Thursday, January 25, 2018

The Experts

Grand Lobby from Flickr via Wylio
© 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:




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3 comments:

  1. UnknownOctober 8, 2018 at 4:57 PM

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    1. Dizzy GigiOctober 9, 2018 at 8:24 AM

      Hello Patrick. Thank you so much for reaching out on behalf of your wife and for sharing your story. I'm sorry she is still struggling. Truth is, one of the reasons I haven't posted in so long is that I've been struggling again too. I would love to connect over email. It is so helpful to talk with other people going through this confounding condition. I too wonder if PPPD is the whole answer. My husband and I suspect that something else is going on. I have read for example that PPPD may be connected with Chronic Fatigue Syndrome. So I would love to compare notes. My email is corderg@gmail.com. I look forward to talking to you and your wife. Best, Gail

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  2. AnonymousOctober 11, 2018 at 8:43 AM

    Unknown has left a new comment on your post "The Experts":

    Hello -- my wife and I have just read all of your posts....they are starkly familiar to what she has been going through for the past 2 years. We have been on a journey that ended up at the Mayo Clinic to see Dr Eggers who is a neurologist in the same group as Staab. They diagnosed her with PPPD back in November of last year. All of your blog posts are almost identical to what she has dealt with.

    She, however, still has some of the challenges...and we believe had another bout of bppv which was the original trigger....her migraines have been insufferable recently (even though she didn't have any real migraines before...just really bad pain above her left eye). She's been to ever doctor, therapist, and had every test....while she went to Mayo in November 2017, she still questions whether pppd is the issue....I know that it is, but her anxiety will sometimes get the best of her and she thinks it must be something drastic (like a tumor or blood issue). It would be great to compare notes...your suggestions about treatment -- slow and steady vestibular rehab and meditation are great. I laughed when you wrote about the persistence and patience....she must be just like you....she is very persistent, but lacks patience (she's a type A personality and has grown more and more OCD-like as we have gotten older).

    It has really challenged our lives -- we have four children aged 17 down to 8....we both have stressful careers....luckily (or unluckily) we work from home...so she doesn't have to suffer through an office or work commute....but juggling work and life balance is a big challenge....let us know if you can connect over email...best, patrick

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    Posted by Unknown to Living with PPPD at October 8, 2018 at 4:57 PM

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