jhjd

I've gotten "better" since my diagnosis. I live a "relatively normal" life now. There definitely are still days that I feel sorry for myself, but overall I try to appreciate life and be upbeat, knowing I'm more fortunate than many people in this world. But there are still days that I get really scared. For instance, I've got this ridiculously busy week leading up to a beach trip, and I'm just not sure how I'm going to handle things. I'm an attorney and, while my firm doesn't expect 60+ hours every week, it is accepted that it sometimes is necessary, and you're expected to handle it. So far, I've been able to do what needs to be done and then just crash for a couple of days. But every time it happens to me, I get so worried that I'm NOT going to be able to do what needs to be done, but instead just collapse one day at work or, worse, while driving home. I've already been at work for about 12 hours today, and won't leave for another hour or so. Then I need to be back here way early in the morning. Now, fortunately, I can work with a laptop, feet up, plenty of salt, water, etc. And, of course, the fact that I'm able to do it at all is a sign of my being better than I was. But it's still frustrating right now to see other people be just fine, knowing that the best case scenario involves me sleeping for 20+ hours to try to recuperate. And the worse case scenario is tripping off a full-scale attack. But when I've voiced my fears to my dr., I've been told that "there's no reason to think that will happen." But we all know that's wrong. I just don't think that the medical community sufficiently acknowledges the fear of everybody living with a chronic condition - that is, that you won't get better, but will either stagnate or slowly decline. Yes, it's good to keep hoping and searching for a cure. But what they don't seem to realize is that there's a comfort and peace in having your feelings and fears validated. In fact, that's sort of why I'm on here tonight - as I said, I'm a bit scared right now, and getting on here makes me realize that I'm not just the freak in the office who can't put in a 15 hour day! : ) So, I guess, thank you all for reading my ramblings!

I definitely catch almost everything, and it tends to be worse and linger longer. Until I hit my teens, I was almost never sick, and only seriously sick once (Strep throat in 8th grade). It started getting really bad in college, which is also when my symptoms got worse. Now, even though I've been feeling better with the POTS, I still get sick so so easily. Furthermore, I always feel worse with the POTS symptoms for several days even after I'm technically "better." I'm actually rather worried because there is confirmed swine flu both in my city and in my inlaws' city, where we just were. It's not that I'm that worried about the Flu itself - but we're supposed to go to the beach this weekend, and I would be really mad if I got sick!

Full out fainted several times and got dizzy for all my life, but it was chalked up to being overheated (the faints always occurred in warm weather), ear infection, sinus infection, or being 'just klutzy' when I fell b/c I was actually light-headed. Symptoms got worse when I was 18- told I had IBS, just wasn't taking care of myself, had problems adjusting to college life and was stressed, panic attacks, had "just a little virus" that, when I kept going back to student health b/c I couldn't regulate my temp and was tired all the time, was classifed as mono, and just generally had a weak immune system (which is true, but still...). Then, in law school, it was discovered that I had a lot of ovarian cysts- so then I had PCOS and a range of unspecificed endocrinological disorders. Finally, at age 24, went to see a WONDERFUL specialist endo who ran a full battery of tests, BELIEVED my symptoms, and said yes, you had some ovarian issues, but that's relatively normal. You shouldn't be feeling like this, and I'm sending you to an autonomic disorders specialist because I think you have POTS. Lo and behold, he was right.

One thing I would say as an employment lawyer is, when you're looking at FMLA leave, remember that you have to have worked 1250 hours in the last year to qualify...so if you take too much FMLA leave one year, you may be setting yourself up to not have worked enough the next year to qualify. Also, make sure to check and see how your employer defines "year." It can be calendar, but it may also be rolling, fiscal, etc. Instead of taking time off, have you thought about seeking reasonable accomadations under the ADA? This can include things like a later start time, or being allowed to take a nap in the middle of the day, or brighter lights, a special computer screen, etc. Ask your doctor if there's anything practical he thinks would help you. In some cases a reduction in hours may be classified as a reasonable accomadation, but it sounds like that may be iffy given your workload. Finally, if you really can't work- and you need to be honest with both yourself and your employer about this- I know this is really hard to do, but it's better to start the disability process sooner rather than later, as it takes a long time Good luck!

I'm sorry you're feeling so bad. I just wanted to say that yes it can get "better." (And I'm kind of guilty here because I was on here all the time when I was feeling really sick, and then dropped off when I started feeling better.) Of course, better is, by definition, a relative term. Our collective reality is that we are living with a chronic illness. But, for example, the fatigue has changed to tiredness, and sometimes even that goes away. You can do an awful lot of things when you're just a little tired that you can't do while you're truly fatigued, and I'm glad for the chance to do them. Sure, I flat out fell asleep at a bar the other night where I was attempting to listen to a band- apparently, at some point, I turn into a pumpkin and just physically can't go on. But before, I wouldn't have even been able to go in the first place. (Actually, it's a funny story- A waitress came over and asked if I was okay. D/H apparently said oh, yeah, she's fine and no, she hasn't had too much to drink- she's just got POTS and needs to rest for a second. You can imagine what she though he said I had. I had to wake up and explain what he meant). And, of course, I have a lot to be thankful for anyways, so I try not to complain now. Also, I'm not sure why I started to feel better. Part of it is definitely that my med combo started working well (course, as I posted before, that's a difficulty now as my toprol xl has been recalled, but that's another story). Part of it is that I've learned a lot about what I need to do to stay feeling okay and the lifestyle modifications that were hard at first have just became normal (working with my feet up, drinking enough water, vitamins, all that stuff). But some of it is just a mystery- the fact is that we still don't understand the autonomic system all that well. We don't really know why it goes 'bad' in some of us - and we don't really know why it turns 'good' again. Sure, we know some stuff that hurts and some stuff that helps, but the rest is a mystery. Bottom line though- there IS hope!

thanks ajw- yeah, I tried three different doses of atenolol over the course of a year, and it just really didn't help. It did, however, make me gain 30 lbs. Right now, in addition to the BB, I take 20 mg lexapro, Sprintec bcp, a multivitamin, a calcium + D supplement, a super B supplement, an omega-3 supplement, and a "relaxation supplement" containing valerian, evening primrose, melatonin, and some other stuff that I can't remember. I think the extra B vitamins have helped a lot with energy and the relaxation stuff has helped a lot with the tachy and the twitchiness. I wouldn't say that I'm cured or "normal" (whatever that means)- but it had gotten so much better. After speaking with my doctor, I've been told that part of the problem is that our bodies simply do not react well to change of any sort, so part of what I'm feeling isn't that the medicine isn't working per se, but that the effects of the medicine are being counteracted by the effects of the change. It also isn't helping that I'm doing this right after discontinuing almost daily pain pills for torn ligaments in my ankle from a bad fall. So I'm going to try to take her advice and give it a while longer...

I should have said that I'd also be interested in any other meds that people have found have worked for them as well as other bbs. I feel like I'm back to square 1 here with the meds...this change is really bothering.

Hi everybody! I haven't posted in quite some time- we've had some life changes (a move, new job), but I've actually been feeling about as good as I can remember feeling for literally years...until now, which is why I'm posting. Hopefully some of you will be able to help me. After playing with a few beta blockers and dosages, I was doing well on 50 mg of generic Toprol XL at night (along with Lexapro, vitamin supplements, fluids- you all know the drill). But now, as I'm sure some of you know, there's a serious toprol XL shortage (more info on why can be found at: http://blogs.wsj.com/health/2009/01/28/gen...vartis-and-kv/). Anyways, I've had trouble even finding the branded stuff, not to mention the fact that insurance doesn't want to pay for it, so the dr. switched me to 25 mg of generic Lopressor 2x a day. I've been on it since Thursday (today being Sunday), and it is simply not working well. I've been having serious peaks and valleys throughout the day. Plus, I've been once again feeling extremely out of it, exhausted, poor circulation through legs, dizzy, chest pains, heart pounding, headaches, etc. She told me to give a week, but it's just not getting any better. So, my question is: has anybody else had to switch meds and, if so, how is it affecting you? Does anybody have any suggestions as to what I could take that would maybe still be an extended release, or simply not have the up and down effect Lopressor seems to have? Thanks!

So today is a really bad day for me. Yesterday, I was up at 3:50 a.m. to get ready in time to get my niece at 5 so that her mother could be at the hospital with my f-i-l before his heart surgery. I was at work by about 6:20, worked till 5, ran errands, went to a young lawyers' thing, went with dh to visit f-i-l in the cardiac ICU (which made me very shaky because my grandmother passed away in there 2 weeks ago and, although the situations aren't the same, the atmosphere was), picked up dinner, did two craft projects for dh's Xmas party tonight (long story), and finally collapsed into bed at 11:30, where I couldn't get to sleep because of the tachycardia. I got through it on pure adredaline, caffeine, and eating McDonald's high-sodium crap for every meal (yes, i know it's bad for me, but it was good at the time). This morning, I am now really really really dizzy, tired, foggy, having serious chills and fever, and my left big toe, which of course I stubbed by running into a door two days ago, is killing me- I'm pretty sure it's getting infected because it's all red and swollen and, having already had a bout with cellulitis, I'm not eager to repeat the experience. Now, I know that I am much luckier than many, including myself a few years ago, to have been able to do all of that without quite literally falling over in the first place (yeah drugs!) And I know I was stupid to have pushed myself beyond a limit where even "normal" people would be tired. But it's so frustrating, because it's like all of it had to be done. And, for a little while yesterday, I was starting to think to myself "oh, this is fine, I feel fine, gee I'm cured." But then today hits, and reminds me that no, I'm not. Even though I've gotten better since my diagnosis, and even though I know that many people would love to have my limitations, there's still this fact that there is this finite limit to what my body can do that other people just don't seem to have. Being in a profession (corporate law) where being weak is not okay doesn't really help out either. (To get sappy for a second- this is why you guys are so great for me. It sometimes feels like the one place where not being okay and actually being myself is accepted. Plus, you all are just such awesome inspirations.) Alright, I'm going to try to go back to work now and stop feeling sorry for myself. Thanks for "listening."

I really like Kashi Heart to Heart blueberry (although I add extra berries, either dried or fresh, to it!) Sort of the same thing with your special k- higher protein then a lot of cereals, plus fiber and vitamins. Now, if they would just add back in the sodium, I'd be great. Oh, and a Diet Dr. Pepper. I cannot live without my morning Diet Dr. Pepper.

I absolutely love the substitution of gatorade for tang in the tea!!! We always called that stuff friendship tea, but whatever you call it, it's absolutely perfect this time of year! The only problem is that now the plain old Lady Grey I'm drinking (wearing my fingerless gloves, natch ) seems sort of blah in comparison! I may have to run out at lunchtime and fix some... And the pets thing is absolutely true. Whenever I don't feel good, my babies (dog and cat) always help just by curling up beside me. If only the puppy could figure out how to open the door to go potty by herself so I wouldn't have to get up, it'd be perfect. It is true though that I've learned a lot of tips from this board. And I've learned that stuff I have always done instinctively, like fidget constantly, is "normal" and has a purpose. So thank you all!

I do- it's a real, honest to goodness ottoman. Leopard print with fringe! You can't see it, since the front of my desk is closed, but it makes me happy to have it under there. Another help I've found recently: fingerless gloves from Target. Since my employer insists on keeping our office at arctic temps, they allow me to keep typing without my hands freezing and cramping up.

Chik-fil-a! I used to work in a building with one in the basement, and, besides being really yummy, the nuggets are high in sodium but not (that) high in calories or fat (comparatively to other fast foods, obviously). Whenever I was feeling bad, I'd go snag some for lunch, along with a big glass of diet lemonade (and, if being bad, waffle fries), and I'd feel much better!

Last time I flew, I had my doctor write a "To whom it may concern" letter talking about my condition and how I needed fluids, etc. I didn't end up needing it as I had a nice flight attendant who took care of me, but it was a comfort- this may be particularly true for you, since you're going to be flying in a busy season, and may be subject to delays. (Being stuck on a tarmac could really be bad for us). Good luck!

Let's see...I, too, am actually thankful for my health, because it could be a whole lot worse. Plus, I'm thankful for having health insurance that gives me access to physicians and drugs, and I'm thankful for living in this time, when such things exist. I'm thankful for my family (especially my husband), and for great friendships. I'm thankful for having all my needs and at least some of my material wants met on a daily basis. I'm thankful that I've had the opportunity to pursue my dreams, and I'm thankful for the dreams and hopes that I have for the future. Having listed all that stuff, and realizing how many people in the world don't have what I have, I suppose that the biggest thing is this: I'm thankful to God for providing all of this, even though He knows that I don't really deserve it any more than anybody else! GREAT POST!!!

I haven't taken any supplements, but I would recommend the new cheese with probiotic in it. I think Kraft makes it- it's little prepackaged things of cheddar, and they really taste pretty darn good. They helped me through a recent round of serious antibiotics with less GI issues than I would normally have had. Of course, there's yogurt with the same stuff in it. I don't happen to like yogurt all that much, but I understand that, if you do, it's pretty good too. [Edit-But, um, that probably wouldn't work, since I realized you had also just posted about going dairy free. I'll be interested to know if anybody has any supplement ideas, since I don't know if I can eat the same cheese every day!]

It very much depends on the circumstances whether I find it annoying or not. I've often found that, once you start discussing health issues with somebody, they're going to feel more comfortable sharing with you in turn. This is particularly true if, like us, you're more familiar than the average bear with the medical community and coping strategies! Also, I think there is, as dari said, an impulse there to connect and understand/reassure both parties in the conversation. This is particularly true with family members, who sometimes can't really admit to themselves how bad you may feel because it would upset them too much. Remember, denial is not just a river in egypt! And, hey, to give people the benefit of the doubt- maybe they've really got some sort of chronic condition they want to share! But, yeah, sadly, sometimes people either don't believe you or get jealous of the 'attention' you get. If I'm being smart, I try to just separate myself from them. When I'm not smart (or I can't separate myself), I'll normally end up throwing a few snide comments in there. What I should probably do is act all gracious and use it as a teaching opportunity ("why, yes, I work very hard to carve out time to spend with my husband. You may notice that I'm drinking gatorade- the sodium in it raises my blood pressure so that I don't have an episode of syncope). Maybe that'll be my resolution for next year...

hmmm...I personally would probably actually disclose. Not doing so could be considered falsification of records. Then I would explain that you have been diagnosed with it and are being treated, so that it shouldn't be a problem. Reference your past academic records, and your position as a pastor. Just my two cents...

I gave my employers some information about POTS, and explained how the extreme cold in my particular windowless office (it was down around 60 degrees in there, even though the thermostat was set to 73) was negatively affecting my health and, therefore, my productivity. (It's really hard to type when your hands are turning blue). We discussed a heater, and they're checking to see what circuits I'm on to determine whether that's going to be safe. I think I may end up with an electric blanket instead, as it will use less power. The vent in my office is now mostly blocked off. Roselover- I'm also going out today to get some of the microwavable bags. I've seen them before for injury purposes, but for some reason it never dawned on me that they could be used just to get warm! Great idea! The problem, of course, is that 1) it's still cold; and 2) the cold set off symptoms that I'm still suffering from- not to mention the fact that I swear it made the cold that I was almost over worse! Nonetheless, I'm lucky to be working in an office and industry where they're sensitive to these sorts of issues. After all, it'd be pretty bad if a law firm ended up with an EEOC complaint! (edited because I had a and b where 1 and 2 currently are, and apparently a b and parentheses gets you the sunglass smiley face!)

I'll do it! How often do you need the information taken? I'm in Huntsville, AL

So despite the fact that it's now solidly fall outside, my office continues to run the air conditioning on the principle that 'the servers must come first.' Although the claim is that it's set on 73, the fact is that the thermostat is actually right next to the server, and so picks up on its heat and runs literally almost all the time. I have one of those little decorative thermometers in my office that is now reading 68 degrees! The end result of this is that I'm wearing a skirt, shirt, and sweater and have one polartec (the serious heavy outdoor stuff- no cheap fleece) and one sweatshirt-type material blanket over me, drinking endless cups of chamomile and decaffeinted lady grey tea, and can barely function because of the cold. My autonomic symtoms are kicking in big-time- tachycardia, dizziness, fatigue, brain fog; my hands are turning colors, and I've been alternating between low and high temps- 95.6 to 99.6. Needless to say, all of this makes it difficult to work! My plan is that I'm going to go talk to the powers that be about the fact that I either need to move offices, have a heater, work at least half the day from home, or some other sort of accomadation to continue my employment. What I would really appreciate is some verification about cold intolerance. If anybody has any resources, would you please share them- and yes, I'm running a forum search too ! Also, if you have any suggestions about potential accomadations, please share those as well! Thanks!

I've definitely noticed this- the obsession with high blood pressure is all around us. Those little blood presssure checking machines at the pharamacies don't even post a low blood pressure range, and I've run into more than one nurse who's congratulated me on my low blood pressure when it was 102/68- which is a bit insensitive since it's a real struggle to keep it up there, and I'd love to get a few more points if I could! In fact, several weeks ago, I had posted a letter I wrote to the editors of a health magazine who had published an article discussing the merits of cutting out salt completely, asserting that it was the only way to live! The last thing I want to do is minimize the problems of high blood pressure- for people who have it, it's real, it's dangerous, and it makes you feel like crap. But I feel it's become something like fat and cholestorol was about 10-20 years ago...people just blindly think 'lower is better,' without realizing that, without it, you're literally dead! Just like the revelations about good fats and cholestorols, we'll hopefully get to a place of moderation. The trouble, of course, is that until then, those of us who are diagnosed with low blood pressure will have a harder time getting treated and, even worse, there will be lots of undiagnosed people out there eating low salt diets and feeling horrible.

So the decision has been made to increase my Lexapro up to 20 mg (from 10). She's told me in the past that they don't know why Lexapro, etc. works well for some people's autonomic disorders, but it does. The reaction between all your brain chemicals and systems just isn't well known. I suppose we'll see! Meanwhile, I'm trying to get a pcp appointment as well.

Ever since I've had cellulitis, I've definitely noticed a worsening of my symptoms as I try to heal. I know this is completely normal that the sort of stress that was put on my body would cause this, but it's still very frustrating. Anyway, my main issue is that one of the worsening symptoms is brain fog. I'm an attorney- I can deal with most of the physical symptoms b/c my job isn't physically demanding, and I have very nice employers who gave me an ottoman for under my desk and are very understanding. BUT, this new job is more demanding time-wise than my old job was. Plus, I'm trying to learn some new areas of the law, and that's difficult. So this brain fog thing- even, really, my old levels of it-is just not okay at all. I have a call into Dr. Moore in Birmingham. She'd talked about adding some more meds, specifically klonipin, to my treatment to make me overall feel better, which would help. I also asked the nurse about adderall, which I took some in college, but she said that they don't normally prescribe that because of the close monitoring that it requires to get the dose right, and that they prefer your pcp to do it. What else do you all do to help with this issue? If there's something I hadn't thought about, I'd like to be able to ask her.

I am not a doctor, but I'm going to play one on TV for a second... In general, it's beneficial both for individuals and society as a whole for as many people as possible to get flu shots. This is oftentimes particularly true if you're at risk for complications from the flu- i.e., children, the elderly, pregnant women, people with chronic conditions, and caregivers, including teachers. My understanding is that the main medical reasons to not get a flu shot would be 1) an allergy to eggs, or 2) a compromised immune system. It sounds like your main concern is that your immune system is compromised from being sick. In that case, I'd probably wait until at least your pcp says you're better enough that it won't negatively affect you. But I obviously don't know your whole health history, and Lord knows that ANS issues seem to hook into all the other systems in our bodies and do funky things. So, if there are other ANS issues indicating that you would have a bad reaction- like poor reactions in the past to shots-then I'd go ahead and call your specialist. Whatever you decide to do, the people around you defintely should get the shot, if they can (especially if you choose to forego it). Also, as Sunfish mentioned, the flu shot only protects against the scientist's best guess at what this year's flu is going to be. Now, we're getting very good at doing this, but it's not perfect. So, you need to continue to take all other precautions, like handwashing and cleaning the germ 'hot spots' in your house- telephones, door knobs, faucets, etc. It's actually generally better not to use antibacterial soap though! A weak bleach mixture is all most people need for disinfecting, and most people don't really need to disinfect that often. Hot water and soap gets rid of pretty much everything. Alright, so I'm sorry for the long post...I got on my public health soapbox (get it- 'soap' box? ha ha) for a second.