Just Wondering...

[Sara67]

Hi guys,

I'm new to all this and undiagnosed... I've got ME, Grave's Disease (under control atm) and BPPV (inner ear balance thingy). I've been having some problems when upright - light-headed and dizzy on standing, and I get these weird, sudden blood pressure drops that can happen when I'm just sitting for too long - I'll suddenly feel really sick, as if I'm about to pass out, have cold, clammy skin and can't see properly. I've been hooked up to a BP monitor for the last three months and have to take three readings a day - lying down, standing up and standing up for three mins, and have only managed to catch a couple of those weird sudden drops. Readings were:

109/77 103/76 68/42 and 106/73 (Pulse 65) 96/78 (P 90) (Couldn't do the standing one or I'd have ended up on the floor )

I'm a typical Can-walk-around-the-supermarket-but-can't-stand-at-the-till person.

I'm not gonna list a whole load of readings as I'm hoping you'll be my friends, but just a few random ones...

104/64 (75), 104/82 (P109) 119/86 (P85)

112/74 (75) 123/100 (95) 121/93 (82)

117/78 (74) 118/101 (102) 123/102 (89)

Sometimes my BP goes up, sometimes it drops, but I don't think it's severe enough for a diagnosis. Does this sound at all familiar to anyone? It's another month before I see the consultant and I think he's gonna say I'm fine. Any opinions would be greatfully received.

Hope you're all enjoying a fab Christmas. Thanks!

[Chaos]

Hi and welcome! Sorry you're having to deal with so many issues. Sounds like you have a full plate already without needing anything more to handle!

When looking at your numbers, it looks like you are showing a pretty narrow pulse pressure on some of those readings since a normal pulse pressure should have at least a 25% difference between your top and bottom numbers. Your numbers look somewhat similar to some of the readings I've had at times. Certainly those big drops into the 60's/40's seem to indicate a problem. I have NMH (neurally mediated hypotension) which causes me to have similar drops in BP. My POTS neuro has told me that narrow pulse pressures are a common finding in patients with dysautonomia.

With a diagnosis of ME, it's not uncommon to have autonomic issues, is it? I was thinking that was one of the criteria they used as a basis to get a ME diagnosis.

Have you had a TTT?

[Sara67]

Hi, Chaos,

Thank you so much for replying. OI symptoms used to be part of ME diagnosis but criteria here changed when the psychologists took over the illness - here in the UK, ME is pretty much considered to be all in your head *slams head against a wall*

I haven't had a TTT - I think it'll depend on the BP monitor findings and my numbers don't seem severe enough. Some days are relatively normal... A lot of my problems come from being on my feet too long - have had some interesting falls from going dizzy or from the world suddenly tilting...

[Chaos]

Interesting that the psychologists have managed to take over the ME diagnosis in the UK. Here's the link to the International consensus statement on ME/CFS that was published in 2011. It was followed this year with a guide for medical practitioners with specifics on what they should be looking for objectively in testing etc. You probably know all this, but am including the link in case you haven't seen it.

http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/full

Just the fact that you're falling from being dizzy seems like it might warrant a TTT, but that's my opinion. LOL.

Have you tried doing a poorman's TTT? I see you are doing orthostatic BPs from your description above, but would be curious to see what a PTTT would show.

To do it, you need to lie down quietly for at least 15-30 minutes. Some people say doing it first thing in the morning is best. Take your BP and pulse lying down. Then stand by your bed (so you can lie down quickly if necessary) with as little movement as possible. Take your BP and pulse at 1 minute, 3, 5, 8,10 minutes. This might give you more info to share with your doctor which might help him decide if a TTT is warranted.