Friday, February 22, 2013

I'm So Dizzy, My Head is Spinning!

Well, it's been nearly a month since I last blogged. And, as usual, I never meant to wait so long to get back here. But, sometimes life gets in the way.

As my title suggests, I'm having issues with dizziness and vertigo. I had a severe episode of vertigo a few weeks ago. I've never, ever experienced anything like it! It came out of nowhere!. Any time I had my eyes open the room would just spin. My eyes were darting back and forth and I was so nauseas! I ended up vomiting several times. I had difficulty walking too. It was as if I had no coordination of my muscles. It was terrifying. After about an hour it all went away. Afterwards, I fell asleep from exhaustion. 

I've had issues with dizziness in the past. In fact, I was tested for Meniere's disease about ten or so years ago. Honestly, I cannot remember if the doctor ever figured out if I had it or not. I do know that some of the testing he did show that I had a problem with my central nervous system. That my symptoms were not caused by my inner ear. And, I had some hearing loss as well. I just so happened to have an appointment with my PCP for my four month check up shortly after this happened. He's convinced that I do have Meniere's and wants me to start a low salt diet and take Antivert (for dizziness) as needed. If that doesn't help, he wants to put me on a water pill.I'm not convinced I have it. I think if I have another attack I will make an appointment with my ENT. I just feel as if I need some sort of proof. A test result that shows something. I'm just not ready to go through more testing right now though.

I finally found a group that welcomes volunteers: .  EDSers United was started by a young woman who has EDS. It's amazing what she's done in such a short amount of time. Especially since she's dealing with the illness herself. I'm waiting for educational materials from them to arrive. Then, I will either send or take them to local medical professionals. If you have EDS please consider getting involved with this group. Spreading awareness and educating others about the condition will go a long way to help with diagnosis and treatment options.

I'm not sure if I mentioned this here or not, but we are in the midst of planning a vacation this summer. It really is a work trip for Tim, but I'm going along and we are going to tack on a few other stops along the way. His meetings are in Washington D.C., but we are going to go to New York first. I've never been there and I'm super excited! We will stay with his sister who lives in Connecticut and she will show us around New York. Tim has been there several times, but I'm sure there will  be plenty left for him to see. I'm sorry that Ellis Island and some of the other attractions will be closed. Hurricane Sandy really did a number on the city. If anyone has any tips for traveling with disabilities please pass them along. I've found a few websites that help a little, but I'm still hoping to learn more. 

I'll end now, so I can finally get something posted. Stay well!



  1. Shari, so sorry to hear about the vertigo. The volunteer group sounds great, the best educators are those that live with the syndrome every day! Enjoy NYC, there are so many great places to visit..and too have a "local" as your guide, can't think of a better way to see the city!

  2. Thanks so much for your comment, Rachel. I'm excited and nervous, but I'm going to go for it (the trip that is!)