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    Telemetry again...

    Next week, on Monday, I will be admitted to the hospital, tapered off my meds, probably sleep deprived, and bored silly until the seizures start... That’s of course what we want. Though the first time I had this done, I accidentally discovered that I could fight off seizures. I am now going back to further this research for my own treatment, and the possibility that it might be used to help others. I’ll have my devices on hand, so I will keep you updated on what’s new...

    Hopefully I can get food delivered!
    Firehorse
    *fire*rodeo

    #2
    Your "devices"? I'll be here waiting for reports. Best wishes.

    Comment


      #3
      At this point, “devices” simply mean my “gadgets” that I am going to be bringing, my iPad, cell phone, and laptop... These will be to keep me from going crazy with boredom, and give me some form of communication with the outside world. The last time I did this was back in the mid 90’s. Gadgets were called books then. I also seem to remember that I might have had a Nintendo GameBoy, with one game card. Football...

      I am still collecting my thoughts about this. My epileptologist is rushing me through all the diagnostic testing, as he announced to me that he is retiring very soon. This is in fact what prompted me to bring this up at a last minute appointment I made to see him before he retired. I have been seeing him for over 20 years. We have a complicated and interesting history. One that includes me meeting my wife, and him curing her epilepsy with epilepsy surgery! While I believe our relationship could exist beyond the medical, (We have many other common interests besides epilepsy.) I have come to count on his counsel for the many complex issues that always come with epilepsy, no matter how experienced, or who, or how many you have help from.

      Of course nothing can replace what can be found here. The Friends who understand what others like us are going through. I am hopeful that this will be quite eventful and productive.

      I have several motivations for doing what I am doing. The most important one of course is for my own quality of life. There is icing on the cake. I do have the ability to potentially contribute to an area of science that could benefit other patients with epilepsy, that have partial seizures/secondarily generalized seizures if everything goes perfectly.

      I am a bit nervous. To succeed, what I need to do is fight off my seizures on command for the EEG, multiple times. I have never done this before. I do this for me, not for others. I am not concentrating on anything else but me, and what I am doing when I do it. I am not even always totally successful.

      This is a technique that I have been practicing for over 25 years, so how could I refuse such an opportunity?

      More later....
      Firehorse
      *fire*rodeo

      Comment


        #4
        RNS Candidacy

        Oh yeah, all this is preliminary to candidacy, & making a decision about a “device”. Eventually that “device” could be the RNS which would be programmed with data processesd from the telemetry...

        I have already had a 3 Tesla MRI, which is the 1st stage.

        Since the company headquarters is close by, I will take a tour, and grill the people there about their product.
        Firehorse
        *fire*rodeo

        Comment


          #5
          I've had so very many MRIs ........ now I'm down to one every 18 months, but I don't know what 3 Tesla is. I go to Barnes Jewish Hospital, St. Louis, MO, that's part of Washington University, so I know they have the best, most modern equipment.
          And I've lived through that awful VEEG two times, 2005 and 2007. At least Barnes has incredibly kind, gentle, nice staff in that epartment.

          Comment


            #6
            A good explanation of what a 3 Tesla MRI is, can be found here... Only registered and activated users can see links., Click Here To Register...
            Firehorse
            *fire*rodeo

            Comment


              #7
              ((((((Firehorse)))))) ~

              You are quite brave and generous to be taking this on, and I will be thinking of and praying for you throughout the testing.

              How is the RNS different from the VNS? Is this what you're hoping to have after completing the telemetry?

              I hope you will be able to come here to report on your experience. I will be very interested in following you on this journey.

              Meanwhile, maybe you should store up some sleep, if that's possible!

              Love & Light,



              Rose
              Mom to Jon, 49, & Michael, 32, born with an undiagnosed progressive neuromuscular disease. Angel Michael received his wings in 2003. Angel Jon received his wings in 2019. In 2020, Jim, their Dad, joined them.

              Comment


                #8
                Thanks for the (((hugs))) Rose, my mind feels like it’s going wild right now. I did spend the day out along about 100 miles of the coast north of San Francisco yesterday to attempt to group my thoughts on this. I’m really don’t think of myself as brave by doing this, because I would do it anyway if I felt like I was going to have a seizure.
                Doing this first requires having a simple partial seizure, and yes, that’s is kind of scary. Really, that’s mostly because it starts in the area of my brain that controls those feelings. Then there is a little anxiety about the idea that I might get injured. The injury part is not an issue really due to where I am. So I try to get that out of my mind. I have to concentrate on keeping the ability to concentrate, relaxing, (to fight the anxiety). The last time that I did this, I kept intensely focused on the EEG to keep me from any distractions. I managed to fight them for approximately 9-10 hours in the 1990’s.

                I also have always had a history of doing what was needed to help others like myself; Often I was looking first for my own benefit, finding out that nothing existed, so I helped build and facilitate the support system for others. Brave? No. Intently curious? Extreme scientific curiosity? Very much so! Glad to have connections with the same curiosities!
                Firehorse
                *fire*rodeo

                Comment


                  #9
                  The RNS is used for partial onset seizures. The electrodes are implanted subdurally, with the device just under the scalp. Part of the Telemetry will be to find the focus or foci, so the electrodes may be placed in the best location, and the device can be programmed for the individual.

                  Hopefully, I may be able to add data that has never been able to be recognized and recorded on an EEG before.
                  Firehorse
                  *fire*rodeo

                  Comment


                    #10
                    Hi Firehorse,

                    Here's wishing you the best of luck! Just like you I went off my meds and had testing done before surgery. Good luck with the RNS I've heard a lot of positive reports about it.
                    One thing I just started doing recently is taking two tablespoons of apple cider vinegar with Mother in it and I am amazed at how my seizures have decreased. Here I was using it
                    to lose weight but since it's help stop my seizures I'm continuing to use it.
                    Correct me if I'm wrong but does the RNS also help cool the brain down stopping the neurons from firing up which in turn triggers seizures. I know that they are either working on
                    a device like that or the RNS may be that device. Either way I wish you only the best of luck and May God Bless You!

                    Sue

                    Comment


                      #11
                      Hi Firehorse,
                      I wanted to wish you the best of luck with the EEG! I only have experience with EKG instead but I completely understand how you feel in regards to testing. I have every confidence you will do well! Keep us updated! btw is this one of your posts about controlling seizures on the forum? Only registered and activated users can see links., Click Here To Register... If not it may help you anyway. :)
                      Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
                      My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

                      Comment


                        #12
                        Yes funnylegs, you found my old post detailing my experience with fighting seizures! That’s probably the best one I have ever put in text. I’m glad it’s there. My memory only will degrade with time...

                        Hi Porkette, great to hear from you. I have heard other people having success stopping seizures using a type of technique that involves a strong ‘distraction’, by stimulating one or more of the senses. The first I remember was from the book, Epilepsy; A New Approach, by Adrienne Richard & Dr. Joel Reiter MD. The first chapter “The Woman Who Sniffed Jasmine.
                        In this case you have used similar techniques, finding what works for you.

                        Okay well, I am all attatched, and stuck in my bed, or chair. I am not supposed to get up with out calling for observation. I had forgotten how annoying this can get! I have been here about 36 hours, and so far no events of interest. Sleep deprivation starts tonight. I will be up late tonight!
                        Attached Files
                        Firehorse
                        *fire*rodeo

                        Comment


                          #13
                          Originally posted by Firehorse View Post
                          Yes funnylegs, you found my old post detailing my experience with fighting seizures! That’s probably the best one I have ever put in text. I’m glad it’s there. My memory only will degrade with time...

                          Hi Porkette, great to hear from you. I have heard other people having success stopping seizures using a type of technique that involves a strong ‘distraction’, by stimulating one or more of the senses. The first I remember was from the book, Epilepsy; A New Approach, by Adrienne Richard & Dr. Joel Reiter MD. The first chapter “The Woman Who Sniffed Jasmine.
                          In this case you have used similar techniques, finding what works for you.

                          Okay well, I am all attatched, and stuck in my bed, or chair. I am not supposed to get up with out calling for observation. I had forgotten how annoying this can get! I have been here about 36 hours, and so far no events of interest. Sleep deprivation starts tonight. I will be up late tonight!
                          Ah! Great! I loved that post so much! How is the EEG going? Do you have to not move to prevent the electrodes from not falling off? I'm just curious.
                          Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
                          My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

                          Comment


                            #14
                            ((((((firehorse)))))) ~

                            I've been thinking of and praying for you. I hope that all is going well for you.

                            The blog link funnylegs4 provided is by David Hosobuchi. Are you David?! If so, I've been here 18 years, and I somehow missed that!

                            Looking forward to your update ~ healing energy on the way to you~

                            Love & Light,



                            Rose
                            Mom to Jon, 49, & Michael, 32, born with an undiagnosed progressive neuromuscular disease. Angel Michael received his wings in 2003. Angel Jon received his wings in 2019. In 2020, Jim, their Dad, joined them.

                            Comment

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