Monthly Archives: September 2010

More Ehlers Danlos & Dysautonomia Articles


side effects, sleep, etc

About a month ago, the pain clinic put me on a med (the name of it kind of sounds like cymbals hint hint) to help my myofascial soft tissue pain, and it works pretty good! The only thing is that it makes me crash. As in sleeping 15-20 hours. 😦

So we’ve tried switching from taking it in the day versus afternoon, etc. and somehow I have gotten on this sleep schedule that has me sleeping from 3 to 4 am (insomnia) until 4 or 5pm in the afternoon. Gah. Sleeping 12 hours vs 20 hours is on the right track though.

I’m naturally a night person & I can usually do the “stay up all night” trick to become sleepy the next day, in order to sleep at night like normal people. Not working now though.

I’ve decided going to stick it out for 1 more refill because it is working for my leg muscle and arm muscle pain. I guess you just have to decide if the side effects outweigh the benefits.


One of our cats has been missing for 2 weeks now. If you friended me on facebook that’s her picture in my facebook profile. I’m really sad about it because I must have accidentally let her get out (indoor cat). That’s why I re-joined Facebook – my (small) town is on FB so I’ve posted about her.

For the past 10 years she’s slept right on me every night, so her presence is definitely missed. Very sweet healer kitty.

There’s going to be an ad in the local paper the day after tomorrow; I’m still looking.

FDA Changes Mind About WIthdrawing Midodrine


F.D.A. Backtracks And Returns Drug To Market

Senator Lamar Alexander’s Idiotic Response

This has nothing to do with the letter I sent, regarding the FDA’s withdrawal of Midodrine, because of paperwork issues.

It’s as if Congress isn’t even trying anymore, so let’s be as perfunctory as possible, with a fake-o warm and familiar “first name basis” form letter correspondence.

Pitiful, yet infuriating.

September 2, 2010

Dear Jill,

Thanks very much for getting in touch with me and letting me know what’s on your mind regarding the Food and Drug Administration (FDA) and drug safety.

In May 2007, the FDA Revitalization Act passed the Senate by a vote of 93 to 1. This is the biggest drug safety reform in a decade, and I was proud to support it. This bill reauthorizes the Prescription Drug User Fee Act (PDUFA) and the Medical Device User Fee Act (MDUFA), which help the FDA do a better job approving and monitoring prescription drugs and medical devices. The bill also encourages the research and development of medical treatments for children as well as new antibiotics to combat drug resistant infections. Additionally, the FDA Revitalization Act allows the importation of pharmaceuticals as long as the Secretary of Health and Human Services certifies that the drugs are safe and will save Americans money.

I think that it’s important to give the FDA the tools necessary to make sure our medicines are safe and effective, and to create an environment where there is incentive for the treatments and medications of tomorrow to be developed and brought to market. By enacting the FDA Revitalization Act, I believe we will be able to achieve both these goals.

There are still a number of FDA drug safety issues to discuss, including the approval of follow-on biologics (also known as biosimilars) and compounded medications. As a member of the Senate Committee on Health, Education, Labor, and Pensions, I’ll be paying close attention to drug safety. I appreciate you getting in touch with me, and I’ll be sure to consider your comments as these issues are debated in Washington and in Tennessee.



EDS Conference In Nov 11 & 12, 2010

There’s a 2 day conference in November, and it is $50 for patients. Are patients considered anyone with a connective tissue disorder? That’s pretty cool:

Management of Connective Tissue Disorders and Latest Research: Bicuspid Valves, Marfan Syndrome, Loeys-Dietz Syndrome, Ehlers-Danlos, and Related Diseases

November 11-12, 2010

InterContinental Hotel and Bank of America Conference Center
Cleveland, Ohio

This course is designed to educate physicians and patients on the latest genetic findings for various connective tissue disorders, including Marfan Syndrome, bicuspid valves, Loeys-Dietz Syndrome, Ehlers-Danlos Syndrome, and describe advances in management strategies for patients with these disorders.

The course will present expert didactic presentations, panel discussions, and break-out sessions.