New Random Symptoms Every Day

[Bigskyfam]

Why is it that we have what I think of as our standard symptoms.... Then the most random symptoms that come and go? This afternoon I feel tight. My chest, veins and body in general. It's my first summer with pots and I've been drinking lots of water and staying in the shade and cool. Anyone else have random symptoms? If so what was the weirdest one and how did you deal with it?

[sue1234]

For me, it has been a very annoying problem. I have always drank iced tea for the caffeine to get my sluggish bowels going in the morning AND to help me wake my brain up. I literally take all morning to "wake" up, as I watch morning tv. Anyway, taking in caffeine is a fine line of good and bad. Like the last couple of mornings, I get cold after I drink it and that causes me to feel funny-headed. At the same time my fingers turn white from I guess Raynaud's. Even though my thermometer in the living room says it is 77F, I have to turn the heater on to make the vessels let up. There is NO middle ground! Without caffeine, I can't get my brain functioning and I normally just vasodilate, so I need some tightening from it, just not overboard.

[Bigskyfam]

That's interesting I wonder if it is warm would it have the same effect... I have raynauds now since my pots dx

[sue1234]

I have to say I have NO heat tolerance! So summer is bad for me. This past winter was the first with her that I couldn't handle any cold weather. I am only good between 74-79F. Of course, caffeine alters that for an hour or so.

[Bigskyfam]

Have you ever tried your tea warm?

[sue1234]

Warm liquids make everything vasodilate(soup,showers,etc.) When that happens, it's like my brain loses the ability to think clearly and my vision gets blurry.

[Katybug]

This isn't my weirdest but my most annoying is the excessive sweating. I sweat in a cool shower. Ick! If I do anything remotely physical I have sweat marks everywhere. ...it has looked like I wet my pants from the sweat. Double ick and embarrassing!

My weirdest is my vision when I am a passenger in the car. If I drive, my depth perception is fine, but when I'm a passenger, I get a weird 3-D effect like everything is coming at me in direct vision as well as peripheral vision. This causes adrenaline surges and of course, yes, you guessed it, major sweating. Ick! The only doc that has ever admitted to hearing this symptom from his patients before is the neurosurgeon about to do my surgery. He said he has a hanfful of patients who have described this to him before almost verbatim. So, maybe this is caused by c-spine instability and not POTS. Who knows?

[Bigskyfam]

Isn't it so interesting with what a diff makes when we are in the same position with a diff action or perspective. I rarely have surges when riding but driving I get them more often. Dri fit is that helpful? I know I try to steer towards non athletic clothes. I felt like for months I lived in pjs or comfyworkout gear. I have a dri fit top that was awesome for the gym and my sweatfest

[Katybug]

Haven't tried Dri Fit. Will have to look for it. Jockey makes a line of undies for women called "Stay Cool". I just tried them and they help a bit (not with staying cool, but with the sweating.) I also keep the baby powder people in business. I also have found ice packs that have straps so I can strap them around my midsection to try to cool my core when I want to do yard work or have to be in the heat to groom my horse, etc. It looks odd but the people close to me understand and I gave up caring about everyone else's opinion long ago (I think when I became allergic to almost all makeup and had to stop wearing it a couple of years ago....talk about coming to terms with your vanity.)

[Bigskyfam]

Mentioning allergies... I've never had a reaction to a thing til this spring. Whether it is pollen, sun or a different lotion shampoo ugh

[Bigskyfam]

Ice packs good idea when I garden.. I have a potting bench with stool

[blueskies]

I have my basic symptoms that are always present. Sometimes strongly, sometimes not so much.

At the moment I increased problems with it's tachycardia -- getting a lot of it on the slightest exertion, standing up of course, but when reclining on the sofa or in bed. Sometimes anxiety triggers tachy or maybe it's the tachy making me feel anxious.

I have just experienced a week of no sweating but feeling overheated (and it's cool -- nearly winter -- in Australia). Before this I was sweating like a racehorse, exertion bought it on, just standing too, but often I'd find myself lying reclined on the sofa and I'd break out sweating. It happened in bed too, awake or asleep. As symptoms seem to chop and change, over the past couple of days I'm wondering if I've gone back to 'no sweating' instead of excessive sweating. I had 'no sweating' for about 6 years, followed by excessive sweating for 4 years. I haven't been drinking excessive amounts of fluid in the past week, haven't felt nearly as thirsty and I think a logical guess is because I've stopped sweating so much. I also have erythrmelalgia (EM) and it's been hammering me this past 5 and half months. Before this I went through a period where it wasn't so bad.

I have other symptoms that wax and wane. My constipation is pretty bad but sometimes, quite regularly everything stops completely and I get into a really bad way. Then constipation will lessen a bit and I'll be a bit more comfortable. When constipation as a symptom first started about 9 years ago I did not have a bowel movement without taking heavy duty amounts of magnesium sulphate or the preps they give you for colonoscopies. I dread that state coming back and whenever my bowels stop I fear this time in my life will repeat itself. Some symptoms eg like chest pain have almost ceased, I rarely get chest pain (like heart pain) now. Knock on wood. I got used to it but it was disconcerting.

Gut pain is absent at the moment but it always returns.

It's hard to get a handle on this. There is no knowing what symptom is going to be in the 'ascendancy' from one day to the next. I hate the relentlessness of it.

[sue1234]

Katy, your description of "3-D" when riding in a car is awesome! That would be a great description for me to use about why I quit driving 15 years ago. I just feels like everything coming at me too fast, and yes, from all angles. It definitely causes panic in me, so I quit trying years ago. AND interesting about it possibly related to the neck issue, as if you remember, I have that cervical stenosis issue, too! I want to definitely see if that gets better for you after surgery. If I knew I could drive again, I'd get mine fixed. But then again, I'd have to get my stomach issue taken care of so I could sit more upright too. Too many hurdles!

[Katybug]

Sue,

I do remember you are also plagued with neck issues. I'll let you know how that goes. I am the worst "back seat driver" ever, now.

Bigsky,

Yes, the allergies are ridiculous. Foods, makeup, other hygiene products like soap and shampoo, environmental. I am on allergy shots, H1 & H2 antihistamines. ...I don't know what else I could possibly take.