Changes: Living With Postural Orthostatic Tachycardia Syndrome

[Rachel]

I am excited to announce that DINET's full length POTS documentary is now available on YouTube.

We are not able to take new DVD orders at this time, but we do hope to make the documentary available on DVD again later on this year. Meanwhile, feel free to watch on YouTube and pass the link on to anyone who may appreciate it.

[L4UR3N]

Thank you so much for this!!!

[issie]

I'm so glad it's available and hope to get another one. I gave mine to a doctor and haven't been able to get one since.

Issie

[martiz]

What a great video! I watched it twice.

Question: @ 26:10 - Dr. Thompson says that there is no diagnosis code. Is that true?

I found orthostatic hypotension and several with tachychardia but not POTS specifically.

2012 ICD-10-CM Code I95.1

Orthostatic hypotension

Applicable To Hypotension, postural Type 1 Excludes neurogenic orthostatic hypotension [shy-Drager] (G90.3) orthostatic hypotension due to drugs (I95.2) Mortality Data Between 1999-2007 there were 190 deaths in the United States where ICD-10 I95.1 was indicated as the underlying cause of death [source: cdc.gov ] ICD-10 I95.1 as underlying cause of death data broken down

[Hope]

So happy to see this, can't wait to start sending it out!

[Rachel]

MartiZ,

Yes, it is true that there is no diagnosis code for POTS. There are ones for other heart rate or blood pressure issues, like the OH code you mentioned above, but there isn't one specifically for POTS.

Rachel

[RichGotsPots]

Cool video! I wish it was 100 hours long lol I also wish there were interviews with some on the autonomic lab docs at Mayo, Vandy, cleveland or Grubb...

Thanks! Rich

[tinkerbella]

Thank you, thank you , thank you ~

[Nikki]

That's great! It makes it much easier to share with friends and family who are interested in learning more about our condition.

[seaboardbc]

It was very validating to hear others talk about their experience with POTS. It really hit home when Dr. Thompson talked about his showering experiences. I look very healthy, but sometimes I find looking healthy to be a disadvantage. For example, people often make ignorant remarks or give me dirty looks when I park in a handicapped parking space (one women, after calling me every name in the book, told me that she was going to call the police on me for using a (my) handicap permit). The ironic thing is I only use handicap spaces on days that I feel "really bad" (I have to laugh, "really bad" is all relative, right?) One of my best doctor visits was a routine visit to my endocrinologist. I was feeling particularly miserable that day (so miserable I almost cancelled my appointment...too sick to go to the doctor, pretty funny, huh). I looked good though and I figured she had no idea how I was feeling. The first thing she said when she walked in was that she felt sorry for me because since I looked so good and she knew that most people didn't realize that I felt awful. The empathy she displayed got me through that day and many other days. I don't even know if she realized the power of her words. Thank you to everyone who made this very powerful documentary. I plan on sharing it with my doctors, my family, my friends, in fact I might have the YouTube link printed on a card so that next time someone gives me a dirty look or asks me facetiously what is wrong with me, I can simply hand them the card and walk away. Thank you, thank you, thank you!!!!

[daddysgirl]

What a great video! Thank you!! I should send the link to all my past "doctors" and friends so they understand POTS.

[mattsmum]

I just found and watched this yesterday. Had a good cry. Thanks for validating what we all feel.

[JAQUIROUIN]

Hello, this video is wonderful. I bought it, and I sent him to Mexico. Ga I served much. Thank you.

[monica]

This is such a great video!!!! Going to share it with family and friends! Thank you

[ladyt]

I loved it. but lost it. so ery glad i can find it on ytube

[AshleyPooh]

I saw this before I ever came to this site. I was like ' wow something that actually sounds like me!'

[Becia]

I needed this video... It's put a lot of what I'm dealing with in perspective, and helps me understand.

[LTCBL]

Can this POTS documentary be forwarded to non DINET members to view? I tried copying and pasting the site and the DINET window stated you have to be a member to access this. Is there a way around this so it can be shared with friends and family?

LTC Bill

[AllAboutPeace]

Hi LTC Bill,

The documentary can be found directly on YouTube, if you search Changes & Pots or the full title. The video is a great one to share with family and friends. My in laws watched the whole thing and came back to me to talk about it. It was great!

[Zomglawlz]

Great video. Thank you for putting it together. It was very educational, and put a number of things in perspective for me.

[IceLizard]

I went to see Dr. Randy Thompson, but he said my case was too complicated and sent me to Dr. Blair Grubb. LOL! (Because my blood pressure became unreadable during the tilt, he said that I did not have "just POTS")

Then Dr. Grubb, to my surprise, starting pulling on my joints and said I had EDS.

Thanks so much for the video!

[midatlanticdinetuser]

I felt all the feelings watching this...The curse of "looking like" an attractive, healthy, young female...I so wish I lived near Dr. Svetlana or Dr. Thompson. Thanks for making this video resource. I am going to be forwarding it to my current cardiologist and the procedural care team at the hospital where I had my tilt table test last week. They are in dire need of sensitivity training. That procedure was much more horrible and traumatic than it needed to be.

[Rachel]

Hi Midatlantic,

I'm glad the video was helpful for you. I hope it is helpful for your doctors too!

You mentioned that you wish you lived near Dr. Svetlana Blitshteyn. In case you weren't aware, she does offer phone consultations. I'm not sure if this would work with your insurance or not, but I wanted to let you know in case it would be of benefit to you.

I hope that you will be able to find the help and treatment that you need!

Rachel

[Gemma]

Hi, I did see Dr. Blitshtein. Really knowledgable lady. However, she is like 6-7 hours away from me, so I only saw her once. Also, had one phone consult. My insurance will not pay for phone consult, so I could not afford it more then once. I think you only pay cash for phone consult.

[sweinbe6]

Hi I am a woman who is 55 years old who was dx: with MS thirty years ago. one year ago I fainted and was Dx. with dysautonomia. I have chest pain and palps, not felt a pang of hunger for 9 months naseau, food sits there. Migraines!!! fatigue. Has anyone had normal cardiac results with such symptoms. Same as normal gastroperisis test even though food sits there. I need help. No medications have helped me!! for ex: stomach. Inderal for palps and chest pain. Anti inflammatory for back and headaches. Even narcotics don't always work or migraine drugs for Migraines!! Please can someone respond I feel so so sick and so so alone!!!!! My name is Lisa. Oh, I do have the low blood pressure under control with salt tabs. 3000mg two times per day. Thanx!!