather high doses of them. I also note in these posts, dopamine dysregulation can also happen with plain 'ol levadopa, though less frequently, and usually less severely.

BUT - at low doses (under 6 mg/day) some persons with Parkinson's find them very helpful, and do not suffer the crazy side effects. So this isn't a blanket condemnation of these medications, my concerns are dose related. I think some Persons with Parkinson's are so scared of the potential side effects of dopamine agonists, they don't take them, even if low doses would help them without causing significant side effects.

By drshepard On 2012.03.26 22:39
My husband was just taken off Requip. As he became more OCD, OCPD, sexually charged, shopping...he began to hallucinate, became delious and then went into psychosis. He also has a REM-sleep disorder where he would storm down the hallway saying a bomb was going to go off. He started manipulating everyone around him and he also began to fall and I couldn't get him up. Cognitively, he really struggled and I was afraid he was getting dementia. The doctor's went into full swing trying to treat the side effects and before we knew it he was taking Seroquel, Flumoximine and Klonapin. Then he couldn't walk well at all. We put alarms on the doors, gates across the stairs, locks on the doors. It was a nightmare and neither one of us got out of the house for months. Taking him off Requip was a God-send but they had to increase the Sinemet.. His mind is clear. He is currently in a rehab where they are reintroducing medications, as needed. He still gets some hallucinations and psychosis but not as often. But, now I don't have to worry for a few weeks. What a wonderful break, but just doing a let down from the burnout. That Requip is some pretty scary stuff. I do have to say that Seroquel really has been pretty effective at reducing pschosis.

By mylove On 2012.03.27 00:36
How much are we talking, "enormous doses"?

By Reflection On 2012.03.27 10:52
If memory serves, The Mayo Clinic study showed that 20% of those on "therapeutic doses" of 6mg/day or more of Requip (Mirapex has different dosing) had notes in their medical records about impulse control disorders. The study noted that this is probably an understatement of the actual incidence of impulse control disorders, since patients often either don't mention or deny them - so they don't appear in the medical record.
My husband was at 9mg/day very early on in his Parkinson's - a year after his diagnosis. Over the next 4 yours, he talked his movement disorders doctor up to 60 mg/day. The maximum that's been tested in PD is 24 mg/day. He was extremely secretive, and would not let me go to doctors with him, so I only found out about this after grave damage had been done to our family.
That's why I would urge any caregiver dealing with this to set a boundary - that you must be allowed to attend his doctors appointments, and communicate directly with the doctors. I think they should have known something was seriously amiss - he walked like the energizer bunny, he had pressured speech, he had a hairtrigger temper, etc. etc. - all utterly uncharacteristic for him. But, somehow, neither his movement disorders specialist nor his geriatric psychiatrist saw it, until in desperation, I wrote them. I paid for that, big time, but they did finally get his medications to where his personality is not scary. He's not the person he used to be, but he's one hell of a lot closer than on Requip.

By dear2 On 2012.03.28 08:10
In retrospect, now that I have read about DDS, unreasonable symptoms have challenged our life together for a year and a half. The past nine months have been continuous and unreasonable levels of daily stress trying to cope and maintain normalcy around the manipulative, compulsive, and delusional behaviors. He is so argumentative, talks incessantly, verbalizing every thought that goes through his head. Groaning, growling, stimming by flapping his fingers together like you see in autism, slapping his knee loudly over and over with his hand when he is wound up, and gyrating as his body over-reacts to the dopamine with dyskinesia. Eating constantly, consuming spoons full of sugar and sweets, falling because of impulsiveness, spilling, dropping, and incredible levels of noise and stress infused into our home during every one of his waking hours.

Communication is the worst of this. He lives in his own mind, is addicted to his computer, and it is difficult (and sometimes impossible) to even get eye contact. He throws out words that I'm supposed to decode and put together to understand what he means in a mess of words, and states he is doing this and assumes I should be able to understand him. He interrupts others, doesn't have patience for them to finish, assumes what they are going to say, and clips in with his own statements. He often states one thing, then reverses to the opposite or another position so one comes away with no clear understanding of yes or no. He is unable or doesn't care to relate as man and wife. His touches are rough, fast and nervous twitches, and I am on guard as he approaches me because he lunges and moves in such fast and uncoordinated motions, all as a consequence of too many meds above what the doctors say he actually needs, but he's enjoying the "high" of his medication, which is all that matters to him. In many ways, he acts much like people on the autism spectrum. Having been interrupted multiple times, I raise my voice to continue my own sentences but I'm wasting my energy because he can't focus and probably won't remember what has been said or what we eventually decide when he finally tires of arguing, anyway.

I feel like a fool, and only know what he tells me. I shoulder 90 percent of the responsibility for our life together, take the blame and get badmouthed to his friends and his mother, whom I've now distanced myself from for self-preservation. His friends only liquor him up and send him back on the road to drive in his disabled and dysfunctional condition. During a surgical procedure last week, not one of his so called "friends" even checked in. My support system was sending emails, and calls, and text messages. So thank God for my family and friends! They kept me going at the most critical times through this.

I feel like I am living with a 6' 3" toddler with OCD, ICD and hyperactivity that goes into these dreamy monologues about how he's going to make all this money with these imaginary real estate deals, and has the power to do real damage, he wants, without any concern for consequences or other people. Meanwhile, during this build-up with DDS, he's bought several vehicles, 14 guitars, a ton of recycled goods through a thrift store. I finally persuaded him to sell and called the same thrift store to haul most of it back, but it almost took an act of Congress to get him to do it. We simply don't have the floor and storage space, especially with mobility tools. He complains that he isn't "going to be under my thumb".

Meanwhile, I'm at the breaking point in trying to keep our lives together. He denies he needs a caretaker, denies we need help, cancelled his follow-up appointment with his own neurologist that the neurologist that saw us during the crisis on Friday told me to make so his own doctor can carefully follow this reduction plan in his medications. He refused to lower his meds as he was instructed to do on Friday, so this morning I told him I'm done with his craziness.

I accepted a new job that I'm very excited about and it will take me out of the area. I'm looking for housing where I can have peace. I told the counselor today that I will engage the social worker we were advised on Friday during the crisis to utilize and have them direct and decide whether he is taking his drugs as prescribed, needs a caretaker in the house, a visiting nurse to dispense his drugs, and whether he should drive any longer. I will monitor from a distance. He will probably thrash our home but he will be in familiar surroundings that should logically help him do better. However, he wants to start drinking Vodka again and will probably do so, increasing his falls and other behaviors. Since he drives, he has access to whatever he wants.

I will then be able to choose how much daily contact I have with him, and to ensure my rest and not let this mess of a situation dismantle my professional life or responsibilities. I am looking for a two bedroom set-up so when he is with me he will sleep in his own room. I will still have to remind him to use the toilet when he visits so he doesn't pee out in public, but I will not include him in my business relationships. There are too many embarrassing experiences to go into here.

Now, having taken these steps, today he suddenly decided to lower his meds. Tonight he was calmer, more like his old self. He said to me as we were settling to sleep, "I feel calmer. I think I feel better with the lower dose. I don't have dyskinesia or tremor" Yet, he argued passionately with the neurologists who evaluated and diagnosed him with DDS, me, and the counselor that he needs all these meds. What can I trust? I want to do the right thing, keep my commitments. One day doesn't demonstrate a pattern for change. Honestly, I am numb and moving forward, and I have no idea where this will end up three months from now.

By Reflection On 2012.03.28 08:42
dear -
you have done a very difficult thing, and - sounds weird, but well, I'm proud of you. For both his and your long-term health and sanity, you are doing the right thing.

One book I found very helpful when going through this was:
Codependent No More: Beyond Codependency by Melody Beattie
http://www.amazon.com/Codependent-No-More-Beyond-Codependency/dp/1567312187/ref=sr_1_6?ie=UTF8&qid=1332937924&sr=8-6

It's for people who love, enable addicts - but that's what you have at this point, even though there's less "fault" involved because dopamine is highly addictive. That book can strengthen your resolve to set boundaries that will help you, and probably him. I'm not into "therapy" talk - actually kind of allergic to it - but I found this helpful.

Parkinson's is a rough and very long road. It makes me mad that unnecessary stuff - like DDS - can make it even harder - the PD itself is bad enough. Your description of your guy sounds so much like my guy when he was on the dopamine agonists. Be strong. Stand firm. Good luck.

By susger8 On 2012.03.28 12:23
dear2, that is a horrifying story. I think you are doing the only thing you can. I don't know if I could have stood those conditions as long as you have. Best of luck, I hope things improve for you.

Sue

By dear2 On 2012.03.29 00:00
Thanks for your support, Reflection and Sue. I've ordered the book online from Amazon that you recommended, and so appreciate the sharing of what helped you. I really feel creepy and have this sunken feeling in my stomach, yet my mind tells me this is the right thing to do under the circumstances. I just wish it felt better doing it.

My husband took the reduced levels of drugs again today and reports feeling even better, is surprised his voice is better, and that he is no longer choking on his food. I'm skeptical, but tell him that's good that he is seeing how the reduced amount of drugs is helping him.

My housing is set-up, and I'm lucky. I have put my husband's information down as a visitor, but he is not listed as being on the lease. This is to protect me, in case he gets crazy and I need some legal leverage. The counselor is also a mediator in the criminal justice system. I am turning over all financial records and other documentation regarding the DDS diagnosis in a written report from the neurologist during meetings with my husband so I have a third party to oversee the financial circumstances as he guides us through decisions.

I've told my husband I won't make financial decisions except in the presence of this counselor. The counselor has agreed to continue meeting with me by conference calls when my job starts, and my husband in person.

My husband accuses me of trying to cheat him out of money and "dumping him" as he calls it. I've told him over and over that's not the case but I see through his behaviors and excuses and won't deal with this BS anymore. I can't afford the cost of the lifestyle he insists upon having with his delusions about money. One of us needs to work. I tell him it will be his behavior that determines our outcome. He's choosing the results by how he acts with me and whether he follows the doctor's prescriptions and orders.

His mother is 90 years old and i have met with her, provided her a FAQ sheet on DDS, and explained that I am still committed to her son and love him and will do my best to facilitate his needs in the most reasonable way. I think the most use I am to her, as I told her, is to try to shelter her from this. By maintaining the family home, he will have his own space to do his own thing in. Otherwise he assumes he will just move in with his mother, as he tells me over and over. I don't think he has had this discussion with his mother. His family of origin includes an alcoholic father, sister who died at 32 of hepatitis due to drug and alcohol abuse, and he's had a steady use of alcohol, and marijuana before we met.

Someone asked how much is a lot? I would have to go back to the doctor's reports. All 4 neurologists said he is on a huge amount of sinemet and too much requip. They also stressed this doesn't happen to all PD patients. Only some patients as L described in his response. People who aren't observing this shouldn't freak out at what I am describing, because only a small number reach this, and it is unique to my husband's body makeup.

By susger8 On 2012.03.29 07:47
He wants to move in with his 90-year-old mother? Good heavens. If you are having a really hard time dealing with him, I'd think his mother would end up hospitalized.

Sue

By dear2 On 2012.04.04 11:41
Update:
My husband has been following the doctor's orders to lower his doses and continues to be surprised at how much better he feels. He hasn't fallen or gone into choking episodes, sleeps better, and feels calmer. He's much easier to live with as long as he doesn't become agitated, then he is impossible to be around. He continues to rapidly drop weight (probably the dyskinesia from too many meds). The compulsiveness has lessened, yet he is still impulsive when it comes to the eating and sugar/sweets, interrupting other people's speech, and charges ahead when he walks (he has quit running).

His mother, he says, has told him she doesn't want to live with him. I hope she is strong enough to hold to this boundary. The caregiver has offered to make meals at night, a good idea to stabilize his diet when I am away working during the week. He is linked into supports through our church, and still denies he needs a social worker. Our counselor will continue to work with us, me on the phone with the two of them from the counselor's office.

My housing is set within walking distance of my new office, and just under two hours from home where my husband will stay to be near his mother. From here I can have peace while I work. The book on co-dependency arrived from Amazon yesterday, so I will begin reading it this weekend. Meanwhile, I am completing a project on my consulting contract and packing my tools and essentials for next week, while coordinating logistics of the move around my own physical limitations.

Though there has been a huge black cloud dampening my joy through the sadness of the past year's problems, I can now see the light on the horizon.

By Reflection On 2012.04.05 10:06
Thank you for letting us know how it's developing. And I'm so glad that you have summoned the strength and courage to do what you know you have to do.
This is a marathon, not a sprint. There are no quick fixes, but I believe things will be quite a lot better for you, and for your husband.
I lived in fear for years, because of my husband's dopamine dysregulation syndrome. It is terribly draining. I will never do that again - it does no one any good, and my bearing it allowed him to continue in a dysfunctional path for a long, long time.
Both of us are better now, though permanent damage has been done.

By parkinit On 2012.04.06 09:11
Courageous. That is the one word I thought of when I read your posting. I had a sampling of this awhile back and it is a nightmare and ended up with my spouse being in the hospital, the hospital wanting to release him, and me saying, "You don't understand . . . if you're going to release him to me in THIS condition, I won't be home." It was harsh, but it kept him in the hospital long enough for them to not simply "catch and release," but actually try to identify the problem - which I had no idea WHAT the problem was at the time.

Hang in there and my hat is off to you for your fortitude and strength.

By dear2 On 2012.05.01 01:53
Update:

My husband has now reduced his dopamine intake to 33% of what he was taking when the DDS crisis hit us both and he is a different person. Calmer, hasn't fallen in almost a month, quit choking on his food, and his speech is 60% clearer. He structures more complete sentences so he can be understood (no more decoding required), regained his attention span, and has quit running down the supermarket isles behind a shopping cart. He is able to relate to another person and express sincere empathy again.

Really, the change in him is remarkable. All the time he has been reducing his intake, he continues to protest that none of us know what we are talking about and that he needs all these meds. (even this past weekend). Later, he comments on how much better he feels without the higher dose.

The side effects of too much Dopamine was worse than the PD symptoms he actually has. The stimulator is now carrying most of the work in mitigating the PD symptoms.

Now that I understand this side of over-medicating, I would never let this get so out of control again. I believe the change has saved our marriage and despite his protests would never hesitate to call the neurologist if signs of this return, right away.

Got through the awkward discussions with his family successfully, I think, about what is going on with this.

Life is returning to normal again.

Caretaker is helpful.

New job is good.

By susger8 On 2012.05.01 07:52
Wow, that's great! I'm so glad that he has improved.

Thanks for telling your story. It might help someone else in the same situation.

Sue

By karolinakitty On 2012.05.01 19:38
Awesome dear2.....

Can't wait until my guy gets off this requip too....It didn't change his personality or have any ICD's but the physical side effects were driving him "nuts". The daytime somnolence, the no-sleep nights and a few other things....
I am gathering some facts from other parkies in regards to Requip, from those with higher doses of 12mg or more/day. We are going to send a report to the FDA concerning Requip/Mirapex and the fact that some doctors are over-prescribing it. I remember someone here stating that their loved one was doing like 60 mg/day...the limit that they even tested was 24mg...and those that did have that large of dose had tremendous side effects.....

we have found in our own generalized study that those on lower does of 4mg or less per day have had no serious side effects and also those who have only been on it 2 years or less....Those who have been on it for more than two years in increased dosages not only have had the ICD's but personality changes and other various side effects not even listed. We feel the FDA should look into this as this is widespread not just here in the states but in the UK and other European countries.....at least we have the FDA to purpose something too...many other countries do not.....

By dear2 On 2012.05.03 23:32
My husband was taking 1200 ml. + of dopamine per day. He did not reduce the requip. I hope this answers questions posed earlier as to how much is a lot.

By LOHENGR1N On 2012.05.04 00:57
While 1200 mg a day sounds like a lot of dopamine many people take this much or more. myself I'm on 1250 mg of levodopa (dopamine) per day, however I do not take requip or mirapex etc. Requip is a drug that has some of the same effects as levodopa and does interact with it. So it only makes sense that taken in conjunction both will enhance the other and equal increased results. As we say all the time each one of us is different and tolerate drugs differently but it makes you wonder why things have to come to crisis before some one stops and looks at the medicines being prescribed.

By dear2 On 2012.05.05 23:12
The paperwork from the VA neurology appointment records a 1500 ml per day calculation along with 12 ml of requip. This represents the doses being taken at the height of the DDS symptoms. The 800 ml per day of dopamine plus 12 ml requip per day is the dose he is currently taking and is much calmer and easier to live with now. I hope this clarifies the questions regarding meds and this DDS diagnosis by 4 neurologists who saw him.

By parkinit On 2012.05.06 20:36
I've been through what you've gone through and I'm scared right now myself. My PWP's neurologist just upped his pills to 1350 per day and he does 4 mg patches of Neupro and wants to increase that. My PWP asked the neuro what was his upper limit for dopamine and he said, "I have no upper limit."

I've expressed to our home health nurse that this attitude frightens me because we've had poor results at higher levels of pills and that my PWP seemingly has very poor judgement and a general lack of concern for his own well-being when he took elevated doses of Sinemet with an adjustment to his DBS in the past.

Again, this is all so scary. How do neuro's not know this about the dopamine dysregulation?

By dear2 On 2012.05.08 00:55
I hear you, but objectively, the neurologist only sees the patient for a very short period of time, so he doesn't see the hyperactivity that builds towards dinner hour and into the wee hours of the night. My husband still denies these behaviors, doesn't perceive himself the way others do, so it feels a little crazy to see it and experience it at these high hyperactivity levels and have the person doing it not see or perceive it.

I also was reluctant to say very much because my spouse reprimanded me for swaying the neurologist's understanding, telling me I was influencing their perception incorrectly. He told his mother this and she bought into this for a while, too. I felt like I was out on a limb and didn't know what to say or do, or who to say it to, in order to get help. I was at the breaking point, in tears. It shouldn't be this way. Maybe the regulatory agency can look into this and educate doctors or set guidelines, as it has been suggested here.

Should symptoms resume in the future, I will pick up the phone and talk with the neurologist. This I am now solid on.

I think I needed a course or coaching in what to say and how to say it, to my husband and his healthcare providers, and how to handle the bantering that follows when I made my experience with this finally known to the doctors who care and prescribe these medications.


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