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About Evon

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  1. Evon


    Thanks to all for sharing. I find it always helps to hear from people who are walking the same path.
  2. Evon


    I was also diagnosed 13 years ago and had DBS 2 years ago. I was warned not to reduce my meds too quickly or too much but felt so good after surgery that I reduced from 10 sinemet and 6 mgs of requip down to 1 sinemet a day. It was a delayed effect and I started to feel very depressed. I started an antidepressant but it didn't seem to work so I started to increase my sinemet and went back on Requip. I started to feel better once I got up to 4 sinemet a day and 3 mgs requip , which is where I am now. I am still having issues with depression and am considering trying another antidepressant. I have had periods of depression for years now but have really noticed I am much worse since DBS. If anyone has had a lot of experience with antidepressants and would like to share it would be appreciated.
  3. Evon

    Dystonia is back

    Thankyou Carruthers for your reply. I went to the MDS today and had some success. As you mentioned there are different combinations of settings and the Neurologist tried a new one and it did give me some relief in my left leg and foot. The setting on my left side was reduced to 3.0 from 3.7, and the right side was reduced to 2.2 from 2.5. It feels much more comfortable and I am walking better Unfortunatly he was not able to do anything for my lower back pain and suggested I go ahead and have a cat scan to rule out other problems. I have it booked for April 3rd so I am hoping to get some answers in a few weeks.
  4. Evon

    Dystonia is back

    hello to all members of this forum. I have been reading posts about DBS for a year now since my DBS surgery on March 30th of last year. For the first six months I was doing very well but this past 6 months I have been steadily going down hill. I have back pain which I thought might be a disc problem or stenosis but since having an x-ray last week I found out it showed nothing unusual. When I wake up in the morning I have dystonia in my back and it takes a while to get moving. My legs are weak and I hobble around for at least an hour. I can't stay on my feet for more than an hour or my back really hurts and I can't walk far either. Before DBS I didn't have any problems with walking but my dystonia was a lot worse. It is like I traded one symptom for another. At times my speech is not good either. My stimulator is set at 3.7 on my left side and 2.5 on my right side. I am taking 3 sinemet a day, down from 10 before surgery. Also 3 mgs requip, down from 6 mgs before surgery. Plus one sinemet CR at bedtime. I am not sure what to do, increase meds or increase stimulation. I am going to the MDS next week to see if they can adjust settings. If anyone has any suggestions I would like to hear from you. I am feeling awful and am desperate for some relief. Thanks to all for listening.
  5. Hello Dr. Okun I have been accepted as a good candidate for DBS and also for a study group of six people for spinal cord stimulation for people with Parkinson's. I was diagnosed with P.D. 2003. I am presently taking Sinemet 100/25 9 a day and 6 mgs. ropinirole a day. I am scheduled to have the SCS the beginning of February. When I first decided to do the surgery I felt it would be less invasive and if it didn't help relieve my dystonia I could have it taken out. Since doing some research on SCS I am reading that it could involve a lot of pain and would require that I do not bend, stretch, exert myself in any way or lift anything heavy for up to six weeks. The study would take 1 year to complete. I am having second thoughts about choosing SCS and wonder if DBS would be the better choice. I know that SCS has been done for a number of years for people who have chronic pain. I am sure it is the same surgery that they are using for this study. What do you think the risks would be for SCS compared to DBS and what are the odds of it helping with P.D. symptoms. I would appreciate your thoughts on this study.
  6. Evon

    Spinal stimulation

    Spinal cord stimulation is now being used to treat chronic pain. From what I have read the electrodes are implanted in the dura, the outermost of three layers that surround the spinal cord. You mention that in your surgery the electrodes are attached to muscles that are causing dystonia. Do you think this is the same surgery? Micheal J Fox foundation has funded research to test spinal stimulation. The technique is similar to DBS but blocks the signals further downstream in the spine. It was published in the Scientific Reports that spinal cord stimulation in preclinical models improved motor symptoms and showed neuronal protection. I wonder if there is a risk of paralysis with this surgery. Also, would the results be as good attaching the leads to the spinal cord as it would to the muscles. It would not be as invasive as brain surgery and could be removed if it did not work. I would appreciate hearing your thoughts on this subject. I have an appt. with my Neurologist in Sept. to discuss having the surgery. Thanks.
  7. Evon

    Spinal stimulation

    Hello Mark I have been reading about spinal stimulation and I understand that you had this procedure done. Not sure if it is the same treatment, correct me if I'm wrong. Are you still feeling the benefit and would you recommend it to other PWP who have dystonia. I have had P.D. for 12 years and am finding that the fluctuations and unpredictable dystonia attacks are getting worse. I am not ready for DBS surgery, only as a last resort.
  8. My spouse who is 55 years old was diagnosed with P.D. 2006. He took sinemet for a couple of years but started to have bad side effects, dyskinesia, dry heaves etc. He decided to try the amino acid treatment, ( mucuna, tyrosine , cysreplete) which according to the information he received does not cause side effects and stops the progression of the disease. His first year went relatively well although it does require a good deal of time mixing and weighing powders and taking a lot of supplements in the form of caps. The past year has been more challenging. He has very few hours of "on" time, freezing, weakness and lack of energy resulting in loss of muscle and excess sleepiness. He is hesitant to go back to pharmaceuticals because of the side effects. Would it help if he added an agonist or another medication to the amino acid treatment? It is time to try something else before he loses any more ground. Any suggestions would be appreciated.
  9. Evon

    Drug-induced anxiety or strong emotion?

    Yes I have had the experience that you describe. I have been taking my meds at close intervals trying to prevent fluctuations. If I have a sleepless night or don't take meds during the night I sometimes crash emotionally. It is awful, I feel totally hopeless and helpless. I fall into a big black hole and feel so depressed until I take a couple of doses of sinemet and I gradually come out of it. A few hours later I feel like myself again. It is frightening to think I can sink so low. My Dr. has encouraged me to go for DBS surgery for my dystonia but I am afraid the emotional episodes will get worse. I have not tried antidepressants, I don't feel depressed except when this happens. Perhaps your DBS will help, I would be interested to know.
  10. Evon


    Hello Sean I have had dystonia since I was diagnosed ten years ago. Since increasing sinemet it is worse, seems to bring it on shortly after taking a dose as well as when I am ready for my next dose. Fluctuations have made it unpredictable. I have tremors only when I have dystonia. I am taking 8 sinemet a day 100/25 and 8 mgs of requip a day. My neurologist says that I should have DBS surgery but I am not convinced it will give me relief from the dystonia. Also, I have researched DBS and it sounds like I could come out of the surgery with some other issues such as balance problems, speech and even personality changes and no guarantee that it will stop the dystonia. I have tried baclofen, didn't find it made much of a difference. Ativan and Clonazapam seem to help, I do not take on a regular basis, only when I am really distressed. I try to ride it out and once the sinemet kicks in I get relief. I know what you mean when you say you can feel it coming on and when it lasts for an extended period of time it is very uncomfortable. It seems to wear me down very quickly. I too have it down my left side, it wakes me up in the night and is usually bad when I wake up in the morning. I take my meds in small amounts and often throughout the day trying to balance the dopamine level to avoid spikes which trigger the dystonia.
  11. I was dxs with PD ten years ago. I am now taking 8 mgs of Requip and 9 100/25 mgs. Sinemet a day spread out almost hourly due to fluctuations that bring on dystonia. I am not sure if the medication is causing my dystonia. If I stop taking the medication within hours my left side is twisted and painful with cramping. In the morning it is hard to get going because if I take too much Sinemet or Requip at one time the dystonia gets worse and then such a low dose wears off very quickly. It takes a few hours to find a balance so that I can start my day. I have been scheduled for DBS surgery and have postponed twice in the last two years. From everythng that I have read about DBS there is no guarantee that I will have a great deal of improvement and it may take up to two years to see the full benefit. Also, I may have speech problems as well as balance and cognitive issues. I am not convinced that this it the way to go. Is there any other medications that I could try that I could substitue for Sinemet that would not cause dystonia. I am scheduled for an appt. with my Neurologist in February and I will again be asked if I am going through with the DBS surgery. Not sure what I should do next. Am I at a high dose right now and is there room to add more before I start to see the side effects of the medication. Any suggestions would be appreciated, running out of time.
  12. I have been on the list for DBS surgery for over a year now. I have had PD for ten years and the past few years I have been dealing with fluctuations. Dystonia is my worst motor symptom which affects the left side of my body. I have cramping and tremors when my dopamine level is low and also quite often just after taking Sinemet. I take Sinemet ( 10 x 100/25) and Requip (3 x 2mgs.)(reduced from 18 mgs.) almost every hour to keep the dopamine level balanced . Thirteen hours of each day I take either a Sinemet or Requip. My worst non motor symptoms are anxiety and insomnia. After researching DBS surgery for dystonia it seems that it is hard to predict how much improvement I can expect if I choose to have the surgery. The focus seems to be on improving the motor symptoms and very little is said about the social and interrelational issues that some people may have after DBS. I have read studies that report personality changes, aggression, depression, identity issues, psychiatric symptoms that most people don't want to talk about. I know my anxiety is holding me back from going ahead with such an invasive procedure for fear of improving the physical and worsening or causing psychiatric symptoms. Not to mention speech and balance problems. Have you seen evidence of these adverse events and do you think it is a valid concern? Does it take longer to program a person with dystonia after DBS? Would I be able to reduce my medication after DBS surgery for dystonia? Thank you for answering my questions. You have helped so many people, including myself, who strugggle each day living with Parkinson's Disease. I
  13. I have been through the screening process for DBS surgery. Dystonia is my worst symptom affecting my left side. I am 59 years old and have had P.D. for 10 years. Dystonia always has been hard to manage. From what I have read about dystonia as a secondary symptom there is no guarantee of what percentage improvement to expect. Also, it may take as along as 24 months of programing to see improvement. Have you found this to be the case with patients who have P.D. and dystonia. Can I expect to be able to lower the meds? My last question is about the target in the brain best suited for the patient with dystonia. Would that be the STN or GPi? Currently I am taking 9 regular sinemet a day and 6 mgs. of requip. spread out over the day, Fluctuations bring on dystonia so I take meds almost every hour. I am hoping the surgery will give me some relief but worry that it might be a long difficult journey.
  14. Evon

    DBS Consultation & Anxiety Medication

    This post is very similar to my own P.D. experience. I am 59 years old, have had P.D. for 10 years, am a candidate for DBS surgery (on the short list). I have had issues with anxiety since before dxs. I have dystonia(cramping) which is brought on by fluctuations and therefore take my medication often throughout the day. Trying to keep a balance of dopamine does help with all my symptoms including the anxiety. I do take some clonazepam, not on a regular basis. I don't sleep well and I find that either Remeron or Clonazepam help but if I take it on a regular basis it loses it's effect after a few weeks. Clonazepam works well for me but if I take it for too long and then stop I feel more anxious and it becomes a vicious cycle. I am surprised that three medications were prescribed at one time. It is better to try one at a low dose for a while and see if it works and increase if needed. At least you would know what side effects belong to each medication. Too much of these meds prescribed for anxiety can make you feel like a zombie. I will say that I have found that relaxation and meditation do help to calm the Parkinson mind as well as exercise. There are lots of good audio books and cd's that can help you learn how to manage anxiety. Also, taking medication spread out over the day (smaller doses more often) will definately help with both motor and non motor symptoms. I agree with Dr. Okun, it is going to take trial and error to find a balance. Once your mother feels like she has a handle on the anxiety she will be able to move forward with the surgery.