I occasionally go on the potsplace.com forum. It's a place where "POTSies" can go and discuss our condition. I haven't gone on it for a while because it tends to make me focus on the negative side of everything.
Today, there was discussion of a "HOUSE" episode where the patient was thought to have POTS. After watching it on the internet, I was excited that they mentioned the disease and symptoms. I wish they had gone more into it tho. Of course, being tv, they added drama that had nothing to do with the disease. It ended up being something else, a genetic disorder called chiari (which they checked me for, along with a million other things). This disorder is actually swelling of the lower part of the brain, putting pressure on your spine.
There was another post that described me exactly... I've just never been able to put this side of it into words.
"When I have something important to do - as in, that I have decided needs doing - I will often be 'OK-ish' while focusing on that one thing, so long as I keep going. Then once I am in a 'safe environment' again (like home) I crash. Go like complete jelly, slur my speech, can't think of words let alone sentences, loose coordination, out of breath, heart races, etc... etc. If I then do another 'important/focused/intense' thing, I can 'run off adrenaline' to do it... then crash afterwards. If I haven't quite recovered from the previous crash, my crash will be further down and take longer to recover from. If I keep going through this cycle, it is like I eventually completely run out of energy and I end up zoned out in bed and something could explode in front of me and I wouldn't care. Then it takes me months to pick up again.
"After a hard week, Friday and Saturday I spent doing nothing but watch TV. I had to crawl everywhere and completed about 3 sentences all day - relied heavily on hand signals and key words. I also noticed that my chest got stupidly tight when I did anything upright, and my legs and arms kept 'switching off', light headed, no concentration, brain fog etc. and that my heart rate seemed to go pretty fast at times.
"I actually did this on my Tilt Table tests too - I was talking relatively coherently with a heart rate of 170ish, saying I was 'OK', then they lay me down again and I relaxed and was completely unable to talk. Just mumble. In hind sight, I had felt completely rotten and only part alive at 170bpm, but didn't have the mental capacity to recognize it. I was functioning because I had to. Complicated by the fact that I am scared to be seen as exaggerating my symptoms because that was what I was always accused of as a child. When I could relax again and the adrenaline was no longer 'needed' I couldn't talk. As if I needed the 'fight or flight' reaction to make me able to do the basics."
1 comment:
Hi Hollie,
I came on here because I was admiring a black and white tree photograph of yours hanging on the wall at Hi-Quality Bakery and wanted to know what else you had up your proverbial sleeve. Like many small business sites, I went directly to the "About Me" page.
This is the first I've heard of POTS.
First off, I'm sorry to hear about your struggle. It's incredible the things you have to go through just to get through the day. I empathize, though I cannot relate, but I have a friend who can. She, too, struggles with many of the symptoms you describe in your blog and About Me page. When I talk with her and see her, it hurts me.
While I don't want to make any assumptions or insult you in any way, I wonder if you have considered mycotoxicosis (mold toxicity) as the seed of your ails? This is what my friend suffers from. The medical community knows little about it (though some do know and reject it for political reasons), but there are some physicians here and there who have detailed experience treating those with various types of mycotoxicosis.
I'll not go into detail (as that would make a very long comment blurb!), but I encourage you to read a report by a Dr. Michael Gray (http://eckleylaw.com/article_fullstory.asp?ID=34) to see if it might help you in your venture back to health.
All the best to you,
J.
P.S.: On a more positive note, your photographs are beautiful. I love looking at them when at the bakery. I anticipate decorating my home with some of them, once me and the hubby buy a place. :)
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