Go Back to Start

If anybody was wondering whether or not you can have a relapse with PPPD, you can. In my case, it was brought on by the shock of having my LTD benefits discontinued. It wasn't the money, although when you can't work, the money is important. It was that I felt like they were saying that I'd been faking all along; lying about my condition. They ruled that I would be able to work 40 hours a week, when the truth was that I couldn't sit at the computer for more than an hour without having to rest. I couldn't do a tiny fraction of the work I did previously. It was ludicrous and insulting and incredibly upsetting to me.

This complete jolt to my system set me back about a year and a half in my recovery. It was so ironic. Suddenly I was dizzy again every day and the fatigue went off the charts. I had to start all over with my rehab and walking. Whereas I had worked my way up to walking 30 minutes a day, I had to start all over again at 3 minutes. Three minutes! It was so frustrating. That was in October (9 months ago) and I still haven't worked my way back to where I was, although I'm getting closer. I have actually just in the last week started to try very light housework. Basically I can dust one room. But it's a start.

If you do suffer a relapse, remember two things: you got better before, you can do it again and, as Dr. Staab said "patience and persistence" are the key. Boy he wasn't kidding! Let me know if you have experienced anything similar. I'd love to hear from you.

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. 

© 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. 

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