Jump to content
helplinedonate

viriyagita

Members
  • Content Count

    53
  • Joined

  • Last visited

  • Days Won

    2

viriyagita last won the day on November 7 2015

viriyagita had the most liked content!

Community Reputation

24 Excellent

About viriyagita

  • Rank
    Advanced Member

Recent Profile Visitors

677 profile views
  1. viriyagita

    timing of requip xl

    Dear Mr Comes, Again thank you! So far the staggering of the Requip XL dose has provided me with the most stability and predictability I have had in a long time.Presently my medication regime is as follows: 3:30 a m (usually when i awake) Sinemet 25/100 If I sleep through the night, then i skip the CR and take IR 5:30 am Requip XL 4mg 7:30 am Sinemet CR or IR and Azilect 1 mg lately have not needed the IR 11:30 am CR 3:30 pm CR 5:30 pm Requip XL 4 mg I take it this early so doesn't interfere with sleep 7:30 pm CR 11:30 pm CR
  2. viriyagita

    timing of requip xl

    Dear Dr. McComes, Thank you so much! The more variables I can eliminate the eaaier it is. My proposed schedule would be as follows: 5am Sinemet 25/100 immediate release or CR May have to adjust as don't always need a jumpstart esp if need a dose 7am Sinemet 25/100 CR during the night or may wake up later than 5 9am Requip XL 4mg and Azilect 1 mg 12noon CR 5pm CR 7pm Requip XL 4mg 10 pm CR plus 11pm Trazadone 50mg and Mirtazepine 15 mg for sleep Dyskinesia is the most troublesome side effect and separating the two medications in time may help a lot because i had been taking them together.
  3. viriyagita

    timing of requip xl

    I am trying to find what is probably impossible -the best consistent timing of all my meds to achieve optimal mobility and minimal dyskinesia. I can pretty much establish the Sinemet 25/100 CR every 4-6 hours with the immediate release replacing my early am dosage. But i am having trouble figuring out how to time the XL.I wondered if there would be some pharmacological basis for choosingone of these options: 1./ 8 mg daily at same time as first sinemet dose or 2. /8mg at different time say 2 hours later or 3./ 4mg in am and 4mg in pm either at same time or staggered.
  4. viriyagita

    other surgery with DBS

    I recently had surgery for a lesion on my leg which was squamous cell skin cancer and i was sedated. The hospital staff was prepared in relation to equipment and even though there was no apparent problem we decided to turn the system off until after surgery and there were no ill effects. But i don't think that all doctors are that familiar with the devices and i find that i have to be very proactive and ask questions and find a lot of the answers myself.
  5. viriyagita

    dbs overstimulation and is explosion possible

    I had DBS surgery in May of 2016. When i am "off" everything around the stimulator becomes tight and the lead is very prominent becoming more so over time and is very painful during these times until medication brings me to "on". It feels like the lead is very taut and i question whether that can be surgically corrected. I am fearful of what might happen at some point. My doctor said there was not a surgical solution where i am at present. Wondered if anyone else experienced this ?
  6. viriyagita

    Effects of Amantadine

    Since my DBS surgery in 2016 i have had difficulty finidng a middle ground between off (tightness, spasm and pain) and on (dyskinesia). Recently I haave started on Amantadine and about two weeks into taking the new medication had a strong what was most likely a spasm of muscle near the stimulator and i was very off. I was in the store so hawd to continue walking but it worsened.and then i felt as i might faint. The question is: Could the Amantadine be responsible: in other words should i be very dyskinetic qnd a little overmedicated with Sinemet to take the Amantadine. Perhaps my dose of Sinemet too low for the Amantadine to be effective. Does it tend to push you back as far as the "off" symptoms? I am taking 100 mg twice daily and Sinemet 25/100 CR every 4 hours. I would like to be able to take the Sinemet 25/100 immediate release but i have too strong a dyskinetic response. I am running things by my neuroogist who also tweaks my DBS programmming.
  7. What is the equivalent for Sinemet 25/100 IR with the ER? We have been trying to find that middle ground where the pain and decrease of movement is tolerable and at the same time there is minimal dyskinesia. By accident i discovered that the ER of same dose worked pretty well. There was very good even on time. Still had to contend with dyskinesia but shorter duration. Some of my IR had been damaged so until i could replace i used some ER i had..I have been on Sinemet 25/100 IR 6x a day or every 4 hours. Dyskinesia is quite severe. On the 25/100 i took similar but more often could go 5 hours and so sometimes only the 5 pills in a 24hour period. I have not seen anyone else on the ER. I also take Azilect and Ropinerole 8 mg ER daily - have now tried 4mg in am and 4 mg at night whick helps some, i also have DBS. Just wondering if you have heard o fanyone on the 25/100 ER . What do you think is optimal timing for the Ropinerole? Thank you!
  8. Dear Dr. Okun, i had DBS surgery completed the end of April. I wondered whether it is possible, once the battery needs replacing, to change the location of the device. Presently it is on the left side which is where i originally wanted it to be.There didn't seem to any substantial reason for either particular side of the body. My neurosurgeon usually puts it on the right. Since surgery I have wished that i had it on the right. When i stiffen with any wearing off of medications the area around the device gets very tight and there are unpleasant sensations underneath the battery and the device feels like it is crawling or pushing itself into my throat. My Parkinsons symptoms started on the left side, have progressed to the right, but have not been as severe. I do have a bilateral system. It is also impossible to play the violin with the placement of the of the violin and the leads on my neck. Never thought this would be an issue because i thought i would never play again, but i could now primarily for my pleasure. I don't think this dilemma needs to be resolved but my question is: is it possible?;ved no r wikl it perhaps be relevant as my Parkinsons progresses and will most likely bed a situation where the benefirt does not outweigh the risks. My question is: is it possible?
  9. viriyagita

    Chest tight around transmitter

    Yes, but so far no problem just uncomfortable during off time when i am stiffening up.
  10. viriyagita

    New Medtronics Web Site

    Brilliant!
  11. viriyagita

    Med reduction after DBS surgery

    I was on Rytary prior to DBS and it seemed to hold me the longest, but it did take 3 months to find the right dosage. Now i am in the process of programming and reducing my medications under neurologist's direction. Before DBS I was on a total of 1750 mg levodopa from the Rytary and 16 mg of Ropinerole daily. Now i am on 870 mg of levodopa and 12 Ropinerole and my voltage is 1.5. I can tolerate this dosage but a little under as occasional dystonia. So likely next time i go to him for programming (6/28) he will increase the voltage and start tapering meds again. My question: each time the voltage is increased the dyskinesia is so severe as to render me unable to function which is also what i experienced when trying to get to the right dosage of Rytary - do you think that the process would be easier and clearer on Sinemet?
  12. viriyagita

    Post DBS - Sinemet or Rytary?

    Thank you for the reassurance. What i am finding is that the neurologist present at surgery is doing the programming and he seems to be right on target. I've been winging it, adjusting things, advocating on my own for a time now that my inclination when something doesn't seem to be working is to figure out myself what needs to happen. That tendency has helped to get me to DBS but now that i trust this neurologist, I would be better to take his route first. When the dyskinesia became severe, I finally decided to back off on the voltage with immediate decrease in dyskinesia. Then i started with his first choice of decreasing the Rytary to 2 pills 3x a day which i have done. Now i have only occasional minimal dyskinesia and some "off" time with miinimal dystonia. Now i have some predictability and manageaboility of symptoms. There must be something in taking the long-acting forms of levodopa that works better wiith longer interval even if dose higher. Will most likely stay on the Rytary for now at least.
  13. I wondered if it might be clearer with how to proceed with reduction of medications post DBS bilateral STN using Sinemet rather than Rytary. Before my surgery I had been on large doses of Sinemet and was then having unpredictable off time and dystonia. I tried for 2 1/2 months to use Rytary and finally went back to Sinemet because could not find that balance and experienced severe dyskinesia. When i started my workup for DBS, the neurologist did give me a script for Rytary that ended up working fairly well, especially holding me through the night. Now that we are trying to reduce my medications and increase the voltage and going fairly slowly, I think, finding it hard with a lot of dyskinesia that renders me nonfunctional after voltage increase. I realize now after reading another post that it might take a while for my brain to adjust to voltage change, but the medication shift might help? A bit of patience is necessary on my part, i know. My last surgery was the end of April and first programming beginning of May. We have reduced the Rytary from 3 pills 36.25 mg/145 mg 4 times a day to 2 pills twice daily and 1 pill twice daily and have increased my voltage from 1.0 to 1.3 to 1.5 and now 1.8. Also, if i need to take a break from the dyskinesia, what would be a reasonable amount of time to back off that would not interfere with my brain adjustment to increased voltage? Thank you for this forum.
  14. viriyagita

    Positioning of DBS stiimulator

    Thank you, I am leaning now toward putting it on the left side which is the affected side. Since I live alone, recuperating as soon as possible is important. My sister will be with me but i do depend a lot on my good side to get me up etc.
  15. I am having bilateral DBS with one stimulator and need to decide on which side i prefer it to be implanted. I originally thought that the left side would be the best as that is my most affected side and it would then make recovery from the surgery easier. But that is just a short period of time in the scheme of things. I wondered if there was any reason to choose placing it on the right side.
×