Monthly Archives: October 2011

Changes: Living with Postural Orthostatic Tachycardia Syndrome

CHANGES: Living with Postural Orthostatic Tachycardia Syndrome (POTS)

“If I hear, one more time, how good I look I’d like to punch somebody in the face…” LOLOL

This video was created by the folks at DINET

There are more parts (4, 5 etc) listed on you tube for that video but it actually ends at part 3 (and then starts over again in error). I bet someone with dysautonomia uploaded it haha. đŸ˜› Thanks to whomever did.

I’ve said before that this blog is where I complain about being sick so… venting ahoy!…last week was the first time I said to myself, f*ck it, this (being alive with EDS and POTS) is too hard, I’d rather give up. :/ Didn’t last long though; just have to rearrange my support system (down to 1 IRL person LOL) & have better boundaries.I’m working on my SSDI “function report” – SSA-3373 where you innumerate what you used to be able to do compared to now, in excruciating detail. Blurgh.Last week I also made an appt with the pain clinic (next month) to see about going on Tramadol or whatever. I was reading this thread about pain tolerance & I thought back to when I had my middle finger (ha) accidentally slammed in a car door and broken in a couple places. That was about a 6 on my pain scale. I am about a 4 or 5 all the time though, so maybe I should get something? I’ll talk to my pain Dr about it. I’m getting myofascial release tomorrow and that always knocks the number down for me for a week or so.I have been hesitant to go on pain meds because I don’t want to be all stoned & also, I go to the grocery store etc a couple times a month in the car & I don’t want to have to give up driving. :/

Ehlers Danlos syndrome & POTS Links 10/29/11

Man, POTS really sucks these days. I had an h. pylori test for the nausea etc just in case and it was OK. I could get an upper GI but will wait until we get insurance.Barf-fest this week. (And I got ragged out for an email I sent while I was literally in the middle of barfing LOL – I talked to this person on the phone for hours at a time all this year while this person primarily bitched/vented about their shitty employment & they only asked how I was, like 3 times the whole time. No more.)

Ehlers Danlos syndrome & dysautonomia links 10/16/11

I’ve always thought that the timing of the slow, lingering FDA fiasco with Midodrine was odd, since it coincided with Chelsea Theraputics’ trying to get that Northera orthostatic hypotension drug to market. Chelsea Theraputics’ previous clinical studies on Northera didn’t do well this year UPDATE 2-Chelsea Therapeutics shares fall on Northera study data (Reuters) so they redesigned the studies.

This week shares were up:

Chelsea Therapeutics asks FDA to approve Northera

Their application is being fast-tracked for FDA approval within 60 days, LOL.

From what I understand, Northera crosses the blood-brain barrier, while Midodrine does not.

EDS & Postural Tachycardia Syndrome links 10/10/11