Category Archives: POTS

Postural Orthostatic Tachycardia Syndrome

Update after almost a year; still alive :)

Not much to report – EDS is the same; POTS is worse. Luckily the Vanderbilt Autonomic Clinic is local and I’ve been able to donate my body to science while I’m still alive.

I still keep on eye on new EDS and POTS research but mostly post at Twitter @Jilly since it requires less effort than logging in here etc.

If anyone is still reading here, I hope you all have a great holiday season with loads of salt. 🙂

Chemistry Cat Sodium Joke

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Ehlers Danlos and POTS links August 24, 2012

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. 😛 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. :/

POTS & Flying and Las Vegas Trip Review Part Three


read Part Two


I was very happy to make it to my room and crash for some post-POTS-episode sleep. My room at The Flamingo was kind of worn but it was alright. It would have been nice if there was a in-room coffee maker. The bed was comfortable, and I could get around with my cane OK, since there was a lot of room.

After I woke up, I met up with my sister and brother-in-law (YAY!) and I found out they had a much different check-in experience. A long wait (room not ready) & no blankets on their bed.

The wedding was really nice, and it was great to see family. A nice celebration of love. 🙂

After the wedding my sister and I played some slots and watched the royal wedding on a TV in the casino bar. It was a trip – church and prayers and in the background, slot machines. Then the next day I got my hair cut at the salon at the Flamingo and I love it. I’ve been growing my hair out, to donate, for a few years.

On the way back I wore my cincher / garter belt on the plane and I didn’t have a problem. It’s well-made and works better than an abdominal binder for me because it is tighter.

The person who was pushing my wheelchair on the way to the gate was going to put me through the nude-o-scope at the TSA checkpoint & I just said “I’m not going through that thing; I opt out” so I walked through the x-ray machine no problem.

🙂

POTS & Flying and Las Vegas Trip Review Part Two

Part One


The paramedics met the plane and took me onto the ramp thing you walk onto to get on the plane. There were also a Southwest Air manager and other people – CYA folks I guess. This was the first time I’ve flown Southwest in about 20 years I think and the air crew were very nice and professional through the whole thing.

Anyway, the paramedics checked me out while the rest of the passengers deplaned, and recommended that I go to the hospital. I refused – the ER would just give me some IV fluids. I promised the paramedics that I’d stay hydrated while in Las Vegas (desert!) and signed some release forms. The Southwest manager told me I’d have to get a Dr note to be allowed to fly home on my return trip. The paramedics said that the airport has a clinic, and to show up early for my flight & the Dr there could give me the release. I signed the CYA forms for the paramedics and for the Southwest manager and told her the flight crew did a good job.

My wheelchair assistance from Southwest (which I have to request now to get through airports) was waiting for me at the end of the ramp and took me to get my bag from baggage claim and to get my taxi to the Flamingo.

This is my 3rd or 4th trip to Vegas and the last time I was there was in 2001 for COMDEX, I think. My first impressions, looking out the cab windows, was WOW Brown! (we live in the woods) and OOH Palm Trees! and that things seemed pretty much the same, on the outside, as the trip 10 years before.

Usually I would stay at The Sahara. I liked it because it was cheap but clean, had good service, and most importantly, it had Old Vegas history. It was built in the early 1950’s and is where the Rat Pack performed, plus Marlene Dietrich, Louis Prima & Keeley Smith, etc. Also where Ocean’s Eleven (the ORIGINAL) was filmed. 🙂 This time I wanted to be closer to where my nephew’s wedding was being held & my sister wanted to stay at the Flamingo (we had good luck there before on slots) so I stayed at The Flamingo, down the hall from my sister and brother-in-law.

During the cab ride I grabbed one of those free what’s going on in Vegas coupon magazines, and saw that The Sahara is closing next month! Noooooo! 😦 😦 😦 Wah. After a few minutes, I was already on The Strip at The Flamingo. The check in process was pretty quick and the desk clerk, Dennis, was very polite and gave good customer service.

…to be continued….

POTS & Flying and Las Vegas Trip Review Part One

The last time I flew, I wore an abdominal binder, because flying with postural tachycardia syndrome can be tricky. That flight went OK. But because I was wearing the binder, the TSA took me to a clear plexiglass room between the 2 x-ray lanes and I had to be frisked and lift up my shirt, etc. While my meds and laptop sat on the end of the xray conveyer belt unattended. (This was a few months before the TSA groping policy came into play.)

I chose not to wear my abdominal binder on this trip out to Las Vegas because of that previous TSA experience. Mistake.

About 2 hours into the flight my POTS symptoms kicked in – they feel a lot like a panic attack but are triggered by the air pressure changes/orthostatic changes. Tachycardia, amped up pain level, shaky, kind of an out of body feeling, hands getting numb. I asked the flight attendant for oxygen & he set that up for me & made an “Is there a doctor on board?” announcement. Normally I would have been mortified x 10 but I was feeling so shitty I didn’t care. A doctor from Centennial in Nashville can forward and helped out as did a nurse named Kim from Vanderbilt. They were very nice & both worked in nephrology. The Dr told me to have some bloody mary mix & I drank several.

Before I knew it, it was time to land and be met at the gate by the paramedics.

…to be continued….

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.

Sincerely,

Lamar

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.

😦

The quest for more sodium

Making sure I get enough sodium everyday (10 grams) is a challenge. I don’t like sports drinks because many have sugar substitutes and I can’t tolerate that.

I recently bought a box of Liptons “Soup Secrets” Noodle Soup (chicken) without reading the label too closely. Because of POTS I want to get grocery shopping over with ASAP haha. Plus I’m usually so fogged over I’m not inclined to read/comprehend. I figured soup mix = sodium, OK I’ll buy it.

The label says that there is 670 mg of sodium per serving. A serving is “2 Tbsp.”

Wha? Of powder, unmixed? Says there is 8 servings per container. Is the container the box? Or a packet? (There are 2 packets per box. One mixes 4 C of water per packet.) 670 x 8 = 5360 mg which is 5.36 grams.

Edit: nevermind I found a different type of label on their website, which has more info than the box I bought:

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More sodium than my box too.

So if I ate a packet / 4 C per day that would, according to the label, be 760 x 4 =3040 mg 3.04 grams? Not sure if it is worth it.

Anyway, I made a packet and mixed an egg into the boiling water before I added the packet, to make it like fake-o egg drop soup then I added some lemon juice for fake-o greek chicken lemon soup and have some leftover for my morning sodium shot.