Batik Posted August 16, 2012 Report Share Posted August 16, 2012 I'm new here, and still don't know whether I have POTS, but I'm noticing that certain other medical conditions keep coming up over and over again. So here's a poll for some of the more common ones. It's not public, people won't be able to see your individual answers. The one condition I added which I haven't seen mentioned here is autism spectrum, but I know that there are a lot of people here with ME/CFS, and there's a lot of overlap with ME/CFS and autism spectrum, so I'm curious to see what shows up there. Quote Link to comment Share on other sites More sharing options...
AllAboutPeace Posted August 16, 2012 Report Share Posted August 16, 2012 Batik, Would you be able to add a "none of the above" to your categories? I don't have an answer for question for #2, but it wont let me skip the question. Thanks Quote Link to comment Share on other sites More sharing options...
Batik Posted August 16, 2012 Author Report Share Posted August 16, 2012 Done. Quote Link to comment Share on other sites More sharing options...
Batik Posted August 18, 2012 Author Report Share Posted August 18, 2012 39 votes so far, and certain patterns are starting to show up. About 20% of people so far don't actually have a POTS/ANS problem diagnosis yet, though apart from one missing person whom I am chalking up to error, we think we probably have it. ME/CFS/FMS rates are holding steady at a third, and that's only counting the ones who've actually been diagnosed. That's very high, and may explain a few things such as why some people improve when they exercise and some people just can't tolerate it at all. Migraine was equally common, and evidently is the easiest thing on the list to get diagnosed with. Mast cell disorders are evidently difficult to get diagnosed with and/or one of those things that lots of people think they have, but turn out not to. The vulvodynia mob seem to be early voters, and while it's not that big a number, again I think it's a fair bit higher than for the rest of the population. Ehlers Danlos isn't as high as some of the others, but considering how rare EDS is, it's still significant, and it seems to be vaguely around in terms of familial history and suspected-but-not-diagnosed. Most of us have at least one of the conditions listed in our family histories, too. Quote Link to comment Share on other sites More sharing options...
potsgirl Posted August 22, 2012 Report Share Posted August 22, 2012 I was happy to see that you added Vulvodynia/pelvic pain to your list! Quote Link to comment Share on other sites More sharing options...
Batik Posted October 21, 2012 Author Report Share Posted October 21, 2012 Now that this poll has been up for a while, the main thing that's surprising me is that less than half the people who voted have been diagnosed with POTS or another ANS condition. And not that many more suspect they have it. I'm curious as to who that leaves over, the people who don't have POTS and don't even suspect that they have POTS. People with ME/CFS or other medical conditions with overlapping symptoms? Friends and family of people with POTS?ETA: Oops, I forgot that the percentages shown on these polls are skewy. So it's not 44%, it'e 58/70 people which is 83%. That makes so much more sense! Quote Link to comment Share on other sites More sharing options...
arizona girl Posted October 21, 2012 Report Share Posted October 21, 2012 Well also your poll doesn't include all the conditions that contribute to pots symptoms, as there are many. There are many here with autoimmune diseases, immune deficiencies and small fiber neuropathy. Pots will always show the most because it often is a symptom of all or any of the other conditions which are causing it. Quote Link to comment Share on other sites More sharing options...
Batik Posted October 21, 2012 Author Report Share Posted October 21, 2012 I know, I just put this poll together when I'd recently joined the forum. I didn't want to include every possible condition, I wanted something simple for this particular poll. Feel free to start another one with small fibre neuropathy and so forth.Considering how rare it is, the EDS rate here is through the roof. We're now up to about a third of people here either have EDS or suspect that they do. Quote Link to comment Share on other sites More sharing options...
arizona girl Posted October 22, 2012 Report Share Posted October 22, 2012 Hi Batik, I'm sorry I wasn't asking to have them added and I understood what you were doing. I've been on the forum a long time and there have been other polls similar to yours. If your interested just search polls and they will all pop up. What I was trying to say I guess not so clearly is that your poll was including symptoms along with causes and that because the other commonly known causes here on the forum weren't included the poll would be weighted to eds.You are right there are a lot of people here who have eds, but there are just as many that have other causes. The people that are coming here searching and looking for answers almost all have a rise in heart rate on standing and usually one or two other forms of dysautonomia, like low or high blood pressure and syncope. That is what brings us here for many different reasons.EDS though often has autonomic symptoms and someone with it might not initially think that eds was the reason for it. As I'm sure you've already read eds can cause stretchy vessels and blood pooling that triggers the rise in heart rate.If you are able to find the polls and read the results they are pretty interesting and some of them go back to the start of our wonderful forum in 2004.Take care and I hope you find your cause and some resolution or treatments that work for you. Quote Link to comment Share on other sites More sharing options...
Batik Posted October 24, 2012 Author Report Share Posted October 24, 2012 Yes, I did have a look through some of the polls, though I hadn't worked out the advanced search at that time so it didn't turn up anything like this at the time. Although I'm having a look through the three pages of polls now, and if there are other polls of this nature, it's not made clear from their titles (there are quite a few polls which don't explain what they're about in the title).I don't think there's anything wrong in focusing on certain areas in this poll. Just because it doesn't show other causes of POTS does not mean that the numbers of people with EDS will be distorted. If 1 in 6 people here have an EDS diagnosis, that will be true whether or not other conditions are listed. I can see how separating out cause and effect would also be useful, but I think a simple poll which just lists overlapping conditions is still of value. And with several conditions there's a chicken-and-egg situation at best, anyway. POTS commonly co-exists with ME/CFS, but we still don't know exactly how the two are related and whether one causes the other. I was aware that there were doubtless many more medical conditions which turn up together with POTS, but I wanted to keep it relatively simple, and these were the ones which I was noticing coming up in the forum a great deal. You can't do sophisticated surveys on this forum with the built-in poll function - in fact, you can't even get it to list the percentages correctly, as it goes wrong as soon as you enable multiple answers per question.If you were design a poll to cover the same ground as this, I'd be really interested to see how you'd do it, as you evidently have far more experience with POTS than I do. Quote Link to comment Share on other sites More sharing options...
Dizzysillyak Posted October 24, 2012 Report Share Posted October 24, 2012 Hi Batik,I voted but I don't normally participate in polls. I prefer this type info come from the medical community as they can accurately track based on patients exams, tests, etc. I'm not sure how often this happens in the medical community but the capability is there.BTW. I didn't see celiac or gluten sensitivity in your poll and that's very common in both cfs and POTS. tc ... D Quote Link to comment Share on other sites More sharing options...
Batik Posted October 24, 2012 Author Report Share Posted October 24, 2012 I'm not going to add anything to the poll now as too many people have replied already and it would skew the results, but gluten sensitivity would definitely be a good one to ask about. Quote Link to comment Share on other sites More sharing options...
weathermandj Posted January 15, 2013 Report Share Posted January 15, 2013 I have POTS, EDS - Type III, Migranes, and Autism. They think I have CFS as well. Quote Link to comment Share on other sites More sharing options...
spinner Posted February 17, 2013 Report Share Posted February 17, 2013 POTS symptoms, lower anhidrosis, fibromyalgia, vertigo, pre syncope, sleep apnea, palpitations,tendency to low heartrate, frequent electrolyte problems, extreme sensitvity to MSG, multiple foodallergies, disorder of the central/sympathetic nervous system, vitamin B deficiencies, exposure toparasites, eye problems, palpitations during flares, heat intolerance. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted February 18, 2013 Report Share Posted February 18, 2013 Some patients also often report comorbid autoimmune disease. Quote Link to comment Share on other sites More sharing options...
BadBadBear Posted June 12, 2013 Report Share Posted June 12, 2013 I suspect POTS (numerous home tilts have been positive) and Sjogrens. Cardio put me on Florinef for my blood pressure dropping 20 pts. going from supine to standing, but they don't do a POTS workup, unfortunately.I am working toward a Sjogren's diagnosis. Quote Link to comment Share on other sites More sharing options...
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