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TNdad

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TNdad    122

Daven and PatriotM,

 

Thanks for the advise. I've just backed off to the 1mg Neupro patch. Well see how it goes, I did notice a marked decrease in tremor despite the nausea with the 2 mg patch. Fortunately I'm off this week so I can try med adjustments out of site. PatriotM, (like the name by the way), I feel exactly the way you do. Unfortunately, my tremors in right hand and now right leg are becoming quite noticeable and I'm afraid that without taming them a bit I would soon have difficulty at work. I'm only 49 with three teenage boys at home. I'd had dreams of retiring early from my very stressful job, but not this early. I'd like to hold on a few more years.

Lu states, I just ordered the anti nausea drug on line from amazon. It's from the UK. I'll let you know if it's real deal or if I got suckered.

Not that expensive for a trio run. Fingers crossed, (well sort of crossed).

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Lu States    83

please do.  i don't know yet if i even WILL be nauseous, just wanted to have something on hand in case, and an alternative to something better if the med. i take, outweighs the nausea, in terms of controlling symptoms i would like controlled.    made me laugh at " sorta crossed " !  ha, love it !

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christie    1,049

Some more info on domperidone

 

 

This is an interesting article on the use of domperidone as an antiemetic in PD.

 

http://www.ncbi.nlm....pubmed/19094160

 

Domperidone is the drug of choice for  DA or levodopa-associated nausea/vomiting. Plus it's one of the most effective prokinetic agents, commonly prescribed to increase gastric emptying in patients with gastroparesis.

 

http://www.ncbi.nlm....pubmed/23147521

 

http://www.ncbi.nlm..../pubmed/9177513

 

The ONLY downside with domperidone-as with several other anti-nausea drugs- is its cardiac side effects (prolongation of the QT interval).  however, these are mostly associated with intravenous administration of higher dosages (higher than 80mg/day or even higher than that).

 

So, it may be contra-indicated in patients with heart rate abnormalities, or when other drugs which prolong the QT interval are co-administered.

 

The lowest dosage should be tried at first (10mg, three times a day), always under the guidance of a physician.

 

In some patients even a single dose of 10mg/day may be enough to block DA or levodopa-related nausea. In general, we should use the lowest possible dosage which relieves nausea and use this drug short-term only, until drug-induced nausea subsides. (within a few weeks/months drug-induced nausea subsides in most if not all patients).

 

http://www.ncbi.nlm....pubmed/23522959

Edited by christie

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Lu States    83

thanks again christie, i will read up.   as my dr. told me, the gastrointestinal side effects ( if i get them ) do go away, so there would be no long term use of the drug you suggest.  a relief to know.   also, it would be monitered by my physician, as you suggest too, because that is how i assume i would be getting it, and also because i have been completely honest with my regular physician for the good 25 years i have been going to him.  i NEVER lied about how much i drank ( a lot before i completely stopped ), ate, exercised etc.   how can he know what is really going on if you " shade " your real self ?  i am the same with my neurologist.  love taking lowest dose for anything to start, then raising it if the need arises.  seems the best to me, too !   so again, thank you for the articles, i love " information ", and get annoyed ( hahhah ) when i can't think of any subject to google and study !!     lu 

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TNdad    122

Just curious,

 

How long after your initial diagnosis was your follow up appointment with the neurologist?   I know they are extremely busy and it can take up to 3 months for the initial visit.  I've got lots of questions and feel kind of in limbo land.  I was given a bag of samples, and told the order in which to take them and that was it.  I think that because I'm a physician in the same hospital, the neurologist thinks I know what to do.  I don't.  I'm a pathologist and used looking in the microscope, not self treating for YOPD.  Are their particular questions you guys wished you had asked on your first or second appointment?

 

Thanks

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DaveN    425

I was seeing my first neurologist about every 6 weeks.  Unfortunately, we were getting no where and his examinations lasted maybe 5 minutes if I was lucky.  He did order all of the tests to rule everything out, such as a head MRI, EMG/NCS, Sleep Study.  All tests confirmed what I had already new.  My current doctor I see every 3 to 4 months.

 

Dave

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PatriotM    797

I'm seeing my neurologist every 6 months. 

 

As for your questions, I would be willing to bet that the neurologist would extend you a little "professional courtesy", since you're both doctors in the same hospital.  I would call him and ask your questions.  He might need a similar courtesy from you some time in the future, when someone he knows needs a little extra service from the pathologist.  I would be upfront with him and tell him that you know absolutely nothing about PD and would like detailed answers to your questions.

 

Also, if you have specific questions, you could also ask Dr. Okun in the ASK THE DOCTOR section of this website.

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TNdad    122

Thanks for the replies.

My primary care provider has arranged for me to see another neurologist in her practice for a second opinion in a couple weeks. In fact, I prefer to see docs that I don't work with or see every day around the hospital. There is mutual respect and I appreciate their courtesies, however I find the best medical care is often rendered by docs that see me only as a patient. I don't think that I'm alone in thinking this way.

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TNdad    122

Has anyone ever had good results with any of the dopamine agonists or with mao-b drugs. It seems like a lot of people try them at first then switch to sinemet . I know there is no clear cut answer. Just wondering if it's worth going through the hassle if the end results are usually the same.

 

Thanks

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Lu States    83

christie, tndad, etc.  finally started my sinemet  (  i never hedge on taking prescribed drugs, but i did with this one ), and my nausea is mild....i am so pleased !   annoying, but not hateful.  i sat in my drugstore parking lot crying, because my groceries ( with paper products, laundry soap, all THAT stuff ) had just cost me $70.  i didn't want to have to buy any anti-nausea medicine if i didn't have to, and i only picked up the one prescription, even though i had others there.  i even read the side effects sheet given to me, which i hardly ever do.  i was fascinated to read i might sweat red, brown, or black !   ha !   it was only the nausea that i was really thinking might happen, so i was a big baby and waited one more day, even after not picking up the prescription for 3 days.   i have had a mild headache too, something i only get when my head bobbing gets really bad.   so, i lucked out.   thanks for your suggestions, i had them at the ready to buy if need be.   i don't know where you all live, but in my tiny burg, we got over a foot of rain in 5 days, and almost 4 in 24 hours.  it was amazingly loud...not on the roof loud, just the rain itself.  so stuck here as i was, glad i had bought my sinemet to get started with, and glad no horrid side effects to suffer through while un-able to make it ( floods here ) back the 5 miles to drug store to have gotten relief.   yay !   now, let's stop running into walls and falling down, sinemet do your thing !!

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miracleseeker    668

Lu,

 

Doesn't Mirapex put you to zzzzz?  I have decreased my mom down to 1.50mg a day now and she still zones out.  She also takes 150mg Stalevo 3 times a day with it but everything is crushed because she won't swallow meds whole.  I know this means she's getting it all at once which can explain why she's loopy and high after each dose but still Mirapex makes her very sleepy and I do believe is the cause of her mind going south.

 

By the way are you taking Mirapex generic?  I tried that for my mom and it didn't work well for her so she's on the name brand version which is very expensive.

Edited by miracleseeker

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DaveN    425

Miracle Seeker,

 

I was taking Mirapex early last year from Dec 2012 till about March 2013.  It was very effective on managing my tremors at the time and allowed me to function with more energy some times.  The problem I had was as the drug wore off, I was exhausted and would fall asleep at the drop of a hat.  I had no choice but stop the drug even though it was helping me be more productive other times.

 

Dave

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miracleseeker    668

Hi Dave,

 

That's weird cause Mirapex lasts longer than Sinemet.  They all lose effectiveness over time which is why you have to take more.  If it worked for you then why stop?  You just time it and take it when you know it's wearing off.  I tried the patch on my mom but due to her dementia she would rip it off cause.... she felt like it.   Mirapex is/was a good drug but over time it will rob your brain cells.  That's my conclusion.

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Lu States    83

 MIRACLESEEKER: i took mirapex for my RLS, and it was a godsend.  when i started, i worked late at night, and took this tiny pill so it would be kicking in when i went to bed, and the sleep was a miracle.  when i was diagnosed, he upped my mirapex.  i remember asking him how would i ever stay awake, and dr.p  said that i would build up a tolerance and it would help my symptoms, and not put me to sleep anymore.....true to his word, that is what happened.   however, if i am " prone " and not doing things, it can put me to sleep easier than if i wasn't taking it.  i had to pay for the " generic " when my insurance was kicking over, and it was over $500. un believable !  the generic is called pramipexole, and it is all i have ever taken, and works well.  i have used 2 different mfg., and the one before was maybe better, but that was when i was first taking it....now living in this sleepy town, almost all of my generics are different.   perhaps a price point because they are so small. no walgreens etc., just a small drug store.  still seems to work though, and as i said, it mostly effects me when i am lying down to read or watch TV that i get really sleepy.  i am not a person with lots of energy anymore, so it is hard to tell if i " mosey " around more because of p.d., mirapex, or what.   when i waited on tables, well, once you get flying around getting things done, believe me, you are wide awake !   i never had any problem driving, or shopping, or anything, but trying to take an afternoon to read or something quiet, would effect me.  i hate naps, so this bugs me.  i will say this, my yawning was huge !  so often, and so " big mouthed " that my jaw would hurt, but even that is gone now.  i guess it would be different for those who sit, even at a job, because you are already in a relaxed position.  restaurant work was different, so i can't compare.  by the way, i take .5o mg 3 times a day....now adding in sinemet for the first time this week.   DAVE, i find it curious that you get logy and tired AFTER it wears off....just curious is all. i never noticed where my malaise came from.   MIRACLESEEKER : my brain is a mess .my dementia is getting worse all the time, but is it the fault of mirapex, or another wonderful symptom of this disease ?   my brother takes mirapex, and we started about the same time ( he lives far away, and we just never talked about our RLS until one fluke day, when we discovered we both had it ! ).  he has a very high I/Q., and is still smart as a whip even though he has been on it for several years like myself.  so my stupidity is related more to my pd i believe, than the mirapex.  i still have " sharp " days, except for memory, so i do relinquish the dumbing down to p.d., because it isn't constantly bad.  memory, a goner.   lu

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dbogler    12

So sorry. I remember the day I was diagnosed. It sent me into a very deep depression. And I still struggle with it. I would say the 3 things that have helped me the most are:
 

1. PD doesn't define who you are. Get the best movement disorder specialist you can and follow his advice. But other than that just try to act like you don't have it and go on living

 

2. Look around at some of the poor crippled folks out here that have smiles on their faces. When I start feeling sorry for myself I go to Walmart and go though a specific check out lane where this guy in a wheelchair with deformed hands checks me out. And he is smiling. Watching him makes me feel like a big sissy. Next thing you know I am not feeling sorry for myself any more

 

3. Exercise helps not only physically but mentally

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miracleseeker    668

Dbogler,

 

You are a newbie.  It would take years before it gets worse for you knock on wood.  There is nothing to be depressed about for now.  I really think the disease is not as bad as the medication you take.  That's what will make you feel worse later on.  Sorry to be so negative.

 

Lu - I really think it's Mirapex that's causing the brain fog.  Inactivity of the brain of course will cause it to go worse.  Your brother probably uses his brain more than you so he's not as bad.  My mom never did anything that required thinking and liked it that way.  Well there you go....   wow, your brother has it too?  No one in my mom's family has PD so it's all a mystery to them.  Some of her siblings thinks it's contagious so they never call or come over anymore. Whatever!

 

I'm going to ask her doctor for Amantadine and see if it will help with the drowsiness.  20 hours a day with her eyes closed is not productive.

 

I'm glad the generic works for you.  Yeah the name brands can cost hundreds per month.  Crazy!

Edited by miracleseeker

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TNdad    122

Does everyone here see a movement disorders specialist?  There are not many at all in my neck of the woods.  I will probably have to drive at least 3 plus hours to get to one of the care centers with MDS docs.  I was just wondering what others real life experiences have been?

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miracleseeker    668

My mom is on govt assistance.  Movement specialsts do not take charity cases.  We quit 2 nerologists cause they were useless.  She's just seeing her family doctor now since he can prescribe the same meds and there is no new drugs out there so makes no difference to us.

 

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Lu States    83

miracleseeker :  i never said my brother has PD, i said that he and i both have RLS ( restless leg syndrome ), for which we both take mirapex, plus i take it for PD as well.  i also think you are making a huge assumption that my brother uses his brain more than i do.  if nothing, having a disease that makes it sludge-y makes my critical thinking much more difficult and therefore harder and more strenuous than what is so easy for him.  his area of expertise is math, mine is in the arts.  he sends me math puzzles to do, which i do, because i know they help.  i also work at a multi-million dollar estate for a month out of the year, where i am in charge of all the staff, all the workers i decide to bring in, explain the projects to, and make sure the work is done properly.  i am in charge of the entire system interfacing, and it is done " right ", even if i have to struggle harder to clear everything to perfection in my own mind first, through the " fog ", to make sure no mistakes are made.  i find your assertion condescending, and because your mother doesn't enjoy thinking, doesn't mean that i don't.  i paid the huge amt of money for a GENERIC mirapex, and i pointed out that there are different manufactures for generics, and some may work better than others.  you want to believe that her symptom of sleeping 20 hours a day is mirapex's fault, well, do.  please don't make assumptions of the drugs effect on me.  i have taken it for years, and have tendered the effects it has on me very well.  i know the way my mind is changing, i live with it, and the disease, so i recognize how it is getting muddy, and when. some days i find it much rougher to think than others.   we all are effected by this disease in many, many ways.  i won't make assumptions about why your mother doesn't like thinking, or whether the mirapex affects her negatively, and i would hope you would not assume mirapex affects me in a way i find it doesn't.  dbogler, if you were very depressed by your diagnoses, my guess is you are not alone.  seems perfectly natural to me, as it did my neurologist who thought i might get depressed at the diagnoses.  i get depressed by circumstances i am in, but not the PD itself.  that is just me.  i think you have found a way to help with it admirably.  good for you !  TNdad, i do not have a movement disorder specialist, if that answers your question in any way.     lu states

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DaveN    425

Hi Dave,

 

That's weird cause Mirapex lasts longer than Sinemet.  They all lose effectiveness over time which is why you have to take more.  If it worked for you then why stop?  You just time it and take it when you know it's wearing off.  I tried the patch on my mom but due to her dementia she would rip it off cause.... she felt like it.   Mirapex is/was a good drug but over time it will rob your brain cells.  That's my conclusion.

 

Mirapex was just the opposite.  I was able function at work much better and be productive.  The problem,  I fell asleep at the wheel at a traffic light on the way home from work one day.  Every day at work, I'd fall asleep at my desk.  I get paid to produce not sleep.  I'm the sole provider for my family with one daughter already in college and another one heading off to school this fall.  Mirapex just wasn't for me.

 

Dave

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miracleseeker    668

Oh no Lu.... so sorry I didn't mean to offend you.  Of course I wasn't saying that you were brainless.  I just mean maybe your brother used his brain TOO MUCH.  I had an uncle that had a stroke and he was a doctor and lawyer and we think he was overloaded.   We all have a history of what we did in the past and in no way did I mean to say you did nothing with your life.  Mirapex made my mom sleepy.  I didn't say it does it for everyone but most everyone I've heard from said yes it makes them out of it. I didn't read  your post clearly so I got some of the info wrong. Oops...

 

No hard feelings ok?  My mom however really did nothing with her brain so I was talking about her and was switching over to her completely.  I didn't mean to include that in the same sentence as you. My bad.  Peace?   I don't know you so of course I'm not going to make assumptions about you or insult you in any way.  You're my TV trivia buddy right?  :)

 

 

 

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Lu States    83

sorry back...think i might have over-reacted a bit....have been thinking so.  i feel cranky with this sinemet headache, mild though it may be.  :) back attcha

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miracleseeker    668

Emails are hard to judge what people really are saying.  I'll be more careful with my words in the future and also will be less active here.  It's for the best.

Happy with  your meds or not like what you take.  Blame it or don't blame it.   I will not comment either way anymore.

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