kitchmill

Deucykub, thank you for sharing your story! I think that's exactly my issue, that I'm probably sensitive to a lower level of EVERYTHING (like most of us here) than the general population, or than what would probably show up on a standard test. I happen to work for an environmental insurance company, so I know all about air quality testing for chemicals, mold, etc. and I know that claims get the typical denial if they are below the testing level. It's very hard to prove that you are affected by something that doesn't show up on a test that 80% of the population would be affected by. I suffered through 2 days with the holter monitor, and of course I had no major episodes to note. Got it taken off and started having episodes again. Figures! We'll see what the doctor says when he calls with the results next week. He also ran some blood work and I'm hoping that will show something. I've alway had some borderline numbers on my basic blood work from my PCP, and he's always ignored them and given me the typical "drink more water, eat more salt" answer. I'm hoping that a knowledgable cardiologist will actually PAY ATTENTION to those numbers!!!

I have not taken time off from work for trying new meds, or anything for that matter. I'm actually hoping that my doc wants to try me on Midodrine next because so far the beta blockers are not working and I think we're in the wrong class of meds. But, like the others have said, start slow and work your way up. I just deal with side effects as the come and if I get bad enough to need a day off here and there, I take it.

Well the office has said that there was no leak and that there was such a small amount of refrigerant in the HVAC system to begin with. But my department head is still very concerned and has asked me to watch my symptoms. She understands that there are many things in the new building that can cause problems, like new carpets and paint fumes. The doc today agreed. Could be anything, or it could be my medication (acebutolol). He has put me on a heart monitor for 48 hours - which I am not happy about but that's another story - and is also doing blood work and then will decide if he wants to change my medication. Anyway, if things keep up, my boss suggested that I could move to the other building temporarily to see if that helps but that would be short lived since that building is scheduled to move into our new building in June anyway. We'll see what happens.

Thanks for the tips, everyone! Another Casper here. I actually use my kids' Water Babies SPF 55 when I go out in the sun, so no chance of any color on me! In fact, I spent 5 days in Mexico on vacation last month and came home with only a small burn around my hairline where I must have missed applying the lotion one day. I'm going to have to try some of this lotion so I don't look so white all summer!!! Rachel

We moved into a new office a little over a month ago. Not long after starting in the new office, I remember my POTS symptoms changing. I suddenly started having dizziness while seated or not moving, which is totally new for me. Of course, with my history I immediately associated it with POTS and when it continued I made an appointment with my cardiologist. First available appointment was/is for this coming Monday afternoon (and of course, I have to take a half day of work to get there! ) so I booked it and I've been waiting for the appointment. In the mean time, once the weather here changed we started having major problems with the HVAC system. One day, the thermostat near my cubicle got all the way up to 84 degrees (you can imagine how uncomfortable I was!). All of the thermostats in my department were wacky. They fixed whatever was wrong that day, but the issue kept happening. A few days later, we overheard someone saying that something was leaking and the guy working on them had some portable gas tanks. I started thinking about it (I work for an environmental insurance company and I know that leaking gas is not a good thing!) and realized that it was possible that it was the GAS that has been causing me this problem all along. Yesterday, the guy was back with another tank and I got the name of the product and looked it up on the internet. Sure enough, side effects from inhalation are dizziness, headaches and fatigue. Also causes complications with heart conditions. LOVELY! I reported the issue to my boss and the department head, and they are checking to find out if there really was a leak and if it's fixed or not. I can't believe that all this time I thought it was ME though. Now, I don't know if I should be going to the doc because essentially *I* don't have a problem. I don't want him to change my meds if it's something that was in the air causing these symptoms, right? But, on the other hand, should I still discuss this to make sure that I don't have any additional issues with exposure to this chemical for such a prolonged period of time? Clearly it was affecting me.

I've been seeing an acupuncturist since September for my migraines (and he's helped with some other things, too) since I wasn't responding to any of the meds that I've tried. When I told him about my extreme fatigue and exhaustion, he told me to try a product called Royal Jelly. It's essentially honey made by the queen bee. You can find it in some natural food stores. In doing some reading about it, the energizing qualities have something to do with the long life span of the queen bee vs. the very short life span of regular bees. Ok, whatever, I gave it a try a few months back and I did see a difference. Then I ran out and stopped taking it for a little while. Started getting more fatigued again and more easily exhausted. So, now I'm back to taking it again and hoping it will make a difference and it was not just a coincidence. Just wondering if anyone else has ever heard of it or tried it.

I took Accutane when I was in college and YES, it helped!!! But, they dry skin and chapped lips were horrible, and a long term side effect is that I can NEVER go out in the sun without burning. I used to wear SPF 15 as a kid and I would tan nicely. Now, I have to wear minimum of 45 (I usually just use my kids' Water Babies 55!) or else I burn instantly. And, of course after a few years the acne came back. Not as bad at first, and actually when I was pregnant with my son my face completely cleared up. But now it is getting pretty bad again. At 32, I feel like a teenager again but I would not consider Accutane again since I have such chemical sensitivities now. My luck, it would have the opposite effect on me or something!

Ahh, learning more and more here every day! I have horrible allergies, but not all of my nasal symptoms are due to my allergies. Sounds like I've just pinned down another mystery problem that I've had all of my life.

I've had the same issues. It took forever to get a diagnosis, and it was a series of coincidences that I finally did get a diagnosis of POTS. But since I am considered mild, I still have problems with people, including DH, understanding what I go through on a daily basis. My DH doesn't understand that I am too weak in the mornings to stand up while I brush my teeth, or too exhausted after working all day to stay up late and do household chores. We have 2 young children and I feel like I am cheating them out of a lot because I can't take them to a ton of places. I've been trying to discuss the side effects with my cardiologist to see if there is a better way to manage things or any other medications to try. So far he's good with medications but not so good at listening to what else is going on. My next appointment is in a week and a half... we'll see how that one goes! At this point, I still consider myself lucky that I actually got a diagnosis after YEARS of complaining about my grey-outs and being told that "low blood pressure is good, eat more salt."

SOOOO glad I joined this board! I am learning so much, like that my excessive thirst is normal! Well, normal for a person with POTS, anyway. And now I even have a few tips to try to relieve it.

Yeah, that pretty much sums it up! Crappy in general. No one else understands it. I've tried a million different terms to describe it, but no one gets it. Ok, glad I took myself off of it. Now I have to get back to my cardiologist for some other options.

I tend to find that my side effects never match what the medications list, and maybe that's just another one of the lovely side effects of POTS! My cardiologist put me on a low dose of Florinef about 2.5 months ago, and I started feeling extremely hypothyroid (extremely fatigued, constipated, brittle nails, getting sick constantly). I called my endocrinologist and had her run the usual thyroid panel, which showed my thyroid was well within the normal range, so I concluded that it had to be the Florinef. I read through all of the info I could find but didn't see any of these symptoms listed, but since I took myself off of it I have been feeling better. POTS events have returned a bit (still mostly controlled by the beta blocker - Florinef was meant to be an added bonus) but I have to weigh the rest of my health. So, what other side effects does everyone else get? Thanks! Rachel

Hi everyone, My name is Rachel and I'm a 32 year old mother of 2 (ages 2 and 4). I was recently diagnosed with "mild POTS." I believe I've had it all of my life but have learned to compensate for it (or feel the episodes coming!), although the episodes and accompanying symptoms have gotten worse in the last few years after the birth of my children. I've always had low blood pressure, so even my tachycardia events don't register as much to sneeze at since they still look like normal BP for most people. I've only actually blacked out once in my life and that was when I was a kid. Other than that, I can feel the events coming and I either sit back down or steady myself until they pass. I have tons of side effects though, many that I had no idea were related until I finally found a good doctor who mentioned POTS to me! Chronic fatigue and inability to do much physical activity, migraines, cold all the time, restless leg syndrome, etc. On top of that, I'm hypothyroid so I already have a compromised immune system and have to carefully watch my thyroid levels to be sure that that is not contributing to my symptoms. So, on to my questions... Do many of you find that stress in your life really wipes you out? For me, it seems like any little stressful event will send me to bed for a week (not that I can take a week off of work or from my kids!). Also, did anyone start out "mild" like me, and progressively get worse? Is there any chance that I will just stay mild? Not really familiar with how this works. Any advice or words of wisdom that you'd like to share are appreciated! Thanks! Rachel