What came first?

I'm not functioning too well at present.
I'm still feeling really fluy and "sick" and very fatigued.

On top of it, I'm having major issues with OI (Orthostatic Intolerance).
I'm wondering if the OI is causing me to feel worse or if the OI is worse because I'm so sick as of late.

What came first, the chicken or the egg - right?

I'm trying to figure out how mainstream an understanding of OI is with clinicians.

There seem to be many conditions where people experience a drop in blood pressure after standing (pregnancy, certain drugs, long periods of bed rest) so it's not unknown.

I saw a GP at my local clinic about black outs and a fainting episode yesterday.

I told him my specialist had told me it was OI at one point. She had done a supine and standing BP quite a few years ago and had seen at least a 30pt drop in systolic BP.

He checked my heart.

Then he had me laying down and took my heart rate (HR) and blood pressure (BP).

He had me stand up (I was leaning on the table a bit but he didn't say anything) and after 2 min of standing he took my BP and HR again. I was already dizzy but he said my blood pressure hadn't dropped at all. However, my heart rate had gone from 70 to over 120 in just two minutes with the effort of standing.

He speculated it's just my body working hard due to M.E./CFS.

Sue from:
http://livewithcfs.blogspot.com/
sent me some literature from Dr. Rowe at John Hopkins on OI and having read it I realize that this is something called POTS, which is a form of OI. And while the GP said that the over 50pt raise in HR probably wouldn't cause light headedness, the literature said otherwise.

Now I've got to decide what to do.

Canada's medical system is different than some countries. We all have equal access to care, but to see a specialist or to receive testing that is non-emergency you wait - often months.

At the end of the appointment I asked the GP if he'd heard of tilt testing and he looked it up. He said he wouldn't consider it (there is none in this city) unless I went through a bunch of other tests first. I'm often hesitant to do a bunch of testing that takes time and energy only to tell me nothing has been found. Also, from the pamphlet Sue sent me, it seems that a tilt test isn't really needed to diagnose OI anyways.

So, it seems that I could go through a bunch of cardiac testing that will take months, or wait for my specialist appointment in August. She is familiar with OI and could treat me with no tests at all. It just means I have to deal with fairly severe symptoms for 2 1/2 months with self treatment until then. (Although hopefully they improve on their own).

I'm guessing either route will take about the same amount of time, but one route will involve a huge energy output on my part at a time when I'm quite ill and limited.

So this is where I am at present.

I'm going to think about it for a few days.

As for blogging, I may take a break for a while. I will still check in on the blogs I follow from time to time and I expect I will eventually return to blogging. I hope everyone is doing OK these days and thanks for your support over the couple years I've been part of this blogging community.

update - more OI

So after a 12 day MAJOR crash I'm feeling a tad better the last two days. Since I've had such a terrible Winter and Spring, it's almost like it wasn't a crash, more of a long, seemingly endless flu.

I think partly my system is just so run down from the disease right now, that I'm crashing much more easily. Yesterday and today I was able to sit outside a bit and pull a few weeds in the gardens. Yay!

This is the time of year where I tend to pick up. I'm hoping this is it, and that I climb back up to where I was last fall - which is mild moderate M.E. (a couple hours work at home most days with a few outings a week under 2 hours) instead of mild severe (housebound and laying down most the day).

I saw my NP today and we discussed the dizziness and possible OI (Orthostatic Intollerance). She checked me in the office (sitting and standing) and there was only a 2 or 3 point drop.

However, I'm still pretty sure the black-outs are OI as I've had OI symptoms since the first year of M.E. They get worse when I'm crashed which I have been.

Now I have to see a Dr. this week (at my clinic) which I'm not looking forward to. Anyone have any good literature on OI and M.E. from a reputable source?

Holter monitor w/ blood pressure anyone?

Has anyone done a 24 hour holter monitor test with blood pressure? Will this detect Orthostatic Intollerance(OI)? For some reason I thought it was detected through tilt table testing.

I went to the walk-in (which I absolutely hate doing) after 10 days of pretty severe dizzy spells on standing or with activity.

The Dr. saw a fluid build up in my ear which explains the dizziness on moving.

My blood pressure sitting was fine, however, he thought I could be having spells of blood pressure decrease on standing.

I'm just wondering if anyone has had this test done and for what reasons?

The reason I ask is that if this test won't detect OI, then I don't want to bother with it.

The glass box

I've been quite crashed since Saturday.

Very very fluy and weak. I've been needing at least an hour of rest after a bath. I had to sit on the floor and take breaks while folding laundry - that kind of crashed.

The OI (Orthostatic Intolerance) has been pretty bad too this week with frequent dizzy spells and multiple blackouts and near faints.

The Valtrex is causing some mild dizziness and some mild headaches.

Lots of bed time - and bed time without reading and computer....just plain rest. Probably 90% of my day horizontal presently.

I'm frustrated with being sick and just feeling so ill.

I caused this crash (I'm pretty sure). Last Saturday I went in the back yard where we (meaning my housemates) had done some major construction on the house last summer. There's all sorts of cement chunks that need to go to the dump and it's "free dump" week. On top of it all, one of my house-mates just found out he has a heart condition. So I thought I'd help by just separating a few of the smaller cement pieces from the dirt pile. Really they were small pieces, it was nothing too dramatic.

After doing a few I started getting the dizzys. I would lean down to get one and just black out so I figured I should stop.

If you have M.E you're probably thinking "Why would anyone with M.E. do such a thing?" "What was she expecting?".....sigh....I guess I just wanted to DO SOMETHING. Something to help and something even a little physical. I'm sick of living in the box.

My specialist uses the analogy of M.E. being like living in a glass box. As long as you live in the little glass box (the walls are your limits), you can do OK and avoid most crashes. However, if you try to push past your limits, breaking the walls of your box, you end up getting hurt. Well sometimes I guess I just want to smash the walls of my box all together.