No Rhyme Or Reason

[stampingamy]

Hi all,

I am going to my neurologist tomorrow for a follow up appointment. I was talking to my husband about how I've been doing. Overall I am doing better with treatment - pedialyte, florinef, not overdoing it. I still have bad days with dizziness, headaches, word finding, clumsiness, etc... but overall I am better. Here is what is bothering me. I can't find a reason that some days are bad. I feel like a bad day should correspond with bad blood pressure readings. But it doesn't.

Does anyone know what goes on with our autonomic nervous system that makes a bad day bad and a good day good? I really feel like I should be able to find a pattern and therefore be able to figure out how to hopefully avoid bad days. Is there any rhyme or reason to any of this????

Amy

[Ernie]

Hi,

Here are 2 interesting links:

Treatments (what helps)

http://www.dinet.org/what_helps.htm

What to Avoid (what makes things worse)

http://www.dinet.org/what_to_avoid.htm

[pat57]

heres another

Myths

http://www.dinet.org/myths.htm

[Lukkychrm42]

If your doctor is worth anything, he'll understand that some symptoms are not (easily, anyway) empirical. So he/she should be asking how you're feeling. And it's great that you're feeling a bit better, and while you might not see easily what that means from a symptom standpoint, you might be able to tell if the bad days are more often than good days, or if "normal" days are really your standard (normal for you). My doctors ask what symptoms I'm getting, which are more often, and which are the worse ones.

On a bad day, you might get symptoms that you don't always get- for example, I used to be nauseated all the time and definitely upon standing, and I wasn't able to eat breakfast. Now that only happens on a bad day.

Yesterday wasn't fabulous, but it was pretty darn good- I stood in line for ages without sitting, doing leg exercises, and while I got hot flashes and was mildly dizzy, I wasn't sweating profusely- it seemed to plateau, I guess. Considering I hadn't planned on that and had avoided bringing my seat cane on purpose, this was a pretty good feeling.

Also, symptoms that might not be a part of your prodrome might appear and make your POTS symptoms worse- so you might get occasional migraines that aren't directly POTS-related and these probably make your day a nightmare.

I think that when you become more aware of your body that you'll start to understand your patterns. That doesn't mean that you won't ever get random issues or such, but I think it just comes with time.

When I was little and would arrive at school (from the walk from the car or bus) sweaty and out of breath, the first two things I did were stopping at the water fountain and going to the bathroom to wipe the sweat off with a paper towel! I didn't know that something was wrong, because I'd always been this way- I just thought I was weird. Now I know what's going on, so I know what I can do to mitigate symptoms or often when and why they might subside.

Of course, this isn't ALWAYS a good thing- like if my HR is too high when I lay down at night, I know that I won't go to sleep, and then I won't. (This is often while changing beta blockers!) Last night I just took some Bach Rescue Remedy and daydreamed a bit and then I woke up at 5 for the bathroom!

Anyway, best of luck with everything!

[morgan617]

The only rhyme or reason for me is that there is no rhyme or reason. I have some triggers, but even those can flucuate. I think of it like having a short in my system, (think a light socket) and you never know when it's going to blink off and on. Just be as prepared as you can for when it does.

Wasn't that helpful! But that's just what I do. I could go crazy trying to figure out what does and doesn't trigger things. morgan

[MomtoGiuliana]

This is a great question that I would love an answer to. There have been discussions about this before. I have no idea. I know some triggers for me are obvious?I tend to feel worse right before my period. Sometimes I also feel worse again right after my period. I can feel worse with POTS during or after a virus, sugar intake, barometric/weather changes, stress, but not always. And some days I wake up feeling crappy and see no obvious trigger. It is frustrating.

I agree that there is often no correlation to bp readings (for me). I was having a great day one day for example, and had a doctor's appt and my bp was 80/50. I can have a bad day with a bp of 110/70. When I was very sick with POTS even when my bp stablized it was months more before I felt well again.