BadBadBear

Boo. That is not any fun. I'm sorry you are feeling unwell, Hope.

POTS Dad - I live in CO at 6,500'. For tips, I would say bring elytes and consume plenty of salt so the water she is drinking stays in her. I personally expect that 9,600' is going to be pushing it. I would look for a place to stay that is lower. We have flatlanders stay with us every summer, and some of them are really bothered by about the 3rd day or so (headaches, fatigue, etc. in perfectly healthy people). I found this table for altitude versus comparative percent of oxygen available as compared to sea level. So you can see the difference of staying at 10,000 feet versus 7,000. 0 100% 1,000 96% 2,000 92% 3,000 88% 4,000 85% 5,000 81% 6,000 78% 7,000 75% 8,000 72% 9,000 69% 10,000 66% 11,000 64% 12,000 61% 13,000 59% 14,000 56% 15,000 54% 16,000 52% 17,000 50% 18,000 48% 19,000 46% 20,000 44% Read more: http://www.letsrun.com/forum/flat_read.php?thread=1703524#ixzz2WF0x8sQ0

All you can do is call and leave another message. If you are having problems that need attended to you, it's their job to get back to you.

I have been gluten free for a few years now. There are plenty of other good carbs - fruits, dairy (fresh goat milk for me), quinoa, rice, yams... I do happen to live where it's hard to get GF foods, but we have found places that accomodate me. When we go out, its sushi, steak and greens, etc. It's not as impossibly difficult as it seems at first glance. As with anything, making up your mind to actually do it is the hardest part. I am not completely gluten intolerant, but I noticed improvements in my GI tract and skin improvements. My energy is not as wildly up and crashing down, even though I was a careful gluten eater before (meaning I ate complex carbs and not junky foods). I doubt I'll ever go back to eating gluten, I feel that much better off of it.

I suspect POTS (numerous home tilts have been positive) and Sjogrens. Cardio put me on Florinef for my blood pressure dropping 20 pts. going from supine to standing, but they don't do a POTS workup, unfortunately. I am working toward a Sjogren's diagnosis.

Ok, I tried a cup of black tea this morning since I need to be able to work a little in the garden & pre-syncope was immediately becoming a problem. About 15 minutes after drinking tea, pre-syncope got a bit better and I did get all my seeds planted! I think the trick for me might be using it sparingly, and only when I'm going to be moving around - otherwise it makes me hyperandrogenic and miserable. I drank it around 7:30 a.m. and it's now 10:30 and my BP is dropping back down (92/63, which isn't too bad). I am curious - has anyone else tracked how long the caffeine seems to pump up their BP?

Tinks, two things spring to mind from your post. 1. That is an awfully fast ramping up on the Florinef, are they checking your bloodwork frequently to see how much potassium you need?? They ramped mine up fast like that and I had nothing but trouble for a few months, I had horrid headaches, and then had a heck of a time trying to regulate my potassium (which the doctor allowed to crash). It felt awful. I started mine in early April and am just now stabilizing finally. Is there some reason they didn't let you use the minimum dose for 2-4 weeks to stabilize, and then titrate up carefully? I actually have cut my dose back from .2 as prescribed to .05 and that seems to be a good dose for me AND I can maintain a good potassium level and feel better. It did take a while for me to tell that it helped the pre-syncope - I would say it took at least a month to really tell. 2. If you are taking an OTC potassium supplement, you may need a large number of tablets to get enough potassium. Hopefully they are checking your bloodwork? You need around 7 of the 99mg tabs to equal 10 MEQ. So for ex. when I was on .15 mg, I was losing ~40 MEQ a day - that would have been 28 of the 99mg tabs a day of potassium! It is ridiculous. 3. If you need an easy to swallow potassium, lite salt or potassium bicarb might be a good option to investigate. It's easy to mix into drinks, and at least the potassium bicarb doesn't have much if any flavor... Please don't let them tell you that you don't need bloodwork. Stand up for yourself and make sure they take care of you. That's a high dose of Florinef to be on OTC potassium, esp. if you can't swallow the tablets! Best of luck geting this all titrated correctly, and hopefully it will be a BIG help when you do! - Michelle

I do not know if one causes the other, but I had childhood trauma from infancy onward (some of it really bad) and I remember my health stuff first flaring up when I was 15 and living in a severely abusive home. I don't have much stress and anxiety as an adult, but at the urging of my doc, I am seeing a therapist and dealing with the past. The therapist says that my level of trauma can easily create all kinds of nervous system disregulation, so who knows. The therapist apparently has a degree from the Lollipop Guild and thinks I can tell my cardio about my background, and that will help them diagnose my dysautonomia issues. I think if I mutter a peep about anything, the cardio will use it as a reason to write me off as a head case.

My last pass out was falling in the kitchen while taking a drink of water. I almost broke my nose on the glass when I hit the floor - I had an impression of the rim of the glass bruised into my nose - and I woke up in a puddle of water and broken glass. That one scared me pretty good. Yeah, I'd think warm showers after passing out are not good! You must have vasodialated like crazy!!! Do you usually feel hot before you pass out? Like maybe you flush or something beforehand?

Wow - two hours! I am glad you didn't pass out. I start sweating and then I turn all red and sweat worse and worse and get nauseated, panicky, etc. I try to take my own chair to anyplace I might have to stand (like the Veteran's Day parade, etc.).

Alex, that's funny - my cardiologist also gave me the eat bananas lecture. LOL! 3.2 and under - ugh. I can't imagine how bad that feels.

Yeah, potassium needs to be in range, either high or low is bad news. Low levels can provoke hypertension, supposedly. I did not have this side effect. The only thing I noticed was that I felt kind of jittery and my blood pressure seemed jittery with low potassium - it would either be really low, or jump up to almost normal (which is high for me). Oh, also forgot - I had some mild hand tremors at that potassium level, too. Even my therapist noticed that...

Yeah, I think my docs will only find POTS if it's incidental to the syncope test. I was hopeful before I went in, though... Hopefully I can see the results when I go in Monday. I tried to get them to do a catecholamine test with it, but I couldn't talk them into it. My doc is probably ready to duct tape my mouth shut... I don't know why, but for whatever reason I've only ever passed out one time when someone else was present. Usually I pass out when I'm alone and then someone finds me on the floor or I wake up on my own. I kind of wonder if my body fights it off enough not to pass out when people are around me.

@Looney - yeah, he might not feel good at 3.9. @Bebe - I am suprised they didn't treat you for low potassium at 3.2, Bebe. My docs jumped into action when mine hit 3.4. Yes, I found myself craving potassium foods before my big flareup in Oct., too. I wish there were some really high potassium, low carb food choices. Avocados seem to be about it, otherwise it seems that everything is fairly high in natural carbs.

I get through about half a cup of coffee and it feels like my heart is in a vice. You seriously have no idea how jealous I am right now. (and I opted for decaf this morning instead of a nice cup of tea. SIGH!!)

Hi Alex, thanks for posting this - really interesting info! I thought I was nuts when I calculated that I needed at least 40 MEQ of potassium for .15-.2 mg of Florinef! Thanks for making me feel less crazy.

Hi Looney, what end of the range is he in? I know I feel flat out terrible after my potassium goes below 4.0, even though I'm still "in range". My legs started aching & feeling weak as I went below that potassium level. I started feeling better after my level was up around 4.4, which is at the higher end of mid-range. I am now trying to keep my potassium up toward the high end of range (around 4.8-5.0). My doctor was not helpful at all with this, he was perfectly happy as long as I was at 3.6 or higher, even if I felt awful. Presently I am using potassium bicarb for my potassium. I bought a lb. of it from a wine making supply house - it's food grade, cheap and just need to add a small amount of it in electrolyte drinks. It is pretty much has no bad taste, it's just a fizzy drink when mixed with a splash of lemon. I calculated 1/4 tsp. of what I am taking is about 500-600 mg potassium, and it's much easier to swallow than pills. It's just an idea... I still eat two bananas a day, 2 cups milk, etc. to buff up my potassium, but Florinef takes more of it than I can possibly replace just with diet. Well, unless all I eat is milk, potatoes and bananas.

I had to give up caffeinated coffee due to heart palps. Now I drink an organic decaf that seems very mild. I really miss my REAL coffee, though, and that nice coffee kick. I was thinking of trying a cup of tea this morning, I really need to get my garden finished (I'm late planting, even for Colorado) and I'm having pre-syncope from all the bending over and standing back up. Bleh.

Looney, I did a ton of bloodwork and found that I need approx. 10 MEQ potassium a day for a 0.05 mg. dose of Florinef. That number is with my food, so my total potassium was around 5,000 mg per day. When I was on .2 mg I needed about 40 MEQ per day above my food intake. That seems to be higher than most people need. I am not sure why my body needed so much of it. I would expect that everyone is going to have different needs based on how their body uses it. My worst symptoms were exhaustion and achey, tired legs. I did not get the usual cramps, etc. though my potassium only dropped down to about 3.4 at the lowest. Can you get your doc to order bloodwork so you can check his levels? If he's having shakiness, it seems well worth testing it.

Thanks Katy! That sounds much more like what I expected - 45 minutes of tilt. At home when I've tried it, I usually start from bradycardia, and it takes my heart a while to hit tachy. I am usually up 35 points in 10 minutes, but that can be just 90 BPM because I start off around 55 BPM - then mine just keeps climbing the longer I'm in tilt. It seems very unimpressive compared to those of you who are instantly in tachy. Still feels crummy as it climbs up, tho. - Michelle

Is this normally how tilt tests go? I got strapped to the table, set up for 10 minutes, then back down and giving Iso-whatever, supine for 5 minutes, then back upright for 10 minutes, then back down and given another dose of Iso-whatever, supine for 5 minutes, then back up for 5 minutes. And that was it! I did not pass out. She said they were checking vasopressor response, and that I do not have it. My pulse went nuts, but I think it was just from the Iso-whatever stuff. My blood pressure was totally steady, which seems to be what happens when I'm stressed - it's ALWAYS normal at the office, but at home this morning it was 80/59 (rechecked it and it really was that low) and I was having pre-syncope. ??? Really frustrating !!! Thanks! - Michelle ETA: the med was Isuprel, blech, worst drug trip ever

Tinks, how much did they prescribe for you, and did you start on the lowest dose and then move up? For me, Florinef did not make my blood pressure change but it did decrease the amount of pre-syncope I was having. It did not affect my pulse pressure, which is somewhat narrow at about 20 sometimes. From what I've read, it affects people quite differently... I found that if I took my prescribed dose (.2 mg) I have splitting headaches, and I don't feel any better than I do on .05 mg. After working my way up to 2 mg. of it, I eventually worked back down to .05 mg and have stayed there. It also seriously depleted my potassium at higher doses - at .05 mg, I need about 10 MEQ supplemental potassium a day which gets me to about 5,000 mg daily intake of potassium. I really lose potassium badly at the higher dose, and my docs didn't watch it closely enough... I was needing something like 40 MEQ potassium a day if I take a .2 mg dose. For whatever reason, it really hammers me.

My cardio wants me to cut back to a gallon per day. Counting food, that is pretty tough for me... I do think it dilutes electrolytes. I have found that for me, adding a pinch of bicarb to my e-lytes makes me less thirsty. Also I read an article on Sjogrens (which is a dry mouth & eye syndrome) about N-Acetyl Cysteine being good for daytime thirst. I have combined that with some bicarb and my daytime thirst is a whole lot better than it was. Those might be a couple of things worth trialing to see if they help you with cutting down - esp. if you are reacting to acidity as I was.

The chest straps I have seen are all plastic so no issue for allergies, and I think IAmCertain is saying that the strap was too big... I am much bigger than that, too, and mine fits me and my husband who is around 195#. I am also allergic to nickel, and none of the watch backs have cause me trouble, either - Timex, Garmin, or Polar. All of them that I have had were stainless steel. As Alex said, some of the straps have an easy slot that you can unscrew to change the battery in the strap. I would look for one that is easy to swap batteries, esp. if you plan to use it all the time. Some of the Timex watches are a pain to change the battery in, FWIW (just changed the battery in my Iron Man watch and it was a hassle and now the 'beep' doesn't work on it).

Hi Alex, I have considered allergies, for sure. I switched from a feather pillow to a foam one recently so that's not it. Don't use any fabric softeners, etc. The weird thing is I don't have any daytime allergies at all (I live on a farm). No issues with rhinits or congestion in the morning... I even switched from using normal moisturizers around my eye to occasionally using either avocado oil or coconut oil, which I also use in daytime with no issue. I just have not a clue, though I'm thinking that some of my stuff may be autoimmune (Sjogrens in particular) and am heading to the optometrist in early July to have him check my eyes out. I get crazy red dry eyes in the late evening, I look like a heavy pot smoker around 8:00 PM. Wow, 2L a day. I can't even imagine how that is survivable. I do eat a lot of liquid food, and I count that in my intake (Fitday calculates it for me).