ChadK Posted August 30, 2005 Report Share Posted August 30, 2005 I was told that men very very very rarely get POTS. The reason I have researched this is because I have suffered from severe anxiety attacks almost my whole life . About 3 years ago I had a episode that when I sat up or stood up I felt like blood was filling my lungs and my heart was almost 200 BPM. I was taken zoloftup until November of last year and quit. Well the oddest things trigger my anxiety attacks and this time it was the space shuttle taking off and that was about what 2 weeks ago and now for the past 2 weeks I have been very nervous and having panic attacks but 3 days ago I called EMS and they came out and checked my heart and it was 135 and then later I laid down and my heart rate went down but every time I got out of bed I felt real dizzy and felt like blood was getting in my lungs and it seems now it has gotten a little bit better since yesterday because yesterday I could not even get up and today I am a lot better. Doctors I have talked with about POTs say only .185 of Americans get POTS and most all of those are women that pass it on to daughters. Everyone I have asked has said they thought it was my anxiety because my heart was fully checked about 2 years ago when it happened before and they determined I had been dehydrated which may be the case now ? Anyways srry this sounds stupid but wanted you guys take on this long and misspelled paragraph. I do pray for all of you even if I do not have it if you need to talk to anyone because I go through severe anxiety attacks and it really ***** pardon my french but you have to remember its not the end of the world . With all the research I have done on POTS its not that dangerous and can easily be treated with right meds or other forms and I have also read it goes away on its own many times. Anyways hope to hear back from you guys soonChad Quote Link to comment Share on other sites More sharing options...
taylortotmom Posted August 30, 2005 Report Share Posted August 30, 2005 I don't know the statistics for POTS but TYPICALLY it is diagnosed more in women. Yet, POTS is not the only thing that could cause the symptoms you are describing. For instance, I don't have POTS but MVP with dysautonomia, NCS, tachy-brady. MVP is definitely seen in men and women even though it might be diagnosed more in women due to the fact women go to the doctor more often. Young women specifically are much more likely to go to the doctor for routine gynecological exams. Often MVP is detected in these "routine" exams. Young men really don't have a reason to see a doctor on a yearly basis and usually only go to the doctor when there is a problem. So, I personally believe that is part of the reason women get these type of diagnoses more often. Regarding MVP with dysautonomia, my MALE cardiologist has both so it definitely is seen in both sexes. You could request a tilt table test. It not only shows variations in pulse but blood pressure when standing which is my big issue (MAJOR drop) and hydration can and does play a role in this as you stated. Those of us with various dysautonomias often have major hydration deficits as you can tell by reading through previous topics. Another thing is MVP is oftentimes associated with extreme anxiety and panic attacks. Have you ever been told that you have MVP and/or a murmur? It is a usually (but not always) benign condition that is correlated with a myriad of problems. Hope some of this makes sense!Carmen Quote Link to comment Share on other sites More sharing options...
briarrose Posted August 30, 2005 Report Share Posted August 30, 2005 You should talk to Linda Smith at the NDRF because she was telling me a story about a segment that was on a prime time news show, I think about Chiari syndrome. After the show aired they were overwhelmed with men calling. So there is a lot of thought that many men suffer from Dysautonomia's, but it's the women that are being diagnosed not the men.Don't let doctor's discount you and blow you off. Advocate for yourself and find the right answers! Quote Link to comment Share on other sites More sharing options...
Ernie Posted August 30, 2005 Report Share Posted August 30, 2005 Hi,I don't know about other families but in my family there are as many men affected with POTS as women and both genders pass it on to their offsprings.Ernie Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted August 30, 2005 Report Share Posted August 30, 2005 Welcome Chad!Firstly, with the symptoms you describe, I hope that other more serious conditions have been ruled out.Doctors I have talked with about POTs say only .185 of Americans get POTS and most all of those are women that pass it on to daughters. I don't know how doctors could make a statement like that with any assurance--although I don't doubt these statements were made. As far as women passing POTS onto daughters as the primary "form" of POTS--my specialist maintains that not enough is understood about it at this point to know the primary mechanisms or to what extent there is a genetic basis. Clearly it does run in some families. Clearly it is primarily women who develop POTS. But, men do get POTS. As illustration, my specialist has male patients. My specialist, who has studied dysautonomia and treated patients for 10+ years, says that he believes that POTS incidence is far more common than currently believed by most physicians. This disorder is not new, but we are only beginning to understand it, even accept it exists at all!Bottom line--have you had a tilt table test? Have you talked to a doctor about and tried any of the non-medical treatments (compression, extra fluids, electrolytes) to see if they help at all to improve your symptoms?It is true that POTS symptoms improve for most people over time. But a diagnosis and proper treatment might improve your quality of life now if that is what you have. Katherine Quote Link to comment Share on other sites More sharing options...
morgan617 Posted August 30, 2005 Report Share Posted August 30, 2005 I think a lot more men have it than is reported, but like everything else, they are a little more reluctant to come forward, especially if told it's a woman's disease.I know how that sounds, but men usually tend to be a little more stoic and don't want to admit they feel panic or afraid or that their heart races.The majority of doctors still believe heart disease exists only in men, when in fact, more women die of heart disease than men. This is just now coming to light. I believe the truth is, there are so many misconceptions about who can have what and who can't, we just can't be certain. The bottom line is, I believe, The only thing men can't get are female organ problems and the only thing women can't get are prostate troubles, (although I am convinced I have BPH since I pee like a man with bph )So don't let some doctor tell you men don't do or have this. Anything is possible. To admit men have it, would mean it's not a female histrionic condition and would actually have to be looked into. morgan Quote Link to comment Share on other sites More sharing options...
vemee Posted August 30, 2005 Report Share Posted August 30, 2005 Unfortunately I am one of the few guys with pots. I guess I am in touch with my feminine side. I think one reason men are not diagnosed with pots that often is that so few doctors know about pots. I have been at least 10 years trying to get a diagnosis and usually was getting the panic attack, anxiety or nothing wrong diagnosis. Last year I got so bad I ended up leaving work and could not return. I was a firefighter and as of this Friday I will be retired. I will probably have to go to court for state disability retirement because I have one doctor who thinks it is ok to pass out in a fire. Fortunately I did find a good doctor who is trying to treat me and understands the condition. I do not know if I have other conditions that are causing pots, I went to Cleaveland clinic and they found that 44% of my blood pools but no reason why. So far the stockings, florinef and midodrine have not worked. I am limited as to what I can do workwise since any type of lifting seems to set off symptoms. My biggest wish is that I could get rid of the light headiness and brainfog. Quote Link to comment Share on other sites More sharing options...
yogini Posted August 30, 2005 Report Share Posted August 30, 2005 I subscribe to another internet dysautonomia support group which is mostly for NCS, and there are lots of men in that group. Based upon this, my non-scientific guess is that gender is a factor for POTS, but it may not be for other forms of dysautonomia. I think women have a higher HR on average than men, so I can see how this might make us more prone to getting POTS. I do agree that men are less likely to go to the doctor, though, so there are probably loads of them out there undiagnosed!-Rita Quote Link to comment Share on other sites More sharing options...
BuddyLeesWife Posted August 31, 2005 Report Share Posted August 31, 2005 My husband has NCS and the last time we saw Dr. Grubb he said his diagnosis was in the NCS/POTS area of dysautonomia as his BP and heart rate are starting to fluctuate more. His twin brother has more severe symptoms but no firm diagnosis yet. Quote Link to comment Share on other sites More sharing options...
beala Posted September 1, 2005 Report Share Posted September 1, 2005 My 18 year old son has pots.There are more women than men who have pots, I remember reading this in one of Dr. Grubb articles. Yes, the brainfog can be awful my son struggles daily with this and we can't seem to find anything that helps- Quote Link to comment Share on other sites More sharing options...
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