Ehlers Danlos and Pots Worries

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pearjas Supporter
Supporting Member
Aug 30, 2015
Hi everyone,
It's been a while since I have posted on here. My initial posts were of shock when I was initially diagnosed with a slightly enlarged aortic root along with my Ehlers Danlos. (Just hypermobility primarily) I'm extremely high-functioning compared to some I've met with Ehlers Danlos. I go to the gym, don't really have problems with dislocations (as long as I'm careful), etc. All my symptoms aren't visible to the eye really...digestion issues, the aorta thing, sleep...and Pots (Postural tachycardia syndrome). The pots is something that's been there for a while but I think I've gotten so used to it that it never bothered me. While I still don't consider it a problem for me, I notice it more and more, and I wonder if pots can be bad for someone with an aneurysm such as myself.

I started out in 2015 with the aortic root at 3.9 and last year it was at 4.3. I always hear encouraging words from the cardiologist, such as "great" "stable" etc but that doesn't decrease the irritation and anxiety given it continues to tread in the direction I'd not like to see for quite some time. My cardiologist retired, but I'll be seeing another one in September-ish (waiting for our new insurance to kick in). I've seen this cardiologist and he's very good as well. I'm thinking of questions I'm going to ask him when I see him, and one is about Pots.

With me in particular, I'm usually fine, but especially if it's hot or there are other circumstances present, my heart rate climbs and blood pressure drops quite a bit when I'm standing. An example would be grass cutting with a push mower when it's hot and I'm sweating. I've heard so many things over aneurysm maintenance, and heart rate is one I've never read anything consistent on. I know blood pressure is a big deal in terms of keeping an aneurysm under control, but some references say heart rate is as well, and my cardiologist, for example, said it didn't really matter. I've not been able to find any research on Pots related increases in heart rate being 'bad' for aneurysm growth but I have to wonder given how frequent of an occurrence it is now. Given my BP is low though, I don't know if it's cause for concern. While doing things requring standing and duration, particularly in heat, my BP drops to anywhere from 89-120 (top # varies a lot) to around 55-65 for the bottom number.

Obviously heart rate, Pots, aneurysm, etc are all questions for a cardiologist later in the year..but are there any thoughts on this? I just don't want to overlook something that could be contributing to my problems. I am not on any treatment as of right now for the Pots as other than the blood pressure/heart rate, it doesn't bother me that much.