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viriyagita last won the day on November 7 2015

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About viriyagita

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  1. 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.
  2. 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 ?
  3. 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.
  4. 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!
  5. 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?
  6. viriyagita

    Chest tight around transmitter

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

    New Medtronics Web Site

  8. 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?
  9. 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.
  10. 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.
  11. 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.
  12. 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.
  13. viriyagita

    Sinemet first, now adding Requip---anybody on that combo?

    I started on Sinemet 25/100 3 times a day and Requip 1mg 3x daily was added shortly thereafter. i started these medications 14 years ago and over the years controlled symptoms very well (no one could have guessed i had PD) with switching to extended release Requip and adjusting dosages until i was on Sinemet 25/100 4 times daily and Requip XL 8 mg. Was also on Azilect. I did not have problems until last year when after a long period of sleep deprivation the medications were not working and i went on ever increasinhg dose of both medications (Now on Rytary 36.75mg/145mg 4 times a day and 16 mg Requip XL. I do not regret my decision to go with the Requip because i feel had an excellent quality of life until recently and obviously i have progressed. I now plan to have DBS and hope i can decrease meds.
  14. viriyagita

    Asleep dbs

    y This has all been very interesting to follow because i am scheduled for DBS surgery in April. Starting last year in February I have had a dramatic change my symptoms. I had been on Sinemet 25/100 4 times a day and Requip XL 8mg in am and Azilect 1mg in am. I had essentially no "off" time, (diagnosed in 2001 because of rigidity) and just some occasional minor dyskinesia. That situation changed quite dramatically after i experienced a month and a half of sleep deprivation. My "off" periods increased and were more unpredictable. Every night i would have what i later discovered was dystonia, initially the feet and it was quite severe but nothing like the back. You can feel and see the spasms running continuously up and down my spine for anywhere from 15 min to eight hours in a 24 hr period. My meds were increased to Sinemet 50/200 CR 1 tab every 4 hours (although it would sometimes be 3 hours} 0r instead Sinemet 25/100 2 tabs every 3-4 hours (both of these through the night and Requip XL16mg. Did have some dyskinesia with this huge increase but not that much really and i loved it because i was "on" and no pain. The dystonia continued to be an almost unbearable problem. Tried Rytary which is what i am taking now 36.25/145 3pills 7am-12noon-4:30pm - 9:30pm. (also the Requip) And still the dystonia on pretty much a daily basis and now severe dyskinesia at times. I do, however, have the 8 hour span from 7:30am til 3:30 pm and the nighttime from 2am til 630 am fairly consistently on and little pan. Needless to say i have found this situation very difficiult and try to take it all minute by minute. I am in a pretty good state of mind but a year of such severe pain is wearing me down and my main reason for seeking DBS. I am not sure if the other symptoms would have sent me so assuredly in the direction of the surgery. So my questions are: 1. They are deciding which site: GPI or STN .It doesn't seem clearcut to me. AS i gathered somewhere in this forum, unilateral GPI is the best for voice and I've read some conflicting ideas from different movement disorder specialists and various studies. In order of what i would like to improve - it's far and away the lnot really problematic. My balance concerns are more with the extremer experiences of dyskinesia. As i mentioned i do not have any speech problem or mood disturbance. I do still wake up frequently usually every hour after an initial 3 hour period but i am managingdystonia #1, then very severe dyskinesia which is almost tied with desire for increased "on" time, then would come a decrease in medication and finally cessation of the milder dyskinesia. I don't have much to say about the other symptoms because they either don't exist or like balance to get between 6 1/2 and 8 hours of sleep. Any input as to site? 2.i am pretty sure that it will be unilateral but i realize that we never discussed that. I do have another appointment coming the end of March so i want to make sure i don't leave out any important questions. What determines unilateral vs bilateral? My symptoms started on left side and that side is still more affected than my right but the right side is involved also. 3.The first part of the surgery will be done in 2 stages: burrholes made, sites located and mapped. Then screws put into the holes and I am sent home for 2=3 days and come back for the major event. Location checked and the rest of the brain surgery completed and i am in hospital for i-2 days, go back home and return for the final stage of the stimulator insertion 6 days later . Question: Am scheduled for first part 11 days before the second. That seems like a long time to be walking around after the brain has been exposed. I guess i am wondering about a higher risk of infection. I will call the office and inquire about the dates again. I guess this is not so much a reply as i am seeking guidance for my questions. Any ideas on other quesitons i should be asking the neurousurgeon? Thank you for your time
  15. viriyagita

    Fine tuning the Rytary

    Dear Mr. Comes, Sorry i think there was no content in the last post. I just retrieved it I really appreciate your expertise, patience and thoroughness. I haven't given up hope on the Rytary yet. i've come this far and really in retrospect my pain is most likely the same as when i was on the immediate release Sinemet alone. Am moving forward with plans for DBS, yet that won't be at least until spring. My neuropsychological evaluation is not until March.which means i have a few more months at least for some possible relief from medication. Frankly, if the DBS just lessened or took away the pain, i would do it for that reason. Obviously, I am hoping for more: some reduction in off time and maintenance of function with somewhat lower doses of medication. The increase has been so drastic since this past March. So in terms of fine tuning: 6:30 am. Rytary 36.25/145 2 pills: response consistently great from the beginning (probably helps that i often go back to sleep for another hour or so). When i get up, I could almost be considered normal. 7:30 to 8:00 am Azilect 1mg and Requip XL 12 mg. ( another variable not looked at or maybe doesn't matter that i am not taking it the same time as my first dose). It seems that about 45 min. after the Requip and the Azilect 1 mg i have some dyskinesia, moderate, and doesn't usually last for longer than an hour. Breakfast 10:30 am Rytary 36.25/145 2 pills: response is consistently good. On with no dyskinesia, dystonia, occasional prickly, lightly uncomfortable sensations in both feet 12 noon lunch or snack 2:30 pm Rytary 36.25/145 3 pills: response equally spread when using 2 vs 3 pills. Either need 2 and 1/2 or it is more the time of day than the dosage. Anywhere from about 4pm on I have some degree of dystonia. Some times it is relieved by the next Rytary dosage especially if i walk through it, some times it lasts all the way through that dosage time and the next with some short periods of relief. The intensity varies from a 3 to a 9. I would not use 10 because I'm sure there is an intensity level of pain that i have never experienced. When i say 9, I mean similar to the pain I experienced in the transition period of labor ( had no pain meds or anesthetic). The only other experience of pain i have had at that level was when I had a substantial tear in the cornea of my eye, when you cannot be distracted, you cannot answer questions or make decisions and you feel like moaning or screaming and hold the panic back by breathing techniques. So a 3 would be irritating and a 6 and 7 moderate but i am in control. The most difficult pain is all the way down the middle of my back squeezing on all my internal organs. It does not really feel muscular (off periods have in the past and now been accompanied by muscular pain (level 5) and the more extreme dyskinesia has given me muscular tension in the neck mostly. This pain feels sort of electrical in nature. My left foot wlll also tighten right up, curl and be hard to walk on. Well, enough said there. Lunch or snack at 3:30 pm 6:30 pm Rytary 36.25/145 3 pills: response similar to previous session. If the dystonia was relieved last time by the Rytary, this time likely to continue mostly through to 10:30 with a little break at 8 or 9. Occasionally no episodes of dystonia. Very rare. once a month when i am home, less frequently when i vacation or am on retreat. 8:00 pm Requip XL 4mg may be some dyskinesia but i was taking it before bedtime so didn't notice anything. Supper at 9 pm 10:30 pm Rytary 36.25/145 2 pills response i am not totally sure of as i fall asleep about 1/2 hour after the Ativan Ativan 0.5 mg for sleep when no pain, 2 pills total of 1 mg if in pain. Some nights i do not take the Ativan if i have no pain and i feel tired 2:30 am Rytary 36.25/145 1 pill response great, feel wonderful when i wake up for morning dose Ativan 0.5 mg almost never in pain, but usually take it so i can sleep for at least a 3 hour stretch, otherwise i would wake up every 1/2 hour, if feeling tired then i don't take it. I don't wake up for my night-time dosage of Rytary because i have to go to the bathroom or because i set my alarm. I just wake up. So, questions: 1. What would 2 1/2 pills of the Rytary look like? Would it be 2 of the 36.25/145 plus 1 23.75/95 or would it be just 2 of the 48.75? Yikes, this is so hard to figure never mind all the varables. 2. Might the Requip also be contributing to this being a particular time of day? Should i take it at the exact same time as my Rytary and should it be equally distributed - 8 mg in the am and 8 mg in the pm or even in reverse with only 4 mg n the am and the remaining 12 mg at night? These are all sustained release. You've just lucked out as my break from pain seems to be ending and i will stop writing. If i wrote this much daily i would say my pain is from sitting in front of a computer. One last thing - I did take about an hour's nap today about 3pm to see if i just have exhausted my supply and need to recover by resting and that is why the end of the day is a problem area.. Didn't work today but it is only one day. So sorry for being so wordy. The medication also wires me a little more than normal so i have become more verbose. Your time is so valuable and you respond in depth to so many people that i will try to be more succinct in the future. Hope you have lots of relaxing vacation time. Very gratefully, Viriyagita