ramakentesh Posted December 12, 2005 Report Share Posted December 12, 2005 You know I dont even tell people I have POTS - I use easier terms like 'low blood volume' 'orthostatic hypotension' or 'Orthostatic tachycardia' - because POTS sounds pretty weird. When I told my sister she actually laughed at its name.Im hoping that if some recent developments are correct and they do truly work out the cause(s) of POTS that maybe they can change its names to something that sounds a little more serious or real...But im sure others out there must agree - pots sounds pretty strange to the average Joe who has never heard of it. Hope no one gets offended by this post... :) Quote Link to comment Share on other sites More sharing options...
JenniferInOhio Posted December 12, 2005 Report Share Posted December 12, 2005 I agree! Quote Link to comment Share on other sites More sharing options...
shannon Posted December 12, 2005 Report Share Posted December 12, 2005 Yep, I get some pretty funny looks when I tell people that I have POTS. I usually just say, "my illness," which sounds mysterious enough too... oh well. That would definately be nice if the name was changed to something that was easier for the public to understand as a true illness. Quote Link to comment Share on other sites More sharing options...
FarKry Posted December 12, 2005 Report Share Posted December 12, 2005 why don't we call it RCD for a Really Crappy Disorder? its not like it doesn't fit the description, it is quite a pain in the neck. I know its not cancer, but cancer isn't crappy, its a much more serious ordeal. but POTS (or RCD ) has compromised the lifestyle of so many people out there, and we're all extremely upset about the fact that there is no definate cure out there. Quote Link to comment Share on other sites More sharing options...
persephone Posted December 12, 2005 Report Share Posted December 12, 2005 Loads of people think I'm saying I've got POX when I tell them I've got POTS!And some people also get it confused with POTTS syndrome, which is something to do with bones, I think....What about STOP instead? It certainly seems to put everyone's life on hold! But equally stupid, I guess. I wonder if dysautonomic tachycardia might be a better name? DT? Just like you have SVT or VT, you could have DT- it does classify as tachycardia, after all? Quote Link to comment Share on other sites More sharing options...
DancingLight Posted December 13, 2005 Report Share Posted December 13, 2005 I guess that my feeling is that the name is actually descriptive...compared to when I would have to say Chronic Fatigue Syndrome.I don't know...most illnesses out there have long complicated names and some are way harder to pronounce thant ours! The bottom line is that it's just a bummer we have it and have to say it to begin with! Emily who is seeminly a bit cranky tonight...and should shut her mouth and go to bed. Quote Link to comment Share on other sites More sharing options...
gwen Posted December 13, 2005 Report Share Posted December 13, 2005 I told someone recently I had pots and they said" Wow, I never knew you even smoked cigarettes!" obviously I restated it was a blood pressure problem,nothing I inhaled:-) Quote Link to comment Share on other sites More sharing options...
LisaColumbus Posted December 13, 2005 Report Share Posted December 13, 2005 I agree that the acronym sounds pretty goofy. However, I don't think the name should be changed. We struggle enough trying to find doctors familiar with this disorder. Thankfully, it IS becoming more well known, changing the name would make our struggles that much more difficult. Quote Link to comment Share on other sites More sharing options...
briarrose Posted December 13, 2005 Report Share Posted December 13, 2005 When I meet someone I usually say that I have Dysautonomia, specifically Positional Orthostatic Tachycardia Syndrome and Orthostatic Intolerance. It wouldn't be nice to say I have POTS, most people that work in the medical community don't know what it is, why would a friend or stranger. It would be the same thing if we went to the doctor and they were speaking with a lot of jargon that we didn't understand because we had never heard it before. Quote Link to comment Share on other sites More sharing options...
pamela Posted December 14, 2005 Report Share Posted December 14, 2005 I agree that POTS sounds a bit off.. and the reaction I get is a dumbfounded look. The best reaction is when you tell someone that your are feeling "Potsy" today. I think some people think I am making a reference to the Happy Days Character named Potsy Weber. So now I say that I am feeling symptomatic to the people who know whats going on with me. But trying to explain to someone that the reason you are so slurrry and dizzy is because of POTS is pretty difficult, frustrating and sometimes dang Hilarious. Quote Link to comment Share on other sites More sharing options...
Guest Julia59 Posted December 14, 2005 Report Share Posted December 14, 2005 I just say I have a neurological disorder affecting the autonomic nervous system and it affects my BP---heart rate, digestion ect. Then I tell them postural orthostatic tachycardia syndrome/or OI---and tell them it's part of dysautonomia----which means ANS dysfunction.I do have a name for hyper adrengic spells-------------------(GEORGE).Julie :0) Quote Link to comment Share on other sites More sharing options...
Evie Posted December 14, 2005 Report Share Posted December 14, 2005 I just say i have orthostatic Intolerance or dysautonomia ... when i told the family about POTS they kept making jokes saying i was Potty. (Potty means crazy in UK and Aus .. im not sure if the term is used in that way in the US) I agree with Emily that its much better than name Chronic fatigue syndrome. You can see people switching off and making many assumptions when you even mention the name. Well not everyone, just a fair few. Quote Link to comment Share on other sites More sharing options...
Jacquie802 Posted December 14, 2005 Report Share Posted December 14, 2005 Gracie I have gotten the same reaction!!!!! Quote Link to comment Share on other sites More sharing options...
worththewords Posted December 14, 2005 Report Share Posted December 14, 2005 On two occasions I've gone to the emergency room in really bad shape. Sometimes increased heart rate and trouble breathing because of it. I would say "I have POTS" and I ended up being drug tested immediately. I'm not a fan of the name. Now I say dysautonomia or a heart condition. In the past I've told people about having problems with my autonomic nervous system and they have asked how I deal with anxiety. Oh well, it's given me a few laughs at least. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted December 14, 2005 Author Report Share Posted December 14, 2005 Yeah at the ER i was asked how I caught POTS - since it was a bone disease caused by TB - atleast they didnt make the drug assumption - although I was half way to fainting and probably looked like i was with my eyes unable to focus and feeling so light-headed - ah the memories...As for DT - well that might make Delirium Tremens assumptions - and they way i tremble sometimes with POTS they might think im coming off a bender! Quote Link to comment Share on other sites More sharing options...
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