Does this sound like POTS?

[Valentijn]

My HR was roughly between 65-70 and that was for around 15 minutes.
What was interesting was when I was standing up, my HR was constantly yo-yoing. I was only stood up for 3 minutes. But my HR went up to 102 immediately, then dropped back to around 85, then back up over 100 again, then dropped back down to 85ish again.

Going up to 80 after being 70 while sitting is normal. But going up to 100+ (30 or more higher than when sitting) when you stood means you have POTS.

 

[jonnyboy]

Cheers Valentijn,

I mentioned the possibilty of POTS to my consultant before I had the tests yesterday. He knew all about it. What was interesting was his comments. He said POTS just literally describes a symptom i.e. a fast heart rate upon standing...he likened it to say have a blue hand, and calling it blue hand syndrome. He said what were are looking for in these tests is 'why' you might have it, so the underlying cause.

 

[Sallysblooms]

Huh? Guess he doesn't know what POTS is. POTS has tachycardia, yes. It is a dysfunction of the autonomic nervous system with MANY problems. Some are serious. We have lost some POTSYS over the last few months. Makes me sad if your doctor has no clue.

 

[jonnyboy]

Sally I'm not sure, he was an autonomic physicist, and he knew what I meant by POTS, which is more than my regular doctor who had never heard of it. I think at the time he wasn't wanting to get drawn into a long conversation about POTS with me, as this was before my test so he didn't have any of my data to look at it. I think what he was getting at was POTS has many causes, and if I had it they would try to work out why I had it. I think I just explained that badly in the last post. The doc wasn't in anyway making light of the condition to me.

Sorry if my last post sounded dismissive, as I didn't intend it to be.

 

[Sallysblooms]

The doctor made it sound bad, not you. It is fine.

I have read textbooks, papers, studies, and I have a great integrative doctor that understands it well. It doesn't matter at all what a doctor that doesn't understand it would say. Specialists seem to know very little about it which is odd. I know so many POTSYS that get very little help from neurologists.

 

[ahimsa]

Sally I'm not sure, he was an autonomic physicist, and he knew what I meant by POTS, which is more than my regular doctor who had never heard of it. I think at the time he wasn't wanting to get drawn into a long conversation about POTS with me, as this was before my test so he didn't have any of my data to look at it. I think what he was getting at was POTS has many causes, and if I had it they would try to work out why I had it. I think I just explained that badly in the last post. The doc wasn't in anyway making light of the condition to me.

That's good to hear. I have read that there are several different kinds of POTS and depending on the kind there may be different treatments. (e.g., here are a couple links that I found - http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2600095/ and http://circ.ahajournals.org/content/117/21/2814.full ) So, if he was an expert, then maybe that's what he was talking about. Keep us posted if you can!

Edited: fixed the link -- I had pasted in the wrong one

By the way, here's one quote from that second link - "It is presently felt that in many patients this form of POTS is an autoimmune disorder."

 

[taniaaust1]

Hi Glad to hear you are managing to get some tests done. An increase of 30 beats per minute shift from a laying reading to a standing reading is POTS. So yeah depending on your increase you may not now need tilt table testing.

What was interesting was sodium benzoate, and other benzene derivatives were contained in practically every cosmetic i use on a daily basis. From my mouth wash, moisturiser, hair gel, shampoo, shower gel and conditioner and even hand soaps around the house. So the whole time I've been ill I've been perpetually exposing myself to this substance unknowingly. I had a DNA adducts test done too, and although I didn't really understand the meaning of that test too well, it showed benzoates where stuck all over my dna and 1 gene as well. So first thing I think is to avoid all these substances altogether, then work on trying to get rid of what is inside my body.

With ME/CFS it is always a good idea to avoid chemicals where possible as our bodies dont seem to break down these as well or something (many of our pathways have issues).

Many of us end up developing Multiple chemical sensitivity too and I personally think the more exposure someone has to chemicals with our condition, possibly the more likely we are to get MCS which we are at high risk for due to the ME anyway. (I developed MCS after 7-8 years of ME ..when I was in a better point of my illness and working part time using chemicals as I was doing house cleaning for people).

I recommend not just looking at changing to non chemical shampoos put also look at what other chemicals you use at home too and look at changing everything to safer things which possibly could lessen your risk of getting the MCS part of ME.