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Found 19 results

  1. Looking for options besides the standard carbidopa-levodopa are they extended release Rytary. I have been on regular carbidopa-levodopa for almost 2 years but now get severe nausea and continues to wear off quickly. My insurance company denied Rytary as not on their formulary. We’re getting very frustrated, and my neurologist also doesn’t seem to know where to turn. She has asked if we have suggestions but I don’t even know where to start. Just wondering what do you think the next best thing to try would be? We’re also considering trying medical marijuana or just CBD oil but also no clue where to start with that. So far I’m not finding anything specfic use of medical marijuana for Parkinson’s other than it can help but not even sure what to try first. There are literally hundreds of types and are expensive so really would like to focus on something someone else has tried other than just try and test several.
  2. Annemarcel

    Medication/Food/Symptom tracker

    I've been looking for something that will help me track how food and medications are affecting me. I really want to know specifically how different foods affect my symptoms, and I also need to be better prepared for when I have my MDS appointments. I appreciated Mark Comes medication schedule in the Pharmacy forum, but it doesn't take into account what I'm eating and how I'm feeling. After months of scouring, I decided to take his and expound on it. So far, it's been nice to print several out each day and have them in different parts of the house so I don't have to carry it around with me. I'd like to share it here in case anyone else might find it useful but I'm not sure how to do that. Any techies out there willing to instruct me? I created mine in Google Sheets but I've also got it saved as an Excel file.
  3. hiker


    I started taking Ropinirole hcl .25mg at 7am, 1pm. 5pm yesterday. I don't notice any side effects nor changes in symptoms. how long does it take before I'll notice a benefit? I also take rasagaline 1 mg daily. Thanks!
  4. When researching complimentary treatments for PD, I've come across Essential Oils which have been around for a long time. Has there been any research or testing of the benefits of using Essential Oils in addition to PD meds to aid in management of symptoms or increasing cellular health? Are there any potential interactions we should be aware of?
  5. I am going from Boston to arizona and I am concerned about how to handle my meds. I take meds q 3 hrs. Anyone have any tips? I also will need a wheelchair or a ride on one of those carts that zoom all over the airport. Actually I would ;prefer the cart(they look kinda fun) Any idea how far in advance you would need to make these arrangements. Anybody have any tips? I feel like this concern is making it hard for me to be excited
  6. For the last three months I have experienced chills and a feeling of extreme cold that frequently coincides with the wearing off period of medication. No temp. I take sinemet 25/100 x 2 every 31/2 to 4 hours and 3 mg mirapex ER once a day. Can this be related to medication or is it something else. Thank you.
  7. Anybody have strange non-movement issues when traveling? My meds work on the movement disorder but non-motor issues are not being affected by meds suddenly? I went on the trip of a lifetime with my spouse this month, and it turned into a major disaster. I ruined months of planning, years of dreams and broke her heart. Med background: Rytary 3 times a day (9a, noon, 3p) Requip in the morning (9a) Azelict in the morning (9a) Everything was going as well as can be expected. My wife did 99.9998% of planning for months and we were traveling to Europe for 3 weeks! We were in a time zone 6 hours ahead of EDT, so I shifted meds to local times. Our Dream Vacation turns to a Nightmare. One comment from wife about PD triggered me to scream, accuse her of an affair, and yell disproportionately from 2am to 6am about random topics. It was as if my meds had no affect on my non-movement symptoms for about 10 days (apathy, no insight, screaming. All of my pre-diagnosis issues). Suddenly on day 11 it felt like I had clarity? My arms felt slight tingling and head cleared. I realized that the past 10 days I was behaving as if I was totally off my meds. Meds finally start work on non-motor issues after 10 days? Please tell me you have heard of this, and what medical explanations there are. My wife is heart broken, I destroyed the trip and my excuses sound like made up b.s. thank you
  8. mojgan


    my father is a case of parkinson since 15 years ago he received amantadin 200 mg /day Does it help in reducing the symptoms of the disease؟
  9. Hi, hope you could help us. My mum, 72 years old and have had PD since 2008, is currently taking 1 1/2 perkin tab (levodopa 100mg & carbidopa 27mg) twice or three times a day depending on days and once taken it lasts around 3 hours – she is only taking medicine when she needs to go out because she is afraid that she gets used to medication and wouldn’t work effectively. Now, she is finding difficulty to move around without medicine, and time to time she is having difficulty with sleeping at night (sometimes, she cannot go to sleep at all and sometimes she wakes up during night and cannot go back to sleep afterwards) and she is also having difficulty tossing/moving in bed during night (tossing/moving problem in bed may be that effect of medicine is worn off as currently her last medication is taken around 6:30pm then going to bed around 10 or 11pm). She is considering to change/increase medication and is seeking advice on a number of options, 1) increase dose of perkin tab, 2) taking the same dose more frequently, or 3) combine perkin with comtan. What would you recommend? She is also wondering whether it’s better to take medicine regularly or when needed? Again, she is very afraid that her body is used to medication so it wouldn’t work effectively, and she would like to manager her symptoms by medicine as long as possible. Also, would it be better to take sleeping pill (currently taking Clozazepam 0.5mg when necessary) or taking perkin once more a couple of hours before going to bed when she is having a problem with sleeping? If sleeping pill is better, would Clonazepam the best one? Is there any other sleeping pill that you could recommend? Your advice would be greatly appreciated.
  10. Benyamin

    So many questions

    New to the forum so I'll start with an intro. 30 year old Canadian living in China. Diagnosed a year and a half ago. Symptoms began over three years ago. No medication to date but considering starting to take Amantadine soon. I was doing pretty well until recently when some personal problems started to impact my progression. I realize now, especially living so far away from home and family, that I need contact with other people who might be dealing with PD to help me through this. So I've come here. I have a lot of questions and would appreciate any help I can get. 1. Exercise - As I've seen time and time again, exercise is vitally important to helping manage PD. I exercise regularly and if nothing else it definitely helps my mood. But I do notice that many exercises exacerbate my tremor while I am doing them. Should I discontinue doing those exercises or just fight through them? Should I cut down on weight lifting? Core and balance exercises in particular give me the shakes, though I continue to read of their importance, should I just persevere? 2. Caffeine - I've read a lot about the positive benefits of Caffeine. However, much like my exercise problem, I notice that caffeine also makes me shake more. Again, should I ignore the symptoms and drink coffee or green tea anyway because of their potential long term benefits or should I stop drinking them? 3. Diet - Turmeric. B12. Antioxidants. Q12. Magnesium. Calcium blockers. L-Tyrosine. Vitamin D. It goes on and on The list of recommended supplements is seemingly never ending. I've been advised by my specialist in Canada not to worry about them and just make sure I eat a balanced diet. Plenty of fruits and vegetables. Needless to say, it's all a bit confusing. Anybody have anything more definitive I could take a look at? 4. Retreat - I'm planning at some point in the future of going on a Parkinsons retreat of sorts. Some place where I can go for a few weeks or months and just focus on how best to manage this disease. Ideally somewhere warm with a beach where I can consult with physicians and dietitians and physiotherapists and learn how to ensure that I maintain the highest possible quality of life. Anybody know if such a place exists? 5. Isradapine - Is anybody involved or participating in the ongoing clinical trial on Isradipine? Any results, preliminary though they might be, that can be shared at this time? 6. China - I live and work in China, I've been here for four and a half years, I speak the language and have a good circle of connections here. I'm looking to see how I can help make a difference to people with PD here. I've visited a number of specialists here and have come away feeling that they are not always able to provide the best treatment to their patients. Anybody have any suggestions or know anyways that I could help bridge the divide between here and the west in terms of providing better patient care? 7. Biological determinism - I took part in the 23 and me study and it turns out that I have one of the variants associated with Parkinsons Disease. I have one copy of the N370S variant in the GBA gene. I've been told there is nothing I can really do with this information and that it does not effect how I manage the disease. That said, I'm curious to know what epigenetic factors might influence it, or have influenced it, and what does it say about how I will progress. 8. Online - In addition to this forum, what other forums should I be following for PD related information? That's it for now, thank you for taking the time to read it and if you have any information that you think might be useful please share.
  11. igreen

    Balance problems

    I am 57 yrs old and was diagnosed almost 1 yr ago with PD. Before that, L hand & finger tremors had been present about 3 yrs. I have been receiving PT & OT since Feb which I believe is helping my awareness & feeling of controlling/maintaining my body, my strength and flexibility... as best I can. My neurologist & I have concurred that I am not going to begin medication yet, because LH & leg tremors are primary symptom. However, yesterday I woke up to balance problems & difficulty walking without touching a surface. I am aware that no 2 PD patients are alike, but with this new development of balance instability, is there medication that could help this most recent symptom. One reason I had decided NOT to begin medication was that I am a teacher and did not want the problem of more movements that I understand medication (too much) can bring about. I am not scheduled to see my neurologist again until January, however, with this new development & thinking I might need a cane to move about safely and school beginning next month, is medication now something I should begin taking for this newest symptom? Is it possible for the walking imbalance likely to come & go, or do you usually see this as a symptom that will continue?
  12. I am having a hard time regulating my medication. I currently am taking 2 ea 25/100 Sinemet 5 times a day, 2 ea Ropinirole .25mg 3 times a day, Soma 350mg 3 times a day, Zoloft 100mg once a day, I have terrible movement isses, almost like a seizure, I have difficulty breathing deeply, my movement is uncontrollable, my arms,legs,and head are jerking. It lasts until my meds kick in. Would a seizure medcation help.
  13. cjedavie@hotmail.com

    medicine timer

    Does anyone know of a timer that can easily be set for a regular schedule of 3 1/2 but may start at different times each day- for example: today the first medicine is at 7 so the next is at 10:30, then 2pm. etc. But tomorrow it starts at 6:30, 10, then 1:30 and so on. Rather than having to set each exact time each day, it will run after started notifying of the 3 1/2 hour marks. Thank you! If this technology has not been developed, here is an opportunity for someone!
  14. ventureforth

    The high end of Sinemet

    I have had Parkinsons for 5 years. I currently take Sinemet 1 1/2 tablets every 3.5 hours 4 times a day with Comtan and 1 Azilect of 1 mg a day. At night I take 1.5 of 50/100 Sinemet. My NY doctor told me to cut down, that I'm on the high end. I've been taking this for 3 years. Confused. Ventureforth
  15. My Parkinsons doctor at Cornell recently prescribed Celexa for me. I am currently taking Azilect. When I first got on Azilect my old doctor at Cedars Sinai made me get off of any type of medication like this 6 weeks before taking celexa. The NY doctor said there is no problem, they are in small doses. Celexa is in the generic name Citlopram 10 mg and Azilect is 1 mg every day. I am also taking Sinemet and Comtan, and Valium as needed, Forteo for my bones. Thanks Ventureforth
  16. Positivepdguy

    Azilect Effectiveness

    Greetings. I have stopped taking Azilect after discussing its ineffectiveness with a top neurologist researcher. I tried the on/off periods with the drug and did not find any difference. I have also tried antagonists which gave me some bad side effects. Would like your advice on alternate solutions. Exercises do help.
  17. jonticchi


    Hello, Just had a quick question if anybody could help me? The Doctor prescribed Paroxetine, how do you think this could be useful with having PD. Thanks
  18. She-Ra

    "Once Upon A Pill"

    Has anyone hear heard of or read Once Upon A Pill? I came across it on another forum. If you search for it, you can download the pdf for free. I have just started reading it and thought I would ask about it here.
  19. Dear Doctor, Due to lack and shortage of some drugs in my State in Brazil , I have been prescribed to take doses of levodopa +carbidopa and levodopa+benserazide (Sinemet and Madopar) , in the same day and sometimes togheter at same time if extended levodopa+benserazide is the indicated. Do you see any harm, or problem, with this procedure ?? Yours Very Truly, Joao Paulo