flyingmonkey

How do you check your blood sugar?

Oh, I HATE those lights! I already have photophobia, so when those bright lights shine right in my eyes and bounce off the windows ... What's really awful too is when ppl drive with their brights on.

Does anyone find here that they experience frequent episodes of hypoglycemia? Also has anyone been tested and can someone give advice for preventing it? (other than staying away from simple sugars and starches and such things, which I am already trying to do.) I've noticed that if I have things like fruit or chocolate, or even a white potato, I feel absolutely awful afterwards and get more symptomatic, even if there is a time shortly after where I have more energy. Also, I know I've mentioned before that if I don't eat for a certain amount of time, I start getting catatonic, my brain shuts down and I can make decisions at all. Does this sound like an episode of hypoglycemia? I was recently tested for a bunch of things and the results said I have "low fasting insulin." My doc said it was nothing and wouldn't explain it. What does it mean? I know that too MUCH insulin causes a fall in blood sugar, and not enough causes a rise. SO I have no idea what impact this would have ... I don't know, I'm confuzzled. Also, I don't suppose the ANS controls blood sugar or insulin somehow? OK, sorry for so many questions. --flyingmonkey

Even after being diagnosed, I still worry about being a hypochondriac. And I know there are other people who think I am (example: friends, family). Thank goodness for the internet, allowing us to find some semblance of sanity in connection with others!!! (Hey did you notice my brilliant yet unintentional alliteration?)

I don't, but my mom got something similar to this, only the veins were in her legs. They were all blue and swollen and scraggly, and she had to get them drained by a doctor, which was expensive and didn't really help. They are better now, though. I guess that wasn't really helpful, but no one else had replied ... ! Good luck!

All the time ... my short-term memory is hopeless. I'm always writing things down on scraps of paper to remember them (like homework assigenments) and then I forget where they are, or, more often, forget to look for them in the first place. As for these boards, thank heaven you can scroll down to see the thread. On boards where you can't, I find myself continually going back to read the thread again, and then of course the beginning of the reply I wrote is gone and I have to write it again, by which time I've once more forgotten what I was replying to.

For the record, in my previous post I was talking about general lightheadedness, the kind that follows me around all the time from day to day, and not presyncope -- just in case that wasn't clear. When I get presyncope it's more a dark fuzziness creeping inwards from the edges of my vision, and then sound seems to be coming through water or from a very far distance, and then sight and hearing go completely and I either get down on the floor (if I have enough blood left in my brain to think or move that much) or, more often, just collapse. I wasn't sure whether the original poster meant presycnope, or general lighteheadedness, though.

Hard to describe, but most of the time I feel as if everything is slightly out of place -- it's not something specific I can point to, and it isn't that things are spinning, but I feel disoriented and am not sure where things are. There's a sense of motion even though nothing is really moving. Sometimes it makes me nauseous. I have a tendency to run into walls for no apparent reason. I misjudge where things are.

I get nauseous when I don't eat, and nauseous when I do. The one thing I have found that sometimes helps is ginger. Mostly I just drink a lot of water; my appetite is fairly shaky of late.

Same here! I always feel just awful during my period, but I have noticed that my NCS/POTS symptoms lessen significantly. Strange, eh?

I get cluster headaches and also very very severe headaches that don't respond to migraine medications but don't seem to be tension headaches, so we haven't figured out exactly where they are coming from! For me the clusters are brief but intense, like being stabbed through the eyeball into my brain with a knife, repeatedly, five or six times in the course of a few minutes. Headaches are a mysterious thing to me ... and none of the doctors I've seen seem to know anything about them. One just prescribed med after useless med with a kind of desperate hopelessness ("I have no idea what's going on, so let's just keep her doped and hope she won't notice that I'm not actually doing anything"). Hope you find out what's causing yours! -monkey

I would want them to know that my illness is real, that it isn't all in my head, and that I don't collapse periodically because I want attention. I would want them to know how hard I try. I would want them to know that if I'm not complaining, it is not because I don't feel terrible, it is because I don't want to bring them down. I would want them to know that my body is weak and frustrating but my mind is strong. I would want them to believe that I have this disorder, but not to base their opinion of me on it. I wish I could show them the strength that it takes for me each day to keep going, and the fear that one day it will not be enough, to show them that and have them understand but not pity me for it. But that is a lot to ask!! Mostly, I just want to be believed, and respected.

I can totally relate -- I HATE asking for special treatment, especially at work, where of course I want to appear capable and helpful, not needy! But I do believe it is really important for us all to take care of our needs. The fact is, we do have special needs and we have limitations that other people don't have (much as we may hate to admit it, even to ourselves), and if we don't respect those limitations the results will probably be unpleasant for the people around us, as well as for ourselves. Soo ... try not to feel guilty! Even if other people think that you are getting better treatment than they are, you know the truth: that you have problems they do not have, and the chair is just part of helping you cope with those problems. Congratulations, and be proud of yourself for doing what it takes to take care of yourself! -flyingmonkey