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NicoleZ

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NicoleZ last won the day on July 11 2012

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About NicoleZ

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  • Birthday March 24

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    Oklahoma
  1. Sinemet CR "dose failure"

    Dear Dr. Okun, I am a 40 year old WF dx with YOPD 18 months ago. I currently use the Neupro patch 8mg/24 hour and Sinemet CR 25-100 3x per day. Most of the time I am doing great on this regimen, BUT Every few (4-6) weeks I'll have an "episode" where I start to feel badly very suddenly - dizzy, vomiting, leg and arm heavy, tremor worse, severe fatigue, generally awful. My MDS said it is a "dose failure" where my most recent Sinemet XL dose fails to cross the blood-brain barrier, so I have my "regular" PD symptoms plus withdrawal symptoms like N/V. It's not an everyday/common thing like a traditional "off" period, it's only every few weeks, but it is awful. So, he gave me some regular short-acting Sinemet to take as a "rescue" dose when it happens. Since that appt I have used the rescue dose 3-4 times, and most of the time it works pretty well and I feel much better within 30 min or so. But, I am in a line of work where that 30 min can be a life-or-death situation. So, he is recommending Apokin injections instead. Does this situation happen often? Thoughts on the new plan? Thank you!
  2. Sinemet causing severe speech impairment?

    Thanks everyone....KiminJapan - has your doctor had any suggestions to have symptom control but not the awful side effect of speech impairment? I had never heard of this situation before, and am wondering what other options people might have tried?? Honestly, seeing him like that terrified me - I can't imagine trying to choose the "lesser of 2 evils", walking vs talking
  3. Last night I met a man, a psychiatrist (former), who is now 48 years old, diagnosed at the Mayo Clinic 10 years ago with PD. 5 years ago he was about to have DBS, but decided against it....only taking Sinemet now. He has been on disability for 4 years because in his off times he has such severe gait issues that he sometimes uses a wheelchair....when in an on time he walks pretty well. BUT, when he is in an on time, he has a severe speech impairment - like so mumbled that his words are indecipherable and he communicates by typing on an IPad! Has anyone heard of this as a side effect of Sinemet? He does not have the impairment in off times/skips doses. He usually takes the meds so he is mobile, sacrificing his speech. He had tried many, well really all, the other PD meds and they either caused worse side effects (intractable nausea, hallucinations, etc) or didn't help much at all with symptoms. I myself am 39 yo with YOPD.... I was very sad that someone as young as this man was so debilitated by either PD or PD med side effects.
  4. Last night I met a man, a psychiatrist (former), who is now 48 years old, diagnosed at the Mayo Clinic 10 years ago with PD. 5 years ago he was about to have DBS, but decided against it....only taking Sinemet now. He has been on disability for 4 years because in his off times he has such severe gait issues that he sometimes uses a wheelchair....when in an on time he walks pretty well. BUT, when he is in an on time, he has a severe speech impairment - like so mumbled that his words are indecipherable and he communicates by typing on an IPad! Have you heard of this as a side effect of Sinemet? He does not have the impairment in off times/skips doses. He usually takes the meds so he is mobile, sacrificing his speech. He had tried many, well really all, the other PD meds and they either caused worse side effects (intractable nausea, hallucinations, etc) or didn't help much at all with symptoms. I myself am 39 yo with YOPD, and I was shocked at how severely debilitated this man was from either PD itself or medication side effects.... It made me very sad for him, and worried for me!
  5. Need some feedback on Mirapex Er

    Hi! Yes, My MDS diagnosed me and started the Mirapex ER at the lowest dose that same day. By the time I saw him I was at my worst, like I was afraid my hand/arm to fail me during surgery. And I was dizzy, off balance, nauseous....I kept having to lay down at work. Not to mention I couldn't play with my twin boys. So, I started the Mirapex that night....by the next day I felt a little better, and by 2-3 days later even better. As long as I had any residual or breakthrough symptoms, he kept slowly increasiing over the next couple of months...by Jan I was tons better. I stayed on just that unil about June when I started having breakthrough symptoms again, some added Sinemet daily. again, felt better the next day, and ally good or 6-8 weeks.....then started having breakthrough again. I go next week, so we will see what's next!
  6. Need some feedback on Mirapex Er

    Hi! I am 39 years old, diagnosed with young onset PD Nov 1, 2011 by MDS based on tremor in right thumb, decreased right arm swing, difficulty getting out of chair, right foot drag/shuffle, balance issues, and extreme fatigue. I first saw 3 general neurologists starting about 2 years ago because I kept feeling off balance and fell down the stairs at work several times. Next came the fatigue and right leg not moving well. Then neck, back, arm stiffness. Last right thumb tremor. I found my MDS myself and "referred" myself. I take Mirapex ER 4.5mg daily (that is the highest dose, took me about 10 weeks to titrate up). It greatly improved my walking, stiffness, neck pain, headaches, and tremor. I have been lucky and have NEVER had any side effects from it. There are PWP on this board that have not had the good experience with it like I have, but for me it helped a lot! It had been controlling all the symptoms fairly well until a couple months ago. My biggest problem is fatigue and also extremely poor sleep at night. My tremor and stiffness are worse with increased fatigue and stress, and my job is very stressful/long hours. My MDS WAS hoping to keep me off any other meds for awhile. But, my symptoms had been starting to rear their ugly heads quite a bit lately, and 2 months ago my MDS recommended started one dose of Sinemet XR 25/100 late afternoon so that I have better energy the last part of the day hopeful help the foot cramp/hip pain improve. Starting the Sinemet has helped! Still good days and bad days, but every little improvement is good! Hope that helps a little
  7. My Bed and I Have a Strange Relationship

    Couldn't have described it better! It's like you live my nights!
  8. Let's do a poll! 1) How old are you? 2) What is your job? 3) How long have you/did you work with PD? 4) If you stopped working b/c of PD, exactly why? 5) If you are still working, what are your concerns about doing your job in the future? Me: 1) 39 yo 2) ObGyn Physician 3) diagnosed 9 months ago, still working 4) still working 5) worried about fatigue and problems with manipulating my hand being issues in the future Thanks for your answers! And if you see someone's answers about future concerns, etc. and have any ideas to help ....throw those out there too! Nikki
  9. General anesthesia

    I had my gallbladder removed about 6 months before my diagnosis .....I had a much more difficult recovery than normal for that surgery, and was really super fatigued for about a month (most would be fine in 1-2 weeks). This episode was one of the pieces that helped MDS with diagnosis as a tough time with anesthesia is typical for PD pts, especially untreated ones as I was at that time. Get plenty of rest and don't push yourself to rush your down-time. Feel better soon!
  10. Question for the ladies

    I am lucky I guess that I am not well endowed in that department, so I do camisole style like Beau's mom said. But mine are do have pretty good support...they are almost like a jog/exercise style but not as "thick". Man, this is not easy to describe! They are from the Gap Body Collection, and I think you can see them on their website! No hooks, just slip on over the head! Hope that helps
  11. Hi again...was chatting with Doc after my earlier post....he said even if someone had side effects from the moderate dose Mirapex ER, you might want to discuss trying low dose Neupro patch as a good option to help with dyskinesia. Keep us posted on what you try and what helps!
  12. Hi....I am 39 yo, diagnosed about 10 months ago with sx for a couple years before that. My MDS started me on Mirapex ER and titrated me up to the max dose of 4.5 mg a day over about 3 months. This alone controlled my PD symptoms for about 4-5 months, but then they started coming back late afternoon and I had some new night time symptoms. So, my MDS started me on Sinemet XL 25/100 in June, and it has helped tremendously! I asked him when he started it what would happen if I developed dyskinesias, and he told me a few things that might help you..... 1) He said the XL form of Sinemet has a much less chance of causing dyskinesias than the short acting, because it doesn't have the on/off effect and is dosed only once or twice a day.....so maybe you could ask about changing to the XL form? 2) Amantidine can be used to help with dyskinesia 3) A low dose, long-acting form of an agonist like Mirapex ER (very low so not to cause side effects) or the Neupro patch can be used to help with dyskinesias I don't know if that helps, but those are the things my MDS discussed with me for if I develop dyskinesias.
  13. How long for Mirapex to work?

    Hi WSMC.....My MDS started me on Sinemet XL about 6 weeks ago....it has helped a lot and no side effects so far. When I questioned him about dyskinesia, he said the key is to go with the lowest dose that helps symptoms and go with the long-acting Sinemet. The short acting has a much higher rate of dyskinesia than the XL form apparently. He said if dyskinesia begins and you decrease or stop the Sinemet right away,mthe dyskinesia will typically go away. You then may need other treatment options like DBS, and there are some new meds about to be FDA approved. in addition, it he medication amantadine has had good success treating dyskinesia and allowing pts to continue Sinemet. I know there are several threads in Dr Okuns section that address Sinemet and dyskinesia, so definitely do a search there. Dont get me wrong....dyskinesia is something to consider. But, if Sinemet can greatly improve your quality of life, I think the current expert thinking is that it shouldnt be delayed for fear of dyskinesia. Hope that helps a little
  14. New Doctor

    So sorry that you are dealing with this! So, as a doctor myself (ObGyn), if I was leaving I would most definitely set up a referral to a colleague for any patient that asked me to do so, and most definitely would transfer all records, current treatment, etc. I think you should call the office tomorrow, voice your concern (you may need to ask to speak to the nurse for the doctor you had been seeing rather than the front office), and make it clear that you would like to be referred to someone that your doctor feels would be able to handle your case. If for some reason that doesn't work, I would call the NPF hotline and see what MDS they would recommend based on your location. Hope that helps a little!
  15. How long for Mirapex to work?

    Hi! I answered your message before I saw this, so check there too for a lot more of my thoughts.....I do have 5 year old twins and work full time, and I have had to make changes, a lot of them, due to PD. Some things I can't do with my boys, but there are lots of things I can still do and some new things we are trying. It's day to day. I do think it may take more time and med adjustments for you - don't give up. I just added Sinemet to my regimen, and it has helped a lot. Hang in there!
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