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Found 11 results

  1. Hello Dr. Okun, I have had PD for 19 years. My main problem is severe tremor that is not adequately controlled by medications including madopar. As a last resort, my neurologist started me on clozapine a year ago which significantly reduced my tremors. However, the severe side effects (increase blood glucose, excessive weight gain of 31 lbs) led me to stop clozapine despite being on the lowest dose (12.5 mg BID) for a year. Needless to say my tremors returned with a vengeance and I suffered severe muscle cramps. I notice now that I can no longer tolerate madopar as my shaking has worsened. The shaking after taking madopar is characterized by 2 distinct episodes : Episode 1 occurs only sometimes 15-20 minutes after taking madopar, my head and limbs shake violently and my neck muscles become tight and stiff. This goes on for a short period. Episode 2 (wearing off period) occurs without fail: 2-2.5 hours after taking madopar, my head, limbs shake shaking severely and continuously and my neck muscles continue to go tight. These episodes last up to 45 minutes to an hour without fail following each dose of madopar. During this period, I will also experience nausea and start retching. I also experience a strange, whooshing sensation in my head. As episode 2 occurs without fail, I have developed a phobia for taking madopar. I am currently prescribed on madopar: levodopa (200 mg), benserazide (50 mg) 5X daily. But I am taking it 4X a day because of the adverse reactions described above. I feel much better without taking madopar but the downside is that I can barely walk. In the morning (before my first dose), my body feels relaxed but once I start, I experience the uncomfortable side effects of taking madopar. This has been going on for over a month. I do not understand what is happening to me. Why am I reacting to madopar in this way? Is this life-threatening? I have arranged to see a surgeon for a DBS consult but it will be months before we can move forward with this if I am approved. I would really appreciate your thoughts on this. Sharon Lee
  2. My mother has been diagnosed with Parkinson's for about 10 years. About five months ago, she started having these episodes she calls "fever face" where her face and neck flush blood red, she gets very hot, and her blood pressure spikes very high. These episodes can last for hours and often is accompanied by a headache, nausea, and frequent urination. She turns a fan on her, puts an ice pack on her face, bathes her face with a wet washcloth, and drinks ice water. We have been to the ER due to the blood pressure spikes and they put her on blood pressure medication which is not helping these episodes, even when she takes extra. She also takes anti-anxiety medication. She has been hospitalized and that did not work out as they took her Parkinson's medications away. So - now she just endures this but is not functional during these episodes. She just lies on the bed waiting for it to pass. None of her doctors (to date) have been able to tell us why this is happening, what to do about it, or if it could lead to a stroke. I appreciate any input that will help us understand what is going on here.
  3. My mom is 74 years old. She was diagnosed with Parkinson's 9 years ago. She was taking 3 different medications Sinemet, Neupro patch, and Amantadine. She was having horrible edema in her feet and ankles. The Parkinson's symptoms weren't bad at this point. Because of the swelling the doctor decided to take her off of the Amantadine since that can cause swelling. When she eliminated that medication the swelling didn't go down but the muscle spasms in her face, causing her to stutter went away, which was good. She is still off the Amantadine. So the doctor decided to take her off the Neupro patch. That did it.....all the swelling is gone. But the bad news, all those Parkinson's symptoms that weren't so bad got a whole lot worse. For starters, she is a lot weaker and moves a lot slower. She is down to one medication, she only takes a half a sinemet pill 5 times daily. Anything more than that makes her really nauseous. She is very little anyway 5'2 and 90 pounds and is obviously very sensitive to medications. Ever since going down to one medication, she has terrible anxiety, some depression and her blood pressure either gets too high or too low. She is taking blood pressure medicine to treat that symptom. I'm just wondering if all this anxiety, depression and blood pressure problems have to do with "off" times because her sinemet isn't lasting long enough. She is reluctant to go on another medication because of the side effects like nausea and edema. Just wondering if anyone else has had these problems and what medications work best for them.
  4. My mom is 74 years old and was diagnosed with PD 9 years ago. Recently she was on Sinemet, Neupro, and Amantadine. Her PD symptoms were minimal, but she was having severe edema in her feet and ankles. The doctor took her off of the Amantadine, and the swelling was still there, but the muscle spasms she was having went away so she never went back on the Amantadine. The doctor then took her off of the Neupro patch, and that did it, no more edema in her legs. Having gone off two PD medications her PD symptoms are now a lot worse. She has a lot of anxiety and spikes her in her blood pressure throughout the day. She is on two different blood pressure medications, plus clonidine to help with bringing the BP down immediately. And she takes clonazepam to help with the anxiety. She takes a half a pill of sinemet 5 times a day. This is the only PD medication she is on right now. If she takes a whole pill or takes it any more than 5 times a day she says she is nauseous. I'm assuming the blood pressure and anxiety has to do with not getting enough sinemet? What do we do to get the sinemet to last longer without all the nausea? Is there another medication she can take that won't interact with her other medications or make her nauseous? She has taken azilect before without any problems but I am afraid it might make her too drowsy with the anxiety medication. Any help would be appreciated. Thanks. Tricia
  5. Hi Mark My mom was diagnosed with Parkinson's 9 year ago, she is now 74. She was on Sinemet, Neupro, and Amantadine, but the doctor took her off the Neupro and Amantadine because of serious edema she was having in her feet and ankles. She is now only on the Sinemet. You can imagine going off that much Parkinson's medicine has made the Parkinson's symptoms much worse. She is a lot weaker and has a lot of anxiety where she didn't have any anxiety before (she takes Klonopin for the anxiety). I think all of this is because she is on the minimum amount of medication and has more "off " times than "on" times. She only takes a half a pill of sinemet 5 times a day. If she takes a whole pill it makes her really nauseous. She takes it with food but that doesn't seem to help. Is there anything she can take to help with the nausea? I'm not sure if changing to an exended release would help the nausea or make it worse. Any advice you can give me would be greatly appreciated. Thanks, Tricia
  6. I was lucky to have a good response to Mirapex and felt pretty good about 8 months after diagnosis. But then my doctor suggested I try Elavil (selegiline) because he believes it has a superior neuroprotective effect to Azilect. I added it while trying to go down on the Mirapex. It did not have the same improvement in motor symptoms. But after struggling for months with insomnia (no sleep for more than 75 minutes at a time and less than 4 hrs a night) I finally stopped it. He wants me to try again as soon as possible. Now I have regularly the problems that I guess are what people mean by "off" periods. Around late afternoon each day (and sometimes after exercise) I get chills and nausea. At first I thought I had caught the flu--- week after week I attributed it to that. But now I am realizing maybe this is the "off" thing I have read so much about. I recently tried Mirapex ER (3mg) and it was like a poison pill. Violent nausea and diarrhea. Worst 24 hrs I can remember spending. So I am wondering if these are drug withdrawal symptoms from the Elavil; if the PD just progressed since diagnosis to include these and if this is part of the "off" syndrome. I do shake a little more during these periods but that is not the obvious part of it. It's been such a disappointing few months and for the first time, challenging to work. I have to lie down with a heating pad until it passes. Luckily my boss has been very kind and gave me a great office with a couch when I informed her. I live in So. California, and I feel like I need a down jacket handy for these temperature changes. Any help in deciphering htis would be greatly appreciated. I have always had nausea if I don't eat when I take the Mirapex so I find myself delaying taking that third dose-- also because I can't figure out if it helps or hinders sleep.
  7. Hi Dr., I was diagnosed in 2010 and at this juncture the meds work very well for me. Most people do not even know I have PD on my job. I have a very stressful job and commute public transportation 3 hours each day. I presently take 1 mg Azilect, 6 tabs a day of 25/100 generic sinement, and one Neupro patch 2mg a day. Last new med was Neupro added in about March of this year. Beginning shortly after I started Neupro I started having attacks where I am so nauseous and I feel like I have the flu (without fever or aches) I just feel bad. This comes over me most times when my stomach is empty at the end of day coming home from work. When I get home I have to lay down and rest before I eat. It depends on how bad the attach is as to how much rest I have to have before I eat. Earlier this year, I was the care giver for my mother who was finally committed to a pysch unit and now nursing home. During that period the attacks were really bad. I just had an appointment with my neurologist this past week and she doesn't think it is the Neupro patch because if it made me nauseous the nausea would have been gone by now because I have been on the patch for too long. The attacks don't happen all of the time. If I am stressed out or have overdone it then I definitely get an attack. My Neurologist told me to go to my primary care and get gastro testing. What do you think. I think it is either the Neupro patch or it is just a symptom of PD. A friend at work's aunt has PD and he says she gets sick and can't get out of bed on the days she is sick.
  8. I am new to this forum and wanted to get info from others who may actually have experience with this issue. I am taking Requip and Azilect and have nausea from both. Does anyone have any suggestions for relieving this? I now have GERD due to the nausea. I've tried taking before and after meals but nothing seems to help. Any suggestions would be appreciated. Thanks in advance.
  9. I am taking 2mg Requip 4 times daily and 25/100 Sinemet 5 times daily. Although this is not a new regimin I find I have nausea starting late afternoon nearly every day. I believe this is from the Requip. Any suggestions regarding timing of meds or certain foods would be most appreciated. Thank you.
  10. Hi everyone. I'm new to the boards and want to thank everyone for the extremely useful knowledge and inspirational stories! My mother has recently been diagnosed with PD. As shocking as it was to us, it's also a relief to know what the root of all her problems is. Now, we are in the process of figuring out how to deal with it and treat it. Your stories give us great hope and practical knowledge that is invaluable and uplifting. My mother has been prescribed Sinemet 25/250, 2 pills a day. The initial intro was as follows: 1/2 pill 2 times a day, 1/2 pill three times a day, 1/2 pill 4 times a day and one pill two times a day. Throughout this process she has felt at first nausea and fatigue and then extreme fatigue coupled with nausea. She has felt some semblance of motor skill improvement sporadically but, that has been overshadowed and negated by the fatigue and nausea. About an hour and half/two hours after she takes each pill, she is overcome with fatigue and has to go to bed. Her last three weeks have been spent mostly in bed dreading the next dose of Sinemet. The only two times she felt any relief was when she skipped a dose to attend a family function and then when she skipped a whole day because we never got a response from her neurologist and she was too off-put by the nausea she would have to endure. The extent of her doseage instruction stops at 2 pills a day. My questions are: - Shouldn't she be taking at least 75mg of carbidopa to prevent nausea? - Is there anything she can take to help with the nausea? - Is there anything to take to help with the fatigue? - My mother has a queasy stomach and has mostly taken the pills with a light carb in her stomach. Is this the cause of her trouble? - Is the issue in her reaction to Sinemet her body reacting to the presence new of a medication or not enough of this new medication? Thank you for any help/ideas you may have. It is greatly appreciated! Dan
  11. Hi everyone. I'm new to the forum and must say there is an amazing wealth of information and ispiration here! My mother was recently diagnosed with PD. She has been taking Sinemet 25/250 for the past 3 weeks with very little luck. At first she was prescribed 1/2 pill twice a day. Then, 1/2 a pill three times a day. Then 1/2 a pill four times a day. Then 1 pill 2 times a day. (Never was she told to go to 3 pills a day?) Throughout this "ramp up" she has gone from nausea to complete and total fatigue and then to....complete and total fatigue coupled with terrible nausea. The sinemet has completely incapacitated her and consumed her days. The only time she has been somewhat normal is once when she skipped a regimen so she could interact with extended family and once when she couldn't bear the thought of more nausea. She has been taking the pills with food because she has a somewhat queasy stomach but, nothing that should cause such severe nausea. Also, about an hour after she takes the pill, she is so fatigued that she has to go back to bed for several hours. Is there something we are missing here? It is my understanding that she should be taking the pill 3 times a day to get the proper doseage of carbidopa. Is that what's causing the nausea? Is there something we can add that will help with the nausea? What is causing the fatigue? Is there something that can help with that? Thank you for any help you can offer, it is greatly appreciated, Dan