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Dopamine Dysregulation Syndrome
sparky1109 posted:
I was diagnosed with PD about eight years ago. About a year and a half ago I developed 'dopamine dysregulation syndrome" and stopped taking agonist drugs, but continued to take the replacement therapy (Sinemet). Stopping the agonist therapy helped at first and I voluntarily reduced the Sinemet by almost half the amount prescribed by my neurologist. I have improved greatly over the months but the impulsive behaviors will not subside. I live a kind of a Jekyll/Hyde (when the meds are "ON" or "OFF") existence and its ruining my marriage and driving everyone away from me. Reducing the Sinemet even further helps but leaves me bed ridden and in pain. Do you have any advice?
sparky1109 responded:
Dear Dr. Stacy and worn1,
After this last post I reviewed my previous posts regarding this subject all of which I had forgotten. I attribute my loss of memory to the psychoactive drugs I am taking. Bottom line is that my PD progresses as it inexorably must. Thanks for all your help and kind consideration.
worn1 replied to sparky1109's response:
Are you doing alright? I am concerned by the tone of your email. I do not know of any one with parkinsons that has not lost memory/words etc. So do not feel like you are alone. It took some time to convince my nuerologist but she finally agreed that I was having problems. It seems if you are younger than the age expected for any disease process the medical profession refuse to believe you can have that paticular disease----I work in health care and have problems getting doctors to listen. So I know it must reallly be frustrating for you. There are medications out there to help with memory. Check with your neurologist to see if one would benefit you. As far as the pain, discomfort and relationships go I take it one day at a time. Most of the time it is good. The only problem with people is they refuse to accept my limitations. They refuse to believe that I can not do as much as I once was able to do.I use to be the energizer bunny. Not just family but friends and coworkers also.
I just remember people tend not to believe what they can not understand or see evedence of. I am by nature an optimistic person and do not complain. If you had not been told I had parkinsons you would not know it.
Also I have one suggestion. When I am feeling depressed I talk to my 2 dogs. I am not looking for answeres just some one to listen and not gossip about what I am feeling. They seem to understand. Espcially Taz. She has sight in one eye and she isi deaf. It amazes me that she is always happy. If you live in a assisted living community check to see if they have a therapy dog. Believe it or not you will feel better after spending time with them.
Please email us back and let us know how you are doing

lovedogs1955 replied to worn1's response:
Please do listen to Worn1---I also have memory problems, pain and extreme fatigue. My family and friends noted changes in me often. I think one of the main things that bothers me is that when you tell someone, even people in the health care profession (and I am a disabled RN with over 30 years of experience), they tend not to believe me when I say that I have PD because tremors are NOT my dominant symptom. The tremors do increase when I am tired or anxious, however.

My dogs are also my therapy. I wear a leg brace because of severe foot drop and use a cane, but I am able to take my small dogs for a walk almost every day. I don't know what I would do without these 4 legged "nurses"!
sparky1109 replied to worn1's response:
It sounds like your PD is not as advanced as mine. Residents here are allowed to keep a dog of their own with a doctor's order however I have never been very fond of pets and my limited mobility would make taking care of a dog very difficult. You are absolutely correct about the stress caused by people who don't understand how you can be mobile one minute and immobile just a little while later. I currently find it impossible to walk or stand without having taken two 25/100 carbidopa levodopa along with 200mg of Comtan (the effect of which lasts a little more than 3 hours: the tremors that bothered me at the beginning of my PD have disappeared completely.) Trying to cope with this caused me in my increasing the meds and over time developing the problems involved with long term use of dopaminergic drugs. I am 58 years old and have no children. I moved into the assisted living facility just a year ago and my wife is moving on with her life. I have not been able to make many friends here, but I do see a therapist once a week. I guess there is not much advice anyone can give me. I find myself sitting alone in my room watching television and trying not to think of the impulsive behaviors that vexed me (although reducing the levodopa even more helps.) I can only hope that new research on the subject will set some light on it. Thank you for your reply.
sparky1109 replied to lovedogs1955's response:
I think that it's great that you are still working as a nurse. I was an accountant and was only able to work two years after being diagnosed. And, yes my symptoms increase with stress, in fact I think the disease was caused by stress. Thank you for your reply.
worn1 replied to sparky1109's response:
Glad to hear from you. Do you have gardens or somewhere you could sit out side. If so why not take up painting. or just listen to books on tapes, cd or on one of the new computer tablets. It would also give you a chance to meet new people. Have you thought about exercising in a pool. I know you can not do it on your own but there should be a trainer of some sorts who could help. Have you thought about the tandem bike? It usually takes me awhile to loosen up after sleeping but I have found the more I move the easier it becomes.
I'm sorry to hear you are not a pet person. Dogs attract people and break the ice so to speak. My shadow who is a border collie mix is a runner. Every chance he gets he escapes and introduces himself to the neighbors. I have met more of my neighbors since shadow came into our home than I had for the last few years. Working nites does not exactly leave me any time to socialize as my schedule is totally oposite of the neighbors. But that is going to change as I start working days on monday.
lovedogs1955 replied to sparky1109's response:
Oh sparky1109, I haven't been able to work as a nurse in over 5 years. My memory loss seems to be less obvious when it comes to things I used to work with or use on a daily basis. My husband sort of chuckles when I am unable to have a really good conversation and then when someone asks me a health related question, it's like a light gets turned on in my brain! I find that my morning coffee (with caffiene) gives me a good boost for a few hours. All of my doctors say that coffee is a GREAT thing for me!
eomgee responded:
My husband has had DDS for about two years. He hides his sinement and attempts access to as much as possible. He is impulsive, unsafe, and extremely difficult to live with. He has isolated himself from others because he prefers to experience life with an excess of the drug. When he takes an acceptible amount according to the doctor he looks and moves normally. He just does not like the feel. He had DBS surgery. If you are able to choose to take your medication correctly then maybe you should consider the surgery. He seems fine when he takes the medication according to directions so I believe the reason is the DBS. You may have the impulsivity part but apparently not the severe psychological part that my husband shows. Our marriage and family life has been destroyed. Contiune lloking for help. I am sure it is there if you are open to it. There is a new drug being tested for alcohol addiction. I think it is called netroxin. his psychiatrist gave him a prescription to see if it would help his impulsivity but he refused to take it.. asked you doctor .
Best wishes
susiemargaret replied to eomgee's response:
hello, E --

can you give me some info on netroxin or a cite to somewhere that can tell me about it in terms of parkinson's disease? are you sure this is the right spelling? i've been skipping around the internet but can't seem to find anything on "netroxin" spelled that way. is this still in trials/studies or an experimental drug, or is it on the market?

there is a med called naltrexone/revia, Oral.aspx?drugid=7399&drugname=naltrexone Oral&source=2 , that is used to help people drink less or stop drinking; it works by decreasing the craving for alcohol but needs to be part of a comprehensive program to treat alcohol addiction.

naltrexone is also used to help opiate ex-addicts to stay off these drugs (see PS) by decreasing the desire to take them and by blocking their pain relief effects and the feelings of well-being that usually accompany opiate use. naltrexone should not be given to people who are still taking opiates; it will cause immediate withdrawal symptoms. it should be part of a comprehensive program to treat opiate addiction.

is naltrexone the med you are talking about?

i send you and your family caring thoughts.

-- susie margaret

PS -- opiates are drugs containing or derived from natural or synthetic opium; the most common ones are codeine, heroin, morphine, and methadone. these drugs -- also called opioids -- relieve pain, create feelings of well-being, and induce sleep.
what good is gold, or silver too, if your heart's not good and true -- hank williams, sr.
eomgee replied to susiemargaret's response:
Yes I think you are correct woth the spelling. The drug was recommended for my husband to try because his situation (DDS) was so unstable and the psychiatrist at Univ of Penn though it was worth a try to see if it would help. My husband did not end up trying it.
sparky1109 replied to eomgee's response:
My heart goes out to you. You are a great and loving person not to have given up on your husband given the situation. It took three hospitalizations before I came to my senses and learned to get along on less sinemet. Now I am very reluctant to try any new meds much less surgery. My wife and I are now separated however she is still vrey much in my life visitinng once a week and handling my doctor visits and our finances.
I wish you and your husband good luck.

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