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. 

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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. 

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How PPPD Develops

The triggers and development of PPPD, in my understanding, differ from person to person. There is always one triggering event, however that starts it all off. Usually this is some vestibular disorder like Ménière's disease, BPPV (regular vertigo), or some other inner ear disorder, but it can also be a traumatic brain injury or other conditions that cause dizziness. The next steps vary, so I can really only tell you how it happened in my case as was explained to me by the doctors at the Mayo Clinic. But the general pattern should be the same.

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The docs told me that my triggering event was inner ear damage of an unknown origin. Through testing, they determined that the vestibular function in my left ear was damaged by 70%. They also told me that my migraines made the situation worse, because they evidently interfere with the brain's ability to regulate balance. So once you are dizzy, the brain goes into survival mode trying to help you keep your balance. As you walk, the brain is working really hard to keep you from falling down. In my case. This was aggravated by extreme, prolonged stress I was experiencing in the workplace. The more you try to function, the more your brain gets agitated, making it harder to balance, so the dizzier you get. And the spiral starts.

As you get dizzier, the brain searches for another way to balance, so it starts depending on signals from the eyes to balance rather than the inner ears. The eyes, however, are terrible at this for two reasons. One, everything around you moves, so your eyes are constantly adjusting and sending signals to the brain. And two, the eyes take up more brain power than any other organ, so you're taxing your brain even more, agitating it even further, making it harder to balance. And down it goes.

The dizzier you are, the fewer things you are able to do. And your life gets smaller and smaller till you can't leave the house or even entertain visitors. That is the downward spiral and it gets worse and worse until you get treatment. The good news is that there is a treatment. See my post Working Out Your Inner Ear and Your Brain.

Please feel free to leave comments or questions. I would love to know your story. The more we get the news out about PPPD, the more doctors will learn to diagnose and treat it.

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The Experts

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As I mentioned in my previous post, my first breakthrough in figuring out what was wrong with me was finding this article:  New Clues about Chronic Dizziness. The article seemed to be describing my life. The doctor who led the study mentioned, Dr. Jeffrey Staab, was said to be at the Balance Center at the University of Pennsylvania. Further research helped me discover that Dr. Staab and his colleague, Dr. Neil Shepard, were now at the Mayo Clinic and were the leaders in the field of chronic dizziness research. I learned that the condition mentioned in the article - Chronic Subjective Dizziness - had been changed to PPPD (Persistent Postural-Perceptual Dizziness.) I later found that Drs. Staab and Shepard had been on the committee that named the condition for the World Health Organization and that PPPD is now on the draft of the next version of the International Classification of Diseases. 

The more I researched about PPPD, the more I knew that was what was wrong with me and I set out to find out more. I also called the Mayo Clinic and filled out the paperwork to get the appointment process started.

Here are some of the articles, podcasts and videos that I found that were helpful to me:

• Podcast about PPPD with Dr. Neil Shepard and Janene Holmberg, Physical Therapist who works with PPPD patients.
• Podcast about Visual Vertigo with Dr. Jeffrey Staab and Marisa Pavlou from King's College in London, the other leading institute on PPPD.
• YouTube Channel of Vestibular Disorders Association - Lots of good videos here.
• Mayo Clinic YouTube Channel - Helped me prepare.
• Patient Education Resources from Vestibular Disorders Association - Lots of good info here.

Getting a Diagnosis

I was diagnosed with PPPD last April at the Mayo Clinic in Rochester, Minnesota. Although it took me a full year (agonizing wait!!) to get an appointment, getting the diagnosis was worth it. My recommendation is to do as much research as you can on your own. If you suspect you have PPPD, find a doctor who is familiar with it and preferably has some training and experience with it. If you can't find help (which I couldn't) get on the list at Mayo Rochester. The team of doctors there are  the premier researchers in the world on PPPD, and helped identify and name the condition. They're the best there is.

More on Mayo to come.