Monday, June 18, 2018

Working Out Your Inner Ear and Your Brain

Many people have asked "Is there a treatment for PPPD?" The answer is yes. But before I go any further, let me give a couple of caveats:
  1. Don't diagnose yourself
  2. Don't treat yourself.
You can do more harm than good and PPPD is nothing to mess around with. You need to be diagnosed by a physician who is familiar with PPPD and can administer the right diagnostic tests. 

Seventeen Again from Flickr via Wylio
© 2008 Fe Ilya, Flickr | CC-BY-SA | via Wylio
Now for the treatment. At the Mayo Clinic, after extensive testing, they prescribe a specialized program of vestibular rehabilitation therapy combined with medication (either an SSRI like Prozac or Zoloft or an SNRI like Effexor or Cymbalta.) The medications are intended to help with the dizziness, making the exercises more effective. I was unable to take these medications because they made my migraines worse. But that was just me - everybody's different.

And don't go to just any physical therapist. He/she needs to have been trained to treat PPPD, because the treatments are very specific. Just any vestibular rehab exercises will not do it. In my case, I met with a PT at Mayo who prescribed a program of exercises I could do myself at home. I just called or emailed him when I had questions, and it worked out well for me. Later, I found a PT in my area who was trained in PPPD, and I found her very helpful too.

For me, the rehab consisted of two types of exercises - balance exercises and VOR (vestibular ocular reflex) exercises, also known as gaze stabilization exercises. I had a specific set of these I did two or three times a day, varying certain factors as my dizziness improved. For example, in the balance exercises, I might have my feet spread apart at first and then worked up to having them together. Or I might increase the length or speed of the VOR exercises. For all of these, the goal is to do just enough to get uncomfortable, but not really dizzy. If you get really dizzy, you've done too much and you haven't helped yourself. I was given this guideline: If the dizziness subsides in 10 minutes, you've done well. If it takes 2 hours, you've done too much. The process is EXTREMELY slow. Dr. Staab at Mayo emphasized I needed to have patience and persistence. The persistence was easy for me, because I was determined to get better. The patience - not so much. 

I was told it could take a year to get better. But the doctor said that I could expect to see some improvement after three or four months. When I was at the bottom of the spiral, a year was too overwhelming to think about. So I focused on the three or four month thing. Turns out that was a mistake. The progress after 4 months for me was so slight that I became discouraged many, many, many times. Let me be clear: This. Is. A. Slow. Process! 

Baby steps. Tiny baby steps. That's what you have to think about and celebrate. For me it took over a year to get significantly better. But if you stick with it, it does work. It probably varies depending on how long you have had the PPPD when you start the therapy. It took me a year to get in to the Mayo Clinic, so I was in bad shape when I started the rehab. It was clear by the way I walked. I've seen 90 year old women walk faster and more steadily than I did. 

What the VOR exercises do is to retrain your brain. That's probably why it takes so long. I mentioned in my post How PPPD Develops that your brain starts to depend on your eyes for balance rather than your inner ears. These exercises actually retrain the brain to use the inner ears for vestibular input. And that can take a while. I did have more rapid success with the balance exercises. And a walking regimen helped a lot with my balance. My gait was the first thing to improve. I guess practice makes perfect.

For me, at least, the dizziness was only part of the picture. I was still left with overwhelming fatigue, and I continue to work on that. But I celebrate all my victories. 

Leave your questions and comments. I'd love to hear from you. And if this helps you, please share it using the buttons below! Thanks!





4 comments:

  1. Oh man, thank you so much for blogging about your experiences! I'm not sure how I didn't run into this earlier as I've been deep diving PPPD on the internet since I was officially diagnosed with the condition on July 3rd of this year at the same place you received your diagnosis - the wonderful Mayo. I live in the Las Vegas area and spent an entire year with ENT's with good intentions but little experience with dizziness disorders lasting over 3 months. I was very happy to finally hear someone verbally tell me what I had already expected for the last few months. My first course of action is to begin Prozac although I'm very apprehensive to go down this route. I keep telling myself that I can handle the PT without pills, although I have a nagging suspicion that they might just help. It really makes me happy to hear that someone is actually getting better out there! I look forward to your future posts!

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    1. Hello Joshua. I am so sorry I haven't gotten back with you. For some reason, I don't always get notified when I have a comment. (Come on, Google!) And I havent been on my blog in a long time, because, unfortunatly, I've had a bit of a downturn. I hate to tell you that, because I know how important it is to stay positive and have hope. But I am going to persevere and it WILL get better again. And I know you will too. I hope the Prozac helps. I wasn't able to tolerate it. But about the PT, just TAKE IT SLOW. Seriously, when I started, the exercises that I was supposed to do for 30 seconds, I started at 5 seconds. Then built up to 10 seconds, etc. That way you WILL be able to tolerate them and they will help. That's my two cents anyway..

      Again, so sorry I didn't answer before now. I hope this finds you. And good luck!!. Please stay in touch.

      - Gail

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    1. Hello Xabier,

      I am so sorry I haven't answered you before now. For some reason, I do not get notified every time I have a comment, and I have not been on my blog in a long time, because, unfortunately, I've had a bit of a setback. But I would be happy to send you the info I have about PPPD rehabilitation. Just send me your email address to corderg@gmail.com. Good luck!

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