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I work full time as well. Like the others who do, it seems desk jobs are crucial to this. Other helpful coping mechanisms- plenty of water, wearing layers and having an under-desk blanket to keep my fluctuating temp under control, being able to put my feet up when I need it, being able to close and lock my office door and nap when I need it or just sort of keep to myself and not have to pretend to feel well (if I couldn't do this, some days would just be waaay too much. There's only been 2 episodes thus far where office-mates have seen me potsy- once when I fell out of my chair and landed in my trashcan in front of my secretary in a presyncope episode, and once when I was seriously tachy and shaky during a meeting to the point where my boss had to open my sprite for me. I'm lucky on two fronts- first, I'm really still quite functional, and second, I have the privacy and freedom of a professional position so I can manage my time and tasks according to how I feel most of the time.

I'm sorry, but I think they're probably right about the FMLA, which *****. However, have you looked at any possible issues under the ADA? Have they refused your requests for accomodation besides time off work? Also, you said that they hired you with an understanding of your medical condition- did they tell you at that point that it would be okay? These are all issues that, if you choose to pursue it, a local lawyer may be able to help you with. In addition to the federal remedies, some states have greater protection/fraud laws in place. I don't know your situation or your local law, but I'd say it may be worth a consultation with an employment lawyer- try contacting your local bar association or disabilities advocacy program for a reference to somebody specializing in disability/employment law. They can tell you what your options are and if it's worth pursuing a claim of some sort. Good luck!

Just plain old orthocylcen (not the triphasic kind) seems to work best for me. Plus, you can get it as a generic, so it's much cheaper!

Thanks everybody! All of your comments sound right on target. It's not like I lose consciousness- but it's like I'm not part of the outside world. I can see it- but can't reach it. I've always gotten that a bit, and had dizziness and lightheadness, but it's been here recently that it's progressed quite to this point. Before it was like extreme brain fog and dizziness, but I'd be able to deliberately sit down and it would pass. Just glad to know I'm not the only one.

I actually just awoke from my midday at-my-desk nap with heart racing and shaky. I'm starting to find that I can tell when I'm going to have a bad day because, the night before, I'll be really hot and have trouble sleeping. I much much prefer the cold thing- it's more normal, and, while I may be tired, I'm not as sick. It seems that most people here hate the heat worse then the cold. Is that right?

And here's a second question- DH is concerned that I actually did in fact faint- I think I got dizzy and fell. Cause if I remember falling, I couldn't have fainted, right? (He says yes, because I didn't trip on anything and don't know the actual 'cause' of the fall). The so-lightheaded-I-fall thing is new to me, so any help is appreciated!

Monday night, despite having not felt good Sunday or that day, I decided to take my dog for a brief walk around the neighborhood. (Yeah, I know, I know- but she'd been boarded all weekend and I missed my baby- she can actually help with the symptoms sometimes too.) Anyways, I barely made it back home and ended up very dizzy and weak and basically just fell down. I didn't lose consciouness, but I did 'gray out.' After picking me up and helping me into bed, my husband said my eyes looked very "weird-" dazed, with abnormally small pupils. I always thought your pupils dilated in times like that. Any thoughts?

I started straight on 10 mg Lexapro a couple of years ago. At first, felt almost hyper- heart racing, etc. Then had awful pain in my spine- not back- but spine through the base of my head and down. Very foggy, and hard time sleeping for a few days. Then it just went away. One morning, I woke up, and bam! It was gone. A couple of weeks later, I started to notice I was feeling better. Nothing really drastic, just a little bit better, and a little bit better. Looking back, I'd say it was worth it (though i'm now starting to wonder if it doesn't need to be upped a little bit).

1) Jamie 2) 25 3) POTS, but still being confirmed- d'xd by RE, but going to see specialist for confirmation. Before that it was severe PCOS, aggrevated by only having 1 ovary. Had surgery and confirmed massive amounts of cysts- scraped out and treatment applied. Told that most of symptoms (fatigue, light headed, fever, etc.) were due to hormone imbalances. Finally referred to excellent RE who said that my hormone levels, with the exception of immediately post-surgery, were fine and that I didn't fit PCOS 'profile.' Sent me off for echo, additional testing. Apparently nobody thought to check hormone levels before blaming them for symptoms. 4) 24- symptoms going on since 18. 5) Montgomery, Al. 6) Fatigue, brain fog, bouncing around temp. (from 97 to 99 in an hour, then up past 100, then down to 96.5, while I shiver and sweat), nauseua, lightheadness to near-syncope (but have only fainted once), chest tightness, muscle aches. 7) Basically normal on good days provided I've gotten enough sleep, drink enough fluid, and don't get up too fast. 8) not tried pots-specific meds yet, as RE didn't feel comfortable with prescribing 9) lifestyle stuff you all know about, Lexapro.

probably 1 in M (maybe 2). Depends some on price.

Surfing around their website and found that they link to both this site and NDRF...that made me feel a little bit better, like maybe I'll be taken seriously (unlike, apparently, the Cleveland Clinic). But I'm worried because 'lifestyle modification' is their first listed goal- before meds. Which may indicate a 'blame the patient' attitude like has been discussed here and like I've encountered before on a variety of issues.

So I *finally* have an appointment scheduled for August 10 (boo on it taking so long) with Dr. Paula Moore at the Autonomic Disorders/Mitral Valve Proplapse Center in Birmingham, AL. Have any of you all been to the clinic or seen her? What did you think?

Bless your heart! It's hard for doctors to understand this, let alone family members. I think it's hard for the people (particularly husbands) who love us to understand that there's no 'why,' and there's no way to 'get better' and life is going to be unpredictable. They want to fix it and can't. Anyways, this is a good place- just even to 'surf' the posts can help you realize you're not alone. Welcome!

I do the wrong word thing ALL THE TIME. I'll blank on a word, or use the wrong word, or get 'distracted'- Like if I'm talking to DH in the car and see a sign, I'll say the word of the sign instead of the next word in my sentence. So we have dialogues like this all the time: Him: "How was your day?" Me: "Oh, it was Applebees." Him: "You went to Applebees?" Me: "No, it was...um..you know...(making frantic handgestures, finally settling on a thumbs up) fine! It was fine." Drives both of us crazy. I got an 800 on the SAT verbal part (old scoring system, obviously) and now I tell him my day was Applebees.

this is going to sound silly, but have you tried the kid's chewable vitamins with extra minerals? Just the old fashioned flintstones. I started taking them when I was dx'd with IBS 8 yrs. ago. A lot of adult vitamins actually give you over the RDA, which is fine for some people, but was causing my stomach to hurt. The kids vitamins give you enough without the side effects.

Emetrol (OTC) works for me- it's basically pure sugar, so it may not help everybody, especially if you've got carb issues. Another thing that helps me is dark chocolate- for nausea and just about everything else! Try different positions laying down too. I find on my back with my legs up really helps, but on my side will kill me. I know ginger is supposed to be great, but I just can't stand it. Real ginger ale, a little flat, does work. I was told by a doctor also not to drink through a straw, or at least be careful (despite the fact that's what they tend to give you in the hospital). It can make you swallow air, which can make matters worse.

Thanks for everything! Unicorn- you didn't make me mad. I'd be upset if I had to deal with those jerks as well. I enjoy this forum so much (both reading and posting) because, when I'm feeling crappy and I'm tired of trying to either explain away or lie about my symptoms, I know ya'll understand. Even if I'm not involved in a discussion, it's just nice to know that there's people out there who 'get it.' Ya'll are right- I am going to talk to my doctor when I go back to him. I think my 'pride' problem is that, if I get the pass, I can't just use it when I need it- at least not at work. I have to take it over to facilities management, explain to them what's wrong, and get a whole new parking space and access card assigned. But you all are right that it's not worth it not to. The other morning I came in, really dizzy, and flopped in my chair with my legs up on another chair. Then my secretary came in and I tried to stand up- failed miserably- and ended up falling with my head landing in the trash can. She, bless her heart, was trying not to laugh at me, but we eventually both just couldn't help it. The thing was on my head! I've actually been referred to a new doctor, so we'll have to see how it goes. I've not tried any medicines yet- I may have posted this before, but I was REALLY convinced that I had a particularly bad case of PCOS- I had surgery and everything. (And before that it was IBS, and then maybe anxiety, and was I sure I wasn't using any illegal drugs? You know how it goes). So I finally got referred to a RE who took one look at me, believed I was sick, and sent me straight over to cardio, where they started running tests. He diagnosed me with POTS, but said he wanted me to see a specialist about meds, etc. I haven't been yet because I just graduated from law school, got a new job, and (the best part) better insurance. My RE stopped short of ordering the formal TTT so that they couldn't say POTS was preexisting, and we've been waiting for me to get all the insurance documentation to go to the new Dr. I'm just hoping he's as nice as my RE. And, incidentally, I've been meaning to post this about legal services. Most states/communities have disability advocacy programs (I've worked for the one here in Alabama) with both legal and social work arms. If you're having a problem, I'd encourage you to get in contact with your state's office. If they can't help you directly, they can probably refer you to someone who can!

I really shouldn't complain, but I'm about to. I'm probably luckier then a lot of people here in that I'm able to lead a fairly normal life. I'm an attorney with the state of Alabama, and so get to sit down a lot of the day and both my secretary and boss know about my condition and are very helpful. But the problem is getting to work. I live in Montgomery, AL, where it's already in the 80s by the time I get to work at 8:30 a.m. and I have to park SEVERAL blocks away AND up a hill. Mornings are always the worst anyways, and by the time I make the walk, my heart is pounding and I'm shaking, lightheaded, and dizzy. I have to lie down in my office before I can actually DO any work. I don't want to get a handicapped permit, because I'm actually doing pretty well and wouldn't consider myself disabled, but it looks like it's the only way I'm going to be able to get into the adjacent garage (spots are limited and assigned on state seniority). Do ya'll have any advice on how to go about getting the permit?

You need to get tested for testerone/estrogen levels. And also be aware that there are different thoughts on what comprimises PCOS- I, for example, have tons of ovarian cysts (even had them scraped out via a painful surgery), but have just recently been told that it's NOW considered (as opposed to 3 yrs. ago, when I was dxd) a hormone disorder. Course I think it may just be an excuse for the fact that they didn't know what the heck they were doing, but whatever.

There was a great episode of Golden Girls that was rerun just a couple of days ago on Lifetime (yeah, guess who's spending time on the couch instead of out doing things. Bah). Anyways, Dorothy is sick and finally sees a specialist up in New York where's she's diagnosed with Chronic Fatigue. She goes back to the dr. who told her she was just getting older and maybe depressed about it and tells him (and this isn't an exact quote) "I wish all doctors would get very sick and very scared just once in their career. Then you would know to listen to your patients."

Hey- just thought I'd share this with you all. I've given this to both my boss and my secretary to help them understand what pots is and why I am sometimes seen rolling around the office in my chair instead of standing up or send emails to them when they're just down the hall! It's a good non-medical jargony article that emphasizes 1) the unpredictability of the disease and 2) the fact that it's a real disease. Interesting bit about how people have ALWAYS had these symptoms and it's been called different things over the years. Gives you something to rebut people who talk about new "made up" diseases. http://heartdisease.about.com/cs/womensiss...s=POTS+syndrome

The wave thing is def. true! I was very sick freshman year of college- then better, but still have bad days for about three years- then was very sick and mis (?) diagnosed with PCOS- then finally got better- then got worse this past spring (which, now that I think about it, was three years after the second attack), which sent me back to the whole round of doctors and the POTS diagnosis. The thing is, it's not like you're just ever 'cured.' Because even when I was relatively asyptomatic (sp?), I always was more sensitive to temp., tired more easily, easily got colds/flu/etc. that would knock me out- basically 'normal' things were just always harder then they seemed to be for others. People would tease me that I'd get horrible hangovers nobody should get from the little I drank- but it was just because going out would totally wipe me out. If I'd gone to a doctor then, I would have probably just barely "passed" the ttt/echo, but it's not like you're normal. But I think you do learn how to handle things better and prevent the lowest of the lows.

Funny you should mention that. I was originally diagnosed with PCOS 3 yrs. ago after being sick and going through ovarian surgery, where they found that I had a lot of cysts on my ovary. So I went along with that diagnosis for several years- the surgery did make me feel better, but had a hard time recovering and wasn't quite myself. Then I was fine for a while- just got tired pretty easily- then it hit me pretty badly this past spring. Started gaining weight, being EXHAUSTED, dizzy, tempature fluctations, etc. I went to my Dr. thinking I needed my bcp changed to accomdate changing hormone levels (which happens with PCOS), and all of a sudden I'm seeing a cardiologist and being told I have POTs! So, I think they've almost officially 'undiagnosed' me with PCOS (which I don't understand, as they had my ovaries RIGHT THERE in front of them at the time) and re-diagnosed me with POTs. This is on the theory that the main sign of PCOS is not polycystic ovaries, as the name might suggest, but rather severe hormonal imbalances- particularly in re: too much testorone, which I don't have. Bottom line- I don't think the health community knows WHAT they're talking about, particularly with women's bodies.

I had ovarian surgery with a big ol' C-Section type cut two years ago...took me for EVER to heal up (this was pre-POTS diagnosis, but I was sympotomatic. The surgery was actually partially because of my symptoms, but that's another story). I had pain and weakness long after the incision had 'healed.' Anyways, abdominal surgeries are particularly stressful on your body. And one of the most important things that help the body heal is adequate blood flow- something we struggle with! If there's an obvious sign of infection (fever, redness, etc.), or if you really are concerned about something, then do what you did and go to the doctor. Otherwise, I'd say just know it's going to take you a long time to heal completely. Maybe ask if there's something you can do to help speed healing, like a warm compress. Incidentally, DH, who is for the most part very healthy (knock on wood), had a laproscopic gallbladder removal, and still got 'twinges' from it weeks later, even though everything had healed up! So you're not abnormal at all. Good luck!

Sorry you felt that way- you def. did the right thing by pulling over! I find that when I have to wake up quickly (i.e. I've overslept), the sort of adrenaline surge or whatever it is that goes with it makes my heart start pounding and my head start spinning within a few minutes of getting up (though it's normally enough to get me dressed and out the door quickly, so I guess it's a double-edged sword). Don't know if it's adrenaline or hormones, just standing and moving too quickly, or a combo of both. I'll be interested to know how you feel with the meds- I haven't gotten any yet (still waiting for my new insurance card to arrive), and I'd like to have more opinions before I go back to the Dr.