A Heartfelt Thank You

I can't go any further with this blog without stopping to give some huge thank yous.

© 2011 josephdepalma, Flickr | CC-BY | via Wylio

Thank you to all my family for your love and support through all of this. To my siblings who surprised us with a huge financial gift to allow us to travel to Minnesota to go to the Mayo Clinic. I'll never be able to thank you enough.

Thank you to my friends at Trinity Valley School for all the meals, the cards, gifts, emails and well wishes. It helped so much to feel your support.

© 2013 Alan Levine, Flickr | CC-BY | via Wylio

Thank you to my grandkids for all the sweet hugs and "Hope you feel better soon, Gigi."s. Every one touched my heart.

To my daughter and son-in-law, I don't think I can count all the ways you have helped. The adjustable bed so I could sleep upright, the new TVs, so we could retire the old ones to the Smithsonian, and a million other thoughtful gifts to help me. Plus all your time and physical help doing everything I couldn't do. I couldn't thank you enough in ten lifetimes.

And to my amazing husband who has sacrificed everything, who does everything for me, who gives all day every day, puts up with my frustrations, encourages me and always tells me the truth. You are my rock and the love of my life, and I'm glad every day that you're mine.

The Experts

© 2006 Alan Levine, Flickr | PD-CC0 | via Wylio

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.

How it Started

© 2011 Henry Ngo, Flickr | CC-BY

The first thing for me was a couple of dizzy spells out of the blue. This was during probably the most stressful period of my life, and I am certain that played a significant role. I will write more about stress in another post. The dizzy spells soon became more frequent and more intense. I should point out here that PPPD is non-vertiginous dizziness. It's not like the common type of vertigo, which I had had before, in which the room seems to spin. For me, this felt the same, but I didn't "see" the room spinning. It was as if my head was spinning inside. The attacks also lasted much longer. Once I was dizzy, the only way I could resolve it was to sit quietly, semi-reclined for several hours. I began having to go in to work later and leave earlier. More and more things made me dizzy. At first, it was mostly bending over or looking up. Then, looking from side to side (for example, from my computer screen to my desk) made me dizzy. Soon, even moving my eyes around the computer screen made me dizzy. At that point, work was impossible and I had to stop. That was a very hard time. My husband and I had to get rid of most of our belongings and downsize to an apartment. I saw an ENT (many times) and four different neurologists, including the foremost specialist in my area in vestibular problems, but no one was able to help me. I had started thinking about the Mayo Clinic when I saw this article: New Clues about Chronic Dizziness. That changed everything.

What is PPPD?

PPPD (often referred to as 3PD) stands for Persistent Postural-Perceptual Dizziness). It was formerly knows as Chronic Subjective Dizziness. Basically it's a condition in which you are dizzy all the time. Without treatment, it escalates over time and other debilitating symptoms develop. Fortunately, PPPD is becoming better known and understood. There are many resources available for sufferers of chronic dizziness. Please see my PPPD Resources list (sidebar) to get started.

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.

Getting Started

It's been almost two years since I had to stop working due to my PPPD and I am just now able to start blogging about it. Although I wanted all along to document this journey and share what I have learned, it's just been too difficult. Reading and writing are two of the things that make me dizziest and most tired, so even now I can only share little bits at a time. But today, I've started. Very happy for that milestone!!