BadBadBear

Thanks Alex, interesting that Florinef caused it for you! I had my puffy eyes a few months before going on Florinef, and it started all at once. No other major signs of edema from Florinef, it really doesn't seem to bloat me up too much. Well, other than my chest. Ugh.

I will try to grab a picture of the eyelid puffies in the next day or two, I think it would be good to show my optometrist and I can post it here.

How much water intake did you find detrimental? I am trying to limit to 1 gallon per day, but it's tough. I'm very thirsty all the time, though it has been better since I added some bicarbonate to my electrolyte mix... I probably should test my saliva pH and see if I'm acidic, since alkalyzing is relieving. I wondered if being acidic might make my tears acidic and irritating, too.

Hi Kimbell, thanks for the info. You know, my grandma has blepharitis. I suppose I could try a titch of her ointment at night to see if my eyes clear up in the morning (she has erythromycin). That's actually a very interesting idea. Does the baby shampoo further dry your eyes? And do you notice a difference with preservative-free eyedrops? Just curious about that as I'm sure my drops are not preservative free.

Sorry for the 20 questions, BTW.

Your cloudy corneas symptom does not sound good at all!

I need to post a picture of my eyelid swelling. There is kind of a pouch above the inner eye corner, and it's totally pooched out in the morning. I wondered if it's an irritated gland or ?? It does not look like the blepharitis I've seen, but I suppose it could present differently in different people. I rarely have much for eye crusties, either.

For orange flavor, I add a TBSP of orange juice concentrate (organic for me, please). Cascadian Organic has 28 calories in a TBSP. Then add a few drops of stevia, and it makes a nice tasting electrolyte. I also use grape concentrate sometimes.

I just got some potassium bicarbonate and am using that in my mix -

16 oz. water

1/4 tsp salt (add more if needed)

1/4 tsp potassium bicarb (which has 500 mg potassium)

TBSP fruit juice concentrate

1/2 tsp Calm magensium powder

Stevia to taste

This mix does not taste salty to me at all and should be alkalyzing as well, if you need to lower your acidity. My bloodwork has shown too much acidity (elevated anion gap).

I have a Garmin, yes the alarm would beep at you if your pulse went above or below whatever limit you set. I wouldn't recommend the exact model I have (Forerunner), though - one it is fairly expensive, two is it's really large to wear all the time. I've had the Timex and Polar HRM's before and they were more compact.

If your heartrate goes up before you pass out and you'd have a good warning system, it sounds like a very wise idea.

The nice thing about the Garmin is being able to download data to a computer. That's a feature you might consider, if you want to be able to chart what your heart is doing. I have used the Forerunner for home TTT and it's very useful to see exactly what happens. I am guessing other brands offer that feature, and maybe it's not as pricey as it used to be, as my watch is several years old now.

- Michelle

Does anyone else get gnarly eyelid swelling at night? I am wondering if this is POTS related or something else? It's mostly my upper lids - they are comically puffed up in the morning. I started having this symptom when my bad flare up happened (Oct. last year) and am still having it almost every morning.

I have been looking into Sjogrens, and wondering if it's a comorbid w/ my POTS. Rich's post about his Sjogren's diagnosis got me interested in following up that lead possibly with my optometrist?

- Michelle

Great, thanks for the info CupCake and DGW! That makes me confident about ordering a pair.

I know I used to feel good when I wore running tights (when I was running), so I am hoping it's kind of like that feeling - legs feeling more energized and less heavy.

Ugh, I hadn't thought about needing several pairs. I can see how that would be a must in warm weather, though!

AH, thanks so much!!! I wondered how all the blood pooled in the spleen! LOL And how the heck anyone would know... Thank you also for the info about how it physically looks to have that.

The only thing I can notice on myself is distention of the veins in my arms and feet at times, but no signs that I can tell of pooling (no redness, edema, etc.).

So I guess I'm neither splanchic nor splenicly pooling.

Zap, that's interesting.

I know my AM cortisol is low-ish (12), but then one of the things the adrenals supposedly really like when they are stressed is salt... So at least for me, I come in a circle back to consuming more salt. I have found that however much salt I consume, I am never bloated. The only time I bloat up is when I go to a lower salt diet - then my abdomen puffs up like a balloon and I'm in complete misery.

I would like to cut back on salt (I'm at about 5-6 grams a day) but I'm not sure how to do it without having issues.

I have a few days of normal BP's now and then - yeah it seems drastic and amazing. I get excited that I'm better, and then - thud - it goes back to 'normal'. I think it's one of those things that you just have to really, really enjoy the healthy time that you have and do the things that you have been unable to do. Health is a gift, and if you are getting well - have fun for yourself and the rest of us!!

BTW, last time I was at the doctors office was during a 'good' two days, and my BP was perfect. It figures!

- Michelle

My issue is increased urination. I am chronically dehydrated - and my bloodwork always shows bun/creatinine being high even if I've been fluid loading all day. I never have nausea, when my stomach isn't working it hurts or feels horridly bloated - but I've only been nauseus a few times in my life (food poisoning, eg.). I probably have thrown up less than 5 times ever. My stomach just doesn't really do nausea. I drink at least a gallon a day, and have a hard time not drinking more (it would be around 2 gallons if I let myself drink all I want).

Thanks for the reply! Very interesting - so it's a visible phenomenon for him. It sounds like he has a good doc, to notice that and try to work out help for him.

I hope someone answers about splenic pooling - I'm very interested about that aspect, too.

- Michelle

I have read many references about people with blood pooling in their legs or their spleen, but I have yet to read how people know this is what happens to them. Does your doctor somehow diagnose splenic pooling or is it something that you know happens because of your own observations? What are the symptoms and signs?

I don't have any idea why I get so much pre-syncope or where my blood 'goes', so I'm curious about this aspect. Is trialing compression garments the best way to figure it all out?

I have an echo and a first TTT coming up next week, and I'm sure my mind is spinning with too many questions (like is it really worth it to do all these tests?). So thanks for indulging me on this!!

Thanks!

- Michelle

Oh, great! Thanks for all the brand recommendations. I also appreciate the commiseration about Florinef! Ugggggh.

Pretty soon my jeans will be tight enough to provide all my compression needs. Maybe that's the basic mechanism of Florinef.

Cupcake, what size of Allegros did you buy? Tall? X-Tall? That seems like a good brand to trial with, since they are not as $$$$.

Hi -

First, I'm new so hello everyone.

Second, I've been considering compression hose or tights, but I'm tall and always have a hard time finding long enough tights & hosiery. Can anyone please recommend a brand that works well for a fairly long inseam? I thought about trying the Juzo footless ones, but they are lower compression and if they are a short fit, they might be pretty binding at the calf, I'd think?

I am pretty much mid range in weight for my height, which is 5'9", inseam is 32 or 33" for comparison. Thanks to Florinef, I may soon be overweight for my height, though. That stuff is unkind!!

Thanks so much -

Michelle

While I exercise daily (walking a couple of miles), the amount I can do varies so much, and how I feel afterwards varies, too. This weekend I had a couple of really great days, yesterday was OK, and today I'm crashed. I wish I knew if it was from exertion or ????

I am also in good physical condition, just wish I could do much more than I can. Most of my energy for exercise is directed to walking the dogs and working in the garden. I can piddle around in the garden for an hour or so at a time most days, I am not sure if it's exercise or just 'activity', though. It FEELS like exercise.

- Michelle

ps. As with MargieBee, I also do a restorative yoga class once a week & do home practice.

Hi Andy - I have had that low of readings after coming in from a morning walk... It feels terrible, but at least for me it's not abnormal to be in that low of a range.