Lady of Lyme
  • Blog
  • Shop
  • About
  • Products I Love
    • Supplements & Meds
    • Makeup & Skincare
    • Food & Diet
    • Apps & Organization
    • Gift Guides
  • Resources
    • Symptoms/Resources
    • Lyme Vocabulary
    • Printables
    • Books & Reading
  • Features
  • Testing
  • Contact
  • Treatment Info
    • DesBio Treatment Facts
    • My Treatments
    • Treatment Blog

Vision Therapy + Vestibular Therapy. An Update

9/23/2013

4 Comments

 
I guess its about time for me to do an update on how everything is going with me. Oh geez, where to even start. Well, since the beginning of August I have been doing Vision Therapy every single day. Some moments are really tough because it feels like I can do the exercises 10 days in a row, and for some reason my eyes just don't see what they need to. And that is beyond my control, I can make my eyes turn inward when they needed to, or make my brain stop shutting down my double vision. Being a type A personality it was hard for me when I was in that funk. When I hit a bump like that I just had to keep trying over and over until my eyes finally saw it. Vision Therapy really is one of the most mentally tasking things I have had to do, and I am no where near completion. Usually this therapy is done in office at the Doctor's office, but since I can't travel so easily my Doctor installed it on my home computer. The patients who go into his office who have had brain damage & problems like mine typically go 2 times a week, and take about 75 sessions to repair the damage (About 9 months). So, I really don't know how that will translate with me doing it every day. I would hope obviously quicker, but I don't think as quick as 75 days, because I am already about 50 days into it, and I don't feel anywhere near 50% better. It's slow. My eyes have to re-learn how to do everything. They need to learn to turn inward together, my brain needs to learn to stop shutting one side of my eyes off, and I need to get depth perception back. I have a long road ahead with that, but I'm not giving up. I feel really burnt out on it, and I just wish I could know when this would pay off.. But, patience is a virtue right?

I also started doing Vestibular Therapy as well. I'm starting incredibly slow with that though, because I am really sensitive. Until I had gone to college I have never exercised on any exercise equipment. How ridiculous is that, right? Anyway, when I went off to college I joined gyms and all that jazz, and I noticed that after I got off the elliptical or the treadmill I would feel like I was still bouncing afterwards. I would get off the machine and have to sit down because I was dizzy and felt like I was still moving when I was still. Almost like the ground underneath me was moving. Honestly, I thought this was normal. Maybe it is, do any of you ever have that happen??
Either way, that was a thing lonnnnng ago and after that it was just a slow progression of Vestibular things which I brushed off as normal. I started having really terrible balance, then I noticed if I closed my eyes while standing during church prayer I would start swaying and have to hold on to the pews. All of this was weird because I was a dancer for a large portion of my life, and I could not understand why balance was suddenly an issue. Then, as time went on it got worse and worse. One time I was on a pool raft floating for an afternoon and when I tried to get to bed that same night I felt like I was still floating and bouncing and dizzy. 
Eventually it was to where if I was in a chair and someone turned me around or pushed me I would feel the movement of it long after it happened. Flipping my head upside down made me so dizzy I would fall over, turning my head quickly did the same thing. I couldn't ride elevators or escalators without having a dizzy/moving feeling when I got off. Long story short, it was bad! 
As I did the Visual Therapy and I kept working on my driving, I realized this vestibular stuff was a huge contributor in issues. When I picked up speed (going just 35mph), it felt like my head was being crushed, and my eyes started to do Nystagmus movement severely. And that's scary when you are driving a car! It's a terrifying feeling of like panic that goes on within my vision & vestibular system when I pick up speed. My eyes are trying to put together the quickly moving environment (and failing), and my inner ears are trying to gauge where I am in the world that's also moving quickly (and failing). It's a recipe for disaster and it makes me so sick and so uncomfortable. 

Neurological problems have always been the biggest downfall in my journey. The brain is responsible for so many small details that healthy people take for granted. And the Lyme bacteria itself has created so much damage that I get disheartened so sometimes. Especially when I see the goal and I can't quite get there. But either way I am doing Visual Therapy and Vestibular exercises every single day. And I have to believe that at one point this hard work will overpower the Lyme that is still there pushing back and trying to continue to wreak havoc. 

So right now I am working on that, I'm working on my immune system, and between those 2 and the inevitable fatigue it has me wiped out just about every day. I have also been doing something health-wise since this May and I will talk about it this week/next week in a longer post. I always like to wait when I start something new before I discuss it on here so I can give a realistic review of it. I don't want to waste anyones time discussing something that will do squat, and if I do try something amazing for my body & I feel like it works wonders then I definitely want to share. So, with that being said, I am going to finish off this post. I hope everyone has a happy and healthy week!

xoxo,
Christina 




4 Comments
Janna
9/23/2013 06:00:43 am

I just found your blog today. I'm sorry for what you have been through, as it has been very terrible. Thank you for sharing your experiences with others, as you may help someone find answers to their own health problems.

Have you ever had your Vitamin B12 level checked? Vestibular issues (which affect vision a lot) can be impacted by low B12. With all of the GI effects you have suffered (I read several posts from your Lyme disease treatment), maybe your B12 level is low? There is an interesting book on B12 called "Could it Be B12?" that discusses what low B12 looks like and how it is tested and treated. B12 diagnosis and treatment is controversial, maybe not as much as Lyme disease, but you may want to read up on it yourself.

My son went through 8 months of vision therapy, which was followed by OT for sensory processing disorder focusing on vestibular rehab. Those things changed his life, but he could never stop doing some vestibular stuff every few days. I am just cluing into the B12 thing with him. I put a B12 patch on him, and his vestibular system improved significantly (without him spinning or doing any other vestibular exercise) for about 2 1/2 days. The next day, he had worse vestibular function. A week after the first patch, he wore another one. Same thing. He is getting some blood work to investigate this further.

Reply
Janna
9/23/2013 06:15:50 am

I just went to another place on your blog and saw that you have tried B12 treatment. I hope that as you continue your treatment and therapy that things continue to improve so that you will recover completely soon. Thanks again for sharing your story.

Reply
Bryce Raley link
12/30/2013 12:26:07 pm

Thanks so much for sharing your journey through Lyme on this website. I'm in the middle of a battle myself. Same story, 3-5 years worth of crazy symptoms all developing with no explanation from doctors or specialists— well several bad guesses that lead in the wrong direction. I finally met a Lyme Literate doctor in Ohio (I'm in Louisville, KY) and she ran the proper tests on me. I was producing 5 positive antibodies to Lyme on the Western Blot, I had a gene mutation which affected my ability to detox biotoxins (my levels were 25,000 pts high) and my mold levels were high. My life got much better when I did vestibular rehab this summer, but they dismissed me after 10 weeks and couldn't help me with all the vision issues. They knew my eyes were a problem along with my left ear. I'm curious what vision therapy you're doing? I feel like I've exhausted the normal eye exercises that are part of vestibular rehab. I'm currently trying to see a functional neurologist in Atlanta. I too have chosen to avoid antibiotics for the same reasons you mentioned. I'm using the Cowden Protocol along with a lot of other supplements. I own a business, and I'm married with four children under 8, so this has taken it's toll on me. I have not had the funds to try alternative treatments like Ozone, or Hyperbaric Oxygen.

Reply
Christina
1/4/2014 02:30:40 pm

Hey there! If you want to email me we can chat about this more in depth I would love to talk to you about what I'm doing, and I would love to hear about your vestibular therapy. Cskova01@ladyoflyme.com

Reply



Leave a Reply.

    Enter your email address to subscribe to new posts:


    Follow @ladyoflyme


    Follow Lady Of Lyme (@ladyoflyme)

    10.2k Followers, 618 Following, 51 Posts - Follow (@ladyoflyme)


    Categories

    All
    Crohn's
    Educational Posts & Info
    Gift Guides
    Giveaways & FREE Resources
    Health/Life Updates
    Interviews & Features
    Lyme Awareness
    Quiz & Polls
    Reflective Thoughts
    Things About Me

    RSS Feed

    Archives

    March 2022
    March 2021
    January 2021
    December 2020
    September 2020
    July 2020
    June 2020
    April 2020
    November 2019
    October 2019
    September 2019
    July 2019
    June 2019
    May 2019
    April 2019
    February 2019
    November 2018
    October 2018
    September 2018
    August 2018
    July 2018
    June 2018
    April 2018
    March 2018
    January 2018
    December 2017
    November 2017
    October 2017
    August 2017
    July 2017
    June 2017
    May 2017
    April 2017
    March 2017
    January 2017
    December 2016
    November 2016
    October 2016
    September 2016
    August 2016
    July 2016
    June 2016
    May 2016
    April 2016
    March 2016
    January 2016
    December 2015
    October 2015
    September 2015
    August 2015
    July 2015
    June 2015
    May 2015
    March 2015
    January 2015
    December 2014
    November 2014
    September 2014
    August 2014
    July 2014
    June 2014
    May 2014
    April 2014
    February 2014
    January 2014
    December 2013
    November 2013
    October 2013
    September 2013
    August 2013
    July 2013
    June 2013
    May 2013
    April 2013
    March 2013
    February 2013
    January 2013
    December 2012
    November 2012
    October 2012
    September 2012
    August 2012
    July 2012
    June 2012
    May 2012
    March 2012
    January 2012
    December 2011
    November 2011

© 2011 Lady of Lyme™. All Rights Reserved.

Terms and Conditions  - Privacy Policy
Connect with me:
Facebook
Twitter
Contact   About   Email Me


Lady of Lyme is a participant in the Amazon Services LLC Associates Program, an affiliate advertising program designed to provide a means for sites to earn advertising fees by advertising and linking to amazon.com.