I'm not sure how many times I've heard tilt table tests are really difficult, especially for those with M.E. I've had Postural Orthostatic Tachycardia or at least some form of OI since the day I got ill because since contracting Mono, I've had dizziness, pre-syncope, and occasional faints. The cardiologist I saw here was familiar with OI but not POTS. I told him I suspected it was POTS but he just kept saying OI. I figured at the time it didn't matter because he was willing to try me on some of the drugs that help, and since POTS is a form of OI the drugs are pretty much the same.
Long story short, I tried three drugs, had awful reactions to all of them for different reasons, and basically gave up. My cardiologist retired and there you have it. When my regular NP was worried about my black-outs and vision loss and wanted to refer me to another cardiologist I said "only if it's someone who knows about POTS".
She sent off a referral to the only specialist in the province and we heard nothing for 8 months. Then a few weeks ago, a fax came with an appointment time for testing and only TWO weeks notice (it's a 17 hour drive from here and involves getting a travel grant, booking flights, finding someone to accompany me etc. etc.).
Well I went (part of me is still wondering why given how crashed/relapsed I am at the moment).
If you have M.E. tilt tests are horrible (I'm sure they are no fun for people with any form of OI) but with M.E. crashes are like the worst day of influenza. I haven't heard of anyone with M.E. NOT crashing from a tilt test.
So the two nurse technicians were very nice. I fasted and didn't drink anything from 12 midnight until after my test (which after 3:30pm).
I figured (arrogantly) that it would be bad, but I would tough it out fine. They hooked me up to two types of BP cuffs, heart monitors, and they inserted a port/needle to take blood samples. First they monitored me laying down, then they put straps across my chest and legs and tilted the table upright.
After 10 min upright I was in agony (not pain). I lost most my vision after a few minutes (it was blurry like little spots/partial vision). It stayed that way the rest of the test. I felt light-headed and HOT. Well my sweating problem (I've now discovered) is actually a POTS thing. I was flushed, red, hot and sweat enough that by the end of the test, the table was wet, my gown was wet and my pants were wet.
And, I felt horrible. Shaky. So horrible, anxious, like "I really really really need to lay down". I think??? because they were hoping to see me faint they kept me up for a full half hour even though they probably had a diagnosis at 10 min. It was everything I could do not to scream or cry.
When they finally let me down I did cry because the thought of even sitting up in a car for an hour to get back to my friend's house was just too overwhelming. I wanted to stay horizontal for the rest of my life. After some IV fluids and some time laying down I did feel a little better. That said, once I left the lab, I had to sit down a few more times before we made it to the car.
Because they were doing blood tests during and after I won't get any results for two months (I guess some of the tests take a while). However, she did tell me I was in tachycardia the whole time upright and I heard her tell the specialist "positive for POTS" and (I think?) that I was over 150 BM for more than 10 minutes of the test. It looked from my brief glance (she showed me a little of the data) that I was over 120 the whole time? I'm actually not sure why I didn't faint, though??
Who knows if it it will be worth it that I went. Will they have ideas for a drug I haven't tried? Will they just recommend exercise which makes M.E. and for me, POTS worse? Will I be crashed for the next month from this trip? I'm not sure why I even bothered.
On the other hand:
1. It will finally be on my medical records
2. I now know that my black-outs and vision problems are clearly POTS related
3. I also now know that my sweating problems are POTS....this was news to me. While I have these bouts of sweating I also have major temperature control issues with the M.E. (I get very cold very easily).
