Monthly Archives: August 2010

Hal Dietz on his research of connective tissue disorders

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Hal Dietz on the future of Ehlers-Danlos syndrome

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Changes At EDNF

The EDNF has closed their offices in Los Angeles, top leadership has stepped down, and they have hired a nonprofit management company. The new offices will be in Virginia.

Read more here, and there is a PDF press release on that page. I don’t know if you need to be logged in or not.

Excellent news.

I hope the Ehlers Danlos National Foundation gets their shit together, for all our sake’s.

More Ehlers Danlos Links

FDA Withdrawing Proamatine / Midodrine After 14 Yrs of Approval

Found out about the Proamatine / Midodrine situation via the Dysautonomia Information Network Forums discussion at DINET. More links, there.

More at The Happy Hospitalist also.

😦

Product Review: Sea-Band Anti Nausea Wristband

I’m doing some reviews of items that have made my life easier, as I’ve had to adjust to having an Ehlers Danlos syndrome body.

I am not being paid nor am I receiving anything for writing this review, but if you click on a product ad and buy an item I get a % at no additional cost to you.

Product Review: Sea-Band Anti Nausea Wristband

Nausea is my main complaint (along with fatigue) with my postural tachycardia syndrome (POTS). I can’t “feel” that my heart is going berserk (unless I get palpitations) but it makes me nauseated and sometimes throw up.

I get dizzy from (POTS) but last month I had a couple weeks of vertigo, which is a spinning feeling and different from being lightheaded and dizzy. An anavert prescription didn’t really do much. Eventually the positional spinning went away, but when I had it, it made me throw up sometimes when I changed position in bed.

I had bought a pair of Sea-Band wristbands before, when I thought I would be taking a ferry, and then I forgot about them until I got vertigo. So I opened them up and put them on.

Sea-Band Adult Wristband, 1-Pair

The pair of wristbands are made of soft knit material, and stretchy. I have very small wrists and they fit snuggly. There’s a large plastic bead in the inside of the wristband, which presses on a nausea pressure point on the inside of the wrist, when properly positioned, hits a nausea pressure point. The Sea-Bands come with directions about putting them on your wrists – it’s hard to screw it up.

Sea-Band really helped with the nausea. When I had vertigo, I still had vertigo, but it no longer made me nauseated or throw up. The wristbands help with my carsickness too, which is another lovely new development.

The Sea-Band website has a list of clinical trials so maybe there is something to it.

The only downside is, with the Classic EDS, the wristbands leave a mark / can sometimes itch.


Siouxsie & the Banshees – Seven Year Itch

I think this is the last of the product reviews. Hope you found something that will be helpful for your EDS or POTS. If I find another product to be helpful maybe I’ll write another one someday.

Click to see all my product reviews.

Product Review: Zibra Universal Package Opener

I’m doing some reviews of items that have made my life easier, as I’ve had to adjust to having an Ehlers Danlos syndrome body.

I am not being paid nor am I receiving anything for writing this review, but if you click on a product ad and buy an item I get a % at no additional cost to you.

Zibra Open It Universal Package Opener

Zibra ZPCOPEN-OR Open It Universal Package Opener

This is stupid, I thought, when I bought this thing. I have scissors and knives.

But I have to admit, this thing does the job. On one end is a clipper, and inside the other end (handles) are a retractable screwdriver and boxcutter.

This is why the Open It opener is better than scissors: the clipper/scissor function is SPRING LOADED. So if you have hand pain or weakness you can still cut through that ^#%@ plastic clamshell blister packaging without dislocating or bruising your entire hand.

Plus when I would use scissors I would invariably cut myself on the packaging and bleed all over the durn place.

 The product description on Amazon suggests that it “Solves wrap rage.” I don’t currently have problems with wrap rage so, indeed, it must be working.

NCAA Tennessee Volunteers Garden Gnome

The Zibra opener only comes in 1 color – blaze orange (AKA Vols Orange, in some parts of the country). The color is handy for knowing where it is at all times,  and is fashionable if you live in Tennessee, but may be problematic for consumers who live in FL or AL.

Click to see all my product reviews.

Postural Tachycardia & Ehlers Danlos Links

  1. American Pain Foundation – Research & Practice Update summer 2010
  2. Neurological Deficits in the Life and Works of Frida Kahlo [pdf]
  3. Frida Kahlo: A Portrait of a Body [pdf]
  4. Picture of the day
  5. Visitors Wait in Line for Seven Hours to See Frida Kahlo Exhibition in Berlin
  6. Bleeding and bruising in patients with Ehlers–Danlos syndrome and other collagen vascular disorders
  7. Quality of life in the classic and hypermobility types of Elhers-Danlos syndrome and a reply
  8. Inverse association of general joint hypermobility with hand and knee osteoarthritis and serum cartilage oligomeric matrix protein levels
  9. New Diagnostic Criteria for Marfan, Part 3
  10. Cat bag 🙂
  11. Joint hypermobility and rectal evacuatory dysfunction: an etiological link in abnormal connective tissue? [abstract]
  12. Cell protein suppresses pain 8 times more effectively than morphine and video on youtube.
  13. In the last 18 months, about a dozen studies of experimental drugs Pfizer was testing for Alzheimer’s disease, or various types of cancer and pain, failed because of poor efficacy or safety problems not seen in years of prior research.
  14. Genetics and insurance laws
  15. What Are Heritable Disorders of Connective Tissue? Fast Facts: An Easy-to-Read Series of Publications for the Public
  16. Gastric Electrical Activity Becomes Abnormal in the Upright Position in Patients With Postural Tachycardia Syndrome [abstract]
  17. Heart rate variability analysis in postural orthostatic tachycardia syndrome: a case report [pdf]
  18. Effect of Pregnancy on Postural Tachycardia Syndrome [abstract]

Product Review: Mio Heart Rate Monitor Wristwatch

I’m doing some reviews of items that have made my life easier, as I’ve had to adjust to having an Ehlers Danlos syndrome body.

I am not being paid nor am I receiving anything for writing this review, but if you click on a product ad and buy an item I get a % at no additional cost to you.

Mens Shape Heart Rate Watch-BLACK-

When I was diagnosed with a form of dysautonomia called postural orthostatic tachycardia syndrome, it was suggested that a heart rate monitor would be helpful for tracking heart rates.

It’s good to know that the nausea & stupidity you are experiencing is from your heart rocking out at 130+ beats per minute.

What attracted me to this watch is that it doesn’t require the use of a chest strap.  Since I do things like choosing my wardrobe because of the texture of the fabrics, I knew I wouldn’t tolerate having a chest strap around me for long periods of time.

I use an Apple computer nowadays too & Polar brand heart rate watches, though they have all kinds of neat database tracking and charting of your heart rate, don’t work with Macs so they weren’t an option. In fact I haven’t seen ANY heart rate watches that will interface with a Mac. 😦 No tracking at all for this Mio watch.

I’m pleased with my choice. I’ve accidentally put this heart rate monitor through the washer. And the dryer. Twice. And it still works well.

Click to see all my product reviews.

Product Review: Slimfit Wrist Support Brace

I’m doing some reviews of items that have made my life easier, as I’ve had to adjust to having an Ehlers Danlos syndrome body.

I am not being paid nor am I receiving anything for writing this review, but if you click on a product ad and buy an item I get a % at no additional cost to you.

Wellgate for Women Slimfit Wrist Support


Wellgate for Women Slimfit Wrist Support, Right

I have a skinny upper body and a fat lower body. My arms / wrists are thin so I was happy to find a wrist brace that has an adjustable and comfortable fit. I can sleep in it with no problem because it has cozy memory foam inside and secure straps on the outside.
The Slimfit Wrist Support brace is wearing very well – I’ve used it a lot and the seams and fabric are holding up. The manufacturer says to hand wash the brace but I’ve put it in the washer in a lingerie bag and then air dried it and it didn’t get wrecked.
This wrist brace never gets a sweaty stinky smell, either. I hate that foam rubbery stinky smelly stench that some man-made fabric or foam can get.
[Joan Crawford voice: “NO FOAM RUBBER, EVER!”]

Mommie Dearest (Hollywood Royalty/Special Collector’s Edition)

Click to see all my product reviews.