Discussion in 'Problems Standing: Orthostatic Intolerance; POTS' started by sleepy237, May 7, 2011.
hopefully sooner than later Sally
I'm sure any analysis is best left to an expert. (I'm not a doctor and I don't even play one on TV! ) Also, as others have said, the fluctuations in heart rate, which you weren't able to observe, play an important part if you have POTS.
However, I do have one comment:
That's a very low or narrow pulse pressure. The difference between the top number (systolic blood pressure) and lower number (diastolic blood pressure) is the pulse pressure. It can go low in normal healthy people when they have a lot of blood loss. In folks like us I think it generally means low blood volume. Back when I used to give blood (when I was young and healthy) they would refuse donations if your pulse pressure was less than 25. Lower than 18 is generally cited as abnormal. So your reading (98-90=8) is very low!
Here's a list of normal vs abnormal readings for blood pressure and heart rate that I found. It is from a patient web site (http://www.oiresource.com/oi.htm) but there is some good info there:
Again, this is just one patient's observation so take all this with a grain of salt! (I don't like to eat too much salt, actually, so I'll take salt tablets instead!)
Congratulations Sleepy--you did it! We need T-shirts or something saying "I survived a Tilt Table Test."
Just a comment on your "weird" reading above: I had the same interval between systolic and diastolic as you did. Mine was 88/80. It didn't feel good!
My doc confirmed that it was "weird" and a definite sign of autonomic dysfunction. We'll be waiting with your for your Doc's report.
Thanks Sushi.. great idea on Tshirts! I hope that cardio will help or i wouldnt have had the test. How did you feel with that 8 points between? I am not sure how to feel at this moment. I am shocked I knew was bad but now i know how bad. Thanks Ahimsa for breakdown. I was hunting the web but found little based on bp reading. Can't wait till cardio writes. "We Survived the Tilt Table Test" will update you be well , love Sleepy
Well done on making it through your tilt table test. Its pretty unpleasant isn't it!
A narrowing of your pulse pressure is not a normal response. A normal pulse pressure is between 30 & 40. A lowered pulse pressure is probably due to the tachycardia. It would make you feel pretty yucky as a pulse pressure of 30 is required for adequate blood perfusion of your organs.
Did they use a drug phase in the test or were the responses drug free? just curious.
Good luck with the cardio & results
Thanks TinyT! Yes was unpleasant test and I am grateful to someone who made me think about the perspective...this illness is more unpleasant . They had the tilt and encouraged me over the weekend while i was starting to panic. They never used medication. I think you mean vasidolator? Had heard it is used sometimes in CFS. No was never mentioned. I went huge energy dip last night and feeling pretty damn rough today but it's not anything I havent experienced before.
Mine does that too at times.
Its an issue called narrowing of the pulse pressure or othostatic narrowing, its a form of orthostatic intollerance.
Dr David Bell (a well ME/CFS specialist) has written quite a bit on this issue and other BP/orthostatic issues in CFS over the years. http://aboutmecfs.org.violet.arvixe.com/Trt/TrtOIBellTest.aspx
(he did have far more descriptive page describing well the various BP adnormalities in ME/CFS but the link I had for that dont work anymore any more thou if do a search for Bell and this issue and CFS you may find something).
Im glad that your othostatic issues have shown up on your test.. hopefully now you will be listened to more.
Yup I meant a vasodilator. Some tilt table tests use two phases, an initial phase and then a drug phase to increase the sensitivity of the test (if you already haven't had a significant response). I was given nitroglycerin sublingually in my tilt table test at 21mins.
Unfortunately I had already had a response indicating POTS (HR increase of 33bpm after HUT) but they were only looking for NMH/ postural hypotension. The nitro caused a big BP drop and a HR increase of 50bpm, but I didn't pass out.
Unfortunately also, even though I have a HR increase indicating POTS and a systolic BP increase after HUT indicating possible hyperadrenergic POTS, the cardio at the local public hospital doesn't think anything of the results. He did admit that he has no experience with POTS/dysautonomia though. So I am waiting to see a neuro who specialises in dysautonomias in the next city.
Hope you recover soon. It took me about 2 weeks to be back to a 'good' baseline
Wow the cardio thought little of it? This worries me. I know from home monitoring that on standing immediately i have increase HR of 30/40 bpm no idea what it did Tuesday and I guess I am glad I couldnt see the ecg or numbers my anxiety would have probably played part then. Not sure I have had what I can call a baseline since this all started. My functioning is very poor and am very limited in what I can do in a day. The twelve spoon theory isnt ideal i know but i wish i had 12 spoons in aday. I wish you luck with the neuro TinyT, this stuff isn't easy to live with and we need someone or something come alone to help, hugs ~Sleepy
Thanks Sleepy! I'm sure you docs will be better than the cardio I saw. Especially with that extreme narrowing of your pulse pressure!
I consistently have HR increases of at least 30bpm, often 40+bpm. E.g. the other morning before my doctors appt I checked my BP/HR in sitting and standing. My HR went from 79 to 123bpm within 3mins! I sat down pretty quickly after as I started feeling a bit light headed.
I showed these results to my GP and she definately thinks I have POTS and that the hospital cardio is clueless. Unfortunately there are only so many treatments we can try together as she is only a general practitioner and some drugs need specialist prescription or govt approval. She also doesn't have any experience in treating POTS but is really open minded and supportive and willing to take a look at anything I bring to her.
I'm back on a beta blocker though, so getting some symptom relief of the tachycardia.
Take it easy : )
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