I was diagnosed with "neurogenic orthostatic hypotension" about six months ago and was told it was a form of dysautonomia. I can stand as slow as possible and still either have near-syncope or actually pass out. It's taken me ten years to get this diagnosis. I've had so many concussions because I will pass out or can't catch myself and safely get myself sitting or laying before I lose consciousness. Kept being told over and over "it's normal for someone your age and size"... I started seeking a diagnosis when I was 23. My blood pressure on its own is rarely over 90/60, just chronically hypotensive to begin with and doctor's just told me for 10 years to see a therapist and passing out all the time is just normal. Since my diagnosis, I've tried 30-40 thigh highs and an abdominal binder, been on fludricortisone, taking salt tablets, mixing my water with electrolyte powder, eating smaller but more frequent meals, but nothing has really worked. And trying to find more info on this is hard when all of the dysautonomia spaces seem to actually be POTS spaces with some others sprinkled in occasionally. I'd LOVE more info to be easily available for orthostatic hypotension, because nothing I've tried has had any significant positive effect.

@DysautonomiaInformationNetwork

Жыл бұрын

I'm so sorry that nothing has helped your symptoms. You are absolutely correct, most sites, including ours, have a lot of info about POTS and only a bit about other forms of dysautonomia like NOH, OI, etc. It is very frustrating as a patient and as an organization. I can only speak for DINET, but the reason for this is that POTS is the most widely recognized form of dysautonomia, so it has the most research dollars, the most specialists and therefore the most information. I agree that there needs to be more information added from reliable sources about other forms of dysautonomia. DINET is a volunteer organization with no outside funding for research - meaning we collect all of our own information, articles and research. We will do our best to add more information as we find it, but please share anything you come across with us so we can add it to our site. Please send directly to webmaster@dinet.org In the meantime, there is an article on our site about the mechanisms of POTS and other forms of dysautonomia. It explains the physiology but also, there is a list of resources at the end of the article that may be helpful to you. www.dinet.org/info/pots/what-are-the-mechanisms-of-pots-other-forms-of-dysautonomia-r97/ Thank you for sharing your frustration and your recommendations We greatly appreciate your feedback. I sincerely hope you find relief soon.

@benb3756

11 ай бұрын

My journey with orthostatic hypotension is relatively similar to yours. At first, I was diagnosed with pots and was told to put multiple salt sachets into a shot of water which was disgusting and unnecessary to say the least. I then went to a private doctor and got diagnosed with orthostatic hypotension and a spitting valve in my heart. At this point, I was given sodium tablets (Salt) and was told to take three a day. Of course though, in order to get the sodium to do it’s thing I need to drink lots of water. I drink roughly 3-4 litres a day at minimum whilst regularly exercising and having a steady healthier diet. I still experience a dizzy spell every now and then but not every time I stand up like i use too. I’ve really found that the liquids are the key. I’m just a bit disappointed because I’ve become quite bloated as a result of the amount of salt in my system 😂

I think I've had this since I was a kid, doing burpees lowered my pressure so much I had to lie down. At one point in a gym I was instructed to do a back exercise which required me to literally tilt my back down and then up multiple times, and I passed out, even though I didn't do that much effort. Then last year I started going to the gym again, and deadlifts and squats (particularly squats) lowered my pressure so bad sometimes specially when it was hot, I had to lay down multiple times to get back in shape, thankfully I didn't pass out again only that one time. A wonderful doctor, and I say wonderful because I've been to other doctors and said it was normal, measured my blood pressure standing up, then made me lie down for 5 mins, then had me stand up and measured my blood pressure again, and she said there were more than 20ml of mercury difference (from 120 90 to 90 60 I think it was) so she instructed me a month ago to do a tilt test and I already had a cycle ergometry and blood and urine tests done, and those results look fine, but still I need the tilt test. I guess that after the test I will know what type of orthostatic hypotension I have? I see there are a few types.

@DysautonomiaInformationNetwork

Жыл бұрын

Great news that you are getting the testing you need. Keep in mind that depending on the type of dysautonomia, a tilt test does not always give a positive result even if the person does have dysautonomia. Sometimes other diagnostic testing is needed. Best of luck with your testing.

My wife is currently in hospital for the past 2 weeks with this condition and she is no better